Background: Being a parent and the primary caregiver of an adult with intellectual and
developmental disabilities (IDD) has been associated with both positive and negative experiences.
The positive experiences of being a parent notwithstanding, parents of adults with IDD are susceptible to higher levels of psychological distress and decreased quality of life (Qol). Gaining a better understanding of parental Qol and its associated factors is of paramount importance as caregiving can not only compromise parents’ coping resources, but also affect their adult children as nowadays, the welfare of people with IDD depends mainly on their parents. Moreover, it is expected that during the COVID-19 pandemic, this population faced unprecedented challenges which potentially affected parental Qol. It is important to investigate how people with IDD and their
parents experienced this pandemic and how they can be better supported in similar situations in the future.
Objectives: This thesis aimed: i) to draw upon current literature in order to gain a better understanding of parental Qol and its associated factors by examining whether caregiving for an adult with IDD is linked to reduced Qol, and to identify the factors that influence Qol (Systematic review); ii) to investigate whether self-compassion and/or self-efficacy moderate the relationship between psychological distress and parental Qol (study 1); and iii) to explore the meaning of Qol for parents of adults with IDD, and how the COVID-19 pandemic has affected parental Qol (study 2).
Results: Findings from systematic review were contradictory as parental Qol has been found to be both negatively and positively impacted by the caregiving role. Parental age, employment status, educational level, socioeconomic status, marital status, informal social support, family relationships, positive experiences and reciprocity have been found to be associated with Qol. In addition, adult child’s level of severity of IDD, challenging behaviors and physical dependency were also significantly associated with parental Qol. In study 1, results from a cross-sectional study conducted in Cyprus with parents of adults with IDD (N=165) revealed that that there was a negative
association between psychological distress and parental Qol that was significantly moderated by self-efficacy and self-compassion. In study 2, analysis of qualitative data indicated that parents
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(N=23) identify physical health, socioeconomic status, personal space, self-care, stigma, leisure activities, environment and interpersonal relationships as components of Qol. Findings further suggest that the relationship between parents and their adult children with IDD involves symbiotic traits. The majority of the participants reported a negative impact on their Qol during the COVID-19 pandemic. Worsening of physical and mental health, increased responsibility, reduced personal time and space, lifelong parenting and worry for the future were identified as risk factors, while faith, family connectedness and informal social support acted as protective factors during the
pandemic.
Conclusion: Outcomes were in agreement with previous research. The systematic review highlighted some areas of potential focus for social policy and future interventions. Empirical studies proposed the use of self-efficacy and self-compassion as components of interventions targeting parental Qol and suggested areas of improvement to be accounted for in future pandemics.