Background: The global COVID-19 pandemic has shown the vulnerability of some population groups, including persons with intellectual and developmental disabilities (IDD).
Aim: The present paper will provide more clarity and understanding of the experiences of family members of persons with IDD housed in residential facilities in Catalonia within the period of maximum restrictions during the COVID-19 pandemic.
Methods and procedures: Semi-structured interviews were conducted using an interpretive phenomenological qualitative approach. Study participants consisted of 14 relatives of IDD individuals who were institutionalized in residence facilities or homes. The guiding questions emerged from group discussions with relatives of those with IDD who did not participate in the subsequent interviews. Drawing from this group, the factors that were identified to have had the greatest impact on their lives were later used to guide the interviews. Data collection was carried out in face-to-face individual interviews that were recorded together with the observations of two researchers between February and October 2022.
Results: Our analysis identified 4 main themes that developed into additional factors: the decision to stay at home or in the residence, fear, illness, and protocol. Individuals with IDD lost their daily routines, suffered from social isolation, and did not understand the situation.
Conclusion: The results of this study allow for a better understanding of the experiences of families of persons with IDD in residential centres during the lockdown by identifying their needs and how to better support them in the future.
Outcomes and results: Knowledge and understanding of these events should allow for better management of similar situations in the future.
Keywords: COVID-19; Experiencies; Qualitative research; family; intellectual and developmental disabilities (IDD).
This study contributes to a growing body of research that examines the experiences of IDD individuals and their families during the early months of the COVID-19 pandemic. A qualitative phenomenological interpretative approach was used following the recommendations of qualitative research practices in health care. Our findings reveal that relatives of persons with IDD who lived in residential care homes felt that the residents were not adequately cared for by the staff, who applied measures for containment and contagion prevention that were disproportionate, resulting in their needs not being considered; these recommended measures had been developed for elderly care homes. Individuals with IDD lost their daily routines, suffered from social isolation, and did not understand the situation. The present findings show that residential care homes for persons with IDD require specific action protocols in crisis situations that are adapted to the needs and characteristics of each centre,thus adopting a model of care based on human rights.