Experiences Of Family Caregivers Research Articles

"Things That You Thought Mattered, None of That Matters": A Qualitative Exploration of Family Caregiver Values following Left Ventricular Assist Device Implantation.

Intentional exploration, or elicitation, of patient and family values-who/what matters most-is critical to the delivery of person-centered care, yet the values elicitation experiences of family caregivers have been understudied. Understanding caregiver experiences discussing, reflecting upon, and acting on their values is critical to optimizing health decisions after left ventricular assist device (LVAD) implantation. The aim of this study was to explore the values elicitation experiences of family caregivers of individuals with an LVAD in the postimplantation period. This was a qualitative descriptive study of LVAD caregivers recruited from an outpatient clinic in the southeast United States. After completing one-on-one semistructured interviews, participants' transcripts were analyzed using thematic analysis. Interviewed caregivers (n = 21) were 27 to 76 years old, with 67% African American, 76% female, 76% urban-dwelling, and 62% a spouse/partner. LVAD implantation was an impactful experience prompting caregiver reevaluation of their values; these values became instrumental to navigating decisions and managing stressors from their caregiving role. Three broad themes of caregiver values elicitation experiences emerged: (1) caregivers leverage their values for strength and guidance in navigating their caregiving role, (2) LVAD implantation prompts (re)evaluation of relationships and priorities, and (3) caregivers convey their goals and priorities when deemed relevant to patient care. Having a care recipient undergo LVAD implantation prompted caregivers to reevaluate their values, which were used to navigate caregiving decisions and stressors. Findings highlight the need for healthcare professionals to engage and support caregivers after LVAD implantation.

Urban people’s preferences for life-sustaining treatment or artificial nutrition and hydration in advance decisions

BackgroundThe Patient Right to Autonomy Act (PRAA), implemented in Taiwan in 2019, enables the creation of advance decisions (AD) through advance care planning (ACP). This legal framework allows for the withholding and withdrawal of life-sustaining treatment (LST) or artificial nutrition and hydration (ANH) in situations like irreversible coma, vegetative state, severe dementia, or unbearable pain. This study aims to investigate preferences for LST or ANH across various clinical conditions, variations in participant preferences, and factors influencing these preferences among urban residents.MethodsEmploying a survey of legally structured AD documents and convenience sampling for data collection, individuals were enlisted from Taipei City Hospital, serving as the primary trial and demonstration facility for ACP in Taiwan since the commencement of the PRAA in its inaugural year. The study examined ADs and ACP consultation records, documenting gender, age, welfare entitlement, disease conditions, family caregiving experience, location of ACP consultation, participation of second-degree relatives, and the intention to participate in ACP.ResultsData from 2337 participants were extracted from electronic records. There was high consistency in the willingness to refuse LST and ANH, with significant differences noted between terminal diseases and extremely severe dementia. Additionally, ANH was widely accepted as a time-limited treatment, and there was a prevalent trend of authorizing a health care agent (HCA) to make decisions on behalf of participants. Gender differences were observed, with females more inclined to decline LST and ANH, while males tended towards accepting full or time-limited treatment. Age also played a role, with younger participants more open to treatment and authorizing HCA, and older participants more prone to refusal.ConclusionDiverse preferences in LST and ANH were shaped by the public’s current understanding of different clinical states, gender, age, and cultural factors. Our study reveals nuanced end-of-life preferences, evolving ADs, and socio-demographic influences. Further research could explore evolving preferences over time and healthcare professionals’ perspectives on LST and ANH decisions for neurological patients..

Challenges and support experienced by family caregivers seeking antiretroviral therapy services for children living with HIV/AIDS: a phenomenological study in Ghana.

