Experiences Of Family Caregivers Research Articles

ENGAGEMENT DURING POST–ACUTE CARE TRANSITION: PERCEPTIONS AND EXPERIENCES OF DEMENTIA FAMILY CAREGIVERS

Abstract Hospitalized persons with dementia (PwD) are three times more likely to discharge to skilled nursing facilities (SNF) than those without dementia, and family caregivers are essential during post-acute care transitions (PACT). Descriptions of caregiver engagement are largely provider-centric, derived from either acute or residential settings. Little is known about PACT experiences of family caregivers. This study explored meaning, barriers, and facilitators of engagement for family caregivers navigating PACT, and elucidated caregiver support needs. An interpretive descriptive approach, using Meleis’s Middle Range Transition Theory was used to interview family caregivers during a PACT. Data were inductively coded and thematically analyzed. A conceptual framework illustrating caregivers’ meaning of engagement was developed, and facilitators, barriers, and needs were described. Participants (n=15), mostly white (n=12, 80%), female (n=13, 87%), married (n=7, 47%), adult children (n=11, 73%), average age of 63 (range: 38-81, SD=12.9). The core concept was advocacy. Key related themes were caregivers’ sense of being present, communication with providers, and meaningful connections with the PwD. Barriers to engagement centered on poor communication from professional caregivers and being isolated from the PwD. A facilitator to engagement was effective communication with professional caregivers. Similarly, caregivers’ support needs included receiving information related to the transition, and the health status of the PwD. Communication was central to both caregiver engagement and advocacy of PACT. Future policy/practice recommendations should include communication training for both providers and caregivers. Interventions that facilitate caregivers’ shared access and input into health information during PACT will promote integral roles on the care team.

THE EFFECT OF INTERVENTIONS TO REDUCE SOCIAL ISOLATION AND LONELINESS AMONG FAMILY CAREGIVERS: A SYSTEMATIC REVIEW

Abstract Social isolation and loneliness are among the key risk factors for deleterious health and well-being among family caregivers. Interventions to reduce caregiver isolation and loneliness are of great interest as family caregivers are essential in community care, particularly senior care. The current study aims to review the literature on interventions regarding social isolation and loneliness among family caregivers and summarize successful strategies for reducing isolation and loneliness among family caregivers. A systematic literature review was conducted. Electronic databases were searched, and 1130 peer-reviewed journal articles published in English since 2000 were identified. A total of 34 eligible studies (16 quantitative studies, 8 qualitative studies, and 10 mixed methods studies) were included in this review. Findings from qualitative studies (including qualitative components from mixed methods studies) consistently reveal the positive experience of family caregivers in reducing isolation and loneliness. However, findings from quantitative studies add more layers of complexity with considerable evidence of failing to identify the change of isolation or loneliness after attending interventions. The studied caregiver groups, length of intervention, and scales used to measure isolation and loneliness are closely relevant to the effect of the intervention. Besides peer support, mentoring and skill training, technology (Internet-based programs) plays a significant role in facilitating family caregivers to maintain social interaction and connectedness. This review confirms the pleasant impacts of different interventions in reducing caregiver isolation and loneliness, but also calls for more research in identifying changes of isolation and loneliness both short- and long-term among family caregivers.

INCONSISTENT AND UNPREPARED: HOW FAMILY CAREGIVERS AND OLDER ADULTS EXPERIENCE HOSPITAL DISCHARGE

Abstract Family caregivers and older adult patients report confusion, inconsistency, and a lack of preparation for post-discharge activities after a hospital stay, leading to hospital readmissions. This multi-disciplinary research project investigated how family caregivers, older adult patients, and hospital clinical and administrative staff experienced the hospital discharge process at a midwestern hospital system. The research team brought together expertise in community-engaged research and bridged multiple specializations, including personal family caregiver experience, community service expertise, community engaged research leadership, and instruction of medical students and social work students. Together, we conducted semi-structured interviews with family caregiver, older adult patients, and hospital personnel via video conference and telephone. We analyzed the data using open coding strategies and principles of thematic analysis. Themes included the importance of the timing of discharge planning, communication between all systems and individuals included in the discharge process, a lack of clarity regarding the roles in the process, inconsistent identification of the family caregiver, conflicting priorities, and the impact of medication errors. Implications are (1) each organization within the older adult/family caregiver system must determine their role in the post discharge process including the type of services and resources that support older adults and family caregivers and (2) the current system of healthcare, public sector, and community must determine how to adapt and change to support older adults and their family caregivers during the post-discharge period.

