Lived experiences of family caregivers of those with advanced illnesses: A secondary qualitative data analysis

More than half of intensive care unit survivors require assistance from family caregivers after discharge. Caregiving is associated with negative consequences including poor health-related quality of life, psychosocial distress, and burden. Little is known about how family caregivers find satisfaction and meaning in their experience. To explore positive descriptions of the experiences of family caregivers of critically ill patients and to describe factors that family caregivers view as important to a positive caregiving experience from hospitalization to 4 months after discharge. Qualitative secondary analysis was performed on data from semistructured interviews conducted as part of a longitudinal study that examined physical and psychological responses to stress in a convenience sample of family caregivers of adult intensive care unit patients who underwent prolonged mechanical ventilation (≥ 4 days). Interviews were conducted at 4 time points: during the hospitalization and within 2 weeks, 2 months, and 4 months after discharge. Participants (n = 41) reported factors that helped them positively appraise their caregiving experience in 113 interviews conducted face to face or via telephone. During patients' hospitalization, caregivers described changes in their role, with their primary responsibility being to advocate for the patient. They described how this experience fulfilled their identity and strengthened their relationship with the patient. Most family caregivers mentioned the importance of social support and prayer. Family caregivers of intensive care unit patients can identify positive aspects of caregiving during the experience. Interventions to reframe the caregiving experience in a positive light are warranted.

Family caregiving is a crucial component of long-term care. Care provision provides opportunities for psychosocial gain but can also lead to burden among family caregivers in multiple domains – physical, psychological, social, and financial. Family caregiving is dynamic, with changes over time in the needs of care-recipients as well as care responsibilities and outcomes experienced by caregivers, yet longitudinal studies on caregiving contexts are scant. Longitudinal changes and trends in social support, financial well-being and service use, burden and benefits of caregiving, and spiritual resilience are essential to identify caregivers at-risk of detrimental changes over time. The four presentations in this symposium provide empirical findings from population-based longitudinal studies of family caregivers of older adults, most with three or more time points of data collection. The first investigates heterogeneity in perceived social support of family caregivers over time and explores the role of caregiver psychological resilience in reshaping the trajectories. The second examines longitudinal trends in financial difficulties and income among family caregivers and their impact on supportive care service utilization. The third discusses joint trajectories of the burden and benefits of caregiving over time and highlights modifiable factors in the process. The fourth unravels the paradox wherein family caregivers simultaneously experience both high burden and benefits of caregiving. Collectively, the presentations underscore the heterogeneous and dynamic nature of family caregiving and contexts over time. They also highlight the need to strengthen caregivers’ psychological resilience, financial capacity, preparedness for caregiving and spiritual beliefs to enhance their caregiving experience.

Dynamics of informal BMT caregiving

Evidence supports palliative care effectiveness. Given workforce constraints and the costs of new services, payers and providers need help to prioritize their investments. They need to know which patients to target, which personnel to hire, and which services best improve outcomes. To inform how payers and providers should identify patients with "advanced illness" and the specific interventions they should implement, we reviewed the evidence to identify (1) individuals appropriate for palliative care and (2) elements of health service interventions (personnel involved, use of multidisciplinary teams, and settings of care) effective in achieving better outcomes for patients, caregivers, and the healthcare system. Systematic searches of MEDLINE, EMBASE, PsycINFO, Web of Science, and Cochrane Database of Systematic Reviews databases (1/1/2001-1/8/2015). Randomized controlled trials (124) met inclusion criteria. The majority of studies in cancer (49%, 38 of 77 studies) demonstrated statistically significant patient or caregiver outcomes (e.g., p < 0.05), as did those in congestive heart failure (CHF) (62%, 13 of 21), chronic obstructive pulmonary disease (COPD; 58%, 11 of 19), and dementia (60%, 15 of 25). Most prognostic criteria used clinicians' judgment (73%, 22 of 30). Most interventions included a nurse (70%, 69 of 98), and many were nurse-only (39%, 27 of 69). Social workers were well represented, and home-based approaches were common (56%, 70 of 124). Home interventions with visits were more effective than those without (64%, 28 of 44; vs. 46%, 12 of 26). Interventions improved communication and care planning (70%, 12 of 18), psychosocial health (36%, 12 of 33, for depressive symptoms; 41%, 9 of 22, for anxiety), and patient (40%, 8 of 20) and caregiver experiences (63%, 5 of 8). Many interventions reduced hospital use (65%, 11 of 17), but most other economic outcomes, including costs, were poorly characterized. Palliative care teams did not reliably lower healthcare costs (20%, 2 of 10). Palliative care improves cancer, CHF, COPD, and dementia outcomes. Effective models include nurses, social workers, and home-based components, and a focus on communication, psychosocial support, and the patient or caregiver experience. High-quality research on intervention costs and cost outcomes in palliative care is limited.

