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Family caregiving for persons with heart failure: Perspectives of family caregivers, persons with heart failure and registered nurses
Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare. (PrILiv)ORCID iD: 0000-0002-6448-5866
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 [en]
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
Keyword [sv]
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: urn:nbn:se:mdh:diva-35194ISBN: 978-91-7485-329-2 (print)OAI: oai:DiVA.org:mdh-35194DiVA: diva2:1089451
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
List of papers
1. Registered nurses' perceptions about the situation of family caregivers to patients with heart failure a focus group interview study
Open this publication in new window or tab >>Registered nurses' perceptions about the situation of family caregivers to patients with heart failure a focus group interview study
2016 (English)In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 11, no 8, E1-E18 p.Article in journal (Refereed) Published
Abstract [en]

INTRODUCTION: Heart failure is a growing public health problem associated with poor quality of life and significant morbidity and mortality. The majority of heart failure care is provided by family caregivers, and is associated with caregiver burden and reduced quality of life. Research emphasizes that future nursing interventions should recognize the importance of involving family caregivers to achieve optimal outcomes.

AIMS: The aims of this study are to explore registered nurses' perceptions about the situation of family caregivers to patients with heart failure, and registered nurses' interventions, in order to improve family caregivers' situation.

METHODS: The study has a qualitative design with an inductive approach. Six focus group interviews were held with 23 registered nurses in three hospitals and three primary health care centres. Data were analysed using qualitative content analysis.

RESULTS: Two content areas were identified by the a priori study aims. Four categories and nine sub-categories emerged in the analysis process. The content area "Family caregivers' situation" includes two categories: "To be unburdened" and "To comprehend the heart failure condition and its consequences". The content area "Interventions to improve family caregivers' situation" includes two categories: "Individualized support and information" and "Bridging contact".

CONCLUSIONS: Registered nurses perceive family caregivers' situation as burdensome, characterized by worry and uncertainty. In the PHCCs, the continuity and security of an RN as a permanent health care contact was considered an important and sustainable intervention to better care for family caregivers' worry and uncertainty. In the nurse-led heart failure clinics in hospitals, registered nurses can provide family caregivers with the opportunity of involvement in their relative's health care and address congruence and relationship quality within the family through the use of "Shared care" and or Family-centred care. Registered nurses consider it necessary to have a coordinated individual care plan as a basis for collaboration between the county council and the municipality.

National Category
Nursing
Research subject
Care Sciences
Identifiers
urn:nbn:se:mdh:diva-31683 (URN)10.1371/journal.pone.0160302 (DOI)000374486500156 ()2-s2.0-84983358884 (Scopus ID)
Available from: 2016-06-02 Created: 2016-06-02 Last updated: 2017-04-19Bibliographically approved
2. Informal Caregivers' Experiences and Needs When Caring for a Relative With Heart Failure: An Interview Study
Open this publication in new window or tab >>Informal Caregivers' Experiences and Needs When Caring for a Relative With Heart Failure: An Interview Study
2016 (English)In: Journal of Cardiovascular Nursing, ISSN 0889-4655, E-ISSN 1550-5049, no 4, E1-E8 p., 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.

National Category
Health Sciences
Identifiers
urn:nbn:se:mdh:diva-29889 (URN)10.1097/JCN.0000000000000210 (DOI)000378096200001 ()2-s2.0-84912002806 (Scopus ID)
Available from: 2015-12-09 Created: 2015-12-09 Last updated: 2017-04-19Bibliographically approved
3. Nurses’ Attitudes toward Family Importance in Heart Failure Care
Open this publication in new window or tab >>Nurses’ Attitudes toward Family Importance in Heart Failure Care
2017 (English)In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 16, no 3, 256-266 p.Article in journal (Refereed) Published
Abstract [en]

Background: Support from the family positively affects self-management, patient outcomes and the incidence of hospitalizations among patients with heart failure (HF). To involve family members in HF care is thus valuable for the patients. Registered nurses (RNs) frequently meet family members to patients with HF and the quality of these encounters are likely to be influenced by the attitudes RNs hold toward families.

Aims: To explore RNs' attitudes toward the importance of families' involvement in HF nursing care and to identify factors that predict the most supportive attitudes.

Methods: Cross-sectional, multicentre web-survey study. A sample of 303 RNs from 47 hospitals and 30 primary health care centres (PHCC) completed the instrument Families’ Importance in Nursing Care - Nurses’ Attitudes.

Results: Overall, RNs were supportive of families' involvement. Nonetheless, attitudes toward inviting families to actively take part in HF nursing care and involve families in planning of care were less supportive. Factors predicting the most supportive attitudes were to work in a PHCC, a HF clinic, a workplace with a general approach toward families, to have a postgraduate specialization, education in cardiac and or HF nursing care, and a competence to work with families.

Conclusions: Experienced RNs in HF nursing care can be encouraged to mentor their younger and less experienced colleagues to strengthen their supportive attitudes toward families. RNs who have designated consultation time with patients and families, as in a nurse-led HF clinic, may have the most favourable condition for implementing a more supportive approach to families.

Keyword
Attitudes, family, heart failure, involvement, nursing, support, survey
National Category
Nursing
Research subject
Care Sciences
Identifiers
urn:nbn:se:mdh:diva-34264 (URN)10.1177/1474515116687178 (DOI)000398178900010 ()2-s2.0-85012077015 (Scopus ID)
Available from: 2016-12-16 Created: 2016-12-16 Last updated: 2017-04-19Bibliographically approved

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