IF YOU KNOW ONE CAREGIVER, YOU KNOW ONE CAREGIVER: UNDERSTANDING THE DIVERSITY OF US CAREGIVING EXPERIENCES

Abstract For many years, the image of a family caregiver has been of a white woman in her late 40s providing care to her much older mother. The shifting demographics of the U.S. population have lead to a new understanding of the heterogeneity of family caregiving experiences and arrangements. Delays in having children and increasing longevity have led to an increase in caregivers sandwiched between care for someone under 18 at home and an older family member or friend and the share Gen Z and Millennial caregivers. The increasing racial and ethnic diversity and acceptance and visibility of persons identifying as LGBTQ has been reflected in the population of caregivers. Each of these communities of family caregivers have distinct care experiences and face unique challenges providing that essential care to family and friends with chronic, disabling, or serious health conditions. This presentation explores the diversity of the U.S. population of family caregivers and their unique care experiences detailed in the Valuing the Invaluable: 2023 Update. An overview of existing survey data on caregivers and quantitative and qualitative research into distinct caregiver experiences will provide attendees with a nuanced understanding of who family caregivers are and what they and their care recipients experience. In summary, the range of challenges these different caregivers face and positive experiences will be discussed.

PROMISING POLICY AND PRACTICE SUPPORTING FAMILY CAREGIVERS AND RECOMMENDATIONS FOR THE FUTURE

Abstract There have been significant federal and state policy developments since the 2019 update of Valuing the Invaluable. Many inroads have been made in recognizing and supporting family caregivers, but additional steps can be taken at the federal and state levels, and even in the private sector. The National Strategy to Support Family Caregivers, released in September 2022, lays out a unified approach in five organizing goals to achieving this improvement in support for family caregivers. The policy and practice recommendations highlighted in the Valuing the Invaluable: 2023 Update reflect the National Strategy goals. In this presentation, recent policy changes will be summarized that support caregivers and their care recipients in the health care and LTSS systems, which provide financial relief for caregiving, and help working caregivers stay in the workforce. Then the increasing visibility of the family caregiving experience in media and the arts will be explored. This visibility is essential for bringing broader attention to all aspects of caregiving, normalizing the care experience, and eliminating stigma around disability and dementia. Lastly, policy recommendations for building on the National Strategy and bolstering support for family caregivers and care recipients will be detailed for discussion.

A qualitative study exploring experiences of female family caregivers of people with dementia in acceptance and commitment therapy

ABSTRACTObjectiveFew studies have explored the experiences of family caregivers of persons living with dementia (PLWD) in acceptance and commitment therapy (ACT). This study aimed for in-depth exploration on experiences of family caregivers of PLWD in ACT.MethodIndividual interviews were conducted with eight family caregivers of PLWD who were women and participated in an eight-week video conferencing ACT program. Data were analysed using interpretative phenomenological analysis.ResultsTwo overarching themes emerged, including improved strategies in responding to emotions and thoughts in challenging caregiving situations and taking better care of myself. Participants perceived that ACT skills training improved their coping strategies and, subsequently, their daily emotions and relationship with their relatives with dementia. Participants also perceived ACT strategies and exercises as helpful and applicable resources for daily use in challenging caregiving situations. In addition, ACT helped participants feel comfortable taking the time to take care of themselves without feeling guilty and acknowledge that they must take care of themselves first to take better care of their relatives with dementia. These changes helped caregivers increase their participation in valued activities.ConclusionsThis study contributes to the literature by exploring experiences of family caregivers of PLWD in ACT, including its perceived benefits on themselves.Trial registration: ClinicalTrials.gov ID: NCT04847986 (https://clinicaltrials.gov/ct2/show/NCT04847986)

Psychological experiences of family caregivers of patients with breast cancer: Protocol for a meta-synthesis.