Family caregivers (FCs) of people with mental illness (PMI) experience caregiving-related distress. These challenges tend to be greater for Asian American families due to acculturative stress and structural barriers to services. However, little is known about caregiving-related experiences among FCs of PMI within a cultural context. By using an exploratory approach, we examined the experience of caregiver distress and the influence of cultural values on caregiving in European American and Chinese American FCs. In collaboration with community-based agencies, a combination of convenience and snowball sampling methods were used to recruit Chinese American and European American caregivers who co-reside with PMIs. Two focus groups with each ethnic group with 57 participants (30 Chinese and 27 European American) were conducted. Thematic analysis indicates that FCs experience intense emotions, health/mental health problems, and a negative impact on their personal/social lives. Whereas Chinese American FCs reported shame, lack of knowledge, and over-protectiveness of PMIs, European American FCs reported the need for advocacy on behalf of the PMI. Findings indicate a need for: 1) greater awareness of the caregiving experience on wellbeing of FCs; 2) an understanding of how cultural values may influence caregiver experience; and 3) developing culturally relevant prevention and intervention services that can support FCs from diverse cultural contexts.

Introduction: Attending to caregiving experiences of family caregivers of stroke survivors is important in person-centered stroke rehabilitation. This study explored caregiving appraisals by family caregivers of stroke survivors in Nigeria. Methods: A cross-sectional survey of family caregivers’ negative and positive appraisals of caregiving was conducted using the 24-item 4-domain revised Caregiving Appraisal Scale (rCAS). Mann Whitney U and Kruskal-Wallis tests were used to identify differences in caregiving appraisals based on specific caregiver and stroke survivor variables. Results: Seventy-three caregiver and care recipient dyads participated in the study. Mean age of the caregivers was 31.51 (9.82) years. From a score of 5, and higher scores depicting higher appraisal, mean (SD) score for caregiving satisfaction and caregiving mastery (positive appraisal domains) was 4.23 (0.97) and 4.04 (0.92) respectively while 2.29 (0.98) and 2.11 (0.93) were respectively recorded for caregiving burden and environmental impact (negative appraisal). Caregivers’ gender, age, and employment status resulted in significantly different appraisals with female caregivers having higher caregiving mastery (U = 446, P<0.05), caregiving satisfaction (U = 384.5, P<0.01), and also caregiving burden (U = 382.5, P<0.01) compared to their male counterparts; while older (U = 330; P<0.05) and employed (U = 437.5, P<0.05) family caregivers reported higher caregiving satisfaction and burden respectively than younger and unemployed family caregivers. Conclusion: Given the comparatively higher positive caregiving appraisal, and the documented benefits of positive caregiving appraisal, efforts should be geared towards identifying effective means of reinforcing positive appraisal, and reducing negative stroke caregiving appraisal, especially for female, older and employed family caregivers.

Purpose This study explored the experiences of patients, caregivers, healthcare providers, and health service leaders of compassion in the care of people hospitalized with COVID-19. Materials and methods This study is a secondary analysis of qualitative data deriving from primary research data on recommendations for healthcare organizations providing care to people hospitalized with COVID-19. Participants comprised patients with COVID-19 (n = 10), family caregivers (n = 5) and HCPs in COVID-19 units (n = 12). Primary research data were analyzed deductively under the “lens” of compassion, as defined by Goetz. Results Four interacting themes were found: (1) COVID-19 – to care or not to care? The importance of feeling safe, (2) A lonely illness – suffering in isolation with COVID-19, (3) Compassionate care for people with COVID-19 across the hospital continuum, and (4) Sustaining compassionate care for people hospitalized with COVID-19 – healthcare provider compassion fatigue and burnout. Conclusions Compassionate care is not a given for people hospitalized with COVID-19. Healthcare providers must feel safe to provide care before responding compassionately. People hospitalized with COVID-19 experience additional suffering through isolation. Compassionate care for people hospitalized with COVID-19 is more readily identifiable in the rehabilitation setting. However, compassion fatigue and burnout in this context threaten healthcare sustainability. IMPLICATIONS FOR REHABILITATION Healthcare providers need to feel physically and psychologically safe to provide compassionate care for people hospitalized with COVID-19. People hospitalized with COVID-19 infection experience added suffering through the socially isolating effects of physical distancing. Compassion and virtuous behaviours displayed by healthcare providers are expected and valued by patients and caregivers, including during the COVID-19 pandemic. High levels of compassion fatigue and burnout threaten the sustainability of hospital-based care for people with COVID-19.

