Experiences Of Family Caregivers Research Articles

Exploring the ethical decision-making experience of caregivers of end stage cancer patients in Iran: a phenomenological study.

Ethical decision making is a complex issue because it strongly depends on the religion, beliefs, traditional laws and moral views of each society. The purpose of this study was to explore the experience of Iranian family caregivers of end stage cancer patients about ethical decision making. This qualitative study is based on van Manen's method of hermeneutic phenomenology. In-depth interviews were carried out to collect data. Participants were 12 caregiver. Audiotapes were transcribed and analyzed for common themes that represented the participants' experiences. Trustworthiness of the findings was established using the Lincoln and Guba's criteria. Three themes reflected the essence of caregivers' lived experience including; fluctuating between hope and despair, wandering dilemma, and ethical decision making. Each of these themes consisted of several subthemes. The present study revealed that, the caregivers of terminally ill cancer patients need different information about prognosis and end of life decision making process. Our perception of how families negotiate ethical issues in their decision-making is still developing. Opportunities should be created to empowering caregivers to talk about their uncertainties and concerns.

Experience of Family Caregivers in Long-Term Care Hospitals During the Early Stages of COVID-19: A Phenomenological Analysis

Background/Objectives: This study investigated the experiences of inpatient family caregivers who experienced restrictions in meeting their family members owing to the changed visitation guidelines of long-term care hospitals during the early stages of the coronavirus disease 2019 (COVID-19). We aimed to deepen our understanding of the nature of these caregivers’ experiences. Methods: The participants were family caregivers of patients in long-term care hospitals during the early stages of the COVID-19 pandemic. We collected data from nine inpatient caregivers from April to July 2021. Individual interviews and data were analyzed using Colaizzi’s phenomenological method. Results: Participants’ experiences were classified into the following three themes: (1) a prison-like long-term care hospital bound by strict COVID-19 prevention rules; (2) growing affection for unreachable parents; and (3) adaptation to a new, safer daily life. Participants had difficulty communicating with their families living under quarantine conditions during COVID-19 due to non-face-to-face situations. However, amid the long-term COVID-19 situation, participants overcame these challenges through efforts to facilitate communication. Conclusions: The results of this study can be used as basic data to support the smooth communication between patients and caregivers in long-term care hospitals in the event of an infectious disease outbreak in the future, to alleviate emotional stress, and to minimize the weakening of families.

Shivering Hopes: A Qualitative Inquiry into the Experiences of Family Caregivers of Critically Ill Patients Reliant on Health Care Technology.

The aim of the study was to assess the lived experience of family caregivers of critically ill patients sustained by healthcare technologies in Benin-City, Nigeria. This study employed a hermeneutic phenomenological design. Data were collected through in-depth individual interviews with ten participants, observations, and field notes. The analysis was conducted using Paul Ricoeur's Theory of Interpretation and managed with Nvivo data management software. The study was conducted at the University of Benin Teaching Hospital (UBTH) from August 2022 to December 2023, with a sample size of 10 participants. The study's findings revealed that the majority (70%) of family caregivers were at least 30 years old, Christian, and had spent a minimum of two weeks in the intensive care unit (ICU). Ninety percent had received post-secondary education. Three themes emerged from their experiences: "Journeying into the unknown," "Technological care is an ecosystem," and "Exhibiting emotional intelligence." In addition to that, the findings also showed that upon learning of their loved one's''' transfer to the ICU, caregivers experienced mixed emotions, including palpable fear of death. This fear was linked to the high costs of management, a tense hospital environment, lack of involvement in care, institutional shortcomings, and diminished motivation due to frequent deaths in the ICU. Family caregivers must be engaged in formulating and implementing care plans to provide holistic care that meets the needs of both patients and their caregivers. Hospital administrators should take proactive steps to reduce treatment costs, making care more affordable for families. Furthermore, comprehensive programs aimed at addressing the institutional flaws identified in this study must be implemented urgently.

Family caregiving experiences of medical school faculty: high prevalence, high strain, and low resource awareness.

