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Informal Caregivers' Experiences and Needs When Caring for a Relative With Heart Failure: An Interview Study
Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare. (PriLiv)ORCID iD: 0000-0002-6448-5866
Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.ORCID iD: 0000-0002-1342-7615
Centre for Clinical Research, Uppsala University, County Council of Västmanland, Västerås, Sweden.
Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare. (PriLiv)ORCID iD: 0000-0002-5976-5193
2016 (English)In: Journal of Cardiovascular Nursing, ISSN 0889-4655, E-ISSN 1550-5049, no 4, p. E1-E8, article id 25419945Article in journal (Refereed) Published
Abstract [en]

Background: Informal caregivers play an important role for persons with heart failure in strengthening medication adherence, encouraging self-care, and identifying deterioration in health status. Caring for a relative with heart failure can affect informal caregivers' well-being and cause caregiver burden. Objective: The objective of this study was to explore informal caregivers' experiences and needs when caring for a relative with heart failure living in their own home. Methods: The study has a qualitative design with an inductive approach. Interviews were conducted with 14 informal caregivers. Data were analyzed using qualitative content analysis. Results: Two themes emerged: "living in a changed existence" and "struggling and sharing with healthcare." The first theme describes informal caregivers' experiences, needs, and ways of moving forward when living in a changed existence with their relative. Informal caregivers were responsible for the functioning of everyday life, which challenged earlier established roles and lifestyle. They experienced an ever-present uncertainty related to the relative's impending sudden deterioration and to lack of knowledge about the condition. Incongruence was expressed between their own and their relative's understanding and acceptance of the heart failure condition. They also expressed being at peace with their relative and managed to restore new strength and motivation to care. The second theme describes informal caregivers' experiences, needs, and ways in which they handled the healthcare. They felt counted upon but not accounted for, as their care was taken for granted while their need to be seen and acknowledged by healthcare professionals was not met. Informal caregivers experienced an ever-present uncertainty regarding their lack of involvement with healthcare. The lack of involvement with healthcare had a negative impact on the relationship between informal caregivers and their relative due to the mutual loss of important information about changes in medication regimens and the relative's symptoms and well-being. Another cause of negative impact was the lack of opportunity to talk with healthcare professionals about the emotional and relational consequences of heart failure. Healthcare professionals had provided them neither with knowledge on heart failure nor with information on support groups in the municipality. Informal caregivers captured their own mandate through acting as deputies for their relative and claiming their rights of involvement in their relative's healthcare. They also felt confident despite difficult circumstances. The direct access to the medical clinic was a source of relief and they appreciated the contacts with the registered nurses specialized in heart failure. Informal caregivers' own initiatives to participate in meetings were positively received by healthcare professionals. Conclusions: Informal caregivers' daily life involves decisive changes that are experienced as burdensome. They handled their new situations using different strategies to preserve a sense of "self" and of "us." Informal caregivers express a need for more involvement with healthcare professionals, which may facilitate informal caregivers' situation and improve the dyadic congruence in the relation with their relative.

Place, publisher, year, edition, pages
2016. no 4, p. E1-E8, article id 25419945
National Category
Health Sciences
Identifiers
URN: urn:nbn:se:mdh:diva-29889DOI: 10.1097/JCN.0000000000000210ISI: 000378096200001Scopus ID: 2-s2.0-84912002806OAI: oai:DiVA.org:mdh-29889DiVA, id: diva2:881199
Available from: 2015-12-09 Created: 2015-12-09 Last updated: 2017-12-01Bibliographically approved
In thesis
1. Family caregiving for persons with heart failure: Perspectives of family caregivers, persons with heart failure and registered nurses
Open this publication in new window or tab >>Family caregiving for persons with heart failure: Perspectives of family caregivers, persons with heart failure and registered nurses
2017 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Heart failure is a growing public health problem associated with significant morbidity and mortality. Family support positively affects outcomes for the person with heart failure while also leading to caregiver burden. Registered nurses have a key role in supporting and meeting the needs of family caregivers.

The overall aim was to explore the situation and needs of family caregivers to a person with heart failure, and explore requisites and ways of supporting and involving family caregivers in heart failure nursing care.

Two interview studies, one web survey study and one intervention study were conducted between 2012 and 2017. A total of 22 family caregivers, eight persons with heart failure and 331 registered nurses participated in the studies.

Family caregivers' daily life was characterized by worry, uncertainty and relational incongruence but salutogenic behaviours restored new strength and motivation to care. Family caregivers experienced that their caregiving was taken for granted by health care professionals. Family caregivers expressed a need for a permanent health care contact and more involvement in the planning and implementation of their near one’s health care together with health care professionals. Registered nurses acknowledged family caregivers’ burden, lack of knowledge and relational incongruence. A registered nurse was suggested as a permanent health care contact to improve continuity and security. Registered nurses neither acknowledged family caregivers as a resource nor their need for involvement. Registered nurses working in primary health care centres, in nurse-led heart failure clinics, with district nurse specialization, with education in cardiac nursing care held the most supportive attitudes toward family involvement in heart failure nursing care. Family health conversations via telephone in nurse-led heart failure clinics were found to successfully support and involve families. The conversations enhanced nurse-family relationship and relations within the family. They also provided registered nurses with new, relevant knowledge and understanding about the family as a whole. Family health conversations via telephone were feasible to both families and registered nurses, although fewer and shorter conversations were preferred by registered nurses.

This thesis highlights the divergence between family caregivers’ experiences and needs, and registered nurses’ perceptions about family caregivers’ situation and attitudes toward the importance of family involvement. It adds to the knowledge on the importance to acknowledge family caregivers as a resource and to support and involve them in heart failure nursing care. One feasible and successful way is to conduct Family health conversations via telephone in nurse-led heart failure clinics.

Place, publisher, year, edition, pages
Västerås: Mälardalen University, 2017
Series
Mälardalen University Press Dissertations, ISSN 1651-4238 ; 228
Keyword
Attitudes, cardiovascular nursing, caregiving, content analysis, family, family caregiver, family-centered nursing, family systems theory, heart failure, informal caregiver, interview, intervention, older person, pretest-posttest design, questionnaire, web survey, Anhörigvårdare, attityder, familj, familjecentrerad omvårdnad, frågeformulär, före- och efter design, hjärtsvikt, informell vårdgivare, innehållsanalys, intervention, intervju, kardiovaskulär omvårdnad, webbenkät, äldre person
National Category
Nursing
Research subject
Care Sciences
Identifiers
urn:nbn:se:mdh:diva-35194 (URN)978-91-7485-329-2 (ISBN)
Public defence
2017-06-15, Delta, Mälardalens högskola, Västerås, 13:15 (English)
Opponent
Supervisors
Available from: 2017-04-28 Created: 2017-04-19 Last updated: 2017-07-10Bibliographically approved

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Gusdal, Annelie KJosefsson, KarinMartin, Lene

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