Improving the transition process to independent living for adolescents with profound intellectual disabilities. Experiences of parents and employees.

Abstract

Background The 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. Methods A 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. Results The 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 that they had 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 children developed skills, mastery and degrees of independence after completing a residency at the Folk High School. Conclusions To 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.

Factor Affecting Independent Living of Persons with Intellectual Disabilities: A Systematic Review

“…Furthermore, nine studies were conducted in the United States (Bouck, 2020;Brown et al, 2018;Chan et al, 2018;Collier et al, 2017;Cullen et al, 2017;Dell'Armo et al, 2019;Houseworth et al, 2018;Ryan et al, 2019;Stancliffe & Anderson, 2017) and three articles in the United Kingdom (Bennett et al, 2019;Terras et al, 2018;Williams et al, 2018). Two studies were respectively conducted in Australia (Ho et al, 2018;Thompson et al, 2018), Taiwan (Chou et al, 2017;Lin et al, 2020) and Norway (Janson & Aure, 2021;Roos & Sondenaa, 2020). Other than that, each study was conducted in German (Schmidt et al 2021), Florida (Agarwal et al, 2021), Sweden (Johansson et al, 2017), Greece (Dimitriadou et al, 2017), Ireland (Gadd, 2020), Scotland (Anderson et al, 2020), England (Hassiotis et al, 2020), Among the 28 articles, 19 articles involve persons with intellectual or learning disabilities as a research sample (Bennett et al, 2019;Cano et al, 2019;Chan et al, 2018;Chou et al, 2017;Collier et al, 2017;Cullen et al, 2017;Dell'Armo et al, 2019;Dimitriadou et al, 2017;Gadd, 2020;Ho et al, 2018;Houseworth et al, 2018;Kilincaslan et al, 2019;Lin et al, ...…”

“…Other than that, each study was conducted in German (Schmidt et al 2021), Florida (Agarwal et al, 2021), Sweden (Johansson et al, 2017), Greece (Dimitriadou et al, 2017), Ireland (Gadd, 2020), Scotland (Anderson et al, 2020), England (Hassiotis et al, 2020), Among the 28 articles, 19 articles involve persons with intellectual or learning disabilities as a research sample (Bennett et al, 2019;Cano et al, 2019;Chan et al, 2018;Chou et al, 2017;Collier et al, 2017;Cullen et al, 2017;Dell'Armo et al, 2019;Dimitriadou et al, 2017;Gadd, 2020;Ho et al, 2018;Houseworth et al, 2018;Kilincaslan et al, 2019;Lin et al, 2020;Park & Park, 2019;Ryan et al, 2019;Schmidt et al, 2021;Stancliffe & Anderson 2017;Terras et al, 2018;Williams et al, 2018). Six articles analyse data from the parents or caregivers of the persons with intellectual disabilities (Agarwal et al, 2021;Bouck, 2020;Brown et al, 2018;Janson & Aure, 2021;Roos & Sondenaa, 2020;Thompson et al, 2018), and three articles employ professionals involved directly with persons of intellectual disabilities as research participants (Anderson et al, 2020;Hassiotis et al, 2020;Johansson et al, 2017).…”

“…Regarding the year of publication, six articles were published in 2017 (Chou et al, 2017;Collier et al, 2017;Cullen et al, 2017;Dimitriadou et al, 2017;Stancliffe & Anderson, 2017;Johansson et al, 2017), and seven were published in the year 2018 (Brown et al, 2018;Chan et al, 2018;Ho et al, 2018;Houseworth et al, 2018;Terras et al, 2018;Thompson et al, 2018;Williams et al, 2018). Next, six articles were published in 2019 (Bennett et al, 2019;Cano et al, 2019;Dell'Armo et al, 2019;Kilincaslan et al, 2019;Park & Park, 2019;Ryan et al, 2019), followed by six were published in 2020 (Anderson et al, 2020;Bouck, 2020;Gadd, 2020;Hassiotis et al, 2020;Lin et al, 2020;Roos & Sondenaa, 2020), and three articles published in 2021 (Agarwal et al, 2021;Janson & Aure, 2021;Schmidt et al, 2021).…”

“…Despite that, many parents are also recognized as overprotective and lacking confidence in their child's ability to live alone or away from family (Agarwal, 2021;Park & Park, 2019). As a result, parental actions will develop negative consequences and act as barriers to PWID growth and independence (Brown, 2018;Roos, 2020).…”

“…Policy and regulation have been identified as the crucial factors that could directly affect the decision of independent living among PWID (Collier, 2017). Living in a comfortable and safe house complete with excellent facilities, such as easy access to transport and services, is a key factor for successful independent living among PWID (Roos, 2020). In the United Kingdom, the government provides housing as accommodation in community living to support the idea of independence among persons with disabilities (Anderson, 2020;Williams, 2018).…”