Adult caregiving can be demanding and stressful, especially when the caregiver is employed. As the age of the U.S. population and workforce increases, more adults are providing care to aging family members. To understand the prevalence and aspects of the caregiving experience and caregiving strain among department of medicine faculty members, and to gauge their awareness and utilization of caregiving resources. We used a cross-sectional survey design. A questionnaire survey was developed and launched in Redcap in October, 2022, and an invitation was emailed followed by two reminders to all full-time and part-time faculty members (N = 1053) in our department of medicine. Faculty demographics, caregiver status, caregiving details, degree of mental or emotional strain, and knowledge of and use of employer and external caregiver resources. Of the 1053 faculty members who received up to three email survey invitations, 209 (20%) responded of which 76 (36%) were current caregivers and 117 (56%) were non-caregivers. Among the 76 current caregivers, 53 (70%) reported providing care for parents or parent-in-laws and 9 (12%) reported caring for a spouse. One-third of current caregivers reported caring for individuals with Alzheimer's disease or dementia/memory problems. Ninety-five% of current caregivers reported some or a lot of caregiving strain. A wide variation in knowledge of and use of employer and external caregiver resources was reported. Department of medicine faculty who provide adult caregiving report a high prevalence of strain and wide variation in knowledge of and use of employer and external caregiver support services, suggesting opportunity to better understand where gaps exist in providing support for caregivers.

Experiences of family caregivers of children living with thalassaemia-major in Karachi: a phenomenological study

IntroductionThalassaemiamajor, a global health burden, presents a growing challenge in Pakistan’s strained healthcare system. This study explores how caregivers of children with beta-thalassaemia major navigate healthcare services, aiming to identify facilitators and barriers to accessing optimal care.MethodsA qualitative interpretative phenomenological approach was employed. In-depth interviews with 18 purposively sampled caregivers from Karachi thalassaemia centres were conducted. Thematic analysis using a combined inductive-deductive approach identified themes within the interview data.ResultThe study revealed significant challenges for caregivers at individual, interpersonal and organisational levels. Lack of awareness about carrier states, limited disease knowledge, financial constraints and concerns about the child’s future emerged as primary hurdles. Parents felt helpless due to the absence of emotional and social support for their children’s treatment. Obstacles such as complicated registration processes at thalassaemia-care centres, high costs of chelating agents and blood unavailability were major barriers to seeking care and caregiving. Additionally, the study highlighted the absence of guidelines for thalassaemia-carrier detection among mothers during antenatal care.ConclusionThe study emphasised the importance of implementing premarital screening programmes due to the lack of knowledge about the disease and carrier state. To prevent the disease, it is crucial to include thalassaemia-carrier detection for mothers in antenatal guidelines and provide counselling at the primary level. Additionally, caregivers encountered treatment accessibility issues, prompting the establishment of a satellite thalassaemia centre linked to a top-tier tertiary care hospital in the public sector. This initiative addressed treatment challenges and improved overall care for patients with thalassaemia and their caregivers.

The barriers and facilitators family caregivers experience when participating in resource-limited hospital care: a qualitative systematic review

BackgroundIn many resource-limited settings, understaffed hospitals rely on patients’ families to provide care during admission. These care tasks are often performed informally, untrained and unsupported. The WHO has called for...

Challenges for Family Caregivers of Persons With Mild Cognitive Impairment: A Qualitative Longitudinal Study.

Family caregivers of persons with mild cognitive impairment attempt to understand the behavioural and functional changes exhibited by their relative. However, how caregivers respond to initial changes and changes over time has not been explored. The purpose of this qualitative study was to explore the experience of family caregivers responding to changes in their relative's memory, behaviours, and physical functions over 2 years. Eleven family caregivers of a relative with mild cognitive impairment were purposively recruited from neurological clinics in Taiwan. Face-to-face semi-structured interviews were conducted within 6-months of referral; three follow-ups were conducted at 6-month intervals. Content analysis of 41 transcribed audio-recorded interviews revealed the longitudinal changes in their relative with cognitive impairment was made caregiving challenging. Three themes described the challenges: (1) Changes related to their relative's cognitive impairment, which included increases in mood fluctuations, erratic behaviours, and reductions in physical abilities; (2) changes in their relative's comorbidities, which included adapting to new symptoms and treatments for a chronic disease, monitoring medication adherence and drug interactions; and (3) changes in caregiver burden, which increased levels of stress, uncertainty, and anxiety resulting in greater role strain. Caregiving became more challenging with time, especially caregivers whose relative developed dementia during the study period. These findings offer insight into the trajectory of the experience of family caregivers attempting to understand changes in cognition, behaviours, and physical functions for their relative with mild cognitive impairment over 2 years, which could help mental healthcare providers develop support services to reduce caregiver role strain.

