Informal carers' experiences of caring for a person with heart failure in a community setting

Abstract

Heart failure (HF) is a life‐limiting condition with a poor prognosis and unpredictable disease trajectory. HF brings physical and emotional challenges for patients and their carers. Predominantly the informal carer population consists of older females, however, caring is evolving as longevity increases and complex conditions are becoming more commonplace. Consequently, more men and younger people are contributing to daily care. The aim of this study was to explore the positive as well as negative dimensions of caring in HF across a range of carer characteristics. Fourteen semi‐structured interviews were conducted with informal carers of people with HF in the UK (median age 71; female 10). Interviews were transcribed verbatim and analysed with the assistance of NVivo10 using Interpretative Phenomenological Analysis. Findings from the study demonstrated that most participants considered caring as integral to their relationships. Dimensions facilitating positivity in caring included compassion, thoughtfulness and understanding. An ability to cope was influenced by a range of attributes including quality of relationships in the carer/patient dyad and with formal social care providers who offered access to tailored and timely information and support. The unpredictable HF disease trajectory influenced the carer experience and enhanced the challenges encountered. The information needs of carers were not always adequately met and younger adult carers expressed particular difficulties with appropriate information and support. Expectations of our informal carer population are increasing and evolving. Health and social care policy requires innovative proposals for the funding and delivery of health and social care that has the contribution made by informal carers at its core.

Quality of life and disease experience in patients with heart failure with reduced ejection fraction in Spain: a mixed-methods study

“…25 In this regard, numerous recent studies have highlighted challenges experienced by caregivers of patients with HF. [37][38][39][40] Some initiatives along these lines, such caregiver-specific QoL questionnaires, 41 and video coaching, 42 43 are currently being developed and tested.…”

“…In any case, these results suggest that instruments should be developed to help caregivers in their daily work with patients with HF, so that they are better informed on the course of the disease and expectations 25. In this regard, numerous recent studies have highlighted challenges experienced by caregivers of patients with HF 37–40. Some initiatives along these lines, such caregiver-specific QoL questionnaires,41 and video coaching,42 43 are currently being developed and tested.…”

Heart Failure Family Caregivers’ Perspectives of Physical Activity Engagement: A Qualitative Study

“…Similarly, other studies have found that FCGs-HF neglect their health needs since the caregiving role affects them physically and mentally and affects their ability to plan physical activities. 29 Moreover, if FCGs of persons with heart failure do not have an established level of selfefficacy based on a history of PA, positive beliefs of competence, or a strong motivation for PA, then lack of self-efficacy could be a barrier to engaging in PA. 30 This study has limitations and strengths that need to be mentioned. First, recruiting participants at a single academic medical center with a convenience sample of predominately female, white, and non-Hispanic FCGs limits generalizability.…”

“…Similarly, other studies have found that FCGs-HF neglect their health needs since the caregiving role affects them physically and mentally and affects their ability to plan physical activities. 29 Moreover, if FCGs of persons with heart failure do not have an established level of self-efficacy based on a history of PA, positive beliefs of competence, or a strong motivation for PA, then lack of self-efficacy could be a barrier to engaging in PA. 30…”

Who cares for the carer? Codesigning a carer health and wellbeing clinic for older care partners of older people in Australia

“… 1 Both terms are used interchangeably throughout this paper. While some positive aspects of providing care have been reported by care partners, including a sense of giving back or reciprocity (e.g., in the case of caring for a parent), and as a continued part of a loving relationship (where this was the relationship status before commencing the carer role) 1 , 2 , 3 providing care can have detrimental effects on the health and well‐being of care partners including emotional stress, physical strain, exhaustion, and loneliness. 4 , 5 , 6 These negative consequences of the caregiving role can lead to reduced focus on the care partner's own health, and increased risk of negative health outcomes, such as depression and anxiety.…”