'What if I'm no longer around?': An evaluative description of a structured group conversation about the care for persons with profound intellectual and multiple disabilities when they outlive their parents.

BACKGROUND: Persons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. Therefore, we designed a structured group conversation to support family members and care professionals in exploring together how parental roles may be taken over by others when necessary. METHOD: We conducted a mixed methods study, with a focus on the qualitative data, to describe and evaluate three group conversations. RESULTS: Family members (n = 22) of persons with PIMD who live in residential care facilities and care professionals (n = 9) evaluated the structured group conversation as valuable. While both parties reported that the group conversation (re)sparked their attention for the topic, mostly family members planned to take concrete action as a result of it. CONCLUSIONS: The group conversation encourages parents to communicate explicitly about the future care for their child with PIMD, and offers both family members and care professionals support in exploring this future care together.

Tacit knowledge in dyads of persons with profound intellectual and multiple disabilities and their caregivers: An interpretative literature study.

BACKGROUND: Caring for persons with profound intellectual and multiple disabilities (PIMD) demands specific expertise. Tacit knowledge seems to play an important role, but little is known about its nature, including what is necessary for its development and transfer. AIM: To gain understanding of the nature and development of tacit knowledge between persons with PIMD and their caregivers. METHOD: We conducted an interpretative synthesis of literature on tacit knowledge in caregiving dyads with persons with PIMD, persons with dementia or infants. Twelve studies were included. RESULTS: Tacit knowledge is about caregivers and care-recipients becoming sensitive and responsive to each other's cues and together crafting care routines. Learning takes place in a constant process of action and response that transforms those involved. CONCLUSION: Building tacit knowledge together is necessary for persons with PIMD to learn to recognise and express their needs. Suggestions are made for ways to facilitate its development and transfer.

Care and support for persons with profound intellectual and multiple disabilities without parents: A qualitative exploration.

BACKGROUND: Persons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. While this is expected to negatively affect them, little is known about the actual situation of persons with PIMD without parents. AIM: To explore how parental roles are taken over by others, when persons with PIMD have outlived their parents, and how this affects the care and support for- and quality of life (QoL) of persons with PIMD. METHODS: We interviewed seven siblings, and six professionals (N = 13) involved in the care and support for persons with PIMD without parents, and analysed the data thematically. RESULTS: Siblings described a lack in family communication about the transition, yet felt responsible to fill the gap their parents left behind. Professional legal guardians felt professional responsibility towards their clients, yet described they had a limited assignment to fulfil. Professional caregivers underscored the importance of family in the care and support for persons with PIMD, while describing sometimes taking on extra responsibility for clients without parents. CONCLUSIONS: Support aimed at facilitating a timely transfer of responsibilities, and at clarifying the content of these responsibilities, could better prepare both siblings and professionals to mitigate the impact of the loss of parents for persons with PIMD.

Participatory research in health promotion: a critical review and illustration of rationales.

In health promotion research, enthusiasm for patient and public involvement (PPI) is growing. However, a lack of conceptual clarity leads to ambiguities in participatory processes and purposes, and hampers efforts to achieve and evaluate PPI in research. This study provides an overview of its underlying reasons-or rationales-so as to better understand, guide and interpret PPI in research practice. We conducted a critical review to identify typologies of rationales for PPI. We re-categorized the different types of rationales from these typologies based on their content. We illustrated the resulting categories of rationales with examples from a case study on PPI in research on Lyme disease. Five categories of rationales for PPI were identified. The democratic rationale reflects the normative right of citizens to have a voice in research. The consumerist rationale refers to the economic right of stakeholders with interests to have a say. Rooted in social justice, the transformative rationale seeks to empower marginalized groups. The substantive rationale starts from epistemic considerations and aims to improve the quality of knowledge that research generates. The instrumental rationale is of pragmatic origin and refers to improved efficiency and effectiveness of the research. Our overview of categories of rationales can be used as a frame of reference for PPI in health promotion research. Exploring, stating explicitly and reflecting on the underlying reasons for PPI may help to define realistic purposes, select matching approaches and design appropriate evaluation studies. This might also contribute to the conceptualization of PPI.

Enthusiasm for patient and public involvement in health promotion research is growing. However, it often remains unclear why this involvement is being organized. This lack of clarity makes it difficult to implement such participatory research and to evaluate its added value. We searched for reasons that were given for starting patient and public involvement in research. We found five different reasons. The first is the right of all citizens to have a say in research that affects them. The second is the right of individuals to demand the best research. The third is the desire to involve and empower marginalized groups. The fourth aims to improve the quality of the knowledge generated by the research. The fifth is to achieve more effective and efficient research. Together, these reasons may help researchers get more clarity about why patients or the public should be involved in their studies. This may in turn help to define realistic purposes, design a good participatory process, and conduct appropriate evaluations. All in all, using these five reasons as a frame of reference might lead to a better understanding of what good participatory research in health promotion should look like.