The number of breast cancer patients is increasing, but there are insufficient sources of information for their family caregivers. The purpose of this systematic review was to elaborate the psychologically realistic experiences and corresponding needs of family members of patients with breast cancer in the course of their experience in the disease which may provide them with effective, targeted intervention strategies to improve their quality of life. Protocol for a meta-synthesis. We will search the Chinese databases (i.e., China National Knowledge Infrastructure, VIP Database and Wanfang Database) and the English databases (i.e., PubMed, Embase, Web of Science, the Cochrane Library, CINAHL and PsycINFO). Qualitative studies from the above databases, studying the psychological experiences of family members of patients with breast cancer, will be searched comprehensively. The quality of the study will be evaluated by two reviewers independently using the Joanna Briggs Institute (JBI) critical appraisal tools for qualitative study, and any disagreements will be discussed and judged by the third reviewer. Data will be extracted using JBI standardized data extraction tool. Then, the literature will be compared and analysed, and the raw results summarized using the JBI meta-aggregation tool. The reliability and credibility of the overall quality of the included studies will be assessed by using the JBI ConQual approach. N/A. No Patient or Public Contribution. REDACTED.

It Goes Beyond Anxiety: Experiences of Family Members and Caregivers of Epilepsy Care and Support

It Goes Beyond Anxiety: Experiences of Family Members and Caregivers of Epilepsy Care and Support

Nuestro día (our day): The daily experiences of Latino ADRD family caregivers

AbstractBackgroundThe prevalence of Alzheimer’s disease and related dementias (ADRDs) among the Latino population is 1.5 times higher than non‐Hispanic whites. Latinos develop ADRDs earlier and experience more severe symptoms than other ethnic and racial groups. Further, comorbidities, including diabetes, heart disease, and hypertension, have also been observed among Latino individuals living with ADRDs — introducing additional health issues, exacerbating ADRD‐related symptoms, and accelerating functional decline. Given these observed disparities, Latino ADRD family caregivers are uniquely susceptible to increased caregiving stress that can negatively impact their mental health over time. Previous studies have reported on stress and well‐being among Latino ADRD caregivers; however, relatively little is known about the day‐to‐day caregiving experiences and mental health of Latino caregivers. Thus, the purpose of this study was to examine daily contextual factors and variations in depression symptom experience among Latino ADRD family caregivers.MethodsA national sample of Latino family caregivers (N = 71) completed daily diary surveys over 21 days (n = 2,481). Mixed‐level modes were used to examine relationships between daily caregiving stress, stress moderators, and depression‐related symptoms.ResultsLatino ADRD caregivers were more likely to report depression (OR = 1.14, 95% CI: 1.03‐1.25, p < 0.01) on a given day when behavioral symptoms of dementia were present and perceived as more bothersome than usual. A decrease in the daily odds of depression was observed on days when Latino ADRD caregivers reported receiving social support (OR = 0.69, 95% CI: 0.58‐0.82, p < 0.01), engaging in social activities with friends or other family members (OR = 0.38, 95% CI: 0.25‐0.58, p < 0.01), and engaging in self‐care activities (OR = 0.65, 95% CI: 0.46‐0.92, p < 0.05).ConclusionThis study offers insight into the daily experiences and mental health of Latino ADRD family caregivers by identifying specific stressors and stress moderators associated with depressive symptoms experienced on a given day. The results of this study highlight modifiable factors for ecologically valid and culturally relevant interventions that mitigate the adverse effects of caregiving stress. Such interventions are critically needed as Latino caregivers are an underserved and underrepresented population in dementia care and aging research.

Developing Care Partner Activation Program among Filipino American Care Partners of Persons with Dementia

AbstractBackgroundAttention must be given to Filipino‐Americans since they are a growing underrepresented population and limited research exists on their healthcare needs, priorities, and research engagement. The broad goal of this project is to address the unique challenges related to the provision of Dementia care among Filipino‐Americans.MethodMixed‐method sequential, transformative design to develop and test a program for care partners to strengthen their abilities to manage care activities, emergency department visits, and hospital admissions who experience disparities in access to care.ResultIn partnership with different Filipino‐American community‐based organizations, leaders were identified to explore capabilities and resources available to initiate the care partner activation program. Major support needed in areas related to: family dynamics and caregiving experience, spiritual and cultural values, communication and understanding of the disease process, advocacy groups, socio‐emotional support, insurance system, and financial concerns.ConclusionEducational opportunities exists for Filipino‐American families and communities related to provision of care among patients with dementia. Community‐based participatory research need to be promoted to encourage families and patients to engage and improve healthcare utilization.

Experiences of Family Caregivers Providing Home Care to Older Patients With Cancer: A Qualitative Study.

