![Sample our Health and Social Care journals, sign in here to start your FREE access for 14 days]({"type":"image" , "src" : "/sda/5938/TOC-Subject-Sample-2021-Health-Social-Care.jpg"})
ABSTRACT
Background
Involving patients and family members in care is a growing area of research and practice as more family members express the desire to participate as constituents of the patient care team. In this study, we aim to understand patients’ perceptions of family participation in asthma self-management, particularly concerning health information seeking behavior.
Methods
Semistructured interviews with 35 patients with asthma were conducted at the Immunoallergology wards of both a central public hospital and a private hospital in Porto, Portugal. Data were collected through the McGill Illness Narrative Interview. Interviews were thematically analyzed as case-based and process tracing-oriented.
Results
Asthma in the family history appeared to be a major determinant of two profiles of patients with asthma: Group 1 (n = 23/35) patients with asthma who are ‘nonseekers’ of health information and for whom asthma ispart of their family histories and who easily adapt to illness in their daily lives, although they had difficulties controlling their asthma, given the disease severity; and Group 2 (n =12/35) patients with asthma who are ‘seekers’ and do not have family histories of asthma and whose experiences of illness brought limitations to their daily lives, raising questions of bafflement (Why me?) and control (What can be done?).
Conclusions
Asthma patients with family histories tend to be more accepting of their diagnosis but require basic information for daily management. Asthma patients without family histories tend to deny the condition and require more emotional support to cope with it. The family should be considered as integral to the processes of knowledge-sharing and decision-making, and how families experience the disease should be taken into account by health professionals when offering a treatment plan.
Acknowledgements
The authors would like to thank the patients who participated in the study and both hospitals, particularly the Immunoallergology Department of HSJ for the assistance provided. They would also like to deeply thank Anabela Nunes (i3S) for her help in the diagram design, and the reviewers for their important comments and insights, which improved the paper in terms of clarity and significance. The authors gratefully acknowledge the support from FCT - Fundacão de Ciência e Tecnologia; FEDER - Fundo Europeu de Desenvolvimento Regional though the COMPETE 2020 - Operacional Programme for Competitiveness and Internationalisation (POCI).
Disclosure statement
No potential conflict of interest was reported by the author(s).
Ethical statement
Ethical approval was granted by the Research Ethics Committee of the HSJ.
Correction Statement
This article has been republished with minor changes. These changes do not impact the academic content of the article.
Notes
1 Before fieldwork, the research team went to a Immunoallergology Department weekly meeting. The Principal Investigator presented the project and discussed the method of recruitment. Selection criteria were presented, and our intention to employ heterogeneity sampling was explained. All researchers were introduced to the medical team. Strategies were discussed and suggestions were made to minimize disruption of normal department activity that might be caused by the presence of the research team.
Additional information
Funding
Notes on contributors
Liliana Abreu
Liliana Abreu is a postdoctoral researcher at the Group on Development Policy of University of Konstanz, Germany. She holds a PhD in Public Health, from the Medical School of University of Porto, since 2018. She has been broadly conducting research in the fields of public health and social sciences, at the University of Porto, namely, at ISPUP and i3S. Since 2010 she collaborated in several interdisciplinary projects, ranging from social and health inequalities to behavioral sciences and ethics of research, based on new concepts, such as citizens' involvement and distributed health literacy. Through the lens of the social and behavioral sciences, her work contributes to improve information on citizen-centred care; to produce evidence bases for health economics policies and regulation; and to analyze social networks transmission of power, influence and evidence. She is currently working on the impact of social adversity, namely violence experiences, as social causes of mortality and morbidity.
Júlio Borlido-Santos
Júlio Borlido-Santos Head of i3S's Communication Unit. Biologist and science communicator. He led IBMC.INEB Office for Science Communication, (2003-14) worked as life sciences researcher, schoolteacher and demonstrator at UPorto. He organizes, promotes and teaches advanced training for scientists and other audiences on “Science, Ethics and Society”; he as and is member of several national and international Science with Society projects, namely (national funding) “Evaluating the state of public knowledge on health and health information in Portugal” and a Portuguese Science Shop project "Engaging Society: Life Sciences, Social Sciences and Publics”; (FP7) NERRI, PARRISE, and is third party in the national hub of the RRI TOOLS; and (H2020) MIRACLE and INTEGRITY. He is member of General Council of Carolina Michaëlis School cluster; vice-president of i3S Council Ethics and Responsible Research; member of the Communication Council of UPorto; Board of auditors of “Viver a Cie^ncia” Association; former vice-President of Scicom.pt network; and member of other advisory boards.
Álvaro Mendes
Álvaro Mendes is an assistant researcher at i3S - University of Porto where he conducts interdisciplinary research in the field of psychosocial genetics, with a particular emphasis on processes of family communication of genetic risks and how it stems from genetic counselling. His main research interests are i) family communication about genetic risks, ii) genetic counselling and decision-making in relation to genetic testing and information-sharing; and (iii) family-oriented care in the context of inherited medical conditions. Álvaro collaborates in international projects and maintains collaborations with national and international scholars in topics in the area of psychosocial and ethical aspects of genetics. He holds a degree in Clinical Psychology (University of Coimbra, PT) and a PhD in Health Sciences and Technology (University of Aveiro, PT). He is a certified specialist in Clinical and Health Psychology (advanced specialty in Psychotherapy, LPsy) and a chartered systemic family and couple therapist (LMFT).
Maria Rui Vilar-Correia
Maria Rui Vilar-Correia, Biologist, PhD in Didactics and Teachers Training in Higher Education (HE). Was Assistant Professor on Didactics of Biology Teaching at the Faculty of Sciences of the UPort0 (1981-2003). She has a vast experience in teachers training, in producing learning materials and activities for university and Secondary students as well as in qualitative methodologies and studies. She is/was member of science in society projects. Currently she is collaborator at i3S as co-responsible for the Cultural Outreach Art/Science interface of the Institution and member of Accreditation Commission at the “Escola Superior de Artes e Design - Matosinhos (ESAD) and responsible for the quality evaluation of the Art and Design Courses of ESAD.