Home-ICT as a tool to stimulate empowerment for clients with long-term psychiatric problems

Home-ICT ICT as a tool to stimulate empowerment for clients with long-term long term psychiatric problems

Esther van Loon Master Thesis Health Sciences

Home-ICT as a tool to stimulate empowerment for clients with long-term psychiatric problems

An explorative study of the interests and expectations of clients with long-term psychiatric problems, in ICT supportive tools to enhance empowerment.

Esther van Loon Master thesis s0161454

Master Health Sciences University of Twente, Enschede Faculty Management and Governance

Supervisors: Prof. dr. N.E.J. Oudshoorn (University of Twente) Prof. dr. R.A. Stegwee (University of Twente) J.G.M. Goeman (Member of Board of Directors, RIBW Nijmegen & Rivierenland)

August 2008


Acknowledgements I would like to thank several persons for their help and support during this project. First, and most important of all, I would like to thank all respondents. Without their overwhelming response and their extensive insight in their lives and thoughts this study would have never succeeded. Next I would like to thank my supervisors of the university: Nelly Oudshoorn and Robert Stegwee for their guidance in the world of science and their positive feedback during this project. From RIBW Nijmegen & Rivierenland I would like to thank Hans Goeman for his feedback, enthusiasm and facilitating efforts making it possible to perform this study. In my private life my friends and family have been a major support for me, during my study and master thesis phase. I would like to mention a few persons in special: Marco, for always staying relaxed in several moments of despair I've experienced; and Karin, for always believing that I too could get my masters degree. From the university I would also like to thank Nelly van Uden-Kraan for her help in developing a questionnaire and her insights in empowerment from her research. And the last person I want to mention is Rebecca: thanks for being so kind to correct my English with a “Dutch touch” into English with a “New Zealand’s” touch. Finally I would like to thank my running shoes. Running around in the surroundings of Arnhem helped me to reorganize my thoughts and relieved me from stress whilst writing this thesis.

Esther van Loon Arnhem, August 2008


Table of contents Summary ................................................................................................................. 7 1. Introduction......................................................................................................... 11 1.1 Background .................................................................................................... 11 1.2 Motivation for performing this study ................................................................... 12 1.3 Scientific relevance .......................................................................................... 13 1.4 Aims ............................................................................................................. 13 1.5 Research question ........................................................................................... 13 1.6 Reading guide ................................................................................................. 14 2. Review of literature ............................................................................................... 15 2.1 Empowerment ................................................................................................ 15 2.2 ICT ............................................................................................................... 17 2.3 Empowering effects of ICT ................................................................................ 19 3. Theoretical background.......................................................................................... 21 3.1 Social construction of technology ....................................................................... 21 3.2 Operationalization of empowerment .................................................................... 22 3.3 Operationalization of Information and Communication Technology (ICT) ................... 23 3.4 Sub-questions................................................................................................. 24 4. Method ............................................................................................................... 25 4.1 Type of research.............................................................................................. 25 4.2 Design of the interview format and questionnaire .................................................. 25 4.3 Selection of participants and response ................................................................ 25 4.4 Data collection ................................................................................................ 26 4.5 Data analysis .................................................................................................. 26 5. Results ............................................................................................................... 28 5.1 Demographic characteristics .............................................................................. 28 5.2 Results by sub-question .................................................................................... 29 5.3 Correlation between several variables ................................................................. 46 6. Discussion and conclusion ...................................................................................... 47 6.1 Methods for embracing empowerment of persons with long-term psychiatric problems 47 6.2 Influences of peers, mentors and neighbours on empowering processes ................... 48 6.3 Meanings attached to ICT ................................................................................. 50 6.4 Opinions regarding ICT technologies as tools to enhance empowerment ................... 51 6.5 Overall conclusion ........................................................................................... 52 7. Recommendations ................................................................................................ 55


Glossary................................................................................................................. 59 Description of participating organization: RIBW Nijmegen & Rivierenland ....................... 59 Rehabilitation approach ......................................................................................... 59 Mentor ............................................................................................................... 60 References ............................................................................................................. 61 Appendix I: The invitation letter ................................................................................. 65 Appendix II: Interview-format ................................................................................... 71 Appendix III: Mailed questionnaire ............................................................................. 79 Appendix IV: Questions as formulated for the mentors ................................................... 91 Appendix V: Results in tables ..................................................................................... 94


Summary Introduction This research has investigated which role ICT can play in empowering processes of persons with long-term psychiatric problems. Empowerment is a concept which is used to describe processes in which persons try to influence their disability and rebuild a meaningful life as citizens in society. Empowerment is in the literature vaguely described and lacks a clear theoretical basis. In this research empowerment will be subdivided in two dimensions: an interpersonal process and a process of community-integration. The first is dealing with psychological and behavioural processes of coping with the disease and the other dimension is about participation; regaining a meaningful role in society. Investigated was, if and in what way ICT can facilitate in empowering processes of this client group. ICT incorporates extended opportunities for information and communication. The access, and the meanings attached to ICT have been examined. The forms of ICT that have been explored were: TV, fixed and mobile telephone, computer and internet. This research was performed in a Community Residence (in Dutch: Regionale Instelling voor Beschermd Wonen; RIBW). Community Residences are bridging the gap between psychiatry and society and focus predominantly on empowering processes. Insights from this study will therefore be valuable in adding to the existing knowledge. The participating organization is interested in developing an ICT-based tool to enhance empowering processes of their clients.

Taking all this together, the research question this study intends to answer is: In what way can empowerment of persons with long-term psychiatric or psycho-social problems be supported by using ICT-based tools? Theoretical background Bijker's Social Construction of Technology approach, in short SCOT, forms the theoretical background of this study (Bijker, 1990). This approach views technology as social construct: technology does not exist without meanings that relevant social groups attach to it. Social groups are groups of people sharing the same opinion and attaching the same meaning to a technology. By doing this they shape the technology. The same technology can have different meanings for different social groups. This fact is described in terms of 'interpretative flexibility' (Pinch & Bijker, 1987). Examining meanings of these social groups can be of great value for choices to be made in the development of the technology. Method In order to answer the research question 814 clients were invited to participate in an interview on the subject. In total 63 clients responded; 49 clients were interviewed and another 14 filled in a written questionnaire (total response rate 7.9%). Data gathered was qualitative as well as quantitative and was analyzed accordingly.

Results

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The main research question was divided into four sub-questions. Based on these four subquestions the results are commented.

Sub-question 1: Do clients with long-term psychiatric problems embrace empowering processes and in what way? This sub-question explored information seeking behaviour, regarding health matters and participation in society. Most respondents are very active in seeking for more knowledge regarding their health which is likely to foster empowerment. Sources most frequently mentioned were the regular health providers (general practitioner, specialist and mentor) and the internet. Most respondents mentioned using several sources which increased the feeling of reassurance and making sure the information is right. Participation in society is a complex matter. Participation is not only being influenced by the respondents themselves though. Experiences of ignorance and negative believes in society were expressed, which are negative influencers of empowerment. On the other hand, lack of competencies of respondents to fit to norms in work and social life make this process more difficult as well. The effort is there though, since the majority has day activities and tries to get in contact with others. Therefore it seems legitimate to conclude that clients do embrace empowering processes by searching for information and attempts to participate in society.

Sub-question 2: Do peers, mentors and neighbours foster empowering processes of clients with long-term psychiatric problems, and in what way? Based on the results it can be concluded that other people have a positive effect on fostering empowerment of clients with long-term mental health problems. Peers were often met in the mental-health field (e.g. Day activity Centre, admission in hospital). The benefit of these contacts are that peers understand one another better than 'non-peers' do. Recognition and pleasant contacts were the most referred to positive aspects, confrontation with own problems was most mentioned as a negative aspect. Mentors seem to be important in order to be able to reflect thoughts, insecurities and experiences. Although not explicitly stated, this is likely to have a positive impact on empowerment. The accessibility of contacting mentors, besides the planned appointments is valued positive, but can possibly be improved. The great majority has contacts in the neighbourhood and these were valued highly. In contact with neighbours other empowering processes play a role, like feeling secure and wanted. Increasing peer contacts and contacts in the neighbourhood was not expressed as a wish of the respondents.

Sub-question 3: What meanings do clients attach to ICT? Meanings towards ICT vary by the medium. Several respondents were surprised by the question of access to TV. This medium seems to be accepted and used by nearly all. The access to computers and internet is less high. The results present great differences in access to computers and internet among respondents. Access can be divided in three groups of approximately the same magnitude: daily users, non-users and the in-between group that uses internet some times. Among the non-users most respondents have never used a computer. Fear of the medium or disinterest is often the reason. Meanings towards computers

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and internet also varied enormously, ranging from complete adoption of ICT to disinterest and anxiety.

Sub-question 4: To what extent do clients view current ICT technologies as tools to enhance their empowerment? Most respondents seem to be interested in an ICT-based tool and some think this will contribute to empowerment. However, several respondents mentioned not to know whether they would use it more than just a few times. Requirements that the ICT-based tool should meet are possibilities for information of the organization and communication with others (also peers). Most anticipated empowering aspects that were mentioned were similar to aspects mentioned prior. Respondents’ expectations that ICT could contribute to reducing feelings of loneliness was not mentioned before in this study. As well as several, specifically to ICT attached possibilities. Summarizing, it can be concluded that to a certain extent empowering aspects are being expected from an ICT-based tool, but as some respondents stated probably these effects will not be all too high. Conclusion This research revealed several elements which are considered to be empowering for many clients with long-term mental health problems. Information seems to be a strong influencer of empowerment as well are contacts with peers. Both of these aspects are primarily reinforcing the interpersonal processes of empowerment. ICT can facilitate in these elements. Enlarging regular, face-to-face, peer-interaction was not expressed as a wish, whilst enlarging peer-contacts

via ICT was mentioned as a positive development. The explanation of this

contradiction can be found in possibilities of ICT. An anticipated benefit of ICT-based tools was that it could be beneficial in reducing feelings of loneliness. Being able to contact others, at other times than regularly possible, is a specific benefit of ICT and was expected to contribute to reducing feelings of loneliness. Another possibility mentioned is that it is more easy to express and share emotions. In this sense, it seems legitimate to conclude that ICT entails specific benefits that foster empowering processes. In the definition of empowerment, the second dimension was community-integration. Interaction in the neighbourhood was satisfying and empowering in the sense of feeling safe and wanted. Participation in broader society, however, dealt with more complex matters. Personal aspects, such as in-competences, and negative attitudes from 'society' make this process difficult. Participation is, possibly even more than the other facet of empowerment, an individual process. It is highly influenced by someone's stability in illness, the personal preferences and wishes and the individual chances. Whether ICT can be beneficial in this personal process is doubtful. This will be interesting to explore, more in-depth, but probably other research methods will be more effective than this one to study this matter.

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1. Introduction 1.1 Background Recovery from a mental illness When you become ill some form of action is needed: you visit a doctor, search for relevant information, take medication or undertake another action which you consider appropriate. If you are lucky the illness cures and you go on with your life. Unfortunately, in some cases it's not that easy, as is the case with long-term mental health problems. When faced with a psychiatric illness, cure is often not one of the possibilities. People are faced with the difficult task to adapt to the illness and rediscover their new position in life. This process of recovery is a personal process, which evolves through falling and getting up again. As Deegan (1988) describes: “Recovery is a process, a way of life, an attitude, and a way of approaching the day's challenges. It is not a perfectly linear process. At times our course is erratic and we falter, slide back, regroup and start again. (...) The need is to meet the challenge of the disability and to re-establish a new and valued sense of integrity and purpose within and beyond the limits of the disability; the aspiration is to live, work, and love in a community in which one makes a significant contribution. (p.15)” Recovery from a mental illness contains specific difficulties. In a book describing recoverystories from people with mental health problems, one of the authors describes: “after the time passes by of being a psychiatric patient, the chances increase that you forget the norms and rules in normal society (…) No longer are the various roles that you used to hold in your normal life; child or partner, parent, employee, neighbour, being appealed on. Your most important role is the role of patient” (Boevink, 2007, p.53, p.24). This process of ‘alienation’ does not concern mental health clients alone, but is affects this group more intense, since a psychiatric problem often intertwines with ones personality (Boevink, 2007; Dickerson, 1998). Increasingly recovery-projects are being developed by clients and ex-clients in mental health1. Sharing experiences and learning from others are central in these projects and are important in recovery processes. Empowerment is essential in the recovery process. (Plooy, 2007). Empowerment is, as will be described in chapter two, dealing with control, acceptance, coping with ones disease and finding a new meaning in life. People who have been through similar experiences (in this study described as peers) are often rich sources of knowledge, recognition, and can be of extreme support.

The importance of the social environment The drive for empowerment among persons with long-term mental illness can be viewed in relation to the process of deinstitutionalization (Dickerson, 1998). This process started in the second half of the 20th century and was aimed to accommodate persons with long-time mental health problems in the community, instead of keeping them institutionalized. In countries, such as the USA, many psychiatric hospitals were instantly closed in the 50's and 60's, resulting in a discharge of numerous psychiatric clients that lacked adequate support (Dickerson, 1998). In

1

See for example the HEE-programma (Trimbos-instituut / Stichting Rehabilitatie '92) and 'Herstellen doe je zelf' (Regionaal Patiënten/Consumenten Platform Midden-Brabant)

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The Netherlands this development has evolved in a slower path. In 1984 the Parliament accepted a policy document2, intended to support the growth of accommodating long-term mental health client in the community (De Heer-Wunderink, Caro-Nienhuis, Sytema & Wiersma, 2007). This development has resulted, anno 2008, in an enormous growth of community-based accommodations and professional care provided in home situations of clients. These developments are seen as very beneficial for many mental health clients in rebuilding their lives as citizens in society. If they succeed, they find ways for decreasing their role as patient whilst increasing their roles as citizen. Several mental health clients experience difficulties in this process, which can easily result in social isolation and neglect (Bauduin, 2001). Support of empowerment for this group entails focusing on the individual needs of clients within their social context and considering personal wishes and interests.

ICT to support empowerment As described above empowerment is to be seen as an extremely difficult, interpersonal process. Besides this personal process, it contains a second aspect which is often referred to as 'community-integration': integration in living, working, learning and social contacts (Bond, Salyers, Rollins, Rapp & Zipple, 2004). Information and communication technologies (ICT) incorporate possibilities that can possibly be beneficial in these processes. The two dimensions in ICT: 'information' and 'communication' can both facilitate empowerment in specific ways. Possibilities for obtaining health information are extended due to the internet, since the internet offers a great diversity in information. This great variability in information can offer something of interest for everyone. Being well informed increases feelings of competence and control, which are important in regard to empowerment (Lemire, Sicotte & Paré, 2008). The 'communication' dimension of ICT is of interest in empowering processes as well. ICT offers complementary possibilities for communicating with others at any time which suits you the best (24/7), without requiring physical presence of others (Van Dijk, 2001). People with similar interests or needs can meet each other 'virtually' online. In this sense a 'virtual community' can have similar functions as a traditional community of friends, relatives or what so ever. Differences are that virtual communities are: “not tied to time, place and other physical and material circumstances, other than those of the people and the media enabling them.” (Van Dijk, 2001, p.159). It could be for these benefits that health information is so often sought on the internet and electronic communities for people with common health care needs have expanded rapidly over the last years (Demiris, 2006).

1.2 Motivation for performing this study This study was performed in cooperation with the Community Residence of Nijmegen & Rivierenland3 (in Dutch: Regionale Instelling voor Beschermd Wonen, RIBW). This organization provides professional care to persons with long-term psychiatric or psycho-social problems.

2 3

Nieuwe Nota Geestelijke Volksgezondheid, 1984. In the Glossary section in the end of this paper a description of the organization is being added.

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Prior to my study Health Sciences, I have worked for six years as a mentor4 in this organization. Empowerment is a leading strategy in the way in which care is provided in this organization. Clients are stimulated and facilitated to find ways to re-establish their positions in society. Their active involvement is essential in this process. The Board of Directors of this organization intends to develop an ICT-based tool for their clients in order to increase their communication and information opportunities with peers, other clients and people from within their social environments (neighbours, mentors). The perception is that this will support their empowerment. Requirements for this tool are not yet made. One of the ideas that have been articulated is a web-portal from the neighbourhood with additional options to meet peers via a closed system, only accessible for clients from the organization. The organization seeks supporting and constraining factors for developing an ICT supportive tool for their clients.

1.3 Scientific relevance Numerous studies have been done exploring peer interaction and several facets of empowerment. The role of ICT in these processes is also increasingly being studied. What this study adds is the focus on clients with long-term mental health problems. Their perspectives will be investigated regarding some of the most prominent empowering processes and their access and meanings towards ICT. Characteristics of psychiatric problems can likely result in different meanings and demands regarding ICT, which will be explored. There are, up to my knowledge, no prior studies investigating this matter. The investigation will be done among clients in a Community Residence. Empowerment has a central role in the perspective of this organization, by means of facilitating clients to regain control over their lives and participate in society. Therefore the perspectives of this client group will be very valuable and will contribute to existing knowledge on empowerment.

1.4 Aims This research aims to explore: −

the opportunities for empowerment of persons with long-term mental health problems (related to information and communication)

−

the access to and meanings towards ICT of persons with long-term psychiatric problems

−

the views of this group towards ICT supportive tools for empowerment

1.5 Research question The following research question will be explored in this study: In what way can empowerment of persons with long-term psychiatric or psycho-social problems be supported by using ICT-based tools?

4

A more detailed description of the work of the mentor can be found in the Glossary.

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1.6 Reading guide Chapter two presents a review of relevant literature regarding empowerment and ICT. In chapter three a theoretical framework is described, defining the concepts 'empowerment' and 'ICT'. The Social Construction Of Technology-approach (SCOT) forms the basis of this research and will also be described in this chapter. Chapter four includes methods used for recruiting respondents, design of the interview-format, the data collection and data-analysis. Also the representativeness of the results is discussed. The results are presented in chapter five. Correlations between variables are as well presented in this chapter. In chapter six the discussion can be found in which relevant literature is described and compared with the results and the overall conclusion, based on the theoretical framework. The recommendations are to be found in chapter seven. In the glossary chapter a description of several features of this study are given. Documents, like the interview format, the invitation letter and the results in tables, are included in appendices.

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2. Review of literature This chapter presents relevant literature regarding the key concepts of this research: empowerment and ICT. These two concepts will be elaborated in this chapter subsequently and afterwards literature regarding empowering effects of ICT will be presented. Insights from literature will be used to develop the sub-questions, the interview-format and to support the discussion of the results.