Older patients with cancer receive anticancer therapy in outpatient settings, and care-related issues may occur after discharge, which often requires family caregivers (FCs) to play a significant role in providing cancer care at home. However, relatively few studies have been focused on exploring the care experiences of these FCs. The aim of this study was to explore the care experiences of FCs caring for older family members with cancer at home. A qualitative study design and in-depth individual interviews were used to explore the at-home care experiences of FCs of older patients with cancer. The research was conducted in chemotherapy outpatient settings of a medical center in northern Taiwan. Content analysis was used to analyze data. The analyses focused on first extracting meaningful units from the text and then inducting categories from these units and determining the major themes. Twenty FCs were interviewed. The three themes identified included (a) increased information needs and challenges in diet preparation and treatment decision making, (b) personal and patient-induced emotional stress, and (c) life rebalancing through the care experience. The findings highlight the educational requirements, especially related to meeting personal dietary needs and obtaining psychological support, for FCs caring for older patients with cancer to help them rebalance their life.

"I Have Accepted My Father's Death; I was not Sad but Relieved." Adaptive Grief Responses for Bereaved Dementia Family Caregivers: A Scoping Review.

This scoping review explores findings from the psychological and medical literature on the adaptive grieving experiences of bereaved dementia family caregivers and integrates what healthcare professionals can do to support bereaved dementia family caregivers transition into a post-death role. Bereaved dementia family caregivers are particularly susceptible to prolonged grief disorder post-death due to the protracted caregiving demands and progressive course of the illness. The mention of caregiver grief while the person with dementia is living is quite common in the literature; however, limited research focuses on the bereaved dementia family caregiver and the methods they use to grieve adaptively. Three overarching adaptive grieving themes emerged from the review: 1) social health, 2) emotional and spiritual fitness, and 3) reclaiming activities. Given the growing prevalence of bereaved family dementia caregivers, understanding how they might most adaptively grieve and experience the greatest possible well-being should be a top focus for research.

Evaluating the effects of dyadic intervention for informal caregivers of palliative patients with lung cancer: A systematic review and meta-analysis.

To investigate the effects of dyadic intervention on anxiety, depression, care burden and quality of life in informal caregivers of palliative patients with lung cancer. Informal caregivers of palliative lung cancer patients bear a large number of negative emotions during the process of caring for the patients. Dyadic intervention has the potential for improving them but the overall effect is unclear. A systematic review and meta-analysis. All randomized controlled trials were retrieved from the following databases until 4 May 2023: Web of Science, Embase Ovid, PubMed, Cochrane Central Register of Randomized Controlled Trials, Weipu, Wanfang and Chinese National Knowledge Infrastructure databases. This review was performed by Stata 12.0 and Review Manager 5.3. Thirteen randomized controlled trials were in accordance with the inclusion and exclusion criteria (n = 1807). The results revealed that dyadic intervention significantly improved family caregivers' anxiety, depression and caregiver burden of palliative patients with lung cancer. There was no significant difference in quality of life between the dyadic intervention group and family caregivers who did not receive the dyadic intervention. Dyadic intervention positively impacts the experience of family caregivers of palliative patients with lung cancer.

Schizophrenia: jinn, magic or disease? Experiences of family caregivers of patients with schizophrenia in Baloch ethnicity.

Cultural and religious beliefs are effective on people's attitudes towards schizophrenia and their help-seeking behaviors. This study aimed to explain the experiences of family caregivers of patients with schizophrenia in Baloch ethnicity. This is a qualitative study with conventional content analysis approach. Purposive sampling was used and 21 participants, including family caregiver for patients with schizophrenia, a psychologist, a prayer-writer, and a normal person were interviewed in Sistan and Balochistan province in the southeast of Iran. Qualitative data were analyzed by Granheim and Lundman method. One main theme, three categories, and 10 Sub-categories were extracted from analysis of interviews. "Immersion in the cultural beliefs" was the main theme of the study with categories of "Belief in the superstitious and supernatural nature of the psychological disease", "Superstitious beliefs, an attempt to free the patient", and "Conflict between cultural beliefs and science". Help-seeking behaviors of family caregivers in Baloch ethnicity are influenced by their religious, superstitious, and cultural beliefs. Psycho-education should be part of all mental health education programs in these communities, as delays in treatment worsen the prognosis of people with schizophrenia. Training the medical staff to consider the culture, religion and therapeutic preferences of the Baloch people can be effective in advancing the goals. In addition, local influencers should stress the importance of health care alongside harmless local remedies.