Gaining 'clarity through specificity' in invited patient participation: A case study of a multifaceted participatory practice in the Netherlands.

Patient participation is a highly valued principle. Yet, it remains difficult both to achieve it and to assess its added value, as participation is often started without much clarification of what it means or aims to do. In theory, patients may be invited to participate for reasons of democracy, empowerment, knowledge integration and instrumentalism. By making these rationales explicit in a participatory practice in the Netherlands, we aimed to contribute to the long-needed 'clarity through specificity' in participation. Apart from the rationales, our analytic framework included dimensions of the participatory process, reflected by questions like 'Who participates?', 'In what?' and 'With how much control?' We used this framework to conduct and analyse semi-structured interviews (n = 51) with patient participants (20), professionals (14) and researchers (17). We found that the participatory practice included all rationales and that the actual manifestation of an intended rationale very much depended on the design of the dimensions of the participatory process. We conclude that invited participation may gain in clarity by making explicit the rationales for participation. If put at the centre of attention, and made the leading factor in the design of the dimensions of the participatory process, explicit rationales may support the realisation of participation in practice and prevent it from resulting in mere window-dressing.

Parents' views on medical decisions related to life and death for their ageing child with profound intellectual and multiple disabilities: A qualitative study.

BACKGROUND: The increased life expectancy of persons with profound intellectual and multiple disabilities (PIMD) raises questions regarding the medical decisions related to life and death, made on their behalf during their later lives. However, little is known about how parents make such decisions for their ageing child. AIM: Explore parents' views on medical decisions related to life and death for their ageing child with PIMD. METHODS: We interviewed 27 parents of persons with PIMD (≥ 15 years) and analyzed the data thematically. RESULTS: Parents who were convinced that their ageing child's quality of life (QoL) was good, stated that their child "deserved the same treatment as any other person". Others rejected life-prolonging treatments for their child because they believed such treatment would diminish their child's QoL. Some of the parents who thought their child's QoL was poor, mentioned that withholding treatment is only an option in a crisis situation and contemplated other options to shorten their child's life. CONCLUSIONS: Parents feel equipped to take on a central role in medical decisions related to life and death for their ageing child with PIMD, and desire understanding from medical professionals for their views on their child's interests, which sometimes includes physician-assisted death.

Parents' knowledge of their child with profound intellectual and multiple disabilities: An interpretative synthesis.

BACKGROUND: Parents' knowledge of their child with profound intellectual and multiple disabilities (PIMD) is seen as crucial in the support and care for their child. The aim of this study was to explore the nature and transferability of this knowledge. METHOD: We conducted an interpretative synthesis, searched PubMed, CINAHL, Philosopher's Index and PsycINFO and included fourteen studies. RESULTS: Parents' knowledge was based on their long-lasting and special bond with their child and described as an intuition, a gut feeling, a sixth sense and a sense of knowing. Parents applied their knowledge as experts in interpreting their child's intended communication, well-being and pain, and as advocates opposing the more objectivist approach of medical professionals. Showing by example and passing on narratives were seen as important ways of transferring this knowledge. CONCLUSIONS: Suggestions are made on how to apply and retain parents' knowledge to improve care and support for people with PIMD.

Eating together as a social network intervention for people with mild intellectual disabilities: a theory-based evaluation.

PURPOSE: People with mild intellectual disabilities (MID) generally live independently among the wider community. This can result in social exclusion and feelings of loneliness. Therefore, social work organizations aim to socially include people with MID through organizing activities in neighbourhoods that should lead to enlarged networks and increased societal participation. The "Communal Table" is such a, group-orientated, intervention that organizes monthly dinners in Amsterdam, the Netherlands. Because little is known about the effectiveness of interventions aiming to bring about social inclusion for people with MID we explored which types of participants were reached and whether and how the intervention brought about the intended outcomes. METHODS: We performed a theory-based evaluation, using participatory observations and qualitative interviews (n = 19). The Communal Table attracted a diverse and loyal group of participants. RESULTS: We distinguished four types of participants-lonely participants, activist participants, satisfied participants and calculating participants-whose pre-existing networks played a significant role in their individual needs for support and the outcomes of the intervention. Outcomes reported included experiences of conviviality and warmth, temporary relief of underlying problems and an overall positive opinion about the intervention, but network enlargement or increased societal participation were not reported. CONCLUSIONS: Our findings suggest that social network interventions for people with MID should be tailored to participants' pre-existing networks and related individual needs to be successful.