2.1 Empowerment As was introduced in the previous chapter, empowerment can be considered as a two-folded process. The first aspect deals with the interpersonal process in learning to control and cope with an illness and the other aspect is about regaining a meaningful role in society (community-integration). In this paragraph relevant literature regarding both dimensions will be described subsequently.

Empowerment as interpersonal process of coping with an illness The interpersonal aspects of empowerment can be observed from different perspectives. From a patient perspective, empowerment is a psychological and behavioural process of personal transformation. From the perspective of the patient-provider interaction, empowerment is about communication between the two, with the intention to share knowledge, values and power. In both perspectives, increasing power over one’s life is a central aspect

(Aujoulat,

d'Hoore & Deccache, 2007). This aspect of 'power' is however not fully grasping the concept of empowerment. In a recent study by Aujoulat et al. (2008) empowerment is subdivided in two inter-related processes of 'holding on' and 'letting go'. According to the authors, the first process consists of behaviour intended to master and control an illness, the 'power' aspect as referred to. The second aspect of 'letting go' deals with the process of relinquishing control and acceptance that not everything is controllable. This last part is often overlooked in studies on empowerment. The authors try to show that in empowering processes taking control (‘holding on’) and relinquishing control (‘letting go’) are inter-related processes (Aujoulat, Marcolongo, Bonadiman & Deccache, 2008). In mental health, empowerment is often associated with the process of recovery (Plooy, 2007). In a book describing the development of a recovery-group for long-term psychiatric clients several empowering processes are described. Important is that experiences are being shared, which helps to clarify things and increases feelings of self esteem (p.19). Psychiatric problems force people to undergo a long-term learning process, since problems will not disappear by itself (p.19). Self-knowledge is in this sense essential (p.24) as well as equality in contact with care-givers (p.48). This recovery-group, consisting only of mental health clients, described their own recovery-stories in interaction with group members. They present their stories to other clients and professionals in the field to call to attention the importance of recovery (Boevink, 2006). Examples like these are methods which will contribute to ones empowerment. There are several other ways to facilitate empowering processes though. Information is one of them (Barak, Boniel-Nissim & Suler, 2008; Lemire et al., 2008). Information gives a person the

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opportunity to learn about the disease, and learn about ways to cope with it in daily life. These skills are important in regard to empowerment (Feste & Anderson, 1995). The internet has increased opportunities to seek for information. The information on internet has a wide variety and is always available for those who have access to the medium. In regard to health information on the internet the term 'informed patient' often emerges. Informed patients are suggested to be more knowledgeable, can search for alternatives and can as a result make better choices regarding their health. There are, however, also numerous patients that rather consult their GP, than seek for information themselves. In a study, investigating information gathering techniques, the authors conclude: “many patients do not want to take responsibility or seek out information for themselves – they are more than happy to trust their GPs and leave decisions to them.” (Henwood, Wyatt, Hart & Smith, 2003, p.604). Information can thus be retrieved from many different sources. On basis of the specific problem or personal preferences, one seems to look for information from a source that is considered most appropriate. Another aspect that is considered important in regard to empowerment is peer-to-peer contact. Corrigan et al. (2005) studied empowering processes in mutual-help groups for persons with mental illnesses. They concluded that peer support was the most prominent empowering element in these groups, since peers support each other in diminishing selfstigma and improve interpersonal skills (Corrigan, Slopen, Gracia, Phelan, Keogh & Keck, 2005). Also numerous other authors explored the role of peers in empowerment. Dickerson (1998), to name but one, distinguishes peer interaction and support as a basic tenet of empowerment. She describes that peers have an important role in reducing stigma and reinforce the status of mental health clients in society. Increasingly the role of peers is being studied in regard to professional positions in health care as 'experience experts'. In the Netherlands a course has started for training persons with (former) psychiatric problems in becoming experience experts (Knooren & van Haaster, 2008). Since these forms of peer support are in early stages of development, no evidence is there yet of the effectiveness of these forms of care (Davidson, Chinman, Sells & Rowe, 2006).What remains clear though is that peers play an important role in regard to empowerment.

The role of empowerment in community-integration In literature on empowerment in mental health the community-integration plays a prominent role. Long-term mental health problems often result in difficulties in maintaining or regaining meaningful roles in society. This is caused by several factors. These are first of all individually based, such as lack of skills and knowledge of life. Second, circumstances as low income, low social support and extended admissions in hospitals are of influence. Finally, also societal barriers make integration more problematic. In this sense one can think of stigmatization, unclear rules and impassable authorities (Michon & Van Weeghel, 2008). It is likely that the combination of these aspects often results in disadvantaged positions in social life which are difficult to overcome. Persons with long-term psychiatric problems have, however, in general the same aspirations in life as the rest of the population. One can think of having meaningful work, proper housing, friendships, good health, financial security, and a high quality of life (Bond et al., 2004).

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A specific aspect of community-integration is the integration in the direct social environment. Wong & Solomon (2002) developed a conceptual model of integration in the social environment for mental health clients, whereby they took several housing and service characteristics into account. Based on their study three dimensions were distinguished, which are: −

physical integration; the extent to which an individual takes part in activities outside his/her house and uses goods or services in the community.

−

social integration; this is subdivided in two aspects: (1) the extent to which the individual socially interacts with neighbours and (2) the size and diversity of the individuals’ network and the level of reciprocity in the contacts.

−

psychological integration; the intensity of feeling that the individual belongs to the community and that neighbours fulfil needs which increase the involvement in the community.

These three aspects are all important aspects to strive for in community-integration. A problem in this discussion is that authors disagree on the accepted level of communityintegration. There are authors who emphasis on total societal integration, whereby sheltered forms of care, like Community Residences and Day Activity Centres are facilitators of an end stage in which these are no longer needed. Others however emphasis that there is a maximum in integration when taking facets of the disability into account. These authors stress that integration is to be strived for, but they acknowledge that shelters are necessary for some parts of life which can remain throughout life (Michon et al., 2008). These differences in approaching the subject have consequences in measuring the effectiveness of interventions aimed to increase community-integration. However though effectiveness of interventions are being studied, but there is still a lack of insight in which interventions are effective and which are not. More research in this area is therefore requested (Michon et al., 2008).

2.2 ICT The use of ICT, such as computers and internet has expanded enormously over the last decade. Figures of the Central Bureau of Statistics over 2007 indicate that 90% of the Dutch population owns a computer, and 81% uses it daily. In total, 83% of all Dutch citizens have an internet connection. (Centraal Bureau voor de Statistiek [CBS], 2007). These figures show that computers and internet diffused strongly in our society. There are, however suggestions that the diffusion of the technology does not apply to all social groups equally. Several social groups are more vulnerable for exclusion from ICT, such as the unemployed, people with low income or low educational levels, women and the elderly (Wyatt, Henwood, Hart & Smith, 2005). Access to ICT has, in that sense parallels with social class differences in general society, like income differences and difference in education (Van Dijk, 2003). In this sense the term digital divide is important. With digital divide is meant: ‘the unequal access to information and communication technologies’ (Wyatt, et al., 2005). The digital divide is a complex matter. It is very unlikely that it can be solved by providing every one with a computer and an internet connection (Van Dijk, 2003). Sally Wyatt agrees that access to ICT is more than connection and digital skills to deal with a technology. Access, she debates, also involves feeling

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comfortable with the technology, and not being afraid of it. (Wyatt et al., 2005). Being excluded from ICT is a problem. Our western society is increasingly becoming a world in which information is valued high. ICT is a medium by which information can be conceived. Not being able to gather this information will decrease ones power to influence matters (Van Dijk, 2001). Thus, not having access to ICT results in a structural backwardness in social, political and economic life (Wyatt et al., 2005). Besides this point, from a humanistic point of view, equal access to resources is a broadly accepted value in our society which is important to pursue (Van Dijk, 2001). There is discussion whether the digital divide is only a matter of time. Some authors claim that when time precedes all social groups will have access to ICT. It is important to know why some groups are not making use of ICT. Knowing the reasons for non-use is important to be able to see if the digital divide can indeed be eliminated. Non-use is not only a matter of not being able to access ICT, but also a matter of not wanting to. On basis of this idea Wyatt (2003) described four groups of non-users: −

the resisters; people who have never used internet because they do not want to.

−

the rejecters; people who have used internet in the past, but stopped using it, because of reasons such as it is boring or too expensive.

−

the excluded; people that have never had access, due to several reasons, but would like this.

−

the expelled; people that have lost access, involuntarily without wanting this.

These four different groups ask for different approaches if they ought to be supported in starting to use the internet. The intention should thereby not be to transform all non-users into users, since persons can have their reasons for not wanting to use internet (e.g. the rejecters) which need to be respected. Attempts to pursue that group to use the internet will then be useless. The last two groups however could benefit from structural operations made in supporting access. Several non-users could possibly be supported in becoming users, by the, so called 'warm expert' (Bakardjieva, 2005). This warm expert is a relative or friend who has experience and knowledge in using ICT. The expert can mediate between his knowledge and skills and the specific needs of the 'novice'. In that way these persons have an important role learning digital skills. Bakardjieva stresses: “... even when the introduction to the internet had been initiated elsewhere, the 'domestication' of the medium had been intensively assisted by a close friend.” (p.98). Van Dijk (2003) agrees that motivations for using ICT are often socially determined. The role of the 'warm expert' can thus possibly be important to motivate people in using ICT. Based on these insights of literature, it seems reasonable to explore the access to ICT of this specific group. The intention is to judge whether there is a digital divide in this group and the possible magnitude of the problem.

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2.3 Empowering effects of ICT ICT is increasingly being used to support processes in health care. It is not only used to support health professionals in their work, but also to increase the quality of care and the satisfaction of client and professional. ICT can, for example play a role in providing care to patients, without actually physically being there. This form of care is referred to as tele-care, and includes all different forms of 'care at a distance' with assistance of ICT (Vlaskamp, Webers, Peters-Volleberg & van Halteren, 2001). One of these forms is tele-visitation, whereby the care provider “visits” the patient without being physically there, for example by means of a video-conferencing system. These systems enable the involved persons to see each other, also including the non-verbal signals that are present in face-to-face conversations (Vlaskamp et al., 2001). In this way the ordinary care process can be extended to possibly accomplish more flexibility in care. Increasingly there are technologies on the market that focus on empowering processes between clients, without interference of health professionals. These ‘pure’ peer-to-peer interventions are seen as strong point in relation to empowerment (Corrigan et al., 2005). Often

communication via

empowerment.

the internet

is associated with

an

increase in

effects of

In a study by Van Uden-Kraan et al. (2008) empowering processes were

explored that occur in online support groups for three different non-psychiatric diseases. They conclude that empowering processes can occur in these groups. Although this study explored opinions regarding active participators in several online support groups these insights are relevant. On basis of interviews with patients several empowering processes have been distinguished, such as exchange of information, emotional support, finding recognition and understanding, sharing experiences and helping others (Van Uden-Kraan, Drossaert, Taal, Shaw, Seydel & Van der Laar, 2008). Barak et al. (2008) who also studied this matter, add the impact of writing to the list of empowering processes. According to the authors writing is a way of expressing thoughts and emotions which can be difficult to express in other ways. Internet is also suggested to have an impact on empowerment concerning information seeking. Lemire et al. (2008) distinguish three forms of empowerment that are being appealed on in looking for health information online. These are firstly that people seek information for compliance in whatever is prescribed to them (professional logic). The second form is called the consumer logic, which has to do with consumers taking proactive role in their healthdecisions. The third form, the community logic, is dealing with mutual assistance. Online communities and peer-to-peer interactions via a forum are examples of this form of empowerment. Figures from the Central Bureau of Statistics describe that 52% of the general Dutch population searched the internet for health information, over a three month period (Sep. to Nov. 2007)(CBS, 2007). The internet could likely play a role in regard to information seeking behaviour on stigmatized and shameful illnesses or complaints. A study comparing information seeking behaviour on the internet of persons with a stigmatized illness with persons without a stigmatized illness was performed. In this study stigma was self-reported. Results of this study implicated that persons with self-reported psychiatric stigmatized illness are more likely to use the internet for health information than those without self-reported psychiatric stigmatized

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illness (Berger, Wagner & Baker, 2005). This can be influenced by the anonymity of the internet. A possible disadvantage of the anonymity of the internet is the fact that normal accepted communication rules can be neglected. This requires for rules of behaviour on the internet. This is called moderation. With moderation is meant that some individual or group facilitates the interaction and is responsible for the site and the compliance with rules (Eysenbach, Powell, Englesakis, Rizo & Stern, 2004). This moderation is necessary when interaction takes place at different times. Based on this literature review, it can be concluded that many studies confirm the view that ICT can support empowering processes.

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3. Theoretical background This chapter will describe the theoretical frame on which this research is based and formulate the sub-questions for this research. The key concepts of this study, empowerment and ICT will be operationalized in the context in which they will be used in this study.

3.1 Social construction of technology Developing a technology, such as an ICT tool, into a success depends on many factors. There are many examples of technologies that have been successfully implemented and adopted. However, often though this success is not reached. Success or failure often depends on the extent in which the intended users are heard and whether their wishes are incorporated into the design of the technology. In the development phase a designer visualizes the wishes, requirements and motives of the future users and inscribes these into the technology. There are several methods in which a designer can form these user-needs. Akrich distinguishes explicit techniques, like market surveys and consumer testing and implicit techniques, like reliance on personal experience and other products (Akrich, 1995).

The end result of this inscribing-process is called a 'script'

(Akrich, 1997). This script, containing the specific user-needs for a certain technology serves as a framework in developing the technology. In practice this is not all that simple. A designer must constantly balance between wishes of the users and technical requirements and constraints (Akrich, 1997). Most importantly, designers often do not take the heterogeneity of users into account. For example Oudshoorn et al. (2004) described that in many user-centred designs the focus is predominantly on males. Male wishes are transcribed into the technology, leaving little room for diversity in actors (Oudshoorn, Rommes, Stienstra, 2004). This fact could have implications for the acceptance and utility of a technology. A theory that acknowledges the importance of taking the heterogeneity of users into account is the Social Construction Of Technology (SCOT) approach. In this approach identifying relevant social groups forms the basis for understanding the development of technologies. The view that all technologies are social constructions is the key aspect of this theory. The idea is that a technology does not exist without the meanings that relevant social groups attach to the technology: “Technical artefacts do not exist without the social interactions within and among social groups. The design details of an artefact are described by focussing on the problems and solutions that those relevant social groups have with respect to the artefact” (Bijker, 1997, p.76). The observation that the same technology can have different meanings for different social groups is described in terms of 'interpretative flexibility' (Pinch & Bijker, 1987; Bijker, 1990). Social groups are groups of people sharing the same opinion and attaching the same meaning to a technology. Bijker's approach gives support to having a heterogeneous group of actors who all can attach a different meaning towards the same technology. The aim in this approach is thus not to find a best use for a technology, since there is no one correct use for a technology. Developers can prescribe that a technology should be used in a particular way, but there is never just one way of using a technology (Oudshoorn & Pinch, 2003). Users attach

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meanings to a technology which will form and re-form the technology, which will often result in different ways of using it. These theoretical insights will form the basis of this study. The approach will be used to specify the research question, to develop the interview-format, and to analyze the results.

3.2 Operationalization of empowerment No general accepted definition of empowerment exists. A study by Aujoulat et al. (2007), in which 55 articles were analyzed on the concept, revealed that empowerment is poorly defined and lacks a clear theoretical basis. Definitions fail to describe the exact nature of the concept, but instead define it in terms of 'outcomes' that are expected to be reached. Different interpretations, based on different understandings of the concept influence this lack on agreement (Laverack & Wallerstein, 2001).

This master thesis research is not intended to

unfold a clear definition of the concept, since this would be a study in itself. The absence of a clear definition, however, urges for an explanation of the concept in regard to this study. Literature on empowerment underlines the importance of being well informed (Barak et al., 2008), which can become more accessible and more tailored to the focus group by ICT (Lemire et al., 2008). Also peers play a prominent role in empowering processes (Corrigan et al., 2005; Dickerson, 1998). These two aspects are of influence in the interpersonal process of empowerment. Investigated will be if this process can be reinforced by ICT. The role of the mentor will also likely be of influence and this will also be necessary to explore. As described in the previous chapter, literature on empowerment in mental health emphasized the important role of empowerment in community-integration. Participating in society is difficult for this group. It is however difficult to reinforce participation directly by using ICT. Since the focus of this research is on support of empowerment by ICT, it seems legitimate to exclude the participation aspect. Doing this, however, excludes an essential part of empowerment in this field. Therefore the choice was made to explore several aspects of participation as well in this research. The role of participation however will receive less attention compared to the other two aspects. Based on these three aspects the concept of empowerment will be operationalized as follows:

Figure 1: operationalization of empowerment

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In the above figure, the broken line in between ICT and empowerment forms the central aspect in this research: the way in which ICT can facilitate in empowering processes. Both dimensions of empowerment are in the model and these are connected to several ways in which these dimensions of empowerment are expected to be influenced. These insights are taken from literature, which was described in the previous chapter. These aspects will be investigated in this research, as well as meanings towards ICT and opinions regarding the role of ICT in empowering processes. This operationalization of empowerment will be used in formulating the sub-questions and developing the interview-format of this research.

3.3 Operationalization of Information and Communication Technology (ICT) What is meant exactly by ICT is hard to define nowadays. The word has diffused in society in such a way that a clear definition is lacking. When 'Google' was used to find a definition the words 'telecommunication', 'computer', 'information systems' appear most often. In the context of this study, ICT will be described in functionalities that it incorporates. ICT is seen as a technology that enables users to interact with one another and to retrieve and give information. It can be used at any given time. There are no barriers to communicate with others who are physical not around. The access to different devices that will be explored in this study are: television, fixed telephone, mobile telephone, computer and internet.

Access to ICT is not acquired automatically. Van Dijk (2003) distinguishes four subsequent phases in accessing ICT. These are: −

motivation

−

possession of hardware and software

−

digital skills

−

actual usage

These four phases are premises in complete access to ICT. In each phase disruptions can occur, which diminishes complete access. The intensity of the impact differs though. For example in the motivation phase subjective feelings towards ICT, like fear and resistance can influence decisions for not using it. Associating ICT with difficult and inaccessible still often occurs (Van Dijk, 2003). This aspect has a bigger impact than not possessing hardware or software, since people can use it in other places as well. These phases of access, as well as meanings of respondents towards ICT are essential to understand digital capabilities of the users and their reasons for rejection or non-acceptance. These insights will be used to measure the access to ICT of the respondents. It will also help to analyze the results.

