'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.

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.

Witnessing Quality of Life of Persons with Profound Intellectual and Multiple Disabilities. A practical-Philosophical Approach.

Persons with profound intellectual and multiple disabilities (PIMD) cannot speak about their Quality of Life (QoL), which makes it necessary to involve others. In current approaches, these 'others' are seen as assessors trying to describe QoL as objectively as possible, which involves a reduction of their experiences, through which they develop knowledge on the QoL of the person with PIMD. The objective of this paper is to give caregivers' knowledge on the QoL of a person with PIMD a theoretical basis that values these experiences. We will argue that caregivers should be seen as witnesses, not assessors, and their statements on QoL as testimonies, not assessments. Audiences judge the trustworthiness of these witnesses intersubjectively, which implies a relationship characterized by trust and suspicion. Trust supports the witness to tell in her own words about the QoL of the person with PIMD; it demands receptivity, indicating that both the witness and the audience are willing to reconsider their perspective on QoL. Suspicion is necessary too, which helps the witness to critically approach her own interpretations and supports her to create more trustworthy testimonies. We conclude that the concept of witnessing helps to acknowledge caregivers' experiential knowledge of QoL of a person with PIMD, which may also apply to other persons who cannot speak about their own QoL. We hope that our study will empower caregivers to give testimonies on QoL of a person with PIMD, which is crucial when complex decisions about the life of this person have to be made.