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Living with heart failure: effects of an educational programme on patients and family members
Sophiahemmet University.ORCID iD: 0000-0002-1163-0054
2011 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Chronic heart failure (CHF) is a syndrome with various underlying causes and when an individual is diagnosed with CHF it affects daily life of both him/her and family members. An educational programme may have the capability to increase the knowledge and understanding of family members and improve their possibility to support the patient with CHF. In paper I the aim was to investigate perceived loneliness and social support in 149 patients with CHF and whether there was an association with gender, age, health care utilization and mortality. Loneliness was reported by 20% of the patients, who were younger and more often women. Those who perceived loneliness had fewer social contacts and emotional contacts and were less satisfied with close relationships and available social contacts. Despite not having more severe CHF, those feeling loneliness had more days in hospital and more readmissions during 12 months. In paper II and III 128 family members of patients with CHF were randomly assigned to an intervention group (IG) who received a multi-professional educational programme or to a control group (CG) receiving routine ward information. Family members filled in questionnaires three times during one year. Aim of paper II was to investigate if diseaserelated knowledge increased in family members through the educational programme and if there was an effect on healthcare utilization of the patient with CHF. Findings showed that disease-specific knowledge increased significantly in both groups from baseline and at second measurement and remained at third measurement. Family members in the IG had significantly higher knowledge at second and third measurement compared to family members in the CG. Frequency of readmission or number of days hospitalised during 18 months did not differ between the groups. In paper III the primary aim was to investigate if quality of life (QoL), anxiety and depression were affected in family members after attending an educational programme. The secondary aim was to investigate the impact of social support, family and patient related variables and sense of coherence on changes in QoL, anxiety and depression during the study period. Findings showed no significant differences in QoL, anxiety and depression between IG and CG due to the education. Adequacy of social network and baseline measurement of anxiety and depression predicted anxiety and depression at third measurement. Baseline measurement of QoL and family member‘s age were predictors for QoL at third measurement. Younger family members had higher QoL. In paper IV the aim was to describe family members’ experiences of attending an educational programme. Eleven family members were interviewed. Three main categories emerged: “making the disease comprehensible” deals with increased knowledge among family members and thereby attaining greater understanding of the person with CHF; “increasing involvement” comprises family members’ self-confidence and ability to become a resource for the ill person; “influencing family members’ wellness” deals with the positive experience of meeting others in the same situation and the importance of taking care of themselves. Several of the family members would have preferred to attend the education with the person with CHF. In conclusion Perceived loneliness in patients with CHF was most common among women and younger persons, and was associated with health care utilization, social network and support. The implemented educational programme for family members of patients with CHF seemed to have a subjectively experienced positive effect. The family members had increased knowledge, confidence and understanding of the disease, which made it easier for them to support the patient in their self-care management. The educational programme did not affect levels of QoL, anxiety and depression in family members nor health care utilization of the patients

Place, publisher, year, edition, pages
Stockholm: Karolinska Institutet , 2011. , 48 p.
Keyword [en]
Chronic heart failure, Social support, Educational programme, Family members
National Category
Nursing
Identifiers
URN: urn:nbn:se:shh:diva-891ISBN: 978-91-7457-417-3 (print)OAI: oai:DiVA.org:shh-891DiVA: diva2:455899
Public defence
2011-10-21, Erforssalen, Sophiahemmet Högskola, Valhallavägen 91, Stockholm, 09:00
Opponent
Supervisors
Available from: 2011-11-14 Created: 2011-11-11 Last updated: 2016-06-09Bibliographically approved
List of papers
1. Perceived loneliness and social support in patients with chronic heart failure
Open this publication in new window or tab >>Perceived loneliness and social support in patients with chronic heart failure
2009 (English)In: European Journal of Cardiovascular Nursing : Journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology, ISSN 1873-1953, Vol. 8, no 4, 251-8 p.Article in journal (Refereed) Published
Abstract [en]

Self-reported conditions have become increasingly important in patient care, and perceived loneliness and social relationships in patients with chronic heart failure (CHF) are not sufficiently investigated. AIM: The aim was to investigate perceived loneliness and social support in patients with CHF. Further, to investigate whether loneliness and social support might be associated with gender, age, healthcare utilization and mortality. METHODS: One hundred and forty nine patients with CHF, hospitalised at least once during a 4-month period in 2006, completed a self-reported questionnaire including measurements about loneliness and social support. Healthcare utilization was assessed prospectively by frequency of readmissions and number of days hospitalised during 1 year. RESULTS: Loneliness was reported by 29 (20%) participants. They were more often women (p<0.001) and younger (p=0.024). Patients who perceived loneliness had fewer social contacts (p=0.033), reported lower occurrence of emotional contacts (p=0.004), were less satisfied with social contacts and close relationships (p<0.001). Those reporting loneliness had more days hospitalised (p=0.044), and more readmissions to hospital (p=0.027), despite not having more severe CHF. CONCLUSION: Loneliness is a health-related risk indicator in that patients with CHF who perceived loneliness have more healthcare utilization than those who do not report loneliness despite not having more severe CHF.

