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 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. 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.

Family Caregiver Adaptation during the Transition to Adulthood of Individuals with Intellectual Disabilities: A Scoping Review

“…Caregivers. Regarding caregivers’ employment, Roos and Sondenaan [ 56 ] highlighted that some caregivers of individuals with ID in the profound range cannot sustain their employment because they need to take care of their children. Another study conducted by Gur, Amsalem, and Rimmerman [ 55 ] highlighted in detail that almost half of the caregivers of an individual with all ranges of ID were employed, and about 47.5% of the caregivers were out of the workforce.…”

“…Roos and Sondenaan [ 56 ] highlighted that the caregivers of individuals with ID of profound severity reported concern about the waiting list to move out of the family homes. The caregivers needed to know how long they had to wait and where the child would be moving.…”

The Importance of Centers for Independent Living Supporting Youth With Disabilities: A Critical Contribution to Maximize Transition Service Delivery

“…The three overarching service areas that appeared in this study fell under the following areas: Personal development, college and career, and independent living. Although each of these areas are all demonstrably important areas of transition support and well documented in the literature (e.g., Carter et al, 2021; Kohler et al, 2016; Lombardi et al, 2017; Roos & Sondenaa, 2020), the vast majority of the transition literature focuses on collaboration to maximize career success (Oertle & Seader, 2015; Plotner et al, 2017, 2020). The CIL scope of youth services reported in this study includes a wide array of services well beyond just independent living supports, which some transition stakeholders might believe is the only focus area of CILs.…”

Real‐world treatment patterns of metastatic non‐small cell lung cancer patients receiving epidermal growth factor receptor tyrosine kinase inhibitors

“…Baseline measures of patients included demographic information and clinical characteristics such as categories of the Dartmouth‐Manitoba's Charlson Comorbidity Index (CCI) 19 (modified to exclude solid tumor). Number of unique metastasis sites were analyzed based on all diagnosis codes of metastasis, observed on the index date or during the baseline period (within 90 days before the index date).…”