Contributing to self-care of a person with chronic obstructive pulmonary disease: A qualitative study of the experiences of family caregivers.

To explore family caregivers' experiences of contributing to self-care of patients with chronic obstructive pulmonary disease (COPD). A qualitative description study. Individual semi-structured interviews were conducted face-to face, by telephone or video calls in a purposive sample of 17 family caregivers of patients with COPD recruited in Italy, and analysed through content analysis. The consolidated criteria for reporting qualitative studies (COREQ) checklist was used for study reporting. Ten subcategories were derived from 106 codes grouped into three main categories: family caregiver contributions to maintaining disease stable and ensuring a normal life for patients; family caregiver contributions to disease monitoring; and family caregiver contributions to coping with disease exacerbations. Family caregivers provided practical and emotional support, and their contribution was essential to improve treatment adherence, to enable the patient to continue living a normal life, and to have access to the healthcare services. Family caregivers were constantly vigilant and monitored patients daily to detect worsening conditions, and they managed exacerbations especially when patients were unable to do it due to their critical conditions. This study broadens knowledge of family caregivers' contributions to patients' self-care in COPD, describing the different ways family members provide daily care to patients and the many responsibilities they take on. Family caregivers perform a variety of behaviours when supporting patients with COPD in self-care, especially when patients are more dependent and the disease more severe. Nurses should acknowledge the various contributions provided by family caregivers and develop educational interventions aiming to support them in patient care and improve patient outcomes. Researchers shared the draft study report with participants for validation and feedback. This helped to strengthen the study design and results.

Menerima dan Memaknai Diagnosis: Pengalaman Family Caregiver dalam Proses Penyampaian Diagnosis Skizofrenia

The diagnosis of schizophrenia is something important that needs to be informed, not only to the patient but also to the family caregiver. Delivering a clear diagnosis and related information, can help the family caregiver understand their family member's condition and their role as a family caregiver. This, in turn, can impact the success of the patient's treatment process. However, in practice, there are still many healthcare professionals who are hesitant to explicitly communicate a diagnosis of schizophrenia. In Indonesia, some family caregivers experiencing a lack of information about the diagnosis of schizophrenia provided by healthcare providers. This study aims to understand the experiences of family caregivers of individuals with schizophrenia regarding the process of diagnosis communication and other aspects related to the diagnosis of schizophrenia. Semi-structured interviews were conducted with 5 family caregivers who were aware of the diagnosis process of their family members. The data analyzed using a reflexive thematic analysis approach. The results revealed several themes in the experiences of family caregivers during the diagnosis communication process, including pre-diagnosis assumptions, uncertainty about diagnosis-related information, various responses after receiving the diagnosis, the presence of additional sources of information, communication patterns with healthcare providers, and expectations related to the diagnosis communication process. In conclusion, most family caregivers expect a clear, detailed, and comprehensive diagnosis communication. Additionally, family caregivers emphasize the importance of warmth, empathy, and a willingness to spend time discussing their family member's condition with caregivers.

Family Caregivers' Trajectories of Distress While Caring for a Person With Serious Mental Illness.

Serious mental illness (SMI) can significantly impact the lives of individuals and their families. These families often experience great emotional distress over time due to the early onset of SMI, which in turn leads to long-term trajectories and only partial recovery. However, we do not fully understand the emotional distress of family caregivers. Thus, our aim was to enrich the understanding of the lived experiences of family caregivers' emotional trajectories of distress while caring for persons with SMI. We conducted a secondary analysis using a hermeneutic approach to the narratives of seven family caregivers from a study on living with voices unheard by others. Participants' trajectories of emotional distress came forth as being thrust on an unpredictable, intensely worrisome, and indefinite journey. The following themes highlighted this tumultuous journey: fumbling in the dark trying to grasp the incomprehensible, "on your toes"-enduring unpredictability, facing different forms of fear, and battling waves of sadness and regret. Caregivers face multiple threats to their well-being and sometimes even to their health. Their distress appeared to vary according to their relationship with the person with SMI, whether they lived with the ill person, illness trajectory, and amount of violent or suicidal behavior. The results underscore the need for individualized and timely information, opportunities for dialogue with healthcare providers with and without the person with SMI, and inclusion in care planning. Caregivers who have experienced trauma, threats of violence, and rejection require special attention.