Family caregivers of children living with HIV/AIDS in most cases are found to be overwhelmed and under-resourced, yet they are believed to be the primary source of support for children living with HIV/AIDS. Family caregivers experience different challenges that affect their children's antiretroviral therapy (ART) adherence. This study explored the lived experiences of family caregivers of children living with HIV/AIDS who sought ART services for these children at the St Joseph's Hospital of Jirapa, Ghana. Using a qualitative phenomenology design and a semistructured in-depth interview guide and using purposive sampling, data were gathered from 13 family caregivers of children living with HIV/AIDS receiving ART treatment at St Joseph's Hospital, Jirapa following ethical approval. All interviews were audio-taped and transcribed verbatim. Reflexive thematic analysis was used to analyse the transcribed data. Six themes were generated: five challenges and one support. Family caregivers of children living with HIV/AIDS experienced: (1) Financial challenges, (2) Human-related challenges, (3) Challenges at HIV testing and counselling (HTC) centres, (4) Challenges with transportation, (5) Challenges in disclosing children's HIV status to them and (6) Support received from HTC and their family members. Family caregivers of children living with HIV/AIDS experience daunting challenges in their quest to care for their children. Governmental and non-governmental HIV/AIDS programme support should include small business skills training and acquisition including capital to help set up small-scale businesses for such caregivers to reduce their financial challenges. Access to ART at clinics closer to caregivers is also key to promoting adherence. Family and community support has been recognised as key to enhancing ART adherence. Education of caregivers on policy regarding disclosure of the HIV/AIDS status of children, the need to work to reduce the time spent by caregivers at HTC, and ensuring privacy by limiting access to HTCs to only caregivers and their children, are important to enhancing adherence.

"Walk me through the final day": A thematic analysis study on the family caregiver experience of the Medical Assistance in Dying procedure day.

Legalization of assisted dying is progressively expanding worldwide. In Canada, the Medical Assistance in Dying Act became law in 2016. As assisted dying regulations evolve worldwide, comprehending its subjective impact and broader consequences, especially on family members, becomes pivotal for shaping practice, policy, and training. The goal of this study is to understand the experience of family caregivers on the assisted dying procedure day. Qualitative, thematic analysis, research using semi-structured interviews. Family caregivers of patients who received assisted dying in two hospitals in Canada were recruited. Interviews were conducted at least 6 months after patient death. Conceptual saturation was achieved after analyzing 18 interviews. While caregivers expressed gratitude for the availability of Medical Assistance in Dying, they also described the procedure day as potentially jarring and unsettling. We identified five aspects that shaped their experience: attuned support from the clinical team; preparation for clinical details; congruence between the setting and the importance of the event; active participation and ceremony; and pacing and timing of the procedure. Together, these aspects impacted the level of uneasiness felt by caregivers on the procedure day. This study emphasized the importance of a family-centered approach to delivering Medical Assistance in Dying. It underscored recognizing the needs of family caregivers during the procedure day and offering strategies to ease their experience. Healthcare providers in jurisdictions where assisted dying is legal or deliberated should consider the applicability of these findings to their unique context.

The Experiences of Family Caregivers After Losing a Patient with Advanced Cancer: A Qualitative Study

Background: In patients with advanced cancer, family caregivers are crucial in providing care throughout the illness, particularly towards the end of life. These caregivers often face unique challenges and emotions that may differ significantly from those experienced by other family members following the patient’s death. Objectives: The purpose of this study was to explore the experiences of family caregivers following the loss of a patient with advanced cancer. Methods: A qualitative study was conducted in Iran from June 2023 to January 2024 to explore the experiences of family caregivers after the death of a patient with advanced cancer. Using purposive sampling, face-to-face, in-depth semi-structured interviews were carried out with 14 Iranian family caregivers of cancer patients. The interviews were subjected to conventional content analysis for thematic extraction. To ensure the trustworthiness and rigor of the study, Lincoln and Guba's criteria were applied. Results: Data analysis and abstraction resulted in the formation of three main categories with eight sub-categories. The categories extracted from the caregivers' experiences were: Caregiver's inconsolable mourning, Unforgettable experience of caring for loved ones, and Constant mind involvements. Conclusions: The different experiences of family caregivers after the death of a patient and the more intense emotions they experience indicate that caregivers require additional attention and support following the loss. Consequently, health systems should identify these individuals during the patient care process and provide targeted support after the patient's death.

The Experiences of Family Caregiver and Clinician Facilitators Implementing a Co-Delivered Acceptance and Commitment Training (ACT) Intervention

Family caregivers of people with neurodevelopmental disabilities (NDDs) experience high levels of stress, anxiety, and depression, yet few interventions target their wellbeing. Moreover, most evidence-based interventions fail to include caregivers in their design and delivery despite evidence that caregivers can play a vital role in enhancing the success of interventions to other caregivers. The present study explored the experiences of caregivers and clinicians who worked in partnership to co-deliver an Acceptance and Commitment Training (ACT) intervention to caregivers of people with NDDs in the community.Caregiver and clinician facilitators completed an open-ended survey asking about their experiences co-facilitating an evidence-based, group ACT intervention. Thematic analysis was used to analyze the data. Elements of successful partnerships, the benefits and challenges co-leading the intervention, and considerations for future implementation efforts were explored. Findings revealed the complementary contributions of facilitators’ diverse perspectives, experiences and skills, as well as how regular communication, trust, and flexibility supported successful partnerships. Benefits of co-facilitating included connection with others and personal growth, while challenges included emotional costs, capacity and compensation. Taken together, results highlight ways to support the successful implementation of an ACT intervention co-led by caregivers and clinicians, as well as other partnered interventions.

