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Caring needs in patient-partner dyads affected by heart failure: An evaluation of the long-term effects of a dyadic psycho-educational intervention
Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.ORCID iD: 0000-0002-7957-8600
2017 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Introduction: As medical treatment has improved, patients with heart failure (HF) now live longer and care mostly takes place at home with partners providing the main assistance. Taking care of an ill or disabled individual imposes a well-documented burden on the partner’s healthrelated quality of life. The awareness of partners’ burdensome situation is increasing, but few interventions have targeted the needs of patientpartner dyads with HF. The results have been inconclusive and give no clear guidance on how interventional programmes should be designed to improve both patient and partner outcomes.

Aim: The overall aim of this thesis was to evaluate the effects of a psychoeducational intervention delivered to patient-partner dyads with HF during long-term follow-up, and to explore the dyads’ perceived caring needs.

Methods: The thesis is based on four papers that used both quantitative and qualitative data. Study I and II used a randomized controlled design with a follow-up assessment after 24 months including 155 patientpartner dyads. The control group received care as usual. The intervention group received care as usual, and in addition they participated in the nurse-led psycho-educational intervention. Data was collected using questionnaires before and 24 months after the intervention, in order to determine the long-term effects on patients and partners regarding health related quality of life, perceived control, symptoms of depression and partners’ caregiver burden (I, II). A conceptual health promotion model inspired the intervention. To describe how the model was applied, a qualitative approach analysing nurses’ documentation of the sessions with 71 dyads in the intervention group (III) was used. Study IV has an explorative design. To further explore the dyads’ perceived caring needs, focus groups interviews with 19 patient-partner dyads with heart failure (IV) were performed.

Results: The intervention did not have any significant effect on physical or mental health- related quality of life, depressive symptoms, or perceived control over the heart failure among the dyads (I) or caregiver burden in the partners (II) after 24 months. Furthermore, time to first event did not differ significantly between the dyads in the intervention group and the control group (I, II). As for the partners, both the intervention and control group reported decreased physical health between the baseline assessment and the 24-month follow-up (I). The intervention was composed of three components; 1) cognitive 2) supportive, and 3) behavioural component. The analysis of the nurses’ documentation confirmed the coverage of all the components and the analysis revealed a vide range of caring needs among the dyads (III). The dyads described a need to learn about HF to be able to manage everyday life. Regular outpatient clinic visits and access to telephone support were vital and both the patient and the partner need to be present at the clinic visits. Meeting others who are in the same situation and sharing the burden in nurse-led group sessions was proposed as an opportunity to support each other and others (IV).

Conclusions: Over the 24-month follow-up period, the intervention had a neutral effect on health- related quality of life, depressive symptoms and perceived control over the HF among the dyads, and on partners’ caregiver burden. Considering the fact that partners serve as a critical extension of the formal healthcare system, and that both patients and partners ask for more support, it will become crucial to find new ways to support dyads affected by heart failure. This thesis may be viewed as a first step in trying to understand dyads’ perceived caring needs, and it can serve as a guide in clinical work and when designing new dyadic interventions.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2017. , p. 97
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1555
Keywords [en]
Heart failure; intervention; caregiver burden; partner; dyad; nursing; qualitative content analysis; caring needs
National Category
Nursing Health Care Service and Management, Health Policy and Services and Health Economy Other Health Sciences General Practice Other Medical Sciences not elsewhere specified
Identifiers
URN: urn:nbn:se:liu:diva-133182DOI: 10.3384/diss.diva-133182ISBN: 9789176856222 (print)OAI: oai:DiVA.org:liu-133182DiVA, id: diva2:1055919
Public defence
2017-02-03, Berzeliussalen, Universitetssjukhuset, Linköping, 09:00 (English)
Opponent
Supervisors
Available from: 2016-12-13 Created: 2016-12-13 Last updated: 2018-01-13Bibliographically approved
List of papers
1. Long Term Follow-Up after a Randomized Integrated Educational and Psychosocial Intervention in Patient-Partner Dyads Affected by Heart Failure
Open this publication in new window or tab >>Long Term Follow-Up after a Randomized Integrated Educational and Psychosocial Intervention in Patient-Partner Dyads Affected by Heart Failure
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2015 (English)In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 10, no 9, p. e0138058-Article in journal (Refereed) Published
Abstract [en]

Background To date, contemporary heart failure care remains patient-focused, but awareness of the partners and families situation is increasing. Randomized studies have mainly evaluated the short-term effects of dyadic interventions. Therefore, the aim of this study was to determine the 24-month effects of an intervention with psych-educational support in dyads of heart failure patients and their partners. Methods This study used a randomized study design and 155 patient-partner dyads were enrolled. The intervention included a nurse-led program of three sessions addressing psychoeducational support. Results The intervention did not have any effect on health, depressive symptoms or perceived control among the patient-partner dyads after 24 months. Furthermore, time to first event did not differ significantly between the intervention group and the control patients. Conclusion This study may be regarded as a first step in trying to understand dyads need for supportive care. Individualized and more targeted interventions seem necessary to achieve a higher impact on dyad outcomes.