Behind the scenes of caregiving in patients with advanced cancer: A qualitative study on family caregivers

ObjectiveFamily caregivers may have concerns that they do not want to disclose to others. This study aims to delve into the concealed facets of care provided by family caregivers to patients with advanced cancer. MethodsA qualitative approach was conducted in Iran from June 2022 to February 2023. Face-to-face, in-depth semi-structured interviews were carried out with 16 Iranian family caregivers of patients with advanced cancer, employing purposive sampling. The gathered data were analyzed using conventional content analysis, and Lincoln and Guba's criteria for rigor were applied to ensure the study's trustworthiness. ResultsThe analysis of the data resulted in the identification of three main themes with nine subthemes. The key themes derived from the experiences of family caregivers encompassed (1) chaotic mentalities, (2) troubling interdependence, and (3) desperational emotions. ConclusionsCaregivers of patients with advanced cancer commonly experience a highly fragile psychological state and are profoundly impacted by their concerns for the patient. Healthcare systems should prioritize ensuring that caregivers receive sufficient support and care.

Impact of childhood and adolescence cancer on family caregivers: a qualitative analysis of strains, resources and coping behaviours

BackgroundThe physical demands of caring for children and adolescents diagnosed with cancer, over a lengthy period, exert significant strain on the health and well-being of family caregivers. The capacity of family caregivers to surmount and cope with the various strains they experience due to the diagnosis and treatment trajectory is essential to the quality of life of the child and adolescent who has been diagnosed with cancer. However, the experiences of family caregivers have been under-explored. This study explored the strains, resources, and coping strategies of family caregivers of children and adolescents diagnosed with cancer in Ghana.MethodsGuided by a descriptive phenomenological design, 20 semi-structured interviews with family caregivers were conducted at a tertiary health facility that provides paediatric oncology services. The study was conducted between June and October 2022. The interviews were transcribed verbatim, translated and coded using NVivo software. An inductive thematic analysis approach using Vaismoradi et al.’s thematic analysis framework was followed in analysing the data.ResultsThe study revealed that family caregivers of children diagnosed with cancer experienced three main strains: somatic strains (poor sleep quality, loss of appetite, and unintended weight loss), economic strains (financial burden and loss of economic livelihood), and psychosocial strains (isolation from social activities and network, frustration and helplessness, and balancing multiple family needs). The following themes emerged as coping resources: family cohesiveness, community support, and support from health care providers. Coping strategies that emerged included trusting in God and being self-motivated.ConclusionThe study concludes that family caregivers experience somatic, economic, and psychosocial strains. However, they can leverage available resources (family cohesiveness, community support, and support from healthcare providers) to cope with these strains. There is a need to educate and sensitize family caregivers about the potential strains that they are likely to experience prior to the assumption of care roles. Also, the formal inclusion of non-governmental organizations and religious bodies will ensure that family caregivers receive sufficient community support to cope with the strains of caregiving.

Exploring Experiences of Pain Management Among Family Caregivers of Community-Dwelling Older Adults With Dementia.

Pain is often underreported and under-treated in older adults with dementia. The role of family caregivers (FCGs) in managing pain for their loved ones with dementia living in community has been significantly burdensome. Surprisingly, research has not delved into the experiences of FCGs' concerning pain management in this context. A qualitative descriptive study was conducted to gain a deep understanding of FCGs' experiences in managing pain for their loved ones. Family caregivers participated in semi-structured face-to-face or telephone interviews. Inclusion criterion included being an adult providing care to community-dwelling older adults with dementia. Recruitment stopped upon reaching thematic saturation. Basic demographic characteristics was also collected. Constant comparison analytic method was employed. The study included 25 FCGs in central Virginia, spanning ages from 29 to 95. Participants were predominantly white, female, married, and had a minimum high school education. Most of them were adult children (52%) or the spouses (28%) of the care recipients. Four thematic categories emerged around exploring FCGs' pain management experiences: (1) Values; (2) Barriers; (3) Support; and (4) Adaptation. Each theme included sub-themes. Family caregivers follow their values to make decisions in pain management. Barriers existed for effective pain management. Adaptation and support from professional or formal caregivers greatly improved FCGs' perception of their competence in pain management. The finding underscores the need for further research and the development of interventions aimed at enhancing FCGs' perception of self-efficacy in this crucial aspect of caregiving.