Quality of Family Life of Young People with Intellectual Disabilities in the "We Are All Campus" Training Program. A Family Perspective

Abstract

The evolution in the conceptualization of disability, from pathological approaches to social and ecological perspectives, has meant highlighting the importance of the family in the quality of life of people with disabilities. Because this family environment not only facilitates the transmission of knowledge, but also establishes the norms of behaviour, values and attitudes, which is fundamental for the growth and independent living of people with intellectual disabilities (hereinafter, PWD). The purpose of this study, reviewed and approved by the Research Ethics Committee of the University of Murcia, is to evaluate the level of quality of family life of the PcDI who have participated in the training programme ‘Todos Somos Campus’ of the University of Murcia. For this purpose, a non-experimental quantitative methodology of an exploratory and evaluative nature was used. A total of 30 family members/guardians of PwID have participated in the research and the QoL-ER (>18), Family Quality of Life Scale, has been applied for families with children with Intellectual and/or Developmental Disabilities (DID) over the age of 18 years (Giné et al., 2019). In terms of procedure, the research consisted of an initial phase (collection of bibliographical information and development of the digital version of the questionnaire), a development phase (distribution of the questionnaire and data collection and storage) and a final phase (data analysis). Rigorous methods were used to ensure the quality and reliability of the data. The main results indicate that there is a generalized perception of a positive quality of family life among the participants, highlighting a largely positive family environment. However, the possibility of increasing the competency of the PcDI to stay at home alone through strategies that promote their autonomy is pointed out. A positive appraisal of social relationships and external support for the IDP is highlighted, but it is suggested that communication on sexuality issues in the family environment should be improved. Despite some concern about future financial stability, there is a strong perception of competence to cover essential needs. Family dynamics show cohesion and acceptance of IDP, but it is suggested that strategies be explored to strengthen collaboration and the equitable distribution of responsibilities. Participants under the age of 50 tend to have more resources to cope with difficult moments, show more interest in disability education and are more open to talk to the PcDI about affective and sexual issues. On the other hand, female participants perceive that their families have more resources to cope with critical situations and have a more positive view of family energy in the face of disability.