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3.4 Sub-questions Based on the theoretical insights of this chapter and the previous chapter, the following subquestions will be explored in this research:

1. Do clients with long-term psychiatric problems embrace empowering processes and in what way? Specifically the focus will be on information seeking behaviour of the respondents concerning health, since findings from literature suggest empowering effects regarding this matter. Also the level of participation in society will be explored. These matters are both considered as strong influencers of empowerment and will both need to be initiated by the person oneself.

2. Do peers, mentors and neighbours foster empowering processes of clients with longterm psychiatric problems, and in what way? Investigated will be to what extent contacts with others exist and in what way these can and do contribute to empowerment. The focus will be on contacts with peers and mentors since these are associated to contribute to empowerment. The contact within the neighbourhood will be explored, since these findings will likely contribute to insights in community-integration. The participating organization in this research is specifically interested in this matter.

3. What meanings do clients attach to ICT? Based on insights from the SCOT approach, the meanings regarding ICT will be explored as well as the access of this group towards several forms of ICT. The assumption, based on literature from the digital divide, is that there will be backwardness in access to several forms of ICT. This assumption will be explored.

4. To what extent do clients view current ICT applications as tools to enhance their empowerment? The opinions of clients regarding ICT as a medium for enhancing empowerment will be explored. It is important to know prior to the development of an ICT application (or any other innovation) what the opinions of the users are.

By exploring these four sub-questions, the intention is to answer the general research question of this study: In what way can empowerment of persons with long-term psychiatric or psychosocial problems be supported by using ICT?

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4. Method This chapter describes the research strategy, the selection of participants, and the methods for data analysis and the representativeness of the sample in regard to the total population of clients in the organization as well as with data from a nationwide study.

4.1 Type of research This research is an explorative study, which aims to explore the opinions of long-term mental health clients from a Community Residence. A semi-structured interview format, with both open-ended and closed-ended question was used. Conducting face-to-face interviews was chosen as the best method to explore the subject since finding opinions and meanings of respondents is important in this study. Expected was that this survey method would be beneficial to the richness of answers and also reduce the bias of wrong interpretation of questions, since clarification was possible. Due to the unexpected high response not all respondents could be interviewed. Therefore a random group received a questionnaire by mail.

4.2 Design of the interview format and questionnaire The interview format was developed after a thorough review of the literature and several consultations with different interested parties and experts. It was divided in four parts. Questions were subsequently being asked on: −

personal background and participation in society (sub-question 1)

−

access and meaning towards ICT (sub-question 3)

−

contacts with peers, mentors and neighbours (sub-question 2) and methods for retrieving health information (sub-question 1)

−

ideas and expectations from the respondents on supportive tools in communication and information (sub-question 4)

Appendix II presents the interview format and appendix III the questionnaire. The interview format was pre-tested twice. This was done by interviewing a client from the organization that I knew already and a friend. Both had no suggestions for improvement.

4.3 Selection of participants and response After obtaining approval from the management and Board of Directors of the organization, clients have been approached to participate in the study. This was done by sending them an information letter (see Appendix I). The letter unfolded in short the background and the aims of the study, explained that data gathered in the interviews, was to be stored anonymously and that the organization and all respondents would be informed of the general results. The mentors were also, by e-mail, also informed about the aims of this research. All clients, who, at that moment, received care by the organization (either community residence or supported living), were approached. Clients who only visit day activity centres without also receiving home care as well were excluded. This was done to keep the study feasible.

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Clients were asked to respond either by telephone, SMS, e-mail or 'regular' mail, when interested5. To reduce the bias that only participants who are very interested in the subject would react, explicit emphasis was put on inviting clients who were not interested in the subject or felt resistance towards the subject. Appendix I present the invitation letter. Of the total of 814 letters that have been sent, 19 of them returned unopened, due to wrong addresses, removals or refusals. Initially 73 clients responded of which 63 eventually participated in the study (response rate: 7.9%). In total, 49 respondents were interviewed and 19 respondents received a questionnaire by mail. Five clients withdrew their interest in participation when more information was given about the research and another five did not return the mailed questionnaire.

4.4 Data collection Respondents were subsequently interviewed in their homes. Four interviews took place at the office facility of the organization, on request of those respondents (this option was given in the information letter). Two respondents, who are partners, were interviewed at the same moment. The duration of the interviews ranged between 17 minutes and 2 hours. The interviews were relatively structured by the interview format, but there was time for the respondent to add extra information. The questionnaire was derived from the interview format. It had the same structure, and in general the same questions. A few questions were left out the questionnaire, to reduce the length of the questionnaire. In total 14 out of 19 questionnaires were returned. No follow-up mailings have been sent to the non-responders, since this initial response was already very high. The mentors were consulted by e-mail to answer several short questions, in order to create insight in the adoption of technology of the total population of clients. In total 58 mentors responded, providing information on 420 clients (51.6% of total client population). The questions are presented in appendix IV.

4.5 Data analysis Both quantitative and qualitative data were collected in this study. The quantitative data were analyzed in SPSS, by using frequency tables and regression analysis. The qualitative results were analyzed by looking for underlying patterns in meanings and opinions. Based on theoretical insights and the actual results, coding has been performed. This coding process, aimed to search for clarifications or categories to help analyzing the data. Based on this inductive form of research, tentative conclusions will be drawn on basis of observation and analysis of patterns in the data (Babbie, 2007).

4.6 Representation of results from this sample By recruiting respondents through an invitation letter, there is the possibility that the sample obtained is not representative for the total population. To explore to what extend this sample is representative, several data were compared to statistics that are known from the total population of the organization and to data gathered in a national study (De Heer-Wunderink et al., 2007). 5

The ways of responding have been grouped together. This can be found in appendix V, table 1

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Female Male Mean age Community residence Supported living Average duration of stay (months)

Sample6

Organization7

44.4% 55.6% 48 23.8% 74.6% 56

48.4% 51.6% 27% 73%

National study8 41% 59% 45 45% 55% 60

Table 1: comparison of sample with total population and national study, in %

The above table indicates that there is much resemblance in results from the sample compared to the other two populations. Although it remains unsure whether these characteristics are the right indicators to judge the resemblance, it can be assumed that the sample is a rather good representation of the total population, at least within the organization.

6 7 8

These results are commented in paragraph 5.1 Set date 24-06-2008 Set date 01-01-2006

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5. Results This chapter presents information to answer the research question of this study: 'In what way can empowerment processes of clients with long-term psychiatric or psycho-social problems be supported by using ICT-based tools?' This chapter is divided in several subchapters, and starts with presenting the demographic characteristics. In the second paragraph results will be presented based on the sub-questions and in the third paragraph results of regression analysis are given. First a general overview is given of the main results after which a more detailed picture is presented. In appendix V all results are presented in tables. Several of these tables are as well included in this chapter. Statements, recorded during the interviews, are included in this chapter to illustrate the findings. These have not been translated in English, since translating these will decline the subtle notions and force of these statements.

5.1 Demographic characteristics As is visualised in table 2, the sample consisted of 28 females (44.4%) and 35 males (55.6%). The age ranged between 30 and 68 years, with a mean age of 48 years. A majority of the respondents is living alone (n=42, 66.7%), followed by living together with one other person (n=9, 14.2%). The balance between the two forms of care (community care and supported living) was respectively 23.8% and 74.6%. Respondents receive an average of 3.5 hours of care per week (SD 5.6). The average time stayed in this organization is 56 months (4.7 years), with a minimum of 1 month and a maximum of 240 months (20 years). Most respondents (n=42, 66.7%) have frequent contact with other health care providers as well.

n

%

Female Male

28 35

44.4 55.6

Age: range Age: mean

30-68 48.11

Form of care: - community residence - supported living - no more care

15 47 1

23.8 74.6 1.6

Living situation: - alone - 1 housemate - 2-4 housemates - > 4 housemates

42 9 6 6

66.7 14.2 9.5 9.5

Duration of stay in RIBW in months: range Duration of stay in RIBW in months: mean

1 – 240 56

Hours of care p/week: range Hours of care p/week: mean

0.3–168 hours 3.5 hours

Table 2: Demographic characteristics, in n and %

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5.2 Results by sub-question This paragraph presents the results on basis of the four sub-questions. In the end of each subquestion, a short summary is given in which the sub-question is answered.

Sub-question

1:

Do

clients

with

long-term

psychiatric

problems

embrace

empowering processes and in what way?

Information Having information regarding health is considered to be an important aspect in the empowerment process. Respondents were given a list of options, of possible sources to use for retrieving information. Also respondents could, if desired, add other sources which they used. Respondents were asked to name all sources they have used in the past. The six most mentioned sources are presented in the table below. Appendix V includes the complete table. The most mentioned source for information was the general practitioner / medical specialist (n=49, 77.8%), followed by general information on the internet (n=30, 47.6%). Almost one in three respondents consults the mentor from the organization (n=23, 36.5%).

n

%

GP / medical specialist

49

77.8

General health information on the internet

30

47.6

Mentor

23

36.5

Books, magazines and/or tv

20

31.7

Friends or family

14

22.2

Other clients / peers

9

14.3

Table 3: sources for seeking health information (more answers possible), in n and %

A minority of the respondents seeks information within their social network. Friends or family are being consulted by 14 respondents (22.2%) and other clients / peers were mentioned as a source by 9 respondents (14.3%). Online support groups were being used by 4 respondents (6.3%). Two respondents never seek for health information. They both described being diagnosed years ago, which has resulted in gathering sufficient methods for coping with ones disease. As one respondent explained: Ik zoek niets op over mijn gezondheid. Ik ben manisch depressief sinds eind '78. Dus dat is 30 jaar. In die tussenliggende periode heb ik veel informatie gekregen. Ik hoef daar nu niets meer over te zoeken, want dat levert niet echt... nee ik weet gewoon genoeg al zeg ik het zelf. Ja, na 30 jaar dan weet je het onderhand wel hoe het bij jou werkt. Want ook dat is bij iedereen anders (interview, male, 63, SL)

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Most respondents mentioned to use more than one source to find information to gather information about a health related matter. One respondent described using a combination of the internet and literature in dealing with a health problem: Die organisatie voor mensen met eetproblemen heb ik gevonden via internet. En toen heb ik hun gebeld en daar heb ik twee gesprekken gehad. En ook nog een andere website: weg met de weegschaal en dan kon je gratis advies krijgen en daarvan heb ik vijf mailtjes met informatie gekregen. Ik kreeg daar ook een advies over een boek en dat heb ik toen bij de bibliotheek gereserveerd en gelezen. Zo kom ik dus aan mijn informatie. (interview A9, female, 38, SL) In this sense, searching for information can work as a 'snowball' in which one source will lead you to the next source. There were several positive effects of searching for health information mentioned by the respondents. When using several sources confirmation that the information is right was a positive effect. Also several respondents mentioned to confirm the information that was given by a medical specialist / GP, by checking other sources. The opposite also occurred, namely consulting a general practitioner after searching the internet: Ik ben wel eens met printjes bij mijn huisarts gekomen om te checken of ik iets had. Dat bleek gelukkig toen niet zo te zijn. (interview B, female, 38, SL) In addition, respondents mentioned feelings of reassurance and clarification. For example one respondent mentioned that seeking health information helped clarify a vague ailment: Ik had allerlei vage klachten. Toen ben ik op internet gaan zoeken. Daar heb ik uiteindelijk gevonden wat ik had. Dat was prettig. Dit verklaarde een hoop. Hiermee ben ik naar mijn huisarts gegaan. (interview, female, 48, SL) Negative aspects that were mentioned in searching for information were having access to more information makes you 'more ill' and worried. The fact that information can be confronting was also mentioned: Ik lees soms in boeken dingen over mijn ziekte die erg confronterend zijn. Bijvoorbeeld dat relaties aangaan moeilijk is voor mensen zoals ik. (interview, female, 45, SL) The internet was often mentioned as a source for retrieving information. This incorporates positive and negative aspects. Internet offers an enormous diversity in information. When seeking specific information regarding a subject, the chances that you find something you look for are high. One respondent experienced information regarding drugs to be less 'medical' and therefore better to understand:

9

The 'A' is being added to distinguish this statement from another respondent , who is referred to as 'B'. Both respondents have the same gender, age and form of care.

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....wel heb ik laatst informatie opgezocht over nieuwe medicijnen. Via internet kreeg ik heel andere informatie dan op de bijsluiter stond. Het was wel hetzelfde, maar het was niet zozeer medische informatie, veel meer waar het voor gebruikt is, minder moeilijke woorden, ja, daarom was het veel makkelijker te begrijpen. (interview, male 34, CR) This positive experience shows how the internet can extend in knowledge which is not always supplied this easily in other sources. A disadvantage of the richness is that searching the internet requires that you know what to look for and how to perform an adequate search. The tedious information available online can result easily in getting stuck in it. One respondent clearly described this aspect: Meestal vind ik het omslachtig. Als je ergens naar zoekt krijg je een heleboel resultaten, en daar kun je niet allemaal iets mee. Dan zie ik door de bomen het bos niet meer. (interview, male, 57, SL) The fact that information is not always reliable was often referred to as a problem. However, some respondents mentioned how to overcome this problem. By looking who dispenses the information (supplying website) the content could be judged on its reliability. As one respondent explained: Het ligt er heel erg aan waar je kijkt. Op sites van zorg verzekeraars, bijvoorbeeld daar kun je wel redelijk vanuit gaan dat dat klopt. (interview B, female, 38, SL) The majority of the respondents thus searches for relevant information regarding their health although they use different sources, including the general practitioner, internet, and their mentor. Searching for information is likely to be based on personal preferences and skills. As indicated in literature, information can probably foster empowerment for example by increasing ones self-esteem and power to make decisions based on relevant information.

Participation in society Participation in society is seen as an essential aspect in empowering processes. Respondents were being questioned about their day activities and participation in clubs / associations. Most respondents (n=42, 66.7%) have day activities. The biggest group (n=25) consists of people having a volunteer job, followed by 'other' day activities10 (n=10), like therapies. A minority of 7 respondents, accounting for 11.1% has a paid job. The mean time spend on work is 8.5 hours per week (SD 9.8). Half of the respondents (n=32, 50.8%) visits a Day Activity Centre (DAC). The mean time spending at Day Activity centres is 9 hours per week. One in three respondents (n=21, 33.3%) has no day activity at all. In total, 26 respondents (41.3%) are actively involved in a club or association. Another 30 respondents (47.6%) are not a member of a club or association.

10

In the category 'other' visiting a Day Activity Centre of the organization is excluded.

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In finding ones way in society with a psychiatric disorder a well known complexity lies in the fact that there exists much ignorance and stigmas around mental illnesses. Some respondents described this aspect. One respondent explained that there exist wrong interpretations around mental health problems which make people frightened. Less understanding can be a result. In an answer on differences between contacts in psychiatry and outside of psychiatry he explained: Sommige dingen hoef je niet uit te leggen. Bijvoorbeeld ik ga naar de sportschool en daar sprak ik een instructeur en toen vertelde ik hem dat ik niet werk omdat ik een psychose heb gehad en toen keek hij wel wat vreemd. Sommige mensen denken direct dat je psychopaat bent, weet je wel. Ik zag wel dat hij er van schrok. En bij Phoenix11 zijn er allemaal mensen met een psychiatrisch verleden. Dus die kijken er niet vreemd van op dat je schizoaffectief bent of psychoses hebt gehad. Dat is het handige daar. (interview, male, 39, SL) Also within social contacts similar experiences were described. One respondent unfolds that he feels a gap in contact with friends who has no experience with mental health problems. He explained that things that are important in his live cannot always be shared, because this friend does not experience the same things: Ik had vorige week een vriendin op bezoek en dat is geen lotgenoot, en dan vraagt ze hoe het is. Wat er pas bij mij gebeurd is, is de afbouw van medicatie, en dan zie ik haar wel schrikken als ik het hier over heb zo van: van dat soort dingen snap ik allemaal niets. Ik kan dus niet zoveel over dingen praten die voor mij dagelijks belangrijk zijn. En met andere mensen die geen psychische problematiek hebben, heb ik het gevoel dat ik een beetje op mijn tenen moet lopen. De kloof is voor mij erg groot, zo ervaar ik het. Zoals net dan moet ik even huilen over een rotervaring en hier (kantoor RIBW, red.) heb ik het gevoel dat dat kan, terwijl ik dat “buiten” niet doe. Ik heb het met lotgenoten ook meer over psychiatrie en medicatie. Maar niet te veel hoor. Af en toe als ik de behoefte heb dan doe ik dat wel. (interview, male, 47, SL) The fact that often people cannot judge on the basis of one’s appearance whether they have a mental health problem can also easily result in misjudging ones capabilities. It happens that others correspond too many capacities toward someone with mental health problems, which he or she can not realize. One respondent unfolded this aspect by saying: Mensen snappen mij niet altijd. Ik ben autistisch en ze zien daarom niets aan mij. Mensen moeten zich aanpassen aan mij en dat kost moeite (interview, female, 45, SL) Participation in society is thus not an easy matter. It demands something of the person with psychiatric problems, but at the same time society needs to adapt as well. The results of contacts in the neighbourhood describe some participation difficulties as well.

11

Phoenix is a Day Activity Centre of the RIBW (see also the glossary)

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In answer to this sub-question, it seems legitimate to conclude that most respondents are active seeking for more knowledge regarding their health and it is likely that this fosters empowerment. Participation in society is a complex matter. Participation is not only being influenced by the respondents themselves. Respondents are, in this respect, also dependent on the behaviour of others. Ignorance and negative believes in society are often expressed, which are negative influencers of empowerment. On the other hand, lack of competencies of respondents to fit to norms in work and social life make this process more difficult as well. The effort is there though, since the majority has day activities and tries to get in contact with others. Clients do embrace empowering processes by searching for information and attempts to participate in society.

Sub-question 2: Do peers, mentors and neighbours foster empowering processes of clients with long-term psychiatric problems, and in what way?

Peer-to-peer contact Peer interaction was explored by asking if respondents ever had peer contact defined as others who have experienced, according subjective judgement of the individual, more or less similar events. These similar events have had an impact on the lives of these persons. A total of 68.2% (n=43) of the respondents have contact with peers. Origins of these contacts were explored via an open question, giving possibility for more than one answer. Most often peers were met at the Day Activity Centres (n=23, 36.5%), followed by the mental health field in general, for example via admission in a hospital or via courses (n=14, 22.2%). Most respondents seem to consider other clients in mental health as their peers. One respondent explained that by having a psychiatric disorder this automatically implies that you get to meet more persons with similar problems: Ik heb wel eens iemand horen zeggen: als je werkt dan ken je alleen werkende mensen en ben je werkeloos dan ken je alleen werkelozen. Maar dat geldt natuurlijk in het algemeen. Dus als je zelf een psychische ziekte hebt dan ken je automatisch ook veel mensen die een psychische ziekte hebben. (interview B, female, 38, SL) In total, 31.7% (n=20) of the respondents does however not have any contact with peers. Almost half of this group (n=9) reported difficulties in getting to know peers ('I do not know where to find them' and 'I do not get to meet them').