Examining the Social Networks Types and Their Effects on Caregiving Experience of Family Caregivers for Individuals with Dementia: A Mixed-methods Study

Abstract Background and Objectives Social networks are crucial to personal health, particularly among caregivers of individuals with dementia; however, different types of social networks among caregivers of those with dementia and how these differences are associated with caregiver burden and positive appraisal, remain underexamined. This study aims to depict dementia caregivers’ social network types, related factors, and impact on caregiving experiences. Research Design and Methods A questionnaire-based survey was conducted with a total of 237 family caregivers of individuals with dementia nested additional semi-structured interviews conducted with 14 caregivers in Chongqing, China. A quantitative study was designed to collect data on personal and situational information, social networks, caregiver burden, and positive aspects of caregiving. Qualitative data were collected via semi-structured interviews. Latent class analysis and multivariate regression analyses were applied to quantitative data, and inductive content analysis to qualitative data. Results The three social network types—family-limited (n=39, 16.46%), family-dominant (n=99, 41.77%), and diverse network (n=99, 41.77%)—differed in age and sex of caregivers and individuals with dementia, stage of dementia, and caregiving intensity. Caregivers in family-dominant networks had a lower caregiver burden (β= -0.299, P= 0.003) and greater positive aspects of caregiving (β= 0.228, P= 0.021) than those in family-limited networks. Three themes--accessibility, reciprocity, and reliance--emerged as facilitators and barriers when asking for support. Caregivers frequently cited the perception of economic, practical, and emotional support, yet reported a lack of adequate formal support from healthcare providers. Discussion and Implication Family caregivers of individuals with dementia have different social network types that vary considerably among socio-cultural contexts and perceive various types of support from social networks. Solid family networks and diverse social networks are contributors to long-term dementia care.

Experiences of family caregivers in dealing with cases of advanced breast cancer: a qualitative study of the sociocultural context in Punjab, Pakistan

BackgroundPatients with advanced breast cancer require consistent help and support from family caregivers. These caregivers often endure financial burdens and psychological stress, with their experiences significantly influenced by sociocultural factors. This study aims to explore the experiences of family caregivers of advanced breast cancer patients in Punjab province, Pakistan.MethodsData was collected through in-depth interviews with fifteen family caregivers of advanced breast cancer patients in three major cities of Punjab, Pakistan. Caregivers, who had been in close contact with the patient for the last two years, were purposively sampled from five major hospitals. The data was analyzed using thematic analysis.ResultsThe study revealed that the experiences of family caregivers are deeply rooted in the sociocultural context. Key themes identified include social responsibility and cultural reciprocity norms; limited awareness and mobility options for caregivers; financial responsibility and strain; impacts of beauty myths and shyness on caregiving attitudes and decisions; the stressful and emotional nature of caregiving; treatment perspectives influenced by social groups; challenges in consulting male physicians and associated stigma; the role of religious beliefs in caregiving; and stress management, with religion often being a coping mechanism. These factors can contribute to delayed treatment decisions for patients.ConclusionsFamily caregivers are crucial in facilitating timely treatment decisions for advanced breast cancer patients in the Pakistani context. To minimize treatment delays and alleviate caregiver stress, addressing sociocultural barriers in care-seeking is essential. A tailored approach, considering sociocultural and religious factors, is imperative for the management and early diagnosis of breast cancer, necessitating appropriate policymaking and implementation.

Palliative and End-of-Life Family Caregiving in Rural Areas: A Scoping Review of Social Determinants of Health and Emotional Well-Being.

