Quality of Life and Concerns in Parent Caregivers of Adult Children Diagnosed with Intellectual Disability: A Qualitative Study.

María Inmaculada Fernández-Ávalos,Francisco Cruz-Quintana,Manuel Fernández-Alcántara,Violeta Clement-Carbonell,María Nieves Pérez-Marfil,Rosario Ferrer-Cascales

doi:10.3390/ijerph17228690

María Inmaculada Fernández-Ávalos, Francisco Cruz-Quintana + Show 4 more

Open Access

https://doi.org/10.3390/ijerph17228690

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Abstract

Background: Previous studies have confirmed that parenting a child diagnosed with an intellectual disability (ID) can negatively affect the parents’ quality of life in several dimensions. However, fewer have assessed its impact years after the initial diagnosis. The objective of this work was to carry out an in-depth analysis of the current quality of life and concerns of both mothers and fathers of adults diagnosed with ID, having as a reference the moment of the diagnosis. Methods: 16 parents of adult children with ID were evaluated using a semi-structured interview format. A thematic qualitative analysis was carried out by employing ATLAS.ti software. Results: The results suggested that both the emotional and physical well-being of parents, as well as their interpersonal relationships, had declined. In addition, the multiple life changes that had occurred over the time considered in this study, as well as day-to-day worries, had prevented improvements in their quality of life. Conclusions: Several dimensions of the parents’ quality of life were affected years after a child is diagnosed with ID. These included poor physical and psychological health, economic difficulties, lack of social and family support, and lack of time for self-care.

Highlights

The birth of a child with a developmental disability can have a negative emotional impact and a destabilizing effect on family dynamics [1,2,3,4]
Other families had moved to be closer to centers where their child could receive adequate treatment to survive, or to be closer to their immediate family who could help with care provision
“I was with my mother at her house for a while with my daughter, until we went to live in an apartment, but my mother said that my daughter couldn’t live there

Summary

Introduction

The birth of a child with a developmental disability can have a negative emotional impact and a destabilizing effect on family dynamics [1,2,3,4]. The diagnosis of ID and its associated physical and emotional symptoms, as well as the changing needs of children with ID, can pose additional difficulties during the parenting process. Previous studies seem to indicate that raising a child with ID can affect the parents in various aspects of their lives such as: (a) Leisure time Previous studies have confirmed that parenting a child diagnosed with an intellectual disability (ID) can negatively affect the parents’ quality of life in several dimensions. Conclusions: Several dimensions of the parents’ quality of life were affected years after a child is diagnosed with ID. These included poor physical and psychological health, economic difficulties, lack of social and family support, and lack of time for self-care

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