Experiences in contact with peers Respondents who do have peer-to-peer contact were asked how they experienced these contacts. There was much overlap in their answers. In order to analyze the results, all similar words were grouped and counted (see Appendix V). Most respondents reported only positive aspects. 'Understanding' (n=12) and 'pleasant' (n=10) were the most described positive aspects of peer-to-peer contact. Often heard statements in regard to positive aspects are that less needs to be explained and you can feel more relaxed / at ease:

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Zij weten uit ervaring hoe het in elkaar zit. Je hoeft hen minder uit te leggen. (interview, female, 52, CR) Je hoeft geen toneel te spelen. Ik kan mezelf zijn en ik kan mijn ei kwijt. (interview, female, 61, SL) Also negative aspects were named. 'Confrontation with own problems' and 'not able to cope with other people's miseries' were most mentioned (both n=2). This last aspect was unfolded by a respondent in visiting a peer support group: Ooit heb ik bij een lotgenoten groep in Tiel gezeten. Maar dat is niks voor mij. Ik neem al die ellende van anderen mee naar huis. (interview, female, 48, SL) Taking other people's problem 'home with you' can be seen as a disempowering effect of a peer support group. Another respondent emphasized that psychiatric problems incorporate difficulties in getting in contact with each other. Mentors have an important facilitating role hereby: Bij Phoenix is er het groepsgebeuren. Daar ontmoet ik wel mensen. Maar wanneer twee mensen een probleem hebben is het vaak moeilijker om contact te maken. Het is fijn dat er dan begeleiding vanuit Phoenix bij is. (interview, female, 36, SL) Half of the respondents (53.3%) explained peer-to-peer contact as being 'different' from contact with non-peers. A group of 10 respondents (23.2%), all males, experienced these contacts as not different than contact with non-peers.

Interest in increasing contact with peers Respondents were asked if they would like to enlarge the contact with peers. The majority of the respondents (n=36, 57.1%) does not want this. The most heard reason for this is that the contact that they do have now fulfil their needs (n=8) or that they do not long for this (n=5). Three respondents would like to have more contacts but not necessarily with peers. Also several respondents (n=4) were more interested to increase contacts outside the 'world of psychiatry': Nee, ik ben niet geïnteresseerd om contact met lotgenoten uit te breiden. Met bepaalde scene blijf je wel omgaan, maar ik vind ook dat je nieuwe dingen moet proberen. Anders kom je het wereldje nooit meer uit. (interview, male, 48, CR) Sometimes contacts in psychiatry are not experienced as being helpful, while implicating that contacts with persons outside psychiatry are more helpful. One respondent explained this matter: Misschien als je ervan kan leren, waarom dan niet. Maar ik vind het ook fijn om buiten de psychiatrie contacten te hebben. Ik kom met contacten in de psychiatrie niet altijd verder. (interview, female, 54, SL)

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Some respondents (n=3) are even more explicit and state that their reasons for not seeking peer contacts are determined by the fact that they would like to 'close the door behind them' considering their psychiatric background. One respondent unfolded this by saying: Nee, ik wil dat stuk (verleden / psychische klachten, red.) het liefst in de kelder stoppen. Een vriendin weet het, die krijgt ook begeleiding van het RIBW. Bij haar kan ik altijd terecht. We bellen bijvoorbeeld elke dag om 11 uur. Een vast contactmoment. Dat is belangrijk ja. (interview, female, 48, SL) Two respondents mentioned negative experiences in contact with others with psychiatric problems and therefore they avoided contact. The nagging of others was experienced as annoying by respondent: Nee, alles wat ik op het GGZ tegengekomen ben, daar werd ik zelf gewoon depressief van: al die aanstellers en watjes. Dan klagen ze, en dan zeg ik dat heb ik ook, en dan noem ik vervolgens nog een paar dingen op waar ik dagelijks last van heb. (interview, male, 30, SL) Contact with mentors Questions about contact with the mentor were focussed on the content of the contact and the contact between the two around the planned appointments. Respondents were asked how often the mentor accompanies the respondents in doing certain tasks, namely assist in cleaning the house, assist by doing groceries, accompany in visiting others and assistance in financial things.

Always

Often

Some times

Never

No answer

7 (11.1%)

5 (7.9%)

16 (25.4%)

33 (53.4%)

1 1.6%)

Assist by doing groceries 4 (6.3%)

1 (1.6%)

6 (9.5%)

50 (79.4%)

1 (1.6%)

Assist in visiting others

0

2 (3.2%)

35 (55.5%)

24 (38.1%)

1 (1.6%)

Assist with financial things

5 (7.9%)

9 (14.3%)

8 (12.7%)

39 (61.9%)

1 (1.6%)

Total

16 (6.5%)

17 (6.9%)

65 (26.2%)

146 (58.9%)

4 (1.6%)

Assist in cleaning the house

Table 9: assistance by mentors in certain tasks, in n and %

As can be seen in table 9, most respondents (59.5%) claimed never to get assistance by doing things. This was determined for 81% by never getting any help in doing groceries. A quarter of the respondents (25.8%) received help 'sometimes'. Most respondents (n=50, 79.4%) explained that the emphasis in the contact with their mentor was on talking. Seven respondents (11.1%) said the contact consisted of half talking and half doing things. A minority of five respondents (7.9%) claimed the emphasis was on doing things.

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All clients of the organization have a mentor. Contact between them is planned in collaboration. To get insight if and in the ways in which respondents consult their mentors, in between these appointments, questions were asked about contact by telephone and e-mail from respondents to their mentors. Also the mentors were consulted regarding their contact via e-mail and SMS with clients. As is presented in table 10, most respondents call their mentor (71.4%). The most listed frequency of these contacts was several times per month (22.2%) and seldom (22.2%). There is an emergency telephone number which most clients can use in case of a 'crisis'. Twenty respondents (31.7%) have made use of this, of which 17 respondents have stated that they use it seldom. E-mail is used by a quarter of respondents (24.4%) and 20.6% of respondents considers to use e-mail in the future with their mentor.

Yes

No

Missing

Call mentor

45 (71.4%)

16 (24.4%)

1 (1.6%)

Call crisis telephone

20 (31.7%)

41 (65.1%)

1 (1.6%)

E-mail

16 (24.4%)

45 (71.4%)

1 (1.6%)

Considers to use e-mail in

13 (20.6%)

28 (44.4%)

21 (33.3%)

the future Table 10: contact by telephone and e-mail between respondent and mentor, in n and %

According to the mentors there was contact by e-mail with 17.6% of the clients. (Total population n=420). Most respondents were very satisfied with the contact by telephone or e-mail. Most respondents emphasised that the telephone calls were mostly about practical matters, like postponing an appointment. For some respondents it was a threshold to contact their mentors besides their appointments. Feelings like “not wanting to bother them” and “they are already so busy” were accounting for this threshold: Een enkele keer bel ik, maar ik trek niet snel aan de bel. Ik voel me snel lastig en durf het ook niet goed.

(interview, female, 45, CR)

Some of these respondents mentioned that media as e-mail have benefits to reduce this threshold. For others although it remained the same. An example of the benefits was explained by a respondent as: Als ik zit te stressen dan stuur ik een mailtje. Dat is heel fijn, want dan ben ik mijn verhaal een beetje kwijt en ik krijgt dan al of niet een reactie. Maar het belangrijkste gewoon is dat ik het laat weten. In een mail kan ik meer mijn woede laten zien en zo en meer mijn verontwaardiging uiten. Dat gaat makkelijker dan via de telefoon. En mail kan op ieder gewenst moment voor mij. Alleen soms zou ik wel iets adequatere reacties terug willen. (interview A, female, 38, SL)

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The fact that the experience was being shared, although not via a medium by which the receiver can react at once, was thus important for this respondent. She also mentioned that by e-mail emotions could be expressed more easily for her. To decide if and when to call the 'crisis number' was experienced as difficult by some respondents. Doubts whether there problems were 'crisis' enough accounted for this. Also the fact that you could encounter a mentor that you do not know personally is experienced as a threshold for some. There was also a respondent that mentioned that becoming dependent is a disadvantage of more flexibility in contact with their mentors: Het zou voor mij fijn zijn als ik tussendoor kan mailen en van hem antwoord krijg op dingen. Maar er zit ook een andere kant aan. Ik heb me heel erg lang slachtoffer gevoeld en me zo gedragen. Ik heb daar ook therapie voor gehad. Maar nu dreig ik een beetje de andere kant op te slaan. (interview B, female, 38, SL) Contact with neighbours Respondents were being questioned about their contacts in the neighbourhood. Almost all respondents (92.1%, n=58) have contact with their neighbours. The contacts consisted most often of greeting each other (n=30) and doing things together (going out, drink a cup of coffee etc) (n=22). Helping each other out with practical things or taking care of each other’s pets or plants while being away was mentioned by 14 respondents. Only 15.9% (n=10) of respondents were interested in increasing the contacts in their neighbourhood. Most respondents (66.7%) value contact with neighbours as 'very important'. The most mentioned reason was to be able to help each other out, or to rely on others in times of need. Also more subtle aspects were mentioned as reasons for considering contacts with neighbours as important, namely feeling accepted / wanted, more social cohesion and increased flexibility: Je moet je een beetje gewenst voelen in je buurt. (interview, female, 37, CR) Wat meer sociale cohesie vind ik wel belangrijk. Het geeft mij een soort warmte, ook al doe je er verder niets mee. (interview, male, 47, SL) Het maakt het wonen wat soepeler, prettiger. (interview, male, 53, CR) Reasons for not judging contact with neighbours as being important were most often that people did not long for it. Several respondents that lived in community residences mentioned problems in the neighbourhood concerning negative believes regarding the community residence: Binnenkort wordt hier een open dag georganiseerd voor de buurt. Sommige buren denken dat het hier een TBS instelling is. (interview, female, 45, CR) Nee, ik heb hier geen contact met de buren. Ze zeggen ook niks als je ze groet. Dat komt misschien omdat dit een huis van de RIBW is. Er zijn in het verleden veel problemen geweest, met drugs en toestanden en zo. Misschien dat er daarom zo weinig contact is. De buren hier direct naast stuurden met kerst wel een kaartje. Maar verder niets. (interview, male, 45, CR) This aspect of negativity of neighbours against (clients in) a community residence was

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experienced in the light of ignorance of neighbours against persons with psychiatric problems. However also 'problems' with inconvenience in the past were mentioned. Two other respondents mentioned that

they did their best themselves to

diminish

inconvenience towards the neighbourhood. One of these respondents explained that her neighbours lodged a complaint at the housing society about her, because she was making too much noise. This respondent explained that she yelled sometimes in her house due to frustrations she felt. Examples like this can possibly explain reservations of neighbours. The irony is however that the behaviour of one is being generalized to all others who are associated to belong to the same group.

To conclude, others do have a positive effect on fostering empowerment of clients with longterm mental health problems. Peers often understand one another better than non-peers. These contacts are mostly informal. In contact with neighbours other empowering processes play a role, like feeling secure and wanted. Mentors seem to be important in order to be able to reflect thoughts, insecurities and experiences. Although not explicitly stated, this is likely to have a positive impact on empowerment. The accessibility of mentors, besides the planned appointments is valued positive, but can possibly be improved.

Sub-question 3: What meanings do clients attach to ICT?

The interviews contained questions on access to ICT. To what extend the target population has access to ICT is an important factor for acceptance and diffusion of an ICT-tool. Even more important are the meanings that will be attached to it. These will be described in the following paragraphs.

The users of ICT In this study 45 respondents possess a computer (71.4%) and 35 respondents (55.6%) have an internet connection at home. Of this group, 25 respondents use computers and internet daily (39.7% of total sample) as can be seen in table 12.

Computer

Internet

Daily

25 (39.7%)

25 (39.7%)

Several times per week

8 (12.7%)

8 (12.7%)

Several times per month

9 (14.3%)

9 (14.3%)

Seldom

3 (4.8%)

0

Total

45

42

Table 12: Frequency of using computer and internet in n and %

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A television is owned by almost all respondents (n=62, 98.4%) and is used daily by the majority (74.6%). In total 85.7% of the respondents own a fixed telephone and another 85.7% own a mobile telephone. Half of the respondents (46%) send text messages (SMS). The mentors explained that they used SMS to contact clients as well (21.9%). Two respondents have neither a fixed or mobile telephone. Both of them also have no access to computers and internet.

In order to get insight in the utility of technologies in the total group of clients, an e-mail was sent to all mentors of the organization. They were asked if clients they accompanied made use of computers and internet and how frequent this is. In total, 58 mentors responded, giving information about 420 clients (51.6% of total client population). The group daily users consisted of 164 clients, 39% of the total population. In total 31.4% never uses a computer / internet and 30% use a computer some times (but not daily). Questions regarding access to television were being asked to be able to say something about the adoption of this technology. Television is in other health care fields, for example home-care for the elderly, increasingly being used as an interactive medium for information and communication. Skills to learn to handle a computer and internet, so called digital skills were learnt in different ways. Most respondents learned to use a computer either by doing / trying themselves (n=17) or by following a computer course (n= 17). Skills in internet use were most often learned by the respondents themselves (n=21). Learning to handle a computer via a course was sometimes difficult as some respondents explained: Ik heb bij een werklozencentrum een cursus Windows XP gedaan, maar daar heb ik niet zoveel aan gehad. Dat waren allemaal mensen die veel verder waren als ik. Met dat boek erbij ben ik zelf wat verder gekomen. Maar er gaat snel iets fout. Ik wil er niet meer van weten, maar ik weet dat het moet. Ik moet er aan geloven. Zo voelt het echt, dat ik er aan moet geloven. (interview, male, 54, SL) Vanuit het basisberaad hebben we 5 jaar terug een cursus gedaan. Maar wat iedereen al kende liep zo uiteen, dus veel geleerd heb ik daar niet. (interview, male, 63, SL) A course only seems not to be the best option for all to learn skills in working with a computer. Some respondents mentioned that they consulted people from their social network to help them learn digital skills. One respondent emphasised the need for learning to overcome her fear for computers by learning from a trusted-other: Iemand van de cursus kunstgeschiedenis heeft me geleerd hoe ik plaatjes moet zoeken en van internet

kan halen. Daar leer ik veel van. Maar dat is 1-

op-1. En hij is erg rustig. Ik zou het wel meer willen leren, maar ik durf alleen veel te doen met een kundig iemand naast me. Thuis zit ik nooit achter de computer. Ik ben bang dat ik fouten maak en dat de PC zal “ontploffen”. Ik word er erg zenuwachtig van. (interview, female, 43, SL)

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Several respondents reported problems in concentration and recollection in learning digital skills. This made dealing with ICT more complex for them. Some experiences regarding this matter were: Ik heb wel computerdiploma's en op school heb ik les hierin gehad. Maar de informatie van destijds is wel veel weg en dat frustreert me een boel als ik daar mee bezig ben. (interview, male, 30, SL) Ik zou het wel meer willen leren. Ik heb bij Phoenix wel cursussen gedaan. Maar door medicijngebruik zijn mijn hersenen niet zo goed meer. Het beeld van het scherm kan ik niet mee overweg i.v.m. mijn ogen. (interview, female, 66, SL) Ik heb geen zin om het meer te leren. Het kost te veel moeite. Mijn mogelijkheden voor informatie verwerking zijn heel slecht. (interview, female, 45, SL) Ben het een beetje aan het leren. Via begeleiding. Maar ik vind het moeilijk om het allemaal te onthouden. (interview, female, 52, CR) These experienced difficulties can probably easily result in turning away from ICT, since learning opportunities are decreased.

The non-users of computers and internet Non-users are as important in this study as users, since they reflect opinions and barriers that can be very informative and interesting. Possibly these barriers for non-use can be overcome. As can be seen in table 13, 18 respondents (28.6%) do not possess and make use of a computer. An internet connection is not possessed by 28 respondents (44.4%) and 20 respondents never use the internet (31.7%).

Computer

Internet

No possession

18 (28.6%)

28 (44.4%)

No utility

18 (28.6%)

20 (31.7%)

Table 13: non-users of computers and internet, in n and %

The most reported reason for non-use (n=6) was that people considered it to be too difficult to learn: Ik

snap

gebruik

van

"knoppen"

niet.

Zie

het

als

een

"trukendoos"

(questionnaire, female, 62, SL) Another common heard reaction was that people were not interested in it (n=5). Several respondents consulted a partner or friend to do things for them on the computer / internet, which reduced the necessity to learn it themselves.

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Dit is gebruikersgemak. Ik beschik er niet over. Ik heb ook nooit een eigen computer gehad. Ik heb er nooit intensief mee leren werken en dan leer je het ook niet. Ik heb ook geen interesse om het te leren. Ik maak me wel via andere media kenbaar. Ik heb het in mijn studie biologie wel gebruikt, maar toen het neerkwam op het verslag maken heb ik het laten hangen. (interview, male, 36, SL) Ik heb er weinig zin in om voor een scherm te zitten. Ik wil meestal buiten zijn. Ik kijk ook maar een half uur per dag tv. (interview, male, 47, SL) Several respondents (n=3) expressed some form of reluctance, which made them not use computers. One respondent explained her antipathy against computers was that technological developments destroy the environment: Ik heb hier erg lang een aversie tegen gehad. Ik ben heel lang tegen technische ontwikkelingen

geweest, omdat ze het milieu verwoesten. Ik

was er erg voor dat alles weer zo wordt als vroeger, bijv. in de jaren '30. Dat was wel erg dwangmatig, deze gedachten. Ik zie nu wel meer dat techniek ook ondersteunend kan zijn aan het milieu. Als je een computer maar niet gebruikt als wegwerpartikel. Ik ben wel erg voor duurzaamheid. Ik zit inmiddels bij Phoenix op een computer cursus. Ik wil als ik het wat beter kan dan ook een computer aanschaffen.(interview, female, 37, CR) Twice cost aspects were mentioned as a reason for non-use. Three respondents intended to learn how to handle a computer in the future.