Introduction: Due to their remote location, rural-dwelling family caregivers (FCGs) experience geographic and psychosocial challenges when providing home-based palliative and end-of-life (PEOL) care for their care recipient. Limited research has evaluated the social and environmental factors that may compound FCG burden and contribute to adverse emotional health outcomes among rural-dwelling PEOL FCGs. Objective: To characterize the social determinants of health (SDOH) that affect the provision of PEOL care among rural-dwelling FCGs, along with symptoms of anxiety and depression. Methods: A scoping review was conducted using Arksey and O'Malley's Framework. Searches were conducted in PubMed, CINAHL, PsycINFO, and Cochrane, and 511 articles published between 2010 and 2023 were screened. Keywords included "rural," "PEOL care," and "FCG." Inclusion criteria included FCGs, ages ≥18 years; findings reported on SDOH, anxiety, and/or depressive symptoms; within a rural context; and U.S. based. Findings: In this review, 18 studies met eligibility and were included. Apart from six studies that specifically investigated Black and Latinx FCGs, most FCGs were middle-aged White female spouses. SDOH impacting PEOL care provision included: limited access to PEOL services due to remote distance and travel needs for services; low health literacy in medical terminology and patient symptom management; limited English-language proficiency; perceived clinician racial and ethnic discrimination; financial vulnerabilities affecting health care coverage; and underdeveloped infrastructure. These barriers negatively impacted decision making, communication with clinicians, and patient symptom management. FCGs reported emotional distress related to patients' symptom management and limited opportunities for respite. There was a limited investigation of emotional well-being and minimal interventions aimed toward improving rural-dwelling FCG emotional health. The presence of community support promoted hospice use and facilitated the provision of care. Conclusions: FCGs are vulnerable to adverse emotional health when providing home-based PEOL care. Research is needed to develop supportive interventions (e.g., digital health) for rural-dwelling FCGs.

Family Caregiver Experiences with Neurobehavioral Changes in Traumatic Brain Injury Survivors: A Qualitative Exploration of Needs and Concerns

Family Caregiver Experiences with Neurobehavioral Changes in Traumatic Brain Injury Survivors: A Qualitative Exploration of Needs and Concerns

Caregiving experiences of family caregivers of patients with schizophrenia in a community: a qualitative study in Beijing

ObjectivesThis study aims to understand the caregiving experiences of family caregivers of people with schizophrenia in a community.DesignA qualitative study based on phenomenological analysis was conducted through in-depth interviews.SettingThis study...

Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home (ACEPATH): Codesigning an intervention to improve patient and family caregiver experiences.

Returning home from the hospital for palliative-focused care is a common transition, but the process can be emotionally distressing and logistically challenging for patients and caregivers. While interventions exist to aid in the transition, none have been developed in partnership with patients and caregivers. To undergo the initial stages of codesign to create an intervention (Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home [ACEPATH]) to improve the experience of hospital-to-home transitions for adult patients receiving palliative care and their caregiver(s). The codesign process consisted of (1) the development of codesign workshop (CDW) materials to communicate key findings from prior research to CDW participants; (2) CDWs with patients, caregivers and healthcare providers (HCPs); and (3) low-fidelity prototype testing to review CDW outputs and develop low-fidelity prototypes of interventions. HCPs provided feedback on the viability of low-fidelity prototypes. Three patients, seven caregivers and five HCPs participated in eight CDWs from July 2022 to March 2023. CDWs resulted in four intervention prototypes: a checklist, quick reference sheets, a patient/caregiver workbook and a transition navigator role. Outputs from CDWs included descriptions of interventions and measures of success. In April 2023, the four prototypes were presented in four low-fidelity prototype sessions to 20 HCPs. Participants in the low-fidelity prototype sessions provided feedback on what the interventions could look like, what problems the interventions were trying to solve and concerns about the interventions. Insights gained from this codesign work will inform high-fidelity prototype testing and the eventual implementation and evaluation of an ACEPATH intervention that aims to improve hospital-to-home transitions for patients receiving a palliative approach to care. Patients and caregivers with lived experience attended CDWs aimed at designing an intervention to improve the transition from hospital to home. Their direct involvement aligns the intervention with patients' and caregivers' needs when transitioning from hospital to home. Furthermore, four patient/caregiver advisors were engaged throughout the project (from grant writing through to manuscript writing) to ensure all stages were patient- and caregiver-centred.

Caregiving consequences in cancer family caregivers: a narrative review of qualitative studies.

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.

I-Poems: A Window Into the Personal Experiences of Family Caregivers of People Living With Advanced Cancer.

