Caregiving experiences of older family caregivers of persons with heart failure: A mixed methods study

Baik, Dawon; McIlvennan, Colleen K; Baker, Christina Wood; Coats, Heather

doi:10.1016/j.gerinurse.2022.08.015

Cited by 9 publications

(8 citation statements)

References 35 publications

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“…Based on similar studies [ 22 , 23 ], we expected data saturation [ 24 ] after enrollment of 20–30 patients. Participants received $50 total for study completion, which aligns with other heart failure and LVAD studies [ 25 , 26 ].…”

Section: Methodsmentioning

confidence: 99%

“When I do have some time, rather than spend it polishing silver, I want to spend it with my grandkids”: a qualitative exploration of patient values following left ventricular assist device implantation

Bechthold,

McIlvennan,

Matlock

et al. 2024

BMC Palliat Care

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Background Values are broadly understood to have implications for how individuals make decisions and cope with serious illness stressors, yet it remains uncertain how patients and their family and friend caregivers discuss, reflect upon, and act on their values in the post-left ventricular assist device (LVAD) implantation context. This study aimed to explore the values elicitation experiences of patients with an LVAD in the post-implantation period. Methods Qualitative descriptive study of LVAD recipients. Socio-demographics and patient resource use were analyzed using descriptive statistics and semi-structured interview data using thematic analysis. Adult (> 18 years) patients with an LVAD receiving care at an outpatient clinic in the Southeastern United States. Results Interviewed patients (n = 27) were 30–76 years, 59% male, 67% non-Hispanic Black, 70% married/living with a partner, and 70% urban-dwelling. Three broad themes of patient values elicitation experiences emerged: 1) LVAD implantation prompts deep reflection about life and what is important, 2) patient values are communicated in various circumstances to convey personal goals and priorities to caregivers and clinicians, and 3) patients leverage their values for strength and guidance in navigating life post-LVAD implantation. LVAD implantation was an impactful experience often leading to reevaluation of patients’ values; these values became instrumental to making health decisions and coping with stressors during the post-LVAD implantation period. Patient values arose within broad, informal exchanges and focused, decision-making conversations with their caregiver and the healthcare team. Conclusions Clinicians should consider assessing the values of patients post-implantation to facilitate shared understanding of their goals/priorities and identify potential changes in their coping.

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Section: Methodsmentioning

confidence: 99%

“When I do have some time, rather than spend it polishing silver, I want to spend it with my grandkids”: a qualitative exploration of patient values following left ventricular assist device implantation

Bechthold,

McIlvennan,

Matlock

et al. 2024

BMC Palliat Care

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“…77 Caregivers also reported providing health maintenance behaviors (eg, activities of daily living [ADLs]), which do not appear in self-care maintenance activities 7 such as "providing personal care such as toileting, dressing, bathing" and "basic self-care activities" 29,32,64,78 In keeping with the 2015 synthesis, caregivers' activities continued to fall into the 2 categories of "hands-on" and "hands-off" activities. Although few articles reported "hands-on" self-care maintenance activities, such as caregivers directly administering medications (n = 5/58, 9%), all articles reported "hands-off"' maintenance activities, India (2) 36,41 Iran (4) 14,27,58,63 Italy (3) 15,25,51 Jordan (1) 13 Lithuania (1) 11 Norway (3) 11,42,61 Portugal (1) 54 Slovenia (1) 57 South Korea (1) 33 Sweden (3) 16,30,49 United Kingdom (7) Not specified (1) 38 Australia (1) 24 Japan (1) 32 Sweden (1) 43 United States (4) 22,52,60,67 Sweden (1) 72 United Kingdom (1) 74 United States (5) [68][69][70][71]73 Sample size (range of no. of participants) Mother/father (5) 11,21,…”

Section: Study Characteristicsmentioning

confidence: 99%

“…Although few articles reported "hands-on" self-care maintenance activities, such as caregivers directly administering medications (n = 5/58, 9%), all articles reported "hands-off"' maintenance activities, India (2) 36,41 Iran (4) 14,27,58,63 Italy (3) 15,25,51 Jordan (1) 13 Lithuania (1) 11 Norway (3) 11,42,61 Portugal (1) 54 Slovenia (1) 57 South Korea (1) 33 Sweden (3) 16,30,49 United Kingdom (7) Not specified (1) 38 Australia (1) 24 Japan (1) 32 Sweden (1) 43 United States (4) 22,52,60,67 Sweden (1) 72 United Kingdom (1) 74 United States (5) [68][69][70][71]73 Sample size (range of no. of participants) Mother/father (5) 11,21,26,39,53 Sibling (4) 21,38,44,53 Grandchildren (5) 35,46,48,…”