Considering the risk of spiritual distress among terminally ill patients, experts long agree that spiritual care has to be an integral component of palliative care. Despite this consensus, the role of spirituality among family caregivers remains largely unexplored. We aimed to describe how spirituality manifests in the lived experience of family caregivers (FCs) in a palliative care context. As part of a secondary analysis, data derived from two qualitative primary studies on FCs' burdens and needs in the context of caring for a patient with a diagnosis of incurable cancer. Previously transcribed interviews were examined by means of a thematic analysis, transcending the focus of the primary studies to examine how spirituality arises and/or persists in the life of FCs from the time of diagnosis of incurable cancer up until bereavement. Twenty-nine narratives were explored and all included spirituality as a relevant theme. Analysis revealed four aspects associated with the presence of spirituality among FCs' experiences: "Connectedness," "Religious Faith," "Transcendence," "Hope," and a fifth overarching aspect which we named "Ongoing integration of spiritual experience." Spirituality appeared as a multilayered phenomenon and was shaped individually among FCs' narratives. In view of the results, exploring and discussing spirituality and underlying experiences in the situation as an FC seems likely to widen the perspective on FCs' problems and needs. Further research on spiritual needs among FCs of patients with incurable life-limiting cancer is deemed necessary.

PC-FACS

Cancer is a significant public health issue, causing various challenges for individuals affected by it. As cancer progresses, patients often become dependent on others for support. Family caregivers and members play a crucial role in the recovery and rehabilitation of these patients. However, caregivers themselves face numerous challenges throughout the course of their family member's illness. Exploring the experiences of family caregivers can inform long-term planning and supportive interventions to address their caregiving difficulties. This study reviews previous literature on caregiving outcomes. This study presents a narrative review of qualitative studies, analyzing a total of 23 articles. The results were extracted and organized into subcategories. After revision by the research team, main categories were identified. These categories encompass both positive and negative outcomes of caregiving. The findings of this review demonstrate that caring for a family member with cancer has significant implications for caregivers. These implications include: (A) Positive outcomes of caregiving (such as achieving self-management and balance, promoting kinship intimacy, finding meaning and purpose, and experiencing spiritual growth) and (B) Negative outcomes of caregiving (including care-related physical exhaustion, disruption of personal life plans, psycho-emotional consequences, and socio-economic burden). The results of this study highlight the challenges faced by family caregivers and emphasize the importance of addressing their needs within the healthcare system. By providing support and attention to their well-being, caregivers can enhance their resilience and adaptability in managing caregiving difficulties.

Qualitative Secondary Data Analysis remains severely underutilized in Human Development and Family Sciences (HDFS). In this paper, we revisit the topic of qualitative secondary data analysis, exploring complications and possibilities. Major barriers to qualitative secondary data analysis are archiving data, availability of datasets, and knowledge and explicit models of qualitative data reanalysis. Foregrounding the importance of multilogicality, qualitative secondary data analysis moves away from linear, unidimensional, and restricted analyses and understandings. With exceptions, little published discussion exists about philosophical considerations and analytical tools that could be used for qualitative secondary data analysis within HDFS. In response to this deficit, we offer ideas and examples of qualitative secondary data analyses from our datasets. By reopening this can of words, we hope to (re) generate more discussion and encourage a greater number of HDFS scholars to archive their qualitative datasets and reuse existing qualitative datasets.

BackgroundFamily caregivers, mostly parents, are greatly involved in the care of their children with end stage kidney disease (ESKD) globally. Yet, the experiences of these caregivers and the demands placed on them by the caregiving role have not been explored or documented in Ghana. This study explored how caregiving affects the psychological, physical, social, and spiritual well-being of family caregivers of children with end stage kidney disease (ESKD) in Ghana.MethodsA phenomenological approach with the purposive sampling technique was used to gather data from 12 family caregivers of children with ESKD at a pediatric renal unit in Ghana. A semi-structured interview guide was constructed based on the constructs of the City of Hope Quality of Life (QoL) Family Caregiver Model and the research objectives. Colaizzi’s thematic analysis approach was utilized to analyze data for this study. Themes were organized under the domains of the chosen model, and a new theme outside these domains was also generated.ResultsThe majority of the family caregivers experienced anxiety, fear, uncertainty, and hopelessness in response to the children’s diagnosis and care. The thought of the possibility of the children dying was deeply traumatizing for our participants. Most participants reported bodily pains and physical ailments because of lifting and caring for the children. Financial constraint was also a key issue for all the family caregivers. Most of them received diverse support from their families and loved ones. Due to the demanding nature of the care, most family caregivers had to change or quit their jobs. They coped with the challenges through prayers, participating in religious activities, and being hopeful in God for healing.ConclusionAll the family caregivers had their psychological well-being compromised as a result of the challenges they encountered physically, socially, and spiritually. Continuous psychosocial support, funding support, and review of policies on leave for civil workers with children diagnosed with ESKD are urgently required.