Meanings towards ICT Meanings towards ICT vary among the devices. Fixed and mobile telephone and TV were, for example integrated in the lives of the great majority. Several respondents were even surprised these questions were being asked. The use of mobile phones to send text-messages was not very high. Most often was expressed as a reason for not sending text messages that it is too difficult (n= 12). The meanings regarding computers internet varied enormously On the one extreme are respondents that either fear the devices or are just not interested in it and on the other extreme are respondents that cannot imagine to live without computers and ICT. Although several of the above presented statements referred to this matter some things need to be highlighted. The

internet

was

most

often

used to

search

for

information

(n=34),

followed

by

communicating with others via e-mail or skype (n= 24). One respondent referred to the benefit of accessibility of information by saying: Computers vond ik eerst maar niks. Toen internet kwam vond ik het geweldig; de hele wereldbibliotheek thuis. (interview, female, 43, SL) Another respondent also emphasized that by using internet several specific information could be found:

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Je hebt toegang tot heel veel informatie en kunt daardoor heel veel specifieke informatie opzoeken. De keuze is dus groot. En, je hoeft de deur er niet meer voor uit. (interview, male, 34, SL) Not having to leave your house, in order to find information is thus a specific benefit of internet. Internet was also described as a good way of spending time: Het is erg prettig tijdverdrijf. Je kunt het raadplegen op momenten dat je het zelf wil. Ik gebruik het vooral om nieuwe contacten op te doen, al verloopt dit stroef. Ik voel me soms best eenzaam. (interview, male, 57, SL) A problem for some was that it can become addictive to use the internet. One respondent for example, explained to be using the internet for about 30 hours each weekend. Ik vind het internet erg leuk. Je kunt er van alles vinden. Maar ik moet het wel reguleren. Eerder zat ik soms in het weekend wel 30 uur achter het internet… gewoon dingen opzoeken, mailen, muziek downloaden enzo. Maar dat doe ik nu niet meer zoveel hoor. (interview, male, 48, CR) There were also respondents that attached negative meanings towards the internet. Most often not being interested was explained as a reason (n=7) followed by not understanding it (n=6). One respondent emphasized on his disinterest by saying: Ik heb weinig zin om voor een scherm te zitten. Ik ben liever buiten. Ik kijk ook maar een half uur per dag tv. (interview, male, 47, SL) Some respondents mentioned that the medium is not safe, since others can write anything they like on the internet. As one respondent, who uses the internet elaborated: Ik chat nooit, want ik denk dat ‘t allemaal onzin is. Ik heb liever persoonlijk contact. Ik hoor ook wel eens dat er kinderlokkers achter zitten. Het is dus niet altijd veilig, je moet er dus wel mee uitkijken. (interview, female, 54, SL) This respondent also explained to prefer to see someone in real life. This argument was given by more respondents. There were, however, also respondents that emphasized that internet is for them a safe medium. One respondent explained that when she wants to buy something, for example a washing machine, she compares several machines by searching websites on the internet. For this respondent the threshold to use the internet was lower than calling or visiting shops: Ik gebruik het internet voor alles: het lezen van de krant, het bekijken van het weer. Ook als ik bijvoorbeeld een nieuwe wasmachine nodig heb, ik vergelijk eerst de prijzen en soorten op internet. Dat is voor mij veiliger dan een winkel bezoeken of bellen…. ja, ik vind het internet onmisbaar. (interview, female, 48, SL) To conclude, meanings towards ICT vary by the medium. Several respondents were surprised by the question of access to TV. This medium seems to be accepted and used by nearly all. The access to computers and internet is less high. The results present great differences in access to computers and internet among respondents. Access can be divided in three groups of

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approximately the same magnitude: daily users, non-users and the in-between group that uses internet some times. Among the non-users most respondents have never used a computer. Fear of the medium or disinterest is often the reason.

Sub-question 4: To what extent do clients view current ICT technologies as tools to enhance their empowerment?

Respondents were asked if they were interested in using supportive ICT tools for contact with others or for more information. A majority of the respondents (n=38, 60.3%) are interested in certain technologies, but of this group several respondents answered that they would like to try it, but that they were not sure whether to be using it often or whether they would just look on it for more than once. As one respondent elaborates on this matter: Ik denk dat dat te specifiek iets is voor de jongere generatie. Ik denk dat ik er wel 1 keer op zou kijken om te kijken wat jullie er van hebben gebrouwen. Maar dat ik er echt verder veel mee zou doen, nee. Maar de jongere generatie die toch meer met de computer zij opgegroeid, die ja... Ik keur het helemaal niet af, maar ik denk dat het zeker iets is voor de jongeren. (interview, male, 63, SL) Some respondents mentioned several benefits in online communication. These benefits were also expected to be found in the ICT-tool. One respondent mentioned: Maar via de chat kan ik er wel mee omgaan (met lotgenoten, red.), maar dan zie ik niet dat ze aangedaan zijn of zo. Mensen kunnen dan uiteraard zeggen: ik huil, maar dan zie ik het niet en komt het ook niet zo binnen. Toen ik bijvoorbeeld minder goed in mijn vel zat heb ik veel ge-chat met iemand uit Amerika. Een voordeel is dan ook het tijdsverschil. Meestal als ik me rot voel, voel ik me 's avonds laat rot, wanneer anderen naar bed gaan. En dan komt dat mooi uit met het tijdsverschil met Amerika, dan is zij ook online. Door de afstand van de chat werkt dat voor mij goed. Ik kan haar dan wel dingen vertellen zonder dat ik haar daar mee bezwaar. (interview B, female, 38, SL) This respondent mentioned the aspect of time, which is often seen as a benefit for online communication. She also mentioned emotions of other to have less impact via e-mail than in face-to-face communication. This aspect of expressing emotions was also mentioned by another respondent who judges internet therefore as a blessing for him: Internet is een zegen voor mensen zoals ik. Als ik emotioneel ben dan is e-mail makkelijker. Je stoort anderen niet en je kunt je makkelijker laten gaan. (interview, male, 36, SL) There were 13 respondents (20.6%) who explained not to be interested in this way of communication. Their motives for not wanting were that they did not long for it (n=3), they found it scary or they had no confidence to meet new people this way (n=3). One respondent explained:

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Nee, als ik contact wil moet ik iemand gewoon zien. Ik ben heel wantrouwend. Het is niet altijd veilig en ook onpersoonlijk. (interview, female, 45, SL) Also was mentioned that due to ICT respondents experienced more health complaints (n=2). One respondent elaborates on this matter: Nee, ik denk het niet. Ik krijg vaak heel heftig last van stemmen. Ook als ik tv kijk. En kennissen daarmee

opdoen, dat vind ik eng

(interview, female, 52, CR) Respondents were asked which possibilities they consider as important for this tool. This was in the interviews an open question. For many respondents this was a difficult question to answer, since they do not have an example of certain technologies. In the questionnaire this question was asked and several answer categories were given. Due to the complexity of the question this was considered necessary. The reactions were diverse. Most often mentioned was to get up-to-date and more information of the organization (n=12) and the opportunity for contact with others (n=6). Sharing information and receiving and giving tips to others of how to deal with certain things was also mentioned 6 times. Getting in contact with peers was mentioned 5 times and meeting clients who also receive care from the organization was mentioned

4

times.

Four

respondents

were

interested

to

increase

contacts

in

the

neighbourhood. One respondent mentioned that a Hyves-version would come in hand in order to find people: Als ik via die site mensen kan vinden zeg maar. Dat zou wel handig zijn. Ik hoef natuurlijk niet meteen alles te weten. Een soort Hyves versie van de RIBW dat zou wel handig zijn. En informatie over de RIBW en wanneer de apotheek open is en zo, dat zou wel dingen makkelijker maken. (interview, male, 30, SL) Another respondent emphasised that exchanging experiences and tips was important for him: Dat je elkaar leert kennen. Dat je bijvoorbeeld eens dingen samen kunt doen of dat je bijvoorbeeld eens ervaringen uit kunt wisselen. Bijvoorbeeld waar iemand al ervaring in heeft wat voor jou nieuw is en zo. Ja weet ik veel dat soort dingen. (interview, male, 30, SL) Respondents also mentioned functional requirements for the system. Often mentioned is that a system needs to be safe (n=5), user-friendly, personal and easy accessible. Also to be able to see each other was considered important for a few respondents (n=3).

Some respondents had more experiences on interactive communication on the internet. They both emphasized the need for rules of behaviour / supervision on a forum: Ik denk dat er heel gericht iets aangeboden moet worden op zo'n forum. Niet zo maar een 'board' waarop je zegt: ga hier maar op zitten praten. Ik heb er wel veel ervaring in. (...) ik heb wel strenge regels als bijv. dat wanneer je boos bent je je message eerst drie keer moet lezen voor je 'm post. En dat als je je mening geeft dat je moet zeggen 'ik vind'. En dat werkt blijkbaar. Ik heb

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nog geen drama's meegemaakt. Ik denk dat je er dus wel strak bij moet blijven wat er wordt gezegd. En zeker met mensen die gevoeliger zijn. Ze zijn toch sneller gekwetst en voelen zich sneller afgewezen. Die dingen komen heel nauw op het internet. (...)

Maar als daar echt goede informatie op komt te

staan dan denk ik wel dat ik er iets aan heb. Ik kom daarvoor heel vaak nu op een forum terecht.(...) Bijvoorbeeld wat er bij Phoenix te doen is. Ze hangen daar

nu vaak postertjes neer, maar die zie ik niet of te laat. Het kan de

communicatie lijnen wat verkorten. (interview B, female, 38, SL) Je kunt er heel veel uithalen, goede gesprekken hebben met mensen. Er staat veel informatie op en je kunt veel aan anderen hebben. Als je met elkaar er over kunt praten kan dit opluchten. Maar er zitten ook mensen bij die de boel verzieken, die niet weten hoe er mee om te gaan. Dat worden rare contacten. Ze zijn bijv. op rare dingen uit, of ruzies die ontstaan, rare verhalen die elkaar aansteken en zo. Maar als je het gewoon gebruikt waarvoor het bedoeld is kan het heel prettig zijn. Ik ben er om deze reden helemaal mee gestopt. Er moet dus op zo’n website wel in de gaten gehouden worden dat er geen rotzooi getrapt wordt. Sommige mensen denken dat het een zielig gebeuren is, zo'n lotgenoten groep. En die verpesten het voor anderen. (interview, male, 30, SL) Respondents were asked if this technology could contribute to their empowerment / selfdetermination. In total, 23 respondents (36.5%) believed this could contribute to it. The most frequently given answer was that it could be beneficial for people that are feeling lonely, it makes you feel better and it gives the ability to share experiences (all three n=4). Some respondents expected that it would increase their independence: Het vraagt meer eigen inzet en zelfstandigheid en minder afhankelijk van direct contact met de begeleiding. (questionnaire, male, 35, CR) Twelve respondents believed this technology would not contribute to their empowerment. The most heard reason is that they do not want to share their problems with others (n=4): Nee, want ik zal mijn problemen niet delen met anderen. Misschien is het wel goed tegen de eenzaamheid.Of je er beter van wordt dat moet je nog maar bezien. Het zijn toch allemaal mensen uit de psychiatrie. Die hebben genoeg aan zichzelf. (interview, male, 39, SL) Another reason mentioned (n=2) that such an ICT tool is just for fun: Nee, dat is voor mij gewoon plezier, misschien een beetje vrije tijdsbesteding. (interview, male, 38, SL) To conclude, most anticipated empowering aspects that were mentioned were similar to aspects mentioned prior. Reducing feelings of loneliness was not mentioned before. As well as several, specifically to ICT attached possibilities. Most respondents seem interested in a certain tool and some think this will contribute to empowerment. This sub-question can be answered by saying that to a certain extent empowering aspects are being expected from a tool, but as some respondents stated probably these effects will not be all too high.

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5.3 Correlation between several variables Several variables have been compared with each other by performing a regression analysis. This was done to see whether these correlate and whether this correlation is significant. These will be described in this paragraph. First of all having contact with peers was compared with other variables. Having contact with peers does not correlate with the respondents’ gender or living situation (alone / with others). Age however does correlate significantly with having contact with peers, at the 0.05 level of alpha (p=0.035). The duration of stay in the organization correlates with the interest in peer-to-peer contact, but this is however not significant (p=0.083). Interest in an ICT tool was also compared to several other variables. This resulted in one significant relation between age and interest in an ICT-tool (p= 0.021) in the negative direction. Several other variables were however not correlated to being interested in an ICTtool. These variables are the current access to ICT, the respondents’ gender, or duration of stay in the organization.

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6. Discussion and conclusion This chapter reflects on the results, in order to search for clarification and conclusions. In this review the sub-questions will lead the chapter in order to keep it conveniently arranged for the reader. After this discussion the chapter continues with an overall conclusion of the main research question. As is the case with all studies, also this study has its limitations. The last paragraph describes these limitations.

6.1 Methods for embracing empowerment of persons with long-term psychiatric problems Information Information is considered important in empowering processes. Almost all respondents described to seek information concerning their health. In the top of most mentioned sources of gathering information (together representing 40.9 % of the total) are the regular health care providers (GP /specialist and mentor). Most respondents seem to rely on the regular health care providers as a source of health information. Trust in these providers might be of influence for these high rates, which is supported by literature, as an important reason for consulting GPs (Henwood et al., 2003). General information on the internet was mentioned by nearly half of the respondents as a source of information. Mental health problems are often associated with stigmatization. As was mentioned in the literature review, stigmatized illnesses are likely to increase the use of internet for information seeking (Berger et al., 2005). It is likely that the anonymity of the internet is seen as a benefit. The result of health seeking behaviour on the internet is equal to figures of the average Dutch population (48% vs. 52%). Perhaps this is surprising, since the access to internet of the respondents is much lower than the average Dutch population (see figure two in paragraph 6.3 for more details). Although the data from the Dutch population are based on a three month time-frame, straightforward comparison could be biased. In search for a clarification, assumed can be, that most persons with psychiatric problems, experience more health problems than the average Dutch population, which therefore increases the number of people turning to the internet for information. Respondents have in general also enough time due to, in general, low time that is being spent on day activities. The social network is consulted rarely for more information on health related matters. Several respondents mentioned during the interviews that they experienced less understanding in contacts with 'non-peers', also within their social contacts, which can be of influence for this result. It could be that respondents believe that their social network does not understand their problems all too much or that they do not want to bother others with their problems. Peers are, however, even less consulted. This is interesting since respondents expressed that peers recognize and understand each other’s problems differently than non-peers do. A direct explanation for this low level is not found. It is possibly not very socially accepted to share your problems with others (both peers and non-peers), without a specific context in which this is appropriate (like a course or a self-help group). Since in this context information sources were explored without a specific context this could explain the results. Most peer-interaction takes place in informal settings, like a Day Activity Centre. In these environments peers meet

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each other, but conversation often sticks to common subjects. It is thus likely, that many positive benefits, such as understanding each other better are not experienced in relation to active sharing of information concerning health. Most respondents explained to use several different sources to get informed about one certain health topic. In this sense it helped to verify, confirm and reassure themselves in their knowledge on their health. This is, as literature widely supports, important in enhancing empowerment. Principles of the 'informed patient' therefore seem to merge their way into the information seeking behaviour of this specific group.

Participation in society The results indicate that participation in society is not achieved easily. Still a large group does not have any day activity and the average time spend on work is also relatively low. Other studies on this subject confirm this fact (Michon et al., 2008). The often high burden of disease is likely to make participation in day activities hard. From own experiences as a mentor, I know that persisting in day activities is often experienced as difficult by many clients. Besides these interpersonal and disease related facts, 'society' itself declines chances for participation as well. Several respondent expressed difficulties in contact with persons (e.g. negative attitudes) or authorities (e.g. hindering issuing of rules) in society. The problem of participation could therefore be two-sided, namely both factors from mental health clients and factors from society decline opportunities for participation. This is in line with findings from a study of Michon et al. (2008). Efforts to change this for the better should therefore also be supported by changes in both of these groups. A difficulty is to what extent participation is to be realized in order to speak of success in community-integration. As was discussed in the literature review, authors disagree on the accepted level of participation (Michon et al., 2008). If, for example, the participation in Day Activity Centres is taken into account the participation in society is much higher, than without including this. As was also suggested by Michon et al. (2008) there is a lot not known regarding this complex matter. More research regarding this subject is therefore requested to create insight in effective interventions.

6.2 Influences of peers, mentors and neighbours on empowering processes Contact with peers Peer-interaction is widely associated with many positive aspects by respondents. Most respondents view peers as positive contacts who understand their problems in a different way than non-peers do. The most mentioned positive aspect of peer-to-peer contacts is recognition. This recognition is, however, not always found in society. Peer contact could in this sense be seen as 'converging'; peers turn to each other and feel pleasant and secure in these contacts. Contacts in society, however, are often viewed as difficult, since there is often less understanding. It could therefore be viewed as 'diverging', meaning that there is some form of distance between the two groups. Some mental health clients could, as a result, choose to reduce their contacts with people in society and instead turn to contacts with peers. It is likely that, if these two aspects reinforce each other, this has a negative impact on participation in society. Incentives to reduce this gap are therefore of essential importance to stimulate

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empowerment. Peer contact is not always experienced as positive though. Disadvantages dealt with confrontation and difficulties in coping with other people's problems. Confrontation with disease-related aspects, one is not capable to change, is hard. Empowerment is about finding a new meaning in life, taken the disease into account. Confrontation could be of influence in empowering processes. Being confronted with own problems, is an important incentive to change how to cope with it in the future. This is referred to by Aujoulat et al. (2008) as 'letting go'; accepting that not everything is controllable.

Contact with mentors According to the respondents, the care process in the organization if focused primarily on talking. In talking one can think of sharing and reflecting on experiences, planning of goals etc. In practical support, 'doing things together', a great majority of the respondents (85%) receives never or only sometimes assistance. The mentor is thus mostly a person who supports in sharing of experiences and learning to cope with events in life. They are thus important facilitators of empowerment of clients. It is likely that mentors could foster empowerment by assisting clients in participation in society. Doing things together is then inevitable. In practice, however, the focus seems to be on support by 'talking'. The care is organized in planned appointments between mentor and client. Several respondents mentioned to experience difficulties and doubts in contacting their mentors besides these planned appointments, although the need for it is felt. Often it is caused by feelings of being afraid to bother the mentor. ICT can be helpful in improving this problem. Some respondents, for example, mentioned that sending an e-mail instead of telephoning, reduced feelings of bothering the mentor, since the mentor could read the mail at a suitable time. Calling a mentor on the crisis number was experienced as a threshold, for some respondents. This was influenced by having to call an unknown mentor. Being able to see each other when having a conversation could reduce this threshold. For the mentor it could be helpful to judge the situation more properly when one could see the unknown client. Other possibilities ICT entails are that care can be provided at a distance (in literature referred to as tele-care), at different times and with little extra effort. In community-care distance between mentor and client is reducing the flexibility of the workers, since much need to be invested in optimal planning of time. Therefore, some forms of the regular health care process, could be extended by tools that enable to have contact, without always having to bridge the distance physically. In the home-care field video-conferencing systems are increasingly being used for this matter. Knowledge from experiences in other fields could be interesting to investigate whether these could be of use in this field as well. Important to mention is that ICT can never come in place of actual face-to-face contacts. As an extension to increase the flexibility it seems however a good solution to improve quality and satisfaction of all involved.