Exploring the Lived Experiences of Family Caregivers Who Provided End-of-Life Care to Hemodialysis Patients: A Phenomenological Study in Iran

Background: Providing end-of-life care involves offering care and support to patients with advanced incurable diseases who are in their final stages of life. Family caregivers of these patients often dedicate substantial time to their care, which can significantly impact their physical and psychological well-being. Objectives: This study aimed to explore the lived experiences of family caregivers providing care for hemodialysis patients at the end of life. Methods: This qualitative study employed a descriptive phenomenological design. To ensure information-rich samples, nine family caregivers of hemodialysis patients at the end of life were selected from two dialysis centers using a purposive sampling method. Data collection involved conducting in-depth, semi-structured, face-to-face interviews, which were digitally recorded for accuracy. Analysis was conducted using van Kaam's seven-step method. Results: Nine family caregivers, including 3 men and 6 women, participated in this study. They had a mean age of 59.44 years, and on average, they had been caring for their patients for 6.33 years. Four main themes and twelve sub-themes emerged from the analysis of the interviews. These themes, as well as their sub-themes, were: (1) complex care (individual-social struggles and healthcare hurdles); (2) care as an opportunity for skill development (experience of spirituality and development of mental capacity); (3) care as a chain of caregivers (ignorance of the caregiver, lifestyle adjustments, persistent concerns, questioning circumstances, and mental strain due to prolonged care); and (4) moments of misfortune (emotional exhaustion from witnessing the patient's physical deterioration, a sense of helplessness regarding the patient's mental and cognitive state, and a sense of helplessness regarding the patient's mental and cognitive state). Conclusions: Caregivers expressed a spectrum of both positive and negative experiences. While some viewed their role as fostering intellectual growth and development, others described feelings of confinement, entrapment, and sacrifice. Further comprehensive research is required to determine the factors contributing to this diversity of perspectives.

Family caregiver narratives of hospice death vigils

BackgroundOften, family members and friends gather around a dying hospice patient to say goodbye in what is known as a death vigil. The purpose of this study is to explore...

Examining Factors That Contribute to Poststroke Depression Within the Family Caregiver and Care Recipient Dyadic Experience

Purpose: Stroke survivors often experience biochemical changes in the brain. This decreases the ability to experience positive emotions. Stroke survivors contend with the loss of their former self and are often left with residual physical, cognitive, communicative, and psychological changes leading to a depressive state. With an increasing number of stroke survivors returning to the community, informal care provided by family members will continue to rise. Many of the challenges faced by stroke survivors with poststroke depression (PSD) and by family caregivers (FCGs) have a significant impact on the relationship itself. With the goal to obtain insight into potential contributing factors to poststroke depressive features in stroke survivors, this qualitative research study aimed to investigate the experiences, behaviors, and perceptions of participants with PSD living in the dyadic relationship between FCG and stroke survivors. Method: Six FCG–stroke survivor care recipient dyads served as the participants. All stroke survivor care recipients were diagnosed with or had signs and symptoms of depression poststroke. Semistructured interviews were conducted with stroke survivors within each dyadic relationship. All participants were within this dyadic relationship for at least 3 months. Results: Six themes emerged from the stroke survivors. The findings indicated that grieving of the former self, lack of self-efficacy, isolation, difficulty with communication, perceived stress of the FCG, and lack of depressive coping skills are factors that contribute to PSD. Conclusions: There were multiple factors experienced by stroke survivors within the dyad affecting their emotional state and leading to or exacerbating depressive symptoms. Additionally, stroke survivors have limited coping strategies for depressive symptoms. Stroke survivor informational counseling, training, and education may improve coping strategies and decrease symptoms of depression and therefore lead to strengthened rehabilitative outcomes. Supplemental Material: https://doi.org/10.23641/asha.27156381

"It Isn't What I Had to Do, It's What I Get to Do": The Experiences of Black Family Caregivers Managing Dementia.