Section: Study Characteristicsmentioning

confidence: 99%

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Caregivers' Contributions to Heart Failure Self-care

Buck,

Howland,

Stawnychy

et al. 2024

J Cardiovasc Nurs

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Background A previous systematic review reporting the contributions of informal, unpaid caregivers to patient heart failure (HF) self-care requires updating to better inform research, practice, and policy. Objective The aim of this study was to provide an updated review answering the questions: (1) What specific activities do informal caregivers of adults with HF take part in related to HF self-care? (2) Have the activities that informal caregivers of adults with HF take part in related to HF self-care changed over time? (3) What are the gaps in the science? Methods This review followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. PubMed, CINAHL, EMBASE, and Cochrane CENTRAL databases were searched. Eligible studies involved an informal, unpaid caregiver of an adult with HF as a study variable or participant. Caregiving activities were benchmarked using the theory of self-care in chronic illness. Results Two thousand one hundred fifty-four research reports were identified, of which 64 met criteria. Caregivers' contributions occurred in self-care maintenance (91%), monitoring (54%), and management (46%). Activities performed directly on or to the patient were reported more frequently than activities performed for the patient. Change over time involved the 3 domains differentially. Gaps include ambiguous self-care activity descriptions, inadequate caregiving time quantification, and underrepresented self-care monitoring, supportive, and communication activities. Conclusions Newly identified caregiver-reported activities support updating the theory of self-care in chronic illness to include activities currently considered ancillary to HF self-care. Identified gaps highlight the need to define specific caregiving activities, determine task difficulty and burden, and identify caregiver self-care strategy and education needs. Exposing the hidden work of caregiving is essential to inform policy and practice.

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“…Even if evidence confirming the benefits to the patient of having a caregiver, the caregivers tend to experience great physical and emotional turmoil which affects their daily living [8]. The caregiver's load produces various repercussions, which can lead to the onset of sleep disorders, depression, anxiety, asthenia, gastrointestinal disorders, headaches, and even compromise the functioning of some aspects of daily life, such as personal space, role work, relationships, and family dynamics [9].…”

Section: Introductionmentioning

confidence: 99%

Burden among informal caregivers of individuals with heart failure: A mixed methods study

Durante,

Younas,

Cuoco

et al. 2023

PLoS ONE

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Aims To develop a comprehensive understanding of caregiver burden and its predictors from a dyadic perspective. Method A convergent mixed methods design was used. This study was conducted in three European countries, Italy, Spain, and the Netherlands. A sample of 229 HF patients and caregivers was enrolled between February 2017 and December 2018 from the internal medicine ward, outpatient clinic, and private cardiologist medical office. In total, 184 dyads completed validated scales to measure burden, and 50 caregivers participated in semi-structured interviews to better understand the caregiver experience. The Care Dependency Scale, Montreal Cognitive Assessment, and SF-8 Health Survey were used for data collection. Multiple regression analysis was conducted to identify the predictors and qualitative content analysis was performed on qualitative data. The results were merged using joint displays. Results Caregiver burden was predicted by the patient’s worse cognitive impairment, lower physical quality of life, and a higher care dependency perceived by the caregivers. The qualitative and mixed analysis demonstrated that caregiver burden has a physical, emotional, and social nature. Conclusions Caregiver burden can affect the capability of informal caregivers to support and care for their relatives with heart failure. Developing and evaluating individual and community-based strategies to address caregiver burden and enhance their quality of life are warranted.

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Caregiving experiences of older family caregivers of persons with heart failure: A mixed methods study

Cited by 9 publications

References 35 publications

“When I do have some time, rather than spend it polishing silver, I want to spend it with my grandkids”: a qualitative exploration of patient values following left ventricular assist device implantation

“When I do have some time, rather than spend it polishing silver, I want to spend it with my grandkids”: a qualitative exploration of patient values following left ventricular assist device implantation

Caregivers' Contributions to Heart Failure Self-care

Burden among informal caregivers of individuals with heart failure: A mixed methods study

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