Project management: Prof. Dr. Markus Schäfers
Project staff: Anna Elberg (since 2021), Dr. Katrin Reich (until 2020)
Cooperation partners: Lebenshilfe Landesverband Hessen, Bundesvereinigung Lebenshilfe
Funding: Hessian Ministry of Science and the Arts - funding programme "Research for Practice") (sub-study 1), research funding from Fulda University of Applied Sciences/own funds (sub-study 2)
Duration: July 2019 - December 2022

Project description:

The Families.Strengths project gains insights into the quality of life of families in which adult persons with disabilities live or have lived.

About half of the people with disabilities, especially those with intellectual disabilities, continue to live in their families, usually with their parents, even at an advanced age. With the increasing age of the parents who provide care and support, the families often reach the limits of their stress and capacity. Although these families do see a need for support, they often do not make use of the help available.

Especially highly stressed families seem in many cases to hardly deal with the question of how the care of the disabled family member can be ensured in the future. As a result, crisis situations arise when parents can no longer care for their adult children, e.g. due to their own illness, need for care or when one parent dies. In these cases, a new form of housing and care often has to be organised at very short notice for the persons with disabilities concerned. This poses great problems for both the families and the institutions providing assistance for people with disabilities.

The families' reasons for not making use of assistance, as well as their perspectives regarding the future living and care situation of the disabled family member, are examined in sub-study 1 of the research project Families.Strengths.

Sub-study 2 takes a closer look at the transition from family to professional care. Families whose situation has changed in the recent past as a result of the family member with a disability moving into supported housing are interviewed: What reasons led to the move out of the family into assisted living? How was this transition experienced? What support was helpful or would have been useful?

This retrospective view of the family/professional care transition in sub-study 2 is a profitable supplement to the prospective view in sub-study 1, which is oriented towards the future perspectives of the families. This makes comparisons possible between families who have (still) decided against a life of the disabled family member outside the family of origin and families who have ended the phase of living together.

Based on the findings of the project, concepts of family counselling and support can be further developed to strengthen, relieve and accompany the families.

Publication:
Reich, Katrin; Schäfers, Markus (2021): Quality of life and life perspectives of families with disabled relatives in adulthood. Results of the project "Families.Strengths". In: Teilhabe 60 (3), 100-106. Available: here.

Schäfers, Markus (2018): Families with disabled relatives in adulthood. Between family cohesion and professional care. In: Bundesvereinigung Lebenshilfe (ed.): Familien unterstützen. Ideas and practical examples for professionals and volunteers. Marburg: Lebenshilfe, pp. 53-68.