Contact in the neighbourhood Most respondent have contact with their neighbours and it is valued high. Although there are several respondents that mentioned only to greet their neighbours, also a great amount of respondent have more intense contacts. This might implicate that respondent do not find too

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Home-ICT as a tool to stimulate empowerment for clients with long-term long psychiatric problems

much difficulties in getting to know their neighbours. The contacts, increase feelings of sa safety (possibility to consult neighbours in time of need) and pleasant living, which can contribute to positive role setting in empowering processes. Integration in the social environment, as was discussed by Wong & Solomon (2002) consists of three dimensions. dimensions. The first is the extent of participation in activities and utility of goods in the community. As was discussed in paragraph 6.1, this dimension is difficult to realize. The second dimension, the social integration, is about

contacts with neighbours and the size and variety in the social network. There seem to be no problems in getting in contact with neighbours among respondents. These contacts are likely to contribute in the variety of social contacts respondents have. Feelings of belonging to the

community is the third dimension,, which was also endorsed by respondents. It seems legitimate to conclude that respondents succeed in several aspects of community communityintegration. Whether they need to be stimulated to increase the contact in their neighbourhood

is s questionable. Also since most respondents expressed little interest in increasing contacts with neighbours. Respondents seem to find their ways in contacts within their neighbourhood and experience these as valuable. This is a very strong point in regard to empowerment.

6.3 Meanings attached to ICT Meanings associated with ICT vary enormously. For some it is hard to imagine that there are people that still have no computer or TV. For others it is the other way around: they believe

there is more to life than an internet and TV. And there are many opinions in between these extremes. There is thus much heterogeneity in this group. The access to ICT is an important condition to eventually join participation in an ICT ICT-tool. The telephone and television are accessed accessed and used often. The acceptance of these media is high. There is, however, a gap in access of computers and internet when results from this group are compared to figures from the average Dutch population (CBS, 2007), visualized in figure 2.

Figure 2: access ccess to computers and internet of respondents versus the average Dutch population

It seems legitimate to conclude that there is a digital divide in access to computers and internet in this group. Numerous respondents, who do have access in 'technical se sense', expressed feelings of discomfort, ranging from modest discomfort to computer-fear, computer fear, like being

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afraid the machine will 'explode'. Several authors, studying the digital divide state that 'feeling at ease' with a technology should be realized before one should talk of access (Wyatt et al., 2005; Van Dijk, 2003). Taking this fact into consideration, the level of complete access of this group is thus even lower than the results that are presented in the previous chapter. From the belief that equal access to resources is important, it is necessary to know reasons why people do not want or do not have access. Wyatt (2003) distinguished four types of nonusers, which she called the resisters, the rejecters, the excluded and the expelled. In this study all four categories of non-users can be distinguished. The biggest group of non-users consists of resisters (n=7), followed by the excluded (n= 4). Both have in common that they never had access to internet. The most mentioned reason for non-use is that respondents believe it is too difficult to learn. Improving the possibilities for access and digital skills are thus important. Mentors could hereby have a prominent role. From their personal, trusted and close contact with clients, mentors can support in initiation of the internet. Also after the initiation the mentor can also have a role in getting familiar with the medium. They could thus serve as a 'warm expert' as Bakardjieva (2005) describes. This approach, described in chapter two, emphasized on the importance of a trusted person, who has skills and knowledge of internet and can transmit this knowledge in a way that will suit the needs of the client. The role of the 'warm expert' can thus be important in reducing the digital divide. Mentors can instead of serving as a warm expert themselves, of course also stimulate in consulting a friend or relative that can serve as a warm expert. The mentors have another advantage in regard to reducing the digital divide. Several respondents mentioned that using computers and internet is difficult due to problems in recollection, concentration or other disease-related aspects like increasing of hallucinations (hearing voices). Mentors are, from their profession, experienced in taking these problems into account, which is a necessary premise.

6.4 Opinions regarding ICT technologies as tools to enhance empowerment The majority of respondents are interested in some form of ICT-support to improve communication and information options. This result was surprisingly high, considering the fact that computers and internet are not highly accepted by many respondents. There was also no correlation found between current access to all forms of ICT investigated, and interest in an ICT-tool. Respondents do not seem to link their interest in a tool to the digital skills required. Digital skills are however required in order to use a medium well. Since many clients do not have sufficient skills, suggested is that this ICT-tool is to be developed in a way that all interested individuals can participate. Therefore the medium by which this tool is transmitted, must be considered thoroughly. Age has been found having a correlation, in a negative direction, with interest in an ICT-tool. This means younger people are more interested in the ICT-tool than older people. Younger people are possibly more used to and educated with communication by means of the internet than older people which might explain this correlation. The correlation analysis also demonstrated that, the older the client is the more contact with peers he or she has. This could reinforce the previous statement. When older clients have sufficient contact with peers,

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they might be less interested in an ICT-tool to enhance these contacts. This study gives some indication of possible empowering effects that are anticipated on in using ICT-tools. The most mentioned expectations of respondents all had to do with a communication aspect (reduce feelings of loneliness, sharing experiences and feeling more secure), although this third aspects can also be enhanced by retrieving information. Several of these anticipated empowering processes were mentioned prior in questions regarding other matters. Reducing feelings of loneliness was not mentioned before though. This could be explained by taken benefits of an ICT-tool into account. Possibly, these feelings of loneliness are most felt at times when it is not easy to contact others (e.g. during the night, the holiday seasons). An ICT-tool will likely not be tied to time or place and can therefore be accessed more easily. Knowing that more people experience these feelings can likely be very supportive in empowerment. Enlarging face-to-face contacts was not a wish of most respondents, while it was mentioned as a wish by many in regard to an ICT-tool. Being able to interact with others, at different times might, for this matter, also be a considered benefit, since some respondents stated that when they felt distressed during the evening time they would consider contacting a peer if this was possible. There were also reasons for respondents for not believing in empowering processes due to an ICT-tool though. The two most mentioned reasons were that they do not want to talk about their own problems with peers; they use an ICT-tool just for fun. This is interesting since talking about problems is here thus being associated with empowerment. Talking about problems can indeed be empowering. But in empowering processes this is not a necessity. Several respondents seem to associate the concept with talking about problems though. In regard to possible benefits that ICT can offer participation in society, these benefits are expressed minimally. Only a few respondents mentioned that an ICT-tool can enhance their possibilities for interaction with their neighbours. This is in accordance with previous statements of not being interested to increase contacts with neighbours. There are no studies found in which ICT was used to enhance contacts in the neighbourhood. Some mentioned that increasing contact with persons outside the organization was aimed for, without specifying whom exactly.

6.5 Overall conclusion As described in the introduction, support of empowerment for persons with long-term mental health problems, entails focussing on the individual needs of clients within their social context and considering personal wishes and interests. These individual needs indeed vary from person to person. There are, however, several elements, described in literature, which are considered to be empowering for many. These are the search for information and the interaction with peers. Both of these aspects are reinforcing the interpersonal empowering processes. Enlarging peer-to-peer contacts is, however, not a wish of the respondents of this research. An ICT-tool can however facilitate in increasing the quality of contacts in regard to empowerment. Reducing feelings of loneliness was mentioned as an anticipated benefit. Being able to contact others, at other times than regularly possible, can be reinforced by ICT. This specific element will be the strong point in using an ICT-tool for this group.

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The second dimension of empowerment in mental health is the community-integration. Interaction in the neighbourhood is satisfying and empowering in the sense of feeling safe and wanted. Participation in broader society is more complex. Personal aspects, such as incompetences and negative attitudes from 'society' make this process more difficult. This study aimed to investigate in what way an ICT-based tool can be supportive in these processes. In regard to the interpersonal dimension of empowerment, ICT can be supportive. Information can be made more accessible and interaction with others can be stimulated. Community-integration was as well explored, but as was described before, this process cannot be directly reinforced by an ICT-tool. Participation in society is felt as difficult by many. Some clients succeed in participation, but many report difficulties. Participation is, possibly even more than the other facet of empowerment, an individual process. It is highly influenced by someone's stability in illness, the personal preferences and wishes, the individual chances etc. If ICT can be beneficial in this personal process is difficult to judge on basis of this explorative study. This will be interesting to study, but probably other research methods will be more effective than this one to study this matter. Possibly the disorder of clients plays a role in interest in ICT-based tools and possibilities for empowerment. This was not explored in this research, but can be interesting for future research on this matter. To conclude, opinions on how care for long-term psychiatric clients should be organized, has changed a lot for the better since the first steps have been taken in deinstitutionalization thirty years ago. In the future there remain a lot of steps for improvement. Facilitating clients in their empowerment process remains an interesting challenge for the future. Hopefully insights from this study will contribute to ways of looking at empowerment in mental health.

6.6 Limitations of present study This study has two limitations. First, the construction of the questionnaire can contain a bias. Answers given on the interest in and possibilities of an ICT-tool could be influenced by prior questions on contacts and information gathering techniques. This order of question was however deliberately chosen to first create insight in current information and communication options by the respondents. A second limitation is that opinions were investigated on an ICTtool that does not exist. Experienced was that it is difficult for respondents to imagine opportunities and wishes outside of their current frame of reference. It can result in more socially-desirable answers.

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7. Recommendations This chapter presents recommendations, which are important to take into consideration when one thinks of developing an ICT-tool for this specific group. These recommendations are based on the results, the discussion and the conclusion. The respondents that participated in this research are in several aspects comparable to the total client group within the organization. There are also similarities found comparing demographics with results from a study by the RIBW Alliance (De Heer-Wunderink et al., 2007). Therefore, although caution is still required, the recommendations are generalized to the total population of clients at least within the organization. There are reasons for believing that empowerment as it was defined in this study, can be enhanced by ICT for this specific focus group. There are however several factors that need to be taken into account. Recommendation 1: Respondents are in general positive about social contacts with peers, mentors and their neighbourhood. There seems to be no direct urge to expand these contacts though, by the majority of the respondents. The interest in a tool is nevertheless high, which suggests that there are other expectations for this tool than for regular face-to-face contacts. Reducing feelings of loneliness and being able to contact others at other times (e.g. in the evening and during in the holidays) was referred to. The heterogeneity of this group is, however large. This results in a wide variety of wishes regarding interaction with others. The empowering effects of an ICT-tool, concerning communication, could therefore be less high than is expected, since chances of finding someone that meets your wishes in a small group is low. Scaling up to a more broad intervention, beyond the borders of one organization could in this sense be recommended for optimization the benefits of ICT in interaction. In this way, various possibilities could be offered in this tool, whereby the client can choose which options fulfil his or her wishes. The tool will be more tailored to individual wishes in that way, which will increase the success of it. In regard to communication, the wish for more flexibility in contact with mentor was expressed by several clients. ICT can be of support in this, since it entails possibilities for qualitative good care which can be provided from a distance. Recommended is, that this wish will be taken into account when developing an ICT-tool. Recommendation 2: Using ICT as a method for enhancing empowerment is not suitable for all. There will always remain groups that prefer other options for communication and information. This can be due to several reasons which are in more or less extent changeable by influence of others. The aim, however, should not be to persuade all individuals to use one specific method. An ICT-tool should be seen as an extension of methods, making the options for choosing a method that suits one best, more rich.

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Recommendation 3: Access to, and acceptance of computers and internet are not very high among this specific audience. Although there is a group of daily users, there is also a large group who have never used computers or the internet. Meanings attached to computers and internet varies accordingly from computer-fear to complete adoption of the device. For the ICT-tool to enhance empowering processes other alternatives than the computer are possible though. For example a television can also facilitate in these processes and is a much more accepted technology by this group. It is important to search for a medium that is accepted by the great majority and which has a positive or at least neutral association. Recommendation 4: The point remains that the digital divide is there and needs to be diminished. This group is, as was discussed prior, vulnerable for exclusion from the internet. This exclusion has serious results in regard to retrieving information and participation in social life. Mentors should play a prominent role for clients in the learning and acceptation process of ICT. They should investigate reasons for non-use or low-use and collaborate with clients in how to overcome this. Mentors are experts in knowing and understanding disease related aspects, like lack of concentration and problems with recollection, which are essential to take into account in the learning process. In this sense I would like to recommend strongly that this aspect will become a regular subject in conversation with and care provided to clients. When nothing is done the digital gap will evidently only increase! Recommendation 5: Being well informed increases ones empowerment. The internet can facilitate in this information services. However, many clients do not have the digital skills to find information that they are seeking on the internet. The ICT-tool can facilitate in this by for example giving an overview of relevant websites or authorities. Recommendation 6: Community-integration is a central aspect of empowerment. It is about finding ways to decrease the role of 'patient' and increase the role of 'citizen'. Community-integration is difficult to stimulate by means of an ICT-tool. Adequate information could play a role, as well as experiences from other peers, but directly reinforcing community-integration by ICT is difficult. The level of community-integration is different for each individual, which will result in specific needs for each individual. Suggested is that community-integration can be influenced more effectively by other interventions than using ICT. Recommendation 7: Viewing the wishes of the respondents, the question arises whether there are in fact tools on the market that can facilitate in these wishes. Recommended is that this will be explored prior to developing a tool oneself. Possibly in other health-care field, like home care, comparable tools have been developed that will match these criteria.

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Recommendation 8: Investigating requirements for ICT-tools by means of an interview is difficult. Especially when there is much uncertainty about the actual 'product' one is referring to, as is the case in this research. Very often it occurs that technologies are being used for different purposes than it was initially intended for. Asking respondents for requirements and possibilities is therefore considered unreliable. Other research methods need to be undertaken to confirm the requirements mentioned in this research. Recommendation 9: There are respondents that describe being interested in an ICT tool enabling them to communicate with peers or retrieve more information. These people can be seen in this sense as 'early adopters', as defined by Rogers (1995). Although they might not have complete access to ICT this group seems to be the best group to consult in order to set up a pilot or in creating a group who help disseminate the idea. Their motivation is the best driver for others to get interested. Recommendation 10: When interactive communication takes place with a time interval, like for example on a forum, the need for some form of moderation exists. This could be in the form of a more or less directed offer. Just 'talking' on a website seems to contain some disadvantages like were mentioned by two experienced respondents. Rules of behaviour seem to be important as well, to guide the way in which conversations take place. It seems the best to strive for someone in the organization to moderate the tool.

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Glossary Description of participating organization: RIBW Nijmegen & Rivierenland The case study has been performed at the RIBW Nijmegen & Rivierenland. This organization is providing professional care to persons with long-

term

psychiatric

and

psycho-social

problems. The letters RIBW are short for Regionale Instelling voor Beschermd Wonen (translated Regional Organization for Community Residences). Each region in The Netherlands has its own RIBW, which are sometimes these are integrated in a broader mental health facility. RIBW's see themselves as the bridge between mental health and society (De Heer-Wunderink et al., 2007). This results in intensive collaboration with a great range of different social and welfare services, like social workers, job centres, the municipality and housing societies and more (NVBW, 1996). The care provided is characterised by supporting that clients regain or maintain their roles as citizens in society. Empowerment, negotiation and collaboration are a few of the main values in the care given. The care provided by the RIBW Nijmegen & Rivierenland can in general be split up in three forms:

−

Community Residences (Beschermd Wonen): clients live together in groups in the community, houses are owned by the organization. Clients receive care at home and pay an AWBZ-fee12.

−

Supported Living (Begeleid Zelfstandig Wonen): clients own / rent their own houses and receive care at home.

−

Day Activity Centres (Dag Aktiviteiten Centra): offering activities and job-related trainings. Phoenix (Nijmegen), de Arc (Druten) and de Dolfijn (Tiel) are the names of the three DAC's.

In total, 1244 persons receive some form of care from the organization13, 27% of the client population live in community residences, and 73% receive supported living. The organization has 296 employees14. The organization belongs to the top 10 of Dutch small organizations as best employer over 2008. The average rate of an employee-satisfaction survey was 7.9 (volkskrantbanen.nl). Clients give an average satisfaction rate of 8.1 (De Gelderlander).

Rehabilitation approach The rehabilitation approach is widely acknowledged and accepted as a perception towards how care for long-term mental health clients is to be provided. In the organization in which this case study has taken place the rehabilitation approach is a crucial aspect in the care provided. The origins of the approach stem from the 1970's in the UK and USA. The fundamental idea behind it was to improve quality of care for long-term psychiatric clients. Anthony, among the first authors to explore the concept, states: “In essence, the overall mission of psychiatric rehabilitation is to ensure that the person with the psychiatric disability can perform those

12 13 14

AWBZ is short for Algemene Wet Bijzondere Zieketekosten (Exceptional Medical Expenses Act) Set date: 24-06-2008 Set date: 13-06-2008

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physical, emotional, and intellectual skills needed to live, learn, and work in his or her own particular community, given the least amount of intervention necessary from agents of the helping professions.” (Anthony, Kennard, O'Brien & Forbess, 1986, p.249-250) Recovery is in this approach a key element. As Deegan (1988) explained “Through recovery processes clients become active and responsible participants in their rehabilitation process” (p.11). Rehabilitation is a process which focuses on a client within its social context. Both the client and the social context need to be influenced in order to accomplish change (Lensen & Betsema, 1998).

Mentor In this report the word mentor is used as a translation of the Dutch word begeleider. The word mentor might not explain the profession totally. Therefore a description of the work of a mentor is given in this section. Mentors come from various (educational) backgrounds, which is one of the objectives from the organization to stimulate a broader scope of looking at (care) processes. All clients have at least one, sometimes two mentors (persoonlijk begeleiders) who serve as a contact point. In collaboration a plan is made in which individual goals are formulated for the next year. The rehabilitation approach is central in this process as well as the whole collaboration between mentor and client. In this plan the role of the client is as well as the role of the mentor is specified and possibly also the role of third parties. This plan is the central line in the collaboration. The time span of the collaboration between mentor and client can be very long, often years. This often means that the mentor becomes a close contact of the client and vice versa. In this sense there is often referred to the word professional companion / mate (professioneel maatje).