Black family caregivers of persons with dementia experience high levels of stress that can negatively affect caregiver health outcomes and reduce caregiving capacity. However, Black caregivers tend to report low levels depressive symptoms or other negative health effects. This qualitative descriptive study aimed to identify factors that contribute to resilience among Black family caregivers. Using the rigorous and accelerated data reduction (RADaR) technique to complete thematic analysis, a team of five coders examined transcript data from three focus groups of Black current and former family caregivers (n = 17) of persons with dementia. We identified three primary factors that contributed to caregiver resilience including access to supportive environments, adaptability, and planning skills. Caregiver resistance to reporting depressive symptoms may be attributed to the strong Black woman schema. Findings from this study may be used to develop future culturally responsive interventions that support caregivers and promote family health.

Uncovering perspectives on physical activity in nursing homes: a qualitative exploration of the experiences of healthcare professionals and family caregivers

BackgroundThe ageing population has increased the demand for healthcare services. In Norway, community-based long-term care are prioritised, leading to fewer nursing home places. As a result, nursing home residents are now older and have more complex needs. Nearly 92% of nursing home residents are affected by cognitive impairments accompanied by neuropsychiatric symptoms (NPS) that affect their daily activity, physical function, cognition, and behaviour. Traditionally, pharmacological therapy has been the prevailing treatment for NPS. However, emerging evidence suggests that physical activity can serve as an alternative treatment approach. Physical activity has the potential to maintain physical independence and enhance the quality of life (QoL) for the residents. Despite these benefits, institutionalisation in a nursing home often restricts activity levels of residents. This study explores facilitators and barriers to physical activity in nursing homes through the experiences of healthcare professionals and family caregivers. The goal is to enhance our understanding of how to promote and support physical activity for nursing home residents by identifying essential factors for successfully implementing daily physical activity initiatives.MethodsSeven focus groups were conducted with a total of 31 participants. Participants included healthcare professionals (physiotherapists, nurses, unit- and department managers, assistant occupational therapists, and assistant nurses) and family caregivers of residents at nursing homes. Data were analysed using Braun and Clarke’s reflexive thematic analysis, underpinned by hermeneutic phenomenology.ResultsThree main themes related to facilitators and barriers to physical activity in nursing homes were identified: inconsistency in task prioritisation; need for improved interprofessional collaboration; and need for improved utilisation of external resources. The participants experienced task prioritisation and lack of interdisciplinary collaboration as barriers to physical activity. The involvement of external societal resources was considered as both a facilitator and a necessity for obtaining physical activity in nursing homes.ConclusionsThis study highlights the need for a consensus in task prioritisation, enhanced competence among healthcare professionals, and better interdisciplinary collaboration to facilitate physical activity in nursing homes. Involving external societal resources could be a strategic approach to address barriers and support physical activity initiatives. Future research should focus on developing effective strategies for interdisciplinary collaboration that prioritises and promotes physical activity in nursing homes.

Experiences of family caregivers and nursing home staff interactions during the adaptation process of elderly individuals moving to nursing home: a qualitative study

ObjectiveTo explore the interaction between family members and nursing home staff during the adjustment period of newly admitted elderly individuals in a nursing home.DesignA qualitative descriptive study based on semistructured...

Experiences of Family Caregivers of Older Adults With Dementia in Korea During the COVID-19 Pandemic: A Qualitative Analysis.

To explore the experiences of family caregivers of older adults with dementia in Korea during the coronavirus disease 2019 pandemic. In-depth interviews were conducted with eight family caregivers of older adults with dementia from September to October 2021. Collected data were analyzed using Giorgi's phenomenological methodology. Four themes were derived: A Rough Journey With Worry, A Desolate Life in a Disconnected World, Frustration Due to Health Deterioration, and Looking Toward the Future Despite Heavy Responsibility. This study is meaningful as it increases our understanding of the experiences and needs of individuals with dementia and their family caregivers, and results can assist in finding ways to help them cope with their difficulties during future pandemic situations. [Journal of Gerontological Nursing, 50(10), 42-48.].

