https://orcid.org/0000-0002-3893-4488
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ABSTRACT
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.
The impact of the present research
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.
Acknowledgments
We would like to thank all the participants in this study for sharing their experiences from what was a difficult period in their lives. We also thank the management teams of the residences for opening their doors to us and collaborating with our requests.
Disclosure statement
No potential conflict of interest was reported by the author(s).
Supplementary Material
Supplemental data for this article can be accessed online at https://doi.org/10.1080/17482631.2023.2288100
Additional information
Funding
Notes on contributors
Montserrat Puig Llobet
Montserrat Puig Llobet RN, Bd, PhD, Professor in the Department of Public Health, Mental Health and Maternal-Child Nursing, School of Nursing, University of Barcelona, Health Sciences Campus Bellvitge. Scientific career with more than 60 publications in JCR and participation in national and international research projects. Direction of 8 doctoral theses in the line of positive mental health in different populations and in different doctoral programs. Member of the research team of the SGR ‘Nursing care in mental health, psychosocial and complexity’. Evaluator in evaluation agencies and scientific reviewer in journals indexed in JCR.
Montserrat Roca Roger
Montserrat Roca Roger RN, Bd, PhD, Retired Professor in the Department of Public Health, Mental Health and Maternal-Child Nursing, School of Nursing, University of Barcelona, Health Sciences Campus Bellvitge. Director and tutor of different doctoral theses. Participation as principal investigator and collaborator investigator in different research projects. Author of various articles and book chapters.
Teresa Nicolàs Silva
Terea Nicolàs Silva RN, Nurse in the Residence for People with Intellectual Disabilities La Vinyota. Mollet Health Foundation Nurse. Participation as collaborator investigator in a 1 competitive project. author of various articles, communications, and book chapters.
Gemma Pérez Gimenez
Gemma Pérez Gimenez RN, MSc, PhD, Head of Sick Medical Nursing Area and alternatives to hospitalization in the Granollers General Hospital. Associate professor in Tecnocampus Participation as collaborator investigator in different competitive project. Author of various communications and book chapters.
Zaida Agüera
Zaida Agüera Imbernon RN, Bd, PhD, Professor in the Department of Public Health, Mental Health and Maternal-Child Nursing, School of Nursing, University of Barcelona, Health Sciences Campus Bellvitge. Scientific career with more than 100 publications in JCR and participation in national and international research projects. External evaluator of ANEP since 2017. Training capacity guaranteed by tutoring 10 final degree projects, 10 final Master’s projects and the co-direction of 5 doctoral theses.
Maria-Teresa Lluch Canut
Maria Teresa Lluch Canut RN, Bd, PhD, Professor in the Department of Public Health, Mental Health and Maternal-Child Nursing, School of Nursing, University of Barcelona, Health Sciences Campus Bellvitge, Principal investigator in 6 competitive projects and collaborator in 20 competitive projects. More than 80 publications indexed in JCR, more than 20 in relevant authorship position. He has directed 30 doctoral theses and another 5 in progress in different doctoral programs. External evaluator of research projects. Evaluator of scholarships and financial aid in different organizations.
Juan Francisco Roldan Merino
Juan Francisco Roldan Merino RN, MSc, PhD,, Professor in the Department of Mental Health, Campus Docent Sant Joan de Déu, University of Barcelona, Barcelona Head of Studies of the Campus Docent Sant Joan de Déu. Co-direction of 15 doctoral theses. Of which 3 in the line of positive mental health. I am currently co-directing 10 doctoral theses. Regarding research, my scientific production consists of 70 international publications indexed in the Journal Citation Report and more than 20 publications indexed in other databases.
Carmen Moreno Arroyo
Carmen Moreno Arroyo RN, MSc, PhD, Professor in the Department of Fundamental and Medical-Surgical Nursing, School of Nursing, Faculty of Medicine and Health Sciences, University of Barcelona (UB). 62 articles published (15 in JCR-indexed journals - 4 Q1; 4 Q2; 4 Q3; 3 Q4; 36 in Scopus-indexed journals; and 11 in non-indexed journals). Participation in 33 research projects (13 financed in competitive calls; Member EI). Director of 5 doctoral theses. Member of 9 theses committees. 8 years as an expert evaluator of research projects (Official College of Nursing of Barcelona).
Marta Prats Arimon
Marta Prats Arimon RN, Bd, PhD. Professor in the Department of Fundamental and Medical-Surgical Nursing, School of Nursing, Faculty of Medicine and Health Sciences, University of Barcelona (UB), Participation as principal investigator of 1 competitive and 2 non-competitive research projects. Participation as collaborator investigator of 1 competitive national and 1 regional projects. Scientific reviewer in Health and Social Community journal indexed in JCR, Author of 5 publications, 2 indexed in JCR.
Maria Aurelia Sánchez Ortega
Maria Aurelia Sánchez Ortega RN, Bd, PhD, Professor in the Nursing and Occupational Therapy School (EUIT), Universitat Autònoma de Barcelona. For 15 years I have combined university teaching for Diplomas, Degrees and Masters with the assistance and management of primary care teams. I am currently directing 2 doctoral theses in the line of positive mental health in the doctoral program of the University of Barcelona. I have participated in 3 competitive projects as collaborator investigator. I am an evaluator of scholarships and financial aid in different organizations.
Xavier Domènech Mascaró
Xavier Domenech Mascaro Bd, MSc, Administrative in the catalan health institute. Doctoral student in medicine Bachelor of Business Administration. Diploma in business Master in direction and health management. Participation as collaborator investigator in a 1 competitive project. author of several communications.
Miguel Angel Hidalgo Blanco
Miguel Angel Hidalgo Blanco RN, MSc, PhD, Professor in the Department of Fundamental and Medical-Surgical Nursing, School of Nursing, Faculty of Medicine and Health Sciences, University of Barcelona (UB). Author of several articles published in JCR-indexed journals and Scopus-indexed journals. Participation in 6 research projects competitive. Director of 1 doctoral thesis.
Antonio Moreno Poyato
Antonio Moreno Poyato RN, MSc, PhD, Professor in the Department of Public Health, Mental Health and Maternal-Child Nursing, School of Nursing, University of Barcelona, Health Sciences Campus Bellvitge. Principal investigator in 5 competitive projects and collaborator in 8 competitive projects. More than 35 publications indexed in JCR, more than 20 in authorship position Page 13 of 15 relevant. Directing 15 doctoral theses in progress in different doctoral programs. External evaluator of research projects. Reviewer of national and international scientific journals indexed in JCR.