Place, publisher, year, edition, pages
PUBLIC LIBRARY SCIENCE, 2015
National Category
Clinical Medicine Sociology
Identifiers
urn:nbn:se:liu:diva-122211 (URN)10.1371/journal.pone.0138058 (DOI)000361800700030 ()26406475 (PubMedID)
Note

Funding Agencies|Centre for Clinical Research Sormland; Linkoping University; Swedish Research Council; Swedish Institute for Health Sciences

Available from: 2015-10-26 Created: 2015-10-23 Last updated: 2017-12-01
2. Long-term effects of a dyadic psycho-educational intervention on caregiver burden and morbidity in partners of patients with heart failure: a randomized controlled trial
Open this publication in new window or tab >>Long-term effects of a dyadic psycho-educational intervention on caregiver burden and morbidity in partners of patients with heart failure: a randomized controlled trial
Show others...
2017 (English)In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 26, no 2, p. 367-379Article in journal (Refereed) Published
Abstract [en]

Background

Partners of patients with heart failure provide both practical and emotional support. Many partners assume caregiving responsibilities without being aware of the burden related with this role.

Objective

Our work has established that a psycho-educational intervention has benefits at 3, but not at 12 months for patients with heart failure. Further we had not described the long-term effects in caregivers. This study aimed to determine the 24-months effects of a dyadic psycho-educational intervention on caregiver burden and morbidity in partners of patients with heart failure and study factors associated with a change in caregiver burden.

Design

A randomized controlled study design, with a follow-up assessment after 24 months.

Setting and participants

Partners to patients with heart failure were recruited from two hospitals in the southeast of Sweden.

Intervention

A three session nurse-led psycho-educational program was tested and included psychosocial support to maintain the partners’ physical and mental functions, and perceived control. Several instrument were used to measure caregiver burden, perceived control, physical and mental health, depression and morbidity.

Results

One hundred fifty-five partners were included. There were no significant differences in any index of caregiver burden or morbidity among the partners in the intervention and control groups after 24 months. Overall, the mean total caregiver burden was found to be significantly increased compared to baseline (36 ± 12 vs 38 ± 14, p < 0.05). A younger partner, less comorbidity, higher levels of perceived control, better physical health and less symptoms of depression in patients, and better mental health in the partners were factors associated with absence of increased caregiver burden over time.

Discussion and conclusion

Our intervention did not significantly decrease caregiver burden or morbidity. Over time, several aspects of burden increased in both groups. To improve outcomes, individualized and targeted interventions might be beneficial.

Place, publisher, year, edition, pages
Dordrecht: Springer Netherlands, 2017
Keywords
Heart failure, Partner, Intervention, Caregiver, Caregiver burden, Perceived control
National Category
Nursing Physiotherapy General Practice Psychiatry Geriatrics
Identifiers
urn:nbn:se:liu:diva-133178 (URN)10.1007/s11136-016-1400-9 (DOI)000394145600013 ()27631892 (PubMedID)2-s2.0-84986309447 (Scopus ID)
Note

Funding agencies: Swedish Institute for Health Sciences

Available from: 2016-12-13 Created: 2016-12-13 Last updated: 2018-04-18Bibliographically approved
3. Perceived caring needs in patient-partner dyads affected by heart failure: A qualitative study.
Open this publication in new window or tab >>Perceived caring needs in patient-partner dyads affected by heart failure: A qualitative study.
2014 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 23, no 19-20, p. 2928-2938Article in journal (Refereed) Published
Abstract [en]

AIMS AND OBJECTIVES: To explore the perceived caring needs in patient-partner dyads affected by heart failure to develop an understanding of potential areas of support.

BACKGROUND: Being affected by heart failure has a great impact on both the patient and the partner but until now contemporary care has remained patient focused.

DESIGN: A qualitative study design was used.

METHODS: Eight focus group interviews were performed, which included nineteen patients diagnosed with heart failure and their cohabiting partner. Patients were aged between 55-89 years and partners' ages ranged from 48-87 years. Data were analysed using qualitative content analyses.

RESULTS: The dyads perceived that caring needs could be summarised in two themes 'Dyads perceive a need for continuous guidance through the different phases of the illness trajectory' and 'Dyads perceive a need to share burden and support with each other and others'. The dyads described a need to learn more about heart failure to be able to manage everyday life. Regular outpatient clinic visits and access to telephone support were vital, and having someone who cared about the well-being of the partners was perceived as comforting. Both the patient and the partner need to be present at the clinic visits. Receiving the same information and being able to ask questions reduce insecurity. Meeting others in the same situation and sharing the burden in group sessions were proposed as an opportunity to support each other and others.

CONCLUSIONS: There is a need to improve education and support for patient-partner dyads affected by heart failure.

RELEVANCE TO CLINICAL PRACTICE: The result shows the importance to provide continuous healthcare contacts throughout the illness trajectory. Furthermore, partners should be included at follow-up, and support groups should be organised so that dyads can meet and support each other.

Place, publisher, year, edition, pages
Wiley-Blackwell, 2014
Keywords
heart failure, family, partner, focus groups, qualitative study, psychosocial nursing
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-107727 (URN)10.1111/jocn.12588 (DOI)000343857700023 ()24698101 (PubMedID)
Available from: 2014-06-19 Created: 2014-06-19 Last updated: 2017-12-05

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