Experiences of family caregivers of patients with end-of-life cancer during the transition from hospital to home palliative care: a qualitative study

BackgroundThe transition of family caregivers of patients with end-of-Life cancer receiving palliative care from hospital to home is a complex and challenging process. This phase of care involves not only the physical and psychological health of the patient but also the role adaptation and emotional support of the family caregivers. To gain a deeper understanding of the various experiences and feelings during this process, we conducted a qualitative study.MethodsThis study employed a descriptive phenomenological research method. The interviews focused on the specific experiences, challenges faced, support received, and coping strategies of family caregivers of patients with end-of-life cancer during the transition from hospital to home palliative care. All data were treated with strict confidentiality, and recordings and transcriptions were made with the participants’ consent.ResultsA total of 15 family caregivers participated. Four main themes and nine sub-themes were identified: complex transition process (anxiety about uncertainty, resistance to transition), discontinuity in care (insufficient discharge guidance, lack of continuous communication mechanisms), post-discharge continuous care needs (need for home care knowledge and skills, social and emotional support, grief counselling and death education), and personal growth and gains (enhanced coping ability, increased psychological resilience).ConclusionFamily caregivers face numerous emotional, cognitive, practical, and social support challenges during the transition from hospital to home care. To improve the caregiving experience and quality of life, appropriate training and support should be provided to better meet the caregivers’ needs.

A Qualitative Study Exploring Experiences in Caregiving for Patients With Advanced Wilson Disease.

BACKGROUND: Wilson disease (WD) is a rare disease characterized by impaired copper metabolism. It is usually diagnosed in children and has several distinct attributes that can make the caregiving experience different. The advanced stage of the illness is quite challenging, and caregiver experiences during this phase of the disease are underexplored. METHODS: The present study is an exploratory qualitative investigation with in-depth interviews aiming to understand the experiences of family caregivers of children with advanced WD receiving neuropalliative care services at a tertiary care hospital. Interviews from 7 family caregivers were recorded, transcribed, and analyzed using an inductive and interpretive approach. RESULTS: Family caregivers in the study were predominantly mothers. The major themes that emerged are: being a parent and the caregiver, uncertainty related to illness, financial implications, understanding the disease dynamics, constructive coping strategies, and extended family networks and societal influences. CONCLUSION: The experiences and the encounters of family caregivers of children with advanced WD are multifaceted. Their challenging experiences underscore the need for extended supportive services and neuropalliative nursing care to assist the caregivers and families, and navigate the process of treatment and rehabilitation for the child.

Spiritual Challenges of Family Caregivers of Patients in a Vegetative State: A Qualitative Content Analysis

Background: Spirituality helps family caregivers of vegetative state patients to overcome the stressful conditions of patient care. However, the illness and caregiver burden may also negatively affect the caregiver’s spirituality. Accordingly, this study aimed to investigate the challenges of family caregivers of patients in a vegetative state. Methods: The present qualitative study was conducted through conventional content analysis from August 2020 to September 2021 in two provinces of Iran (Sistan and Baluchestan and Khorasan Razavi). A total of 20 family caregivers of patients in a vegetative state were included in the study. Semi-structured interviews were employed to collect data. Data were analyzed using the method proposed by Graneheim and Lundman via MAXQDA2020 software. Data collection continued until data saturation and identification of main categories. Results: Based on data analysis, spiritual disintegration and spiritual coherence were identified as the two main categories to describe the spiritual challenges of family caregivers of patients in a vegetative state. The experiences of family caregivers showed that spirituality is effective in accepting the conditions and adapting to the role of the patient caregiver. However, illness and caregiver burden lead to spiritual damage and the turning away of family caregivers from performing religious rites and rituals. Conclusion: Considering the undeniable role of spirituality in dealing with the stressful situation of caring for a patient in a vegetative state, the spiritual needs of family caregivers and the implementation of nursing interventions to enhance the spiritual health of caregivers should be given more attention.

Exploring the Perceptions of Families and Nurses After Signing a Do-Not-Resuscitate Order for Patients in Respiratory Care Wards.