Background: An estimated 8 million people in Canada are family caregivers and save the health care system over $31 billion annually 1. Yet, family caregivers are often referred to as “the silent partners” in care. Recognizing the importance of the family caregiving role and engaging families in decision-making and healthcare planning is an important aspect to improving care. St. Joseph’s Health Care London, a multi-site health care organization in Ontario, Canada aims to ensure patients and families are full partners in their care and in the design, measurement and improvement of care. Guided by St. Joseph’s Care Partnership Framework 2017, this project aims to improve family caregiver experiences and engagement through partnering with patients, families and health care providers in decision-making and health care planning. Methods: This project follows best practices for experience-based co-design 2 which includes three major steps. Step 1: a discovery phase to learn about current health care experiences. Focus groups and individual interviews were conducted with patients n=15, family caregivers n=73 and health care providers n=141. Ethnographic observations were also completed. Data were analyzed using line by line emergent coding techniques 3. Step 2: Experiences, represented in broad themes, were shared in co-design workshops involving health care providers, patients and family caregivers. Together, priorities were identified. Step 3: Working groups developed resources and strategies that were implemented to improve family experiences and engagement in decision-making. Qualitative e.g. interviews and quantitative measures e.g. experience measure were used to evaluate the work. Results: Several themes emerged from the discovery phase, including: the issue of time, caregiver involvement in care planning, the need for better communication, and better involvement in care transitions. These themes were discussed at a co-design event with patients and families. Resources were co-created including: a resources for better patient, family caregiver and provider communication following best practices for engagement; b tools to recognize and assess family caregivers; and c educational materials to provide community and self-management information to patients and families. Family caregiver and provider outcomes were positive following implementation. Discussion & Conclusions: New resources and care processes were implemented to improve family caregiver engagement and experiences. Patients and family caregivers were involved in all stages of this work, including patient and family caregiver representatives who worked directly with the project team and patient and family caregiver advisors who guided this work through a steering committee. Lessons Learned: Important insights about patient and family engagement emerged including: taking time to build a trusting relationship; involving families in every aspect of co-design and care planning; and engaging health care providers and leaders in education around the importance of family engagement. Limitations: This work is limited to two areas of the health care organization, geriatrics and rehabilitation. Learnings will be applied to other areas of the organization over the next two years. Future Research: Future work should focus on patient and health system outcomes as a result of improved family caregiver experiences. 1. The Change Foundation, 2016 2. Point of Care, 2016 3. Lofland et al., 2006

Family and unpaid caregivers often play an active role in managing the care of older adults with activity limitations. To examine caregivers' experiences with older adults' health care workers. This survey study constitutes a secondary analysis of a sample of 1916 family and unpaid caregivers to 1203 community-living older adults with activity limitations who participated in the 2017 National Health and Aging Trends Study. Data analysis was performed January to August 2019. Caregiver sociodemographic characteristics, caregiving intensity, and frequency speaking with or emailing older adults' health care workers. Caregiver-reported experiences when interacting with older adults' health care workers in the prior year, including being listened to, being asked about understanding of treatments, and being asked about help needed in managing older adults' care. Caregivers (mean [SE] age, 59.4 [0.5] years; 63.7% women) assisting community-living older adults with activity limitations reported that they never (56.3%), sometimes or rarely (33.0%), or often (10.7%) spoke with or emailed older adults' health care workers in the prior year. Most caregivers who interacted with older adults' health care workers reported being always (70.6%) or usually (18.2%) listened to and always (54.4%) or usually (17.7%) being asked about their understanding of older adults' treatments. Fewer caregivers reported being always (21.3%) or usually (6.9%) asked whether they needed help managing older adults' care, and nearly one-half (45.0%) were never asked. Caregivers who interacted with older adults' health care workers often (vs sometimes or rarely) were more likely to report being always or usually listened to (94.8% vs 86.9%; P = .004), being asked about understanding treatments (80.1% vs 69.5%; P = .02), and being asked about needing help (40.8% vs 24.1%; P < .001). No other exposures were consistently associated with caregiver experiences. Measures of caregiving intensity, including caring for an older adult with dementia, were not associated with being listened to or asked about understanding, but were associated with being asked about needed help. Although caregivers of persons with dementia were more likely than caregivers of persons without dementia to report always being asked about needed help (26.9% vs 19.0%), a high percentage in both groups were never asked (41.2% vs 46.5%) (P = .007). These findings reinforce the need for strategies to better support family and unpaid caregivers, who are the main source of assistance to older adults with physical and/or cognitive limitations.

Exploring the Lived-Experiences of Caregivers Caring for Elderly Persons in Qatar