Title: Eén verhaal, drie visies. Patiënten, familieleden en hulpverleners over participatie in de geestelijke gezondheidszorg.
Other Titles: One story, three visions. Service users, family members and service providers about involvement in mental health care.
Authors: Tambuyzer, Else; M0217652
Issue Date: 27-Jun-2012
Abstract: Mental health care (MHC) is undergoing a strong evolution. The roles of service users, their environments and their organisations are accruing, resulting in more involvement possibilities for service users and family carers. Involvement is a complex, value-laden concept based on the abilities of the person rather than on his limitations. We define involvement in MHC as "involvement in decision-making and active participation in activities such as planning, evaluation, care provision, research, training, recruitment of personnel etc. starting from the expertise by experience of the person, in partnership with professionals." Involvement is, however, not an end in itself. Rather, it can promote positive outcomes for service users and family carers, such as an improved quality of life and health status. Although involvement is a known concept, the implementation in Belgian MHC has been limited so far. As a result, there is little research on the involvement possibilities of service users and family carers in Belgian MHC. One of the objectives of this doctoral research project was to fill this knowledge gap by mapping the involvement possibilities. This was done through an exploration of the vision of three stakeholder groups: service users (SUs), family carers (FCs) and mental health professionals (MHPs). There were 6 central research questions: (1) ‘To what extent do SUs and FCs wish to be involved?’; (2) ‘To what extent do MHPs consider SU and FC involvement to be desirable?’; (3) ‘To what extent is involvement realised according to the three stakeholder groups?’; (4) ‘To what extent does each stakeholder group experience differences between the degree of realisation and the desirability of involvement?’; (5) ‘To what extent do the perceptions of the three stakeholder groups differ?’ and (6) ‘What is the nature of the relationships between SU involvement, SU satisfaction and empowerment?’. The study took place within multidisciplinary care networks for service users with 'chronic and complex psychiatric problems'. A new questionnaire was developed to assess the perceptions of the three groups with regard to the desirability and degree of realisation of involvement. Within 57 healthcare networks, we collected 400 questionnaires among 216 MHPs, 111 service users and 73 family carers and we obtained respectively 57, 32 and 20 interviews. The results show that the three stakeholder groups generally consider involvement a desirable practice. SUs and FCs find it especially important to receive opportunities to be involved and SUs want to have a say in decisions. MHPs believe it is essential to take both the strengths and weaknesses of SUs into account. Both the FCs and the MHPs feel it is important to treat family carers as equal conversation partners. Training opportunities to improve participation skills are the least important to all stakeholder groups. MHPs also feel it is little desirable to distribute the SU’s care plan among family carers. MHPs find it relatively unimportant to communicate to service users that they have the right to look into their mental health record. All groups indicate that many aspects of participation are realised at an acceptable level. SUs and FCs can contribute at care consultations, are given involvement opportunities and are usually treated as equal conversation partners. However, the involvement preferences of SUs and FCs are often not fully realised and MHPs also indicate points of improvement. The three stakeholder groups report that SUs and FCs have scarce training opportunities to increase their involvement skills and almost never dispose of the care plan of the service user. MHPs rarely have tools at their disposal to support service users’ and family carers’ involvement processes. According to both MHPs and service users, the service user’s right to look into his mental health record is far from realised. There are also differences between the perceptions of the stakeholder groups about the desirability and realisation of involvement. The opinions of service users and family carers do not significantly differ. There are, however, significant differences between the perceptions of service users and family carers and those of the MHPs. For several involvement aspects, service users and family carers report a higher degree of realisation and desirability than do the MHPs. According to the MHPs, service user involvement is realised significantly more than family carer involvement and they also consider involvement more desirable for service users than for family carers. In a final phase, we assessed possible associations between service user involvement, service user satisfaction and empowerment. The results indicate a positive relationship between the three concepts and SU involvement is a significant predictor of both service user satisfaction and empowerment. The relationship between involvement and empowerment is not affected by the degree of service user satisfaction. This doctoral research contributes significantly to the knowledge base on service user and family carer involvement in MHC in several ways. The definition, the process model and the measurement instrument add to the understanding of the involvement concept, as do the positive associations between service user involvement, satisfaction and empowerment. Additionally, this is the first time that the involvement possibilities of service users and family carers in Belgian mental health care were mapped in a systematic way. Moreover, it was possible to detect differences within groups, as well as between groups. Our results lead to recommendations on different levels. SU and FC organisations need to support SUs and FCs in their new roles as critical health care consumers by continuously drawing the attention to the involvement concept, by constructive policy representation and through the deployment and education of experts by experience. We furthermore recommend that care services make their involvement vision explicit and that they develop an involvement policy plan. MHC policy can play a crucial role in the structural implementation of involvement in MHC by disseminating a clear, strengths-based vision on involvement. This vision can be structurally embedded in MHC by adapting the education curricula of MHPs accordingly, by establishing quality control and effect measurements with a focus on involvement and by establishing a legal framework for service user and family carer involvement. Future research should focus on the involvement opportunities of family carers and of the most vulnerable service user groups. In addition, an extension of the outcome measures of involvement and a further exploration of the impact of characteristics of the stakeholder groups are recommended. An intensive collaboration with service user researchers is suggested.
Publication status: published
KU Leuven publication type: TH
Appears in Collections:LUCAS - Centre for Care Research and Consultancy
Academic Center for General Practice
Research Group Psychiatry

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