Introduction: This study aimed to explore the perceptions and experiences of family caregivers and nurses after the signing of a do-not-resuscitate (DNR) order for patients in respiratory care wards (RCWs). The goal was to facilitate nurses' preparedness for responding to family reactions and feelings in future DNR situations. Methods: The study employed semi-structured interviews with ventilator-dependent patients' families and nurses recruited from RCWs in regional and district hospitals in New Taipei City. It explored the feelings, motivations, and decision-making processes concerning DNR orders. Thematic analysis identified key themes and patterns. Results: Twenty-two family members and 12 nurses, caring for 22 patients, participated in the interviews, resulting in 44 interview transcripts. The majority of family members were male (54.5%), whereas all nurses were female. Family caregivers and nurses had nuanced perceptions and showed emotional responses after the signing of DNR orders. Family caregivers grappled with feelings of guilt, uncertainty, and the weight of decision-making, while nurses navigated ethical dilemmas and sought to support families through the process. Common themes included the desire to minimize the patient's suffering, concerns about quality of life, and the need for clear communication and support. Conclusion: The understanding of family caregivers' and nurses' perceptions of DNR orders for patients in RCWs illuminates complex end-of-life care challenges. A key gap in the study was its limited generalizability due to focusing on specific RCWs. Nonetheless, the insights gained may enable health care providers to tailor support, facilitate informed decision-making, and promote compassionate care for ventilator-dependent patients and their families.

Experiences of family caregivers of nurses infected with COVID-19: a qualitative study

BackgroundNurses, as the main healthcare workers during the COVID-19 pandemic, were at high risk of contracting the disease. Family caregivers played a vital role in the support and recovery of patients with COVID-19. The experiences of family caregivers of nurses are very important due to the nature of their job. However, little information is available in this field. To this end, the present study aimed to explore the experiences of family caregivers of nurses who recovered from COVID-19.MethodsThis descriptive qualitative study was conducted in one of the hospitals in southeastern Iran in 2022. The participants were 12 family caregivers of nurses who recovered from COVID-19 and were selected through purposive sampling. The data were collected through semi-structured interviews and analyzed using conventional content analysis. The Consolidated Criteria for Reporting Qualitative research checklist was used to report the findings.ResultsThe analysis of the data revealed psychosocial consequences as main theme, three categories and nine subcategories including negative emotions and attitudes (fear of deterioration/death, fear of frequent infection, fear of transmitting infection to others, despair of recovery, Changing attitudes toward the nursing profession), caregiver burden (role conflict, economic pressure) and lack of support, ineffective interactions and isolation (Lack of support from nursing managers and colleagues, ineffective interactions and isolation).ConclusionLike other caregivers, family caregivers of nurses recovered from COVID-19 experienced psychosocial consequences and a heavy burden of responsibility. However, what differentiates our findings from the results reported in previous studies is the change in caregivers’ attitudes toward nursing and regret for their family members being nurses. The lack of support from medical staff and managers for nurses, the condition of nurses frequently contracting COVID-19 due to the nature of their profession, and the fear of transmitting the infection to others due to contact with COVID-19 patients in the workplace expose these caregivers to additional stress and many risks. Thus, these caregivers need more attention and support in similar situations; an issue that seems to have been neglected during the COVID-19 pandemic.

The perceptions and experiences of caregivers of patients with dysphagia: A qualitative meta-synthesis.

To understand the perceptions and experiences of family caregivers of adult patients with dysphagia. Dysphagia is a common symptom and burdens caregivers greatly. There is a growing body of studies concentrating on caregivers and caregiving experiences. However, no qualitative meta-synthesis has been conducted to explore the perceptions and experiences of family caregivers. A qualitative meta-ethnography. A search was conducted for relevant articles in six electronic databases (PubMed, Web of Science, CINAHL, Ovid, Cochrane Library, ProQuest) and two Chinese databases (CNKI, Wanfang Data) from inception to February 2023. The Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) was used to evaluate study quality. The meta-ethnographic method was used to synthesize data from qualitative studies. The study was reported according to EQUATOR guidelines. Eleven studies were included and three themes emerged: (1) emotion and perception, (2) change and challenge (3) adaption and coping. This review highlighted the challenges and positive coping experienced by caregivers. Findings directly inform the development and implementation of supportive interventions to reduce caregivers' stress and promote adaptive coping. Pay attention to the needs of family caregivers of dysphagia. Family caregivers' perceived severity of dysphagia requires assessment. Caregivers need knowledge, support, and guidance to reduce their burden and fulfill their role.