National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-68 (URN)10.1016/j.ejcnurse.2009.05.001 (DOI)19539533 (PubMedID)
Available from: 2010-03-03 Created: 2010-02-23 Last updated: 2014-10-20Bibliographically approved
2. A group-based multi-professional education programme for family members of patients with chronic heart failure: effects on knowledge and patients' health care utilization
Open this publication in new window or tab >>A group-based multi-professional education programme for family members of patients with chronic heart failure: effects on knowledge and patients' health care utilization
Show others...
2011 (English)In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 85, no 2, e162-8 p.Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: The aim was to investigate if family members of patients with chronic heart failure (CHF) increased knowledge about CHF through a group-based multi-professional educational programme and whether there was an effect on patients' health care utilization. METHODS: Family members (n=128) were randomly assigned to intervention-group (IG) who received CHF education programme or control-group (CG) who received information according to hospital routines. Programme effects were evaluated with CHF knowledge questionnaire, patient readmissions and number of days hospitalised during 18 months. RESULTS: Knowledge about CHF increased in both groups, significantly higher in IG at second assessment (IG 16±1.9 vs. CG 14.9±2.1, p=0.006), and knowledge maintained at third assessment. In IG 17 patients were re-admitted at least once and 28 patients in CG due to CHF (p=0.085). There were no differences in frequency of readmissions or number of days hospitalised. CONCLUSION: A group-based multi-professional education programme increased family members' knowledge about CHF. Despite this, effect on patient's health care utilization could not be seen during follow-up period. PRACTICAL IMPLICATIONS: We suggest that CHF education programmes for family members should be provided at clinics, with information preferably repeated 2-3 times during a period of six months to maintain knowledge level.

Keyword
Heart failure, Family members, Multi-professional education programme, Health care utilization
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-319 (URN)10.1016/j.pec.2010.09.026 (DOI)21050694 (PubMedID)
Available from: 2011-03-01 Created: 2011-03-01 Last updated: 2014-10-20Bibliographically approved
3. Evaluation of an educational programme for family members of patients living with heart failure: a randomised controlled trial
Open this publication in new window or tab >>Evaluation of an educational programme for family members of patients living with heart failure: a randomised controlled trial
Show others...
2013 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 22, no 1-2, 115-126 p.Article in journal (Refereed) Published
Abstract [en]

Aims and objectives.  To evaluate the effect of a group-based multi-professional educational programme for family members of patients with chronic heart failure with regard to quality of life, depression and anxiety. The secondary aim was to investigate the impact of social support and sense of coherence on changes in quality of life, anxiety and depression during the period of the study. Background.  When a person is diagnosed with heart failure, the daily life of the family members is also affected. Design.  Randomised controlled trial. Methods.  A total of 128 family members were randomly assigned to participate in a multi-professional educational programme or a control group. Analysis of variance and regression analysis were used. Results.  There were no significant differences in anxiety, depression or quality of life between the intervention group and control group. Adequacy of social network was the only independent variable that explained levels of anxiety and depression after 12 months beyond baseline levels of anxiety (p < 0·001, R(2)  = 0·35) and depression (p = 0·021, R(2)  = 0·37). Younger family members were found to have a higher quality of life (p < 0·01). Conclusion.  Improved disease-related knowledge may need to be combined with other target variables to induce desired effects on depression, anxiety and quality of life of family members. Antecedents of depression and anxiety, such as sense of control, may need to be specifically targeted. Our results also suggest that intervention aimed at enhancing social support may be beneficial for family members. Relevance to clinical practice.  Anxiety and depression did not decrease nor did quality of life improve after the intervention. An educational programme for family members with a component specifically targeting anxiety, depression and quality of life warrants testing. Furthermore, it is important that health care providers understand the influence of social support on anxiety, depression and quality of life when interacting with family members.

Keyword
Anxiety and depression, Chronic heart failure, Education programme, Family members, Quality of life
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-889 (URN)10.1111/j.1365-2702.2012.04201.x (DOI)22946864 (PubMedID)
Available from: 2011-11-11 Created: 2011-11-11 Last updated: 2014-10-20Bibliographically approved
4. Family members' experience of a group-based multi-professional educational programme about chronic heart failure
Open this publication in new window or tab >>Family members' experience of a group-based multi-professional educational programme about chronic heart failure
2015 (English)In: Clinical Nursing Studies, ISSN 2324-7940 (Print) 2324-7959 (ESSN), Vol. 3, no 3, 9-16 p.Article in journal (Refereed) Published
Abstract [en]

Objective: The aim was to evaluate how family members of persons with chronic heart failure (CHF) experienced a group-based multi-professional educational programme.Methods: Family members who participated in an educational programme filled in an evaluation form directly after completing the programme (n = 53). One year after the completed programme family members (n = 11) who participated in 5-6 of six sessions were interviewed about their experience. The interviews were analysed by qualitative content analysis. Results: The evaluation form showed that most family members reported satisfaction with session structure and content, but a majority would have preferred to share the education together with the ill person. Interview findings are presented in three categories and eight subcategories identified through the analysis. Results showed that family members’ increased knowledge about heart failure and thereby attained a greater understanding of the ill person’s situation with an increased tolerance. Furthermore the family members acquired a better self-confidence and became a resource for the ill person and they described that they were more actively involved in the ill person’s self-care. Family members experienced it positive to meet others in the same situation. They also gained an insight into the importance of taking care of their own health. Conclusions: The educational programme produced valuable knowledge and understanding about heart failure among family members. With this newly acquired knowledge, family members had the possibility of working out appropriate support for the ill person. Being part of a group with others in the same situation was a positive experience.

Keyword
Heart failure, Multi-professional, Educational programme, Family members
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-890 (URN)10.5430/cns.v3n3p9 (DOI)
Available from: 2011-11-11 Created: 2011-11-11 Last updated: 2015-04-08Bibliographically approved

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