ObjectiveTo assess the experiences of unpaid caregivers providing care to people with heart failure (HF) or chronic obstructive pulmonary disease (COPD) or coronary artery disease (CAD).Design Mixed methods systematic review including qualitative and quantitative studies.Data sources Databases searched: Medline Ebsco, PsycInfo, CINAHL Plus with Full Text, Embase, Web of Science, Ethos: The British Library and ProQuest. Grey literature identified using: Global Dissertations and Theses and Applied Sciences Index and hand searches and citation checking of included references. Search time frame: 1 January 1990 to 30 August 2017.Eligibility criteria for selecting studiesInclusion was limited to English language studies in unpaid adult caregivers (>18 years), providing care for patients with HF, COPD or CAD. Studies that considered caregivers for any other diagnoses and studies undertaken in low-income and middle-income countries were excluded. Quality assessment of included studies was conducted by two authors.Data analysis/synthesisA results-based convergent synthesis was conducted.ResultsSearches returned 8026 titles and abstracts. 54 studies—21 qualitative, 32 quantitative and 1 mixed method were included. This totalled 26 453 caregivers who were primarily female (63%), with median age of 62 years. Narrative synthesis yielded six concepts related to caregiver experience: (1) mental health, (2) caregiver role, (3) lifestyle change, (4) support for caregivers, (5) knowledge and (6) relationships. There was a discordance between paradigms regarding emerging concepts. Four concepts emerged from qualitative papers which were not present in quantitative papers: (1) expert by experience, (2) vigilance, (3) shared care and (4) time.ConclusionCaregiving is life altering and complex with significant health implications. Health professionals should support caregivers who in turn can facilitate the recipient to manage their long-term condition. Further longitudinal research exploring the evolution of caregiver experiences over time of patients with chronic cardiopulmonary conditions is required.Trial registration numberCRD42016053412

Background: Caregivers frequently provide support to people living with long-term conditions. However, there is paucity of evidence of interventions that support caregivers in their role. Rehabilitation EnAblement in Chronic Heart Failure (REACH-HF) is a novel home-based, health-professional-facilitated, self-management programme for patients with heart failure (HF) and their caregivers. Methods: Based on the random allocation of individual adult patients with reduced ejection fraction (HFrEF) and left ventricular ejection fraction <45% within the past five years, the caregiver of patients was allocated to receive the REACH-HF intervention over 12 weeks (REACH-HF group) or not (control group). Caregiver outcomes were generic health-related quality of life (EQ-5D-5L), Family Caregiver Quality of Life Scale questionnaire (FamQol), Caregiver Burden Questionnaire HF (CBQ-HF), Caregiver Contribution to Self-care of HF Index questionnaire (CC-SCHFI) and Hospital Anxiety and Depression Scale (HADS). Outcomes were compared between groups at 4, 6 and 12 months follow-up. Twenty caregivers receiving REACH-HF were purposively selected for qualitative interviews at 4 and 12 months. Results: Compared with controls (44 caregivers), the REACH-HF group (53 caregivers) had a higher mean CC-SCHFI confidence score at 12 months (57.5 vs 62.8, adjusted mean difference: 9.3, 95% confidence interval: 1.8–16.8, p = 0.016). No significant between group differences were seen in other caregiver outcomes. Qualitative interviews showed that most caregivers who received the REACH-HF intervention made positive changes to how they supported the HF patient they were caring for, and perceived that they had increased their confidence in the caregiver role over time. Conclusion: Provision of the REACH-HF intervention for caregivers of HF patients improved their confidence of self-management and was perceived for some to be helpful in supporting their caregiver role.

Aim To quantify the impact of involving caregivers in self‐management interventions on health‐related quality of life of patients with heart failure or chronic obstructive pulmonary disease. Design Systematic review, meta‐analysis. Data sources Searched: Medline Ebsco, PsycINFO, CINAHL, Embase, Web of Science, The British Library and ProQuest. Search time frame; January 1990–March 2018. Review Methods Randomized controlled trials involving caregivers in self‐management interventions (≥2 components) compared with usual care for patients with heart failure or chronic obstructive pulmonary disease. A matched sample based on publication year, geographic location and inclusion of an exercise intervention of studies not involving caregivers were identified. Primary outcome of analysis was patient health‐related quality of life. Results Thirteen randomized controlled trials (1,701 participants: 1,439 heart failure; 262 chronic obstructive pulmonary disease) involving caregivers (mean age 59; 58% female) were identified. Reported patient health‐related quality of life measures included; Minnesota Living with Heart Failure questionnaire, St. George's respiratory questionnaire and Short‐Form‐36. Compared with usual care, there was similar magnitude in mean improvement in patient health‐related quality of life with self‐management interventions in trials involving caregivers (SMD: 0.23, 95% confidence interval: −0.15–0.61) compared with trials without caregivers (SMD: 0.27, 0.08–0.46). Conclusion Within the methodological constraints of this study, our results indicate that involving caregivers in self‐management interventions does not result in additional improvement in patient health‐related quality of life in heart failure or chronic obstructive pulmonary disease. However, involvement of caregivers in intervention delivery remains an important consideration and key area of research. Impact Greater understanding and awareness is needed of the methodology of caregiver engagement in intervention development and delivery and its impact on patient outcomes.