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

ABSTRACT: 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.

SUBMITTER: Kruithof K

PROVIDER: S-EPMC7687241 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature

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

Kruithof Kasper K Willems Dick D van Etten-Jamaludin Faridi F Olsman Erik E

Journal of applied research in intellectual disabilities : JARID 20200505 6

<h4>Background</h4>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.<h4>Method</h4>We conducted an interpretative synthesis, searched PubMed, CINAHL, Philosopher's Index and PsycINFO and included fourteen studies.<h4>Results</h4>Parents' knowledge was based on their long-lasting and special bond with their c ...[more]

PMID: 32367663

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Project description:BackgroundThe transition process from the family home to independent living for young adults with profound intellectual disability (PID) becomes delayed. Those families face challenges that exceed those of typical families such as higher objective and subjective burden, more frequent psychological distress and lower social support. The aim of this study was to explore the collaboration process between parents and employees and identify factors that improve the transition with less burden.MethodsA descriptive qualitative study was undertaken with 18 persons (9 parents and 9 employees) interviewed individually and in groups. In accordance with the municipality's guidelines, families with a child with PID should apply for housing, when the child turns 16. The purpose is to ensure interdisciplinary collaboration, information flow and coordinated services according to family's needs. The main question in the interviews was 'What was your experience with cooperation in the transition process, and what would you do to improve this process?' The interviews were analysed with a thematic approach using systematic text condensation.ResultsThe parents experienced a lack of general information about the 'housing waiting list', level of services, and the plan for time of moving from the family home, and how to choose where and whom to live with. Parents described an unsustainable burden of care during the waiting period, and a family crisis caused the allocation of an apartment in a group house. Employees shared challenges to meet families' wishes, as there were too few group homes. They experienced good collaboration with families and said they offered respite care, due to reduce parents' burden of care. Employees experienced that PID adolescents developed skills, mastery and degrees of independence after completing a residency at the Folk High School.ConclusionsTo improve the transition process from family home to independent living for young adults with PID, the informants highlighted some factors to reduce the burden of care on families: 1) Systematic follow-up program for families to observe their needs at an early stage; 2) More available group houses; 3) Information about the housing priorities of the services and; 4) Educational preparation programs for families.

Project description:BackgroundThe care organization of persons with profound intellectual and multiple disabilities (PIMD) varies by country according to the health care system. This study used a large sample of French individuals with severe PIMD/polyhandicap to assess: 1) the adequacy of care setting over a 5-year period and 2) health care consumption.MethodsThe longitudinal study used data from the French EVALuation PoLyHandicap (EVAL-PLH) cohort of persons with severe PIMD/polyhandicap who were receiving managed in specialized care centres and residential facilities. Two assessments were performed: wave 1 (T1) in 2015-2016 and wave 2 (T2) in 2020-2021. The inclusion criteria were as follows: age > 3 years at the time of inclusion; age at onset of cerebral lesion younger than 3 years old; and severe PIMD. The adequacy of the care setting was based on the following: i) objective indicators, i.e., adequacy for age and adequacy for health status severity; ii) subjective indicators, i.e., self-perception of the referring physician about medical care adequacy and educational care adequacy. Health care consumption was assessed based on medical and paramedical care.ResultsAmong the 492 persons assessed at the 2 times, 50% of individuals at T1 and 46% of individuals at T2 were in an inadequate care setting based on age and severity. Regarding global subjective inadequacy, the combination of medical adequacy and educational adequacy, 7% of individuals at T1 and 13% of individuals at T2 were in an inadequate care setting. At T2, a majority of individuals were undermonitored by medical care providers (general practitioners, physical medicine rehabilitation physicians, neurologists, orthopaedists, etc.). Important gaps were found between performed and prescribed sessions of various paramedical care (physiotherapy, occupational therapy, psychomotor therapy, etc.).ConclusionsThis study revealed key elements of inadequate care management for persons with severe PIMD/polyhandicap in France. Based on these important findings, healthcare workers, familial caregivers, patients experts, and health decision-makers should develop appropriate care organizations to optimize the global care management of these individuals.Trial registrationNCT02400528, registered 27/03/2015.

Dataset Information

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

Publications

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

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