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References Akrich, M. (1995). User representations: Practices, Methods and Sociology. In Rip, A., Misa, T.J. & Schot, J. (eds.), Managing technology in society. The approach of constructive technology assessment (pp. 167-184). London / New York: Pinter Publisher. Akrich, M. (1997). The De-Scription of Technical Objects. In Bijker, W.E. & Law, J. (eds.), Shaping Technologies / Building Scociety; Studies in Sociotechnical Change (pp. 205-224). Cambridge / London: MIT Press. Anthony, W.A., Kennard, W.A., O'Brien, W.F. & Forbess, R. (1986). Psychiatric Rehabilitation: Past Myths and Current Realities. Community Mental Health Journal, 22(4): 249-264. Aujoulat, I., Marcolongo, R., Bonadiman, L. & Deccache A. (2008). Reconsidering patient empowerment in chronic illness: A critique of models of self-efficacy and bodily control. Social Science & Medicine, 66, 1228-1239. Aujoulat, I., d'Hoore W. & Deccache A. (2007). Patient empowerment in theory and practice: Polysemy or cacophony? Patient Education and Counseling, 66: 1320. Babbie, E. (2007). The practice of social research. Thomson Wadsworth Bakardjieva, M. (2005). The internet society: the internet in everyday life. London: SAGE. Barak, A., Boniel-Nissim, M. & Suler, J. (2008). Fostering empowerment in online support groups. Computers in Human Behavior, 24(5): 1867-1883. Bauduin, D. (2001). Het goede voor de cliënt; Ethische aspecten van vermaatschappelijking in de geestelijke gezondheidszorg. IJkpunten voor beleid. Utrecht: Trimbos-instituut. Retrieved June 29, 2008, from http://www.trimbos.nl/Downloads/Producten/Brochure%20Bauduin%20binewerk. pdf. Berger, M., Wagner, T.H. & Baker, L.C. (2005). Internet use and stigmatized illness. Social Science & Medicine, 61(8): 1821-1827. Bijker, W.E. (1997). The social construction of fluorescent lightning, or How an Artifact Was Invented in Its Diffusion Stage. In Bijker, W.E. & Law, J. (eds.), Shaping Technologies / Building Scociety; Studies in Sociotechnical Change (pp. 75-102). Cambridge / London: MIT Press. Bijker, W.E. (1990). The social construction of technology. Proefschrift Enschede, Universiteit Twente. Boevink, W. (2007). Herstel: over leven met een psychische aandoening. In Boevink, W., Plooy, A. & van Rooijen, S. (eds.) Herstel, empowerment en ervaringsdeskundigheid van mensen met een psychische aandoening. Passagecahier. Amsterdam: SWP. Boevink, W. (eds.) (2006). Verhalen van herstel. Samen werken met ervaringskennis in de geestelijke gezondheidszorg. Utrecht: Trimbos-instituut. Bond, G.R., Salyers, M.P., Rollins, A.L., Rapp C.A. & Zipple, A.M. (2004). How Evidence-Based Practices Contribute to Community Integration. Community Mental Health Journal, 40(6): 569-588.

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Centraal Bureau voor de Statistiek (2007). ICT gebruik van personen naar persoonskenmerken. November 2007. Corrigan, P.W., Slopen, N., Gracia, G., Phelan, S., Keogh, C.B. & Keck, L. (2005). Some recovery processes in mutual-help groups for persons with mental illness; II: Qualitative analysis of participant interviews. Community mental health journal, 41(6): 721-735. Davidson, L., Chinman, M., Sells, D. & Rowe, M. (2006). Peer Support Among Adults With Serious Mental Illness: A Report From the Field. Schizophrenia Bulletin, 32(3): 443-450. Deegan, P. E. (1988). Recovery: The lived Psychosocial Rehabilitation Journal, 11: 11–19.

experience

of

rehabilitation.

De Gelderlander (2008, July 1). RIBW Nijmegen & Rivierenland scoort bij cliënt en medewerker. [No electronic version]. De Heer-Wunderink, C., Caro-Nienhuis, A.D., Sytema, S. & Wiersma, D. (2007). UTOPIA. Uit en Thuis: Onderzoek naar de Participerende Instelling van de RIBWAlliantie. Groningen: RGOc reeks nummer 16. Retrieved Jan. 8, 2008 from http://www.rgoc.nl/files/publicaties/pdf/utopia.pdf Demiris, G. (2006). The diffusion of virtual communities in health care: concepts and challenges. Patient education and counseling, 62(2): 178-188. Dickerson, F.B. (1998). Strategies that foster empowerment. Cognitive and behavioural practice, 5: 255-275. Dijk, J.A.G.M. van (2003). De digitale kloof wordt dieper. Van ongelijkheid in bezit naar ongelijkheid in vaardigheden en gebruik van ICT. Retrieved, Jun. 13, 2008, via http://www.gw.utwente.nl/vandijk/research/digital_divide/Digital_Divide_overigen /digitale_kloof_wordt_dieper_va.pdf. Dijk, J. van (2001). The network society. London: SAGE. Eysenbach, G., Powell, J., Englesakis, M., Rizo C. & Stern A. (2004). Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions. British Medical Journal, 328: 11661170. Feste, C. & Anderson, R.M. (1995). Empowerment from philosophy to practice. Patient Education and Counseling, 26: 139-144. Henwood, F., Wyatt, S., Hart, A. & Smith J. (2003). 'Ignorance is bliss sometimes': constraints on the emergence of the 'informed patient' in the changing landscapes of health information. Sociology of Health & Illness, 25(6): 589-607. Knooren, J. & van Haaster, H. (2008). Onderwijsprogramma's voor ervaringsdeskundigen. Maandblad Geestelijke Volksgezondheid; 63(6): 515-525. Laverack, G & Wallerstein, N. (2001). Measuring community empowerment: a fresh look at organizational domains. Health Promotion International, 16(2): 179185. Lemire, M., Sicotte, C. & Paré, G. (2008). Internet use and the logics of personal empowerment in health. Health Policy Lensen, J. & Betsema, J. (1998). Rehabilitatie en verpleegkunde. Maarssen: Elsevier / De Tijdstroom. Michon, H. & van Weeghel, J. (2008). Rehabilitatie-onderzoek in Nederland. Overzicht van onderzoek en synthese van bevindingen in de periode 2000 – 2007. ZonMw, Programma GeestKracht. Retrieved July 10, 2008 from http://www.ggznederland.nl/scrivo/asset.php?id=178752. NVBW (1996). General information of Community Residences in The Netherlands. Utrecht: NVBW.

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Oudshoorn, N., Rommes, E. & Stienstra M. (2004). Configuring the user as everybody: Gender and the design cultures in information and communication technologies. Science, Technology & Human Values, 29(1): 30-63. Oudshoorn, N. & Pinch T. (2003). Introduction: How Users and Non-Users Matter In Oudshoorn, N. & Pinch T. (eds.), How Users Matter. The Co-Construction of Users and Technologies (pp. 1-25). Cambridge, Mass: MIT Press. Pinch, T.J. & Bijker, W.E. (1987). The Social Construction of Facts and Artifacts: Or How the Technology of Science and the Sociology of Technology Might Benefit Each Other. In Bijker, W.E., Hughes T.P. & Pinch, T.J. (eds.), The social construction of technological systems: new directions in the sociology and history of technology (pp. 17-50). Cambridge, Mass: MIT Press. Plooy, A. (2007) Proloog. In Boevink, W., Plooy, A. & van Rooijen, S. (eds.) Herstel, empowerment en ervaringsdeskundigheid van mensen met een psychische aandoening. Passage-cahier. Amsterdam: SWP. Rogers, E.M. (1995). Diffusion of innovations. New York: The Free Press. Uden-Kraan, C.F. van, Drossaert, C.H.C., Taal, E., Shaw, B.R., Seydel, E.R. & van der Laar, M.A.F.J. (2008). Empowering processes and outcomes of participation in online support groups for patients with breast cancer, arthritis , or fibromyalgia. Qualitative Health Research, 18(3): 405-417. Vlaskamp, F.J.M., Webers, K., Peters-Volleberg, G.W.M. & van Halteren, A.R. (2001). Telemedicine en Telecare in de thuiszorg: historische ontwikkelingen en toekomstverwachtingen. Bilthoven: RIVM. Volkskrantbanen.nl (2008, June 23). Liever leuk werk dan een goed salaris. Retrieved July 4, 2008, from http://www.volkskrantbanen.nl/actueel/dossiers/beste-werkgever/720600/Lieverleuk-werk-dan-een-goed-salaris.html. Wong, Y.I. & Solomon P.L. (2002). Community integration of persons with psychiatric dissabilities in supportive independent housing: A conceptual model and methodological considerations. Mental Health Services Research, 4(2): 13-28. Wyatt, S. (2003). Non-users also matter: the construction of users and non-users of the internet. In Oudshoorn, N. & Pinch T. (eds.), How Users Matter. The CoConstruction of Users and Technologies (pp. 67-73). Cambridge, Massachusetts: MIT Press. Wyatt, S., Henwood, F., Hart, A. & Smith, J. (2005). The digital divide, health information and everyday life. New Media Society, 7: 199-218. Picture on cover: Retrieved June 8, 2008 from http://www.chatmailtherapie.nl/cms/picture/upload/Image/Fotos/helfen.gif

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.

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Appendix I: The invitation letter

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Appendix II: Interview-format

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Nummer geinterviewde: .....

Blok 1. Personalia / achtergrondinformatie 1. Het geslacht van ondervraagde (noteren!): vrouw man

2. Wat is uw leeftijd? 3. Van welke vorm(en) van ondersteuning / hulpverlening vanuit het RIBW maakt u gebruik? Beschermd Wonen Hoe veel uur begeleiding krijgt u gemiddeld per week? Hoe lang krijgt u al begeleiding van het RIBW (in jaren of maanden)?

Begeleid Zelfstandig wonen / Ambulante begeleiding Hoe veel uur begeleiding krijgt u gemiddeld per week? Hoe lang krijgt u al begeleiding van het RIBW (in jaren of maanden)?

Dag Aktiviteiten Centrum Hoe veel dagdelen per week (gemiddeld) bezoekt u het Dag Aktiviteiten Centrum? Hoe lang gaat u al naar het Dag Aktiviteiten Centrum (in jaren of maanden)?

Bureau Daadwerk Zorghotel de Vlinder Metgezel Vriendendienst “Gewoon een maatje” Heeft u een maatje gevonden via de Vriendendienst?

4. Met hoeveel personen woont u samen (denk aan groepsgenoten, familieleden, partner, kinderen)?

5. Heeft u werk / dagbesteding / vrijwilligerswerk? Zo ja, hoe veel uur per week in totaal? 5b. Bent u lid van een vereniging? 6a. Kunt u in het kort aangeven wat de reden is dat u hulp van het problematiek)?

RIBW krijgt (uw

6b. Krijgt u naast de begeleiding van de RIBW nog van andere instanties begeleiding / behandeling? ja nee

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Blok 2: huidig gebruik van technologie 7. Kunt u aangeven of u de volgende dingen bezit, gebruikt en zo ja hoe vaak u dit gebruikt? Afhankelijk van het antwoord op deze vraag stel ik u nog wat korte aanvullende vragen. Technologie televisie vaste telefoon mobiele telefoon computer internet aansluiting

bezit J/N J/N J/N J/N J/N

15

Gebruik J/N J/N J/N J/N J/N

Frequentie gebruik

--> vr. 8 --> vr. 9 -->vr. 10 Nee?--> vr. 11

Indien cliënt heeft aangegeven een mobiele telefoon te gebruiken: 8a. Stuurt u wel eens een sms-bericht? 8b. Hoe vaak doet u dit?

Indien cliënt heeft aangegeven een computer te gebruiken: 9a. Vindt u het leuk om de computer te gebruiken? ja heel erg een beetje / soms nee geen mening / antwoord 9b. Voelt u zich vaardig genoeg in het gebruik van een computer? ja heel erg een beetje / soms nee geen mening / antwoord 9c. Hoe heeft u deze vaardigheden aangeleerd? (denk aan cursus, zelf, via anderen, ...)

Indien cliënt heeft aangegeven internet te gebruiken: 10a. Vindt u het leuk om internet te gebruiken? ja heel erg een beetje / soms nee geen mening / antwoord Waarom wel/niet? 10b. Kunt u aangeven waarvoor u internet gebruikt? Antwoordsuggesties: • contact met anderen onderhouden (e-mail, chat, skype ed.) • contact met anderen zoeken (chatrooms, lotgenoten sites, relatie-sites ed.) • informatie opzoeken • ontspanning (spelletjes, films ed.)

15

Onder “bezit wordt verstaan: in eigen bezit hebbend of er vrij / ten aller tijde gebruik van kunnen makend. 74/101

10c. Voelt u zich vaardig genoeg in het gebruik van internet? ja heel erg een beetje / soms nee geen mening / antwoord 10d. Hoe heeft u deze vaardigheden aangeleerd? (denk aan cursus, zelf, via anderen, ...)

Indien een client heeft aangegeven GEEN gebruik te maken van mobiele telefoon, computer en/of internet: 11. Kunt u aangeven waarom u geen gebruik maakt hiervan? (denk aan geen interesse, geen geld ervoor, etc)

Blok 3: Contacten en zelfredzaamheid lotgenoten contacten / contacten met mede-cliënten 12. Heeft u wel eens contact met mensen die dezelfde ervaringen (behoeftes) / 16 gebeurtenissen hebben meegemaakt in hun leven als uzelf / lotgenoten? ja Hoe ervaart u dit contact? Waar ontmoet u deze “lotgenoot/ lotgenoten”? Ervaart u het contact met lotgenoten anders dan contacten met andere mensen? Kunt u hier iets meer over vertellen?

nee Kunt u aangeven waarom niet?13. Zou u (meer) in contact willen komen met mensen die dezelfde ervaringen / gebeurtenissen hebben meegemaakt in hun leven als uzelf? Waarom wel / niet? Wat verwacht u hiervan? 14. Heeft u contact met andere cliënten van de RIBW? ja Hoe (waar) heeft u deze mensen ontmoet? Waar bestaat het contact uit? nee Zou u dit wel willen?

16

Onder “lotgenoten” wordt verstaan: mensen die, naar eigen beleving, een vergelijkbare situatie hebben meegemaakt in hun leven welke een grote impact op hun heeft of heeft gehad (bijvoorbeeld verlieservaring, ernstige ziekte). Het contact tussen deze mensen is erop gericht om deze ervaring te delen, te verwerken, herstel te bevorderen, steun te vinden en regie over het leven / de situatie terug te krijgen. 75/101

Contacten in de buurt / vrienden / familieleden 17

15. Heeft u contact met uw buren / mensen in de buurt ? ja Hoe is dit contact ontstaan? Waar bestaat dit contact uit? (denk aan groeten, elkaar helpen met klusjes, samen koffie drinken)

nee Kunt u vertellen waarom niet? Zou u contact willen met mensen in uw buurt? Vind u contact met mensen uit uw buurt belangrijk? ja heel erg een beetje / soms nee geen mening / antwoord Kunt u uw antwoord kort toelichten? 15b. Heeft u contact met familieleden / vrienden? Zo ja, bent u in het algemeen tevreden over dit contact? ja heel erg een beetje / soms nee geen mening / antwoord

Contacten met de RIBW 16. Kunt u aangeven of u de volgende dingen samen met uw begeleider doet? Hierbij kunt u kiezen uit de volgende antwoordmogelijkheden: Altijd, Vaak, Soms, Nooit, Geen antwoord / niet van toepassing A/V/S/N/G

a) Samen doen van huishoudelijke werkzaamheden

A/V/S/N/G

b) Samen doen van boodschappen

A/V/S/N/G

c)

A/V/S/N/G

d) Samen doen van financiën

Samen bezoeken van anderen familielid, aktiviteiten centrum)

(bijvoorbeeld

behandelaar,

17. Ligt het accent in de begeleiding op praten of samen dingen doen? 18. Hoe is de verhouding hiertussen? (bijvoorbeeld 50/50, 20/80 etc.)

17

Onder “buurt” wordt verstaan: de straat, het blok, het dorp, met andere woorden de daadwerkelijke woonomgeving van de client. 76/101

Ongeplande zorg De begeleiding vanuit de RIBW vindt plaats op vooraf afgesproken tijden. Ik wil u wat vragen stellen over eventueel contact dat u met de begeleiding heeft buiten deze afspraken om. 19. Belt u wel eens met uw begeleiders / het team? Ja Hoe vaak doet u dit ongeveer? Bent u tevreden over het telefonische contact?

Nee Kunt u aangeven waarom niet? 20. Heeft u wel eens gebruik gemaakt van de 24-uurs bereikbaarheidsdienst / slaapdienst van de RIBW? Ja Kunt u aangeven wanneer de laatste keer was dat u de bereikbaarheidsdienst belde? Wat zijn uw ervaringen met de bereikbaarheidsdienst?

Nee Kunt u aangeven waarom niet? 21. E-mailt u wel eens met begeleiders / het team van de RIBW? Ja Hoe vaak doet u dit? Hoe ervaart u dit?

Nee Kunt u aangeven waarom niet? Heeft u interesse om dit in de toekomst wel te gaan doen?

Kennis gezondheid en ziekte 22. Wat vind u over het algemeen van uw gezondheid? uitstekend zeer goed goed redelijk slecht 23. Waar haalt u informatie vandaan haalt als u meer weten wilt over uw gezondheidssituatie of klachten? de (huis)arts / behandelaar begeleiding van het RIBW mede-cliënten vrienden en / of familieleden boeken, tijdschriften en/of tv (algemene) informatie op het internet forums / lotgenoten contact op internet cursus patienten vereniging anders namelijk .... dit doe ik niet

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24. Kunt u een voorbeeld geven waarin u goede ervaring had met het zoeken naar en vinden van informatie over uw gezondheid / klachten? 25. Kunt u een voorbeeld geven waarin u slechte ervaring had met het zoeken naar en vinden van informatie over uw gezondheid / klachten? 26. Gebruikt u internet wel eens om informatie te zoeken over uw gezondheidssituatie? Ja Hoe ervaart u dit?

Nee Kunt u aangeven waarom niet? Heeft u interesse om dit in de toekomst wel te gaan doen?

Blok 4: mening t.a.v. van technologie ondersteuning van de autonomie / herstel

als

Stelt u zich voor dat de RIBW een speciaal hulpmiddel wil maken voor hun cliënten, wat u de mogelijkheid biedt om vanuit huis contact te leggen met anderen en informatie te verkrijgen. 27. Zou u hier, denkt u, gebruik maken? 28. Wat vind u dan belangrijk dat hier op komt te staan? 29. Denkt u dat dit bijdraagt aan uw zelfredzaamheid? Waarom wel / niet? 30. Wat is de reden dat u besloten heeft deel te nemen aan dit interview?

Bedanken voor tijd uitleggen wat ik met hun gegevens doe: anoniem bewaren & na afronden onderzoek weggooien vragen of ze op de hoogte willen worden gehouden van resultaten?

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Appendix III: Mailed questionnaire

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Hartelijk bedankt dat u de tijd neemt deze vragenlijst in te vullen.

De vragenlijst bestaat uit vragen waarbij u een antwoord aan kan kruisen (die herkent u aan de aankruis vakjes ͘) en open vragen waar u zelf uw kunt opschrijven (dit herkent u aan de lijntjes

antwoord

).

Wilt u proberen om zo duidelijk mogelijk te schrijven?

Uw antwoorden op vragen in deze lijst worden anoniem bewaard en verwerkt. De resultaten zullen worden gebruikt voor mijn afstudeeronderzoek. Na afronden van het onderzoek worden de vragenlijsten vernietigd. Ik zal u, middels een nieuwsbrief informeren over de resultaten en conclusies wanneer deze bekend zijn.

Blok 1. Personalia 1.

Wat is uw geslacht (aankruisen a.u.b.) vrouw man

2.

Wat is uw leeftijd?

jaar

3. Van welke vorm(en) van ondersteuning / hulpverlening vanuit het RIBW maakt u gebruik (meerdere antwoorden mogelijk)? Beschermd Wonen Begeleid Zelfstandig wonen / Ambulante begeleiding Dag Activiteiten Centrum (Phoenix, De Arc, De Dolfijn) 4.

Hoe veel uur begeleiding krijgt u gemiddeld per week?

uur

5. Hoe lang krijgt u al begeleiding van het RIBW (aangeven in aantal jaren of aantal maanden)?

6.

Hoe veel dagdelen per week (gemiddeld) bezoekt u het Dag Aktiviteiten Centrum?

7. Hoe lang gaat u al naar het Dag Aktiviteiten Centrum (aangeven in aantal jaren of aantal maanden)?

8.

Maakt u van de volgende mogelijkheden gebruik (meerdere antwoorden 81/101

mogelijk) Bureau Daadwerk Zorghotel de Vlinder Relatie bemiddelingsbureau Metgezel Vriendendienst “Gewoon een maatje” Zo ja, heeft u een maatje gevonden via de Vriendendienst? Ja nee 9. Met hoeveel personen woont u samen (denk aan groepsgenoten, familieleden, partner, kinderen)? ik woon alleen ik woon met anderen samen: aantal (reken jezelf niet mee!) 10. Heeft u een dagbesteding? ik heb een betaalde baan ik doe vrijwilligerswerk ik ga naar een aktiviteitencentrum ik heb geen dagbesteding

anders namelijk

11. Hoe veel uur per week is dit in totaal?

uur

12. Bent u lid van een vereniging (bijvoorbeeld een sportvereniging, hobby vereniging)? Zo ja, welke en hoe vaak bent u hierbij actief?

13. Kunt u in het kort aangeven wat de reden is dat u hulp van het RIBW krijgt (uw problematiek)?

14. Krijgt u naast de begeleiding van de RIBW nog van andere instanties begeleiding of behandeling? Ja nee

Blok 2: gebruik van apparatuur 82/101

15. Kunt u in het onderstaande schema aankruisen of u de volgende apparaten bezit, gebruikt en zo ja hoe vaak u dit gebruikt?

Bezit

Gebruik

Zo ja, hoe vaak gebruikt u dit?

Televisie

ja

nee

ja

nee

Vaste telefoon

ja

nee

ja

nee

Mobiele telefoon

ja

nee

ja

nee

Computer

ja

nee

ja

nee

Internet

ja

nee

ja

nee

aansluiting

16. Deze vraag hoeft u alleen in te vullen als u een mobiele telefoon gebruikt Stuurt u wel eens een

Zo

sms-bericht?

ja

nee

ja,

hoe

vaak

doet u dit?

17. Deze vragen hoeft u alleen in te vullen als u een computer gebruikt Vindt u het leuk om de computer te gebruiken? Voelt

u

zich

vaardig

Ja heel erg

Een beetje soms

nee

geen mening/ antwoord

Ja heel erg

Een beetje soms

nee


genoeg in het gebruik van een computer?

18. Deze vragen hoeft u alleen in te vullen als u internet gebruikt Vindt

u

het

om

Ja heel erg

Een beetje soms

nee


vaardig

Ja heel erg

Een beetje soms

nee


leuk

internet te gebruiken? Voelt

u

zich

genoeg in het gebruik van internet?

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19. Kunt u aangeven waarvoor u internet gebruikt (meerdere antwoorden mogelijk)? contact onderhouden met bekenden / vrienden (bijvoorbeeld via e-mail, chat, skype) nieuwe mensen ontmoeten (chat, lotgenoten sites, relatie-sites ed.) informatie opzoeken ontspanning / hobby (muziek downloaden, spelletjes, films kijken ed.)

anders namelijk

20. Deze vragen hoeft u alleen in te vullen als u GEEN gebruik maakt van computers en/of internet. Kunt u aangeven waarom u hier geen gebruik van maakt?

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Blok 3: Contacten lotgenoten contacten / contacten met mede-clienten 21. Heeft u wel eens contact met mensen die dezelfde ervaringen (behoeftes)/ gebeurtenissen hebben meegemaakt in hun leven als uzelf, zogenaamde lotgenoten?18

Ja Nee

Zo ja, waar ontmoet u deze “lotgenoot/ lotgenoten”?

Zo ja, ervaart u het contact met lotgenoten anders dan contacten met andere mensen? Kunt u hier iets meer over vertellen?

Zo nee, kunt u aangeven waarom niet?

22. Zou u (meer) in contact willen komen met mensen die dezelfde ervaringen / gebeurtenissen hebben meegemaakt in hun leven als uzelf?

Ja Nee

23. Heeft u contact met andere cliënten van de RIBW?

Ja Nee

Kunt u uw antwoord kort toelichten?

18

Onder “lotgenoten” wordt verstaan: mensen die, naar eigen beleving, een vergelijkbare situatie hebben meegemaakt in hun leven welke een grote impact op hun heeft of heeft gehad (bijvoorbeeld verlieservaring, ernstige ziekte). Het contact tussen deze mensen is erop gericht om deze ervaring te delen, te verwerken, herstel te bevorderen, steun te vinden en regie over het leven / de situatie terug te krijgen. 85/101

24. Heeft u contact met uw buren / mensen in de buurt?

Ja Nee

Zo ja, waar bestaat dit contact uit? ( meerdere antwoorden mogelijk) groeten elkaar helpen met klusjes samen koffie drinken

anders namelijk

Vindt u contact met mensen uit uw buurt belangrijk?

Ja heel erg

Een beetje soms

nee


nee



25. Heeft u contact met familieleden / vrienden?

Ja Nee

Zo ja, bent u in het algemeen tevreden over dit contact?

Ja heel erg

Een beetje soms


Contacten met de RIBW 26. Kunt u aangeven of u de volgende dingen samen met uw begeleider doet? Samen doen huishoudelijk werk

van

Altijd

Vaak

Soms

Nooit

Samen doen boodschappen

van

Altijd

Vaak

Soms

Nooit

Samen bezoeken van anderen (bijvoorbeeld behandelaar, familielid, activiteitencentrum)

Altijd

Vaak

Soms

Nooit

Samen doen van financiën

Altijd

Vaak

Soms

Nooit

86/101

27. Ligt het accent in de begeleiding op praten of samen dingen doen?

Praten Samen dingen doen

28. Hoe is de verhouding hiertussen?

100% Praten 80% praten, 20% dingen doen 50% praten, 50% dingen doen 20% praten, 80% dingen doen 100% dingen doen

De begeleiding vanuit de RIBW vindt plaats op vooraf afgesproken tijden. Ik wil u wat vragen stellen over eventueel contact dat u met de begeleiding heeft buiten deze afspraken om.

29. Belt u wel eens met uw begeleiders / het team?

Ja Nee Zo ja, hoe vaak doet u dit ongeveer?

Bent u tevreden over het

telefonische contact?

Ja heel erg

Een beetje soms

nee



30. Heeft u wel eens gebruik gemaakt van de 24-uurs bereikbaarheidsdienst / slaapdienst van de RIBW?

Ja Nee

Zo ja, hoe vaak doet u dit ongeveer? Bent u tevreden over de

bereikbaarheidsdienst?

Ja heel erg

Een beetje soms

nee


geen mening/


31. E-mailt u wel eens met begeleiders van de RIBW?

Ja Nee

Zo ja, hoe vaak doet u dit ongeveer?

Bent u tevreden over het e-mail contact?

Ja heel 87/101

Een

beetje

nee

erg

soms

antwoord

Heeft u interesse om in de toekomst met u begeleider te gaan e-mailen? Ja Nee

Kennis gezondheid en ziekte 32. Wat vind u over het algemeen van uw gezondheid?

Uitstekend

Zeer goed

Goed

Redelijk

33. Waar haalt u informatie vandaan haalt als u meer weten wilt over uw gezondheidssituatie of uw klachten (meerdere antwoorden mogelijk)?

de (huis)arts / behandelaar begeleiding van het RIBW mede-cliënten vrienden en / of familieleden boeken, tijdschriften en/of tv (algemene) informatie op het internet forums / lotgenoten contact op internet cursus patienten vereniging anders namelijk

5. dit doe ik niet Kunt u uw antwoord kort toelichten?

88/101

Slecht

Blok 4: Ontwikkelingen binnen de RIBW De RIBW is zich aan het oriënteren op mogelijkheden om u als cliënt mogelijkheden te bieden om op andere manieren in contact te komen met mede cliënten, mensen in uw buurt, lotgenoten of begeleiding. Hoe dit er exact uit komt te zien is nog niet duidelijk. Waarschijnlijk wordt hierbij van internet gebruik gemaakt. 34. Denkt u dat u hier gebruik van gaat maken? Waarom wel / niet?

35. Wat vind u dan belangrijk dat hier op komt te staan (meerdere antwoorden mogelijk)?

mogelijkheden om andere clienten van de RIBW te leren kennen mogelijkheden om meer mensen uit mijn buurt te leren kennen mogelijkheden voor mailen met begeleider informatie over de RIBW informatie over de buurt waarin ik woon (wat er te doen is) algemene informatie over de psychiatrie spelletjes

anders namelijk

36. Denkt u dat dit bijdraagt aan uw zelfredzaamheid? Waarom wel / niet?

37. Wat is de reden dat u besloten heeft deel te nemen aan mijn onderzoek?

Hartelijk dank voor uw deelname! Stuurt u de vragenlijst in de retour envelop naar mij terug?

89/101

90/101

Appendix IV: Questions as formulated for the mentors

91/101

VRAGEN: 1. Van hoeveel cliënten ben je persoonlijk begeleider? (N.B. bij duobegeleidingen graag alleen die cliënten meetellen waar je eerste begeleider van bent) De rest van de vragen graag beantwoorden over de bij 1 genoemde cliënten waarvan jij persoonlijk begeleider bent! 2. Hoeveel van deze cliënten maken, naar jou weten, nooit gebruik van computers en /of internet? 3. Hoeveel van deze cliënten maakt, naar jou weten af en toe gebruik van computers en/of internet? 4. Hoeveel van deze cliënten maakt, naar jou weten, dagelijks gebruik van computers en/of internet? 5. Met hoeveel van deze cliënten sms je wel eens? 6. Hoeveel van deze cliënten stuur je wel eens een e-mail?

92/101

93/101

Appendix V: Results in tables

94/101

95/101

Table 1: method by which clients responded to invitation letter, in n and %

n

%

Response by telephone

44

60.3

Response by e-mail

17

23.2

Response via the mentor

7

9.6

Response by SMS

3

4.1

Response by post

2

2.7

Response total

73

100

n

%

female male

28 35

44.4 55.6

Age: range Age: mean

30-68 48.11

Form of care: - community residence - supported living - no more care

15 47 1

23.8 74.6 1.6

Living situation: - alone - 1 housemate - 2-4 housemates - > 4 housemates

42 9 6 6

66.7 14.2 9.5 9.5

Duration of stay in RIBW in months: range Duration of stay in RIBW in months: mean Duration of stay in RIBW in months: mode

1 – 240 (20 years) 56 (4.7 years) 84 (7 years)

Hours of care p/week: range Hours of care p/week: mean Hours of care p/week: mode

0.3 – 168 hours 3.5 hours 1 hour

Table 2: Demographic characteristics, in n and %

Table 3: sources for seeking health information (more answers possible), in n and %

n

%

GP / medical specialist

49

77.8

general health information on the internet

30

47.6

mentor

23

36.5

books, magazines and/or tv

20

31.7

friends or family

14

22.2

other clients / peers

9

14.3

course

6

9.5

patient association

5

7.9

information folders at GP, pharmacy, library or 4 municipality

6.3

Table 3 continues on the next page. 96/101

n

%

forum / online support group

3

4.8

information leaflet with drugs

3

4.8

pharmacist

2

3.2

Other: - scientific articles - study biology - telephone line giving information on medication - own medical record - alternative treatments - regular support group - client council

1 1 1 1 1 1 1

1.6 1.6 1.6 1.6 1.6 1.6 1.6

Do not seek information

1

1.6

n

%

Day activity (more answers possible): paid job volunteer work other day activity no day activity Mean time p/week spend at day activities, in hours

7 25 10 21 8.5

11.1 39.7 15.9 33.3

Day Activity Centre (DAC) Mean time p/week at DAC, in hours

32 9

50.8

Member of association / club, active Member of association / club, passive No member of an association / club

26 7 30

41.3 11.1 47.6

Table 4: participation in society, in n and %

Table 5: places of origin in peer-to-peer contact, in n and % n

%

Day Activity Centre of organization

23

36.5

GGZ field: activity program / course / admission in mental health hospital

14

22.2

Support group in mental health (Anoiksis, Pandora, Ypsilon) 4

6.3

Work / social life

4

6.3

Housemates

3

4.8

Contact Association for people with mental illness (Vriendstap, Metgezel)

3

4.8

In psychiatry: not specified

2

3.2

Association: not specified

2

3.2

Via mentor

1

1.6

Support Group: non-psychiatric illness

1

1.6

97/101

Table 6: positive and negative aspects of contacts with peers, in n

Positive aspects

n

Understanding (begrip)

12

Pleasant (prettig)

10

Share what is on your mind (delen wat je bezighoud) 5 Less to explain (minder uit hoeven leggen)

5

Same experiences (ervaring)

5

Talking on the same level (op hetzelfde niveau praten)

4

Easy (makkelijk)

4

recognition (herkenning)

3

Resemblance (vergelijking)

2

Be yourself (jezelf zijn)

2

Connection (aansluiting)

1

Being familiar (vertrouwd zijn)

1

informal (vrijblijvend)

1

support (steun)

1

Relaxed (ontspannen)

1

Handy (handig)

1

Negative aspects

n

Confrontation with own problems

2

Not able to cope with other people's miseries

2

Hear too many stories of others

1

Annoying when people talk too much about something

1

Always running around in the same circle

1

Too much talking about pills

1

Sense of shame to talk about my own problems

1

Table 7: experiences of peer-to-peer contact as being different vs. gender, in n and %

female

male

total

Different

13

10

23 (53.5%)

Not different

0

10

10 (23.2%)

Sometimes different

3

3

6

(13.9%)

Do not know

1

0

1

(2.3%)

Missing

3

(6.9%)

Total

43

(100%)

98/101

Table 8: reasons for not having contact with peers, in n

n I do not get to know them

7

I do not know where to find them

2

I find it too confronting

2

I do not long for it

2

There is no one with the same problems as I have

1

It is not 'me'

1

I do not dare to present myself

1

I think that it is too much complaining / nagging

1

I am very individualistic

1

I am taking other people's problems home with me

1

Table 9: assistance by mentors in certain tasks, in n and %

Always

Often

Sometimes

Never

No answer

Assist in cleaning the house

7 (11.1%)

5 (7.9%)

16 (25.4%)

33 (53.4%)

1 (1.6%)

Assist by doing groceries

4 (6.3%)

1 (1.6%)

6 (9.5%)

50 (79.4%)

1 (1.6%)

Assist in visiting others 0

2 (3.2%)

35 (55.5%)

24 (38.1%)

1 (1.6%)

Assist with financial things

5 (7.9%)

9 (14.3%)

8 (12.7%)

39 (61.9%)

1 (1.6%)

Total

16 (6.5%)

17 (6.9%)

65 (26.2%)

146 (58.9%)

4 (1.6%)

Table 10: contact by telephone and e-mail between respondent and mentor, in n and %

Yes

No

Missing

Call mentor

45 (71.4%)

16 (24.4%)

1 (1.6%)

Call crisis telephone

20 (31.7%)

41 (65.1%)

1 (1.6%)

E-mail

16 (24.4%)

45 (71.4%)

1 (1.6%)

Considers to use e-mail in the future

13 (20.6%)

28 (44.4%)

21 (33.3%)

Table 11: importance of contact with neighbours, in n and %

n (%) Very important

42 (67.7%)

A little important

14 (22.6%)

Not important

5 (8.1%)

Missing

1 (1.6%)

99/101

Table 12: frequency of using computer and internet in n and %

Computer

Internet

Daily

25 (39.7%)

25 (39.7%)

Several times per week

8 (12.7%)

8 (12.7%)

Several times per month

9 (14.3%)

9 (14.3%)

Seldom

3 (4.8%)

0

Total

45

42

Table 13: non-users of computers and internet, in n and %

Computer

Internet

No possession

18 (28.6%)

28 (44.4%)

No utility

18 (28.6%)

20 (31.7%)

Table 14: frequency in computer and internet use of total group of clients, in n and %

Never use computer / internet

132 (31.4%)

Use computer / internet sometimes, but not daily

126 (30%)

Use computer / internet daily

164 (39%)

Total

420 (100%)

Table 15: purposes of using internet, in n

n Searching for information

33

E-mail

24

Getting to know new people: Not specified Sites for meeting possible partners Chat Message boards

8 3 2 2

Downloading of music / films

7

Playing (online) games

6

Online banking

2

Table 16: reasons for not using internet, in n

n No interest

7

Do not understand it

6

Partner looks things up for me

2

Reluctance

2

Fear

2

Costs

2

100/101

Table 17: reasons for believing that the technology will increase empowerment, in n

n Reduce feelings of loneliness

4

Share experiences

4

Feel better (e.g. more secure)

4

Easier to communicate via the computer

3

Easier to formulate questions to the mentor

3

Increase chances of meeting people you really like

1

Get better informed

1

Table 18: reasons for believing that the technology will not increase empowerment, in n

n Not wanting to talk about own problems

4

It is only for fun

2

It is not good to trust other people this much

1

People with psychiatric problems have enough to deal with 1 themselves It is too public

1

Preferring other sources

1

Favouring personal contact

1

101/101

Home-ICT as a tool to stimulate empowerment for clients with long-term psychiatric problems

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