To date, there is little understanding of how caring during advanced cancer can be a transformational experience for personal becoming for family caregivers (FCGs). FCGs experience personal becoming as they create their own meaning of health and illness and choose patterns relating to the self-identity of the past while reaching forward into the unknowns. Gaining greater insight into a potentially positive aspect of cancer caregiving can contribute to family caregiver well-being and quality of life. This paper identifies I-Poems within cancer caregiver narratives and explores them for themes of personal becoming. The narrative environment created space for FCGs to construct and share their voices; at the same time, the analytic method of poetic inquiry provided the voice of the FCGs to be seen, heard, and contextually explored. As a secondary analysis, we used five cancer caregiver narrative texts obtained from the primary study to create individual I-Poems. Each of the I-statements within the cancer caregiver narrative texts was lifted and repositioned into a poem format while retaining the chronological order and voice of the participant. We then explored the I-Poems for converging themes of personal becoming as emerged from the primary narrative-thematic analysis. I-Poems were created from each of the five participants caregivers' narratives and then explored for themes of personal becoming. Each of the participant stories is briefly introduced, followed by their I-Poem. We found that the I-Poems converged with emergent themes and provided a first-person representation of their caring journey and transformation of being. I-Poems are a postmodern form of poetic inquiry that can be used alongside thematic analysis to explore personal meaning of caring for someone with advanced cancer and how FCGs experience personal transformation of self. While we found I-Poems to be a meaningful and useful form of analysis for some narrative data, we propose an evolved genre of poetic inquiry-We-Poems-to be used in dyadic nursing research and with FCGs who are in partnered relationships.

Dementia Caregiver Experiences: Insights From a Telephone-Based Support Program.

Dementia caregivers face daunting challenges as both the oldest subpopulation of those providing unpaid care and the most at risk of adverse health outcomes as a result of their role, including depression, anxiety, and increased mortality. To better understand the experiences and needs of dementia caregivers, a qualitative content analysis was conducted of secondary data extracted from call logs (N = 569) recorded by a provider-initiated, telephone-based support program. Experiences identified from the call logs were coded, categorized, and ranked to determine the most prevalent dementia caregiving-related experiences. Features of the program, particularly the semi-structured call format and directionality of calls, helped to uniquely capture common experiences of family caregivers and their day-to-day concerns. Findings from this analysis reflect the high prevalence of caregiver mental and emotional health-related concerns. This analysis supports the development of interventions that align with the experiences of dementia caregivers.

Understanding the experience of family caregivers of patients with leukemia: a qualitative analysis of online blogs

Although family caregiving is a demanding task, it has the potential to increase the significance and satisfaction of the caregiving process, while also enabling better response to the patient’s condition. This study aims to qualitatively explore, describe and analyze the experiences of family caregivers who are taking care of patients with leukemia. With an inductive thematic analysis, data collected from 997 online blog posts generated by 32 Chinese family caregivers of both adult and pediatric patients with leukemia were thoroughly examined. Through a detailed analysis of the blog posts, three main themes were identified: (1) family caregivers’ (FCGs’) reactions to the leukemia diagnosis, (2) challenges faced in caregiving, and (3) effective coping strategies. The study reveals significant implications for improving the quality of life for family caregivers and enhancing health services for patients with leukemia. Gaining a comprehensive understanding of challenges and hardships faced by FCGs can shed light on enhancing the current medical services. A detailed account of the financial and psychological burdens experienced by FCGs offers valuable insights that can influence the decision-making of healthcare institutions and policymakers, facilitating the implementation of effective medical reforms. The findings underscore the importance of addressing the psycho-social needs of family caregivers, thereby suggesting the need of improved implementation of effective psycho-social support to enhance their overall quality of life. It is recommended that future research focus on developing more socially integrated approaches specifically tailored for family caregivers of patients with leukemia. While this study is primarily exploratory and descriptive, it forms a foundation for further investigation and understanding of the comprehensive family caregiving system for patients with leukemia.

Forgone healthcare for medically vulnerable groups during the pandemic era: experiences of family caregivers of young adults with substance use disorders in Zambia.

Scholars worldwide have defined the COVID-19 pandemic as a mass-disabling event of our time. The situation is grave for families experiencing financial hurdles while caring for young adults in recovery from addiction problems. Using semi-structured interviews with 30 purposively selected family caregivers (FCGs) of young adults with substance use disorders (SUDs) in Lusaka, Zambia, this study reveals several factors influencing forgone healthcare for this medically vulnerable group. Financial challenges and huge out-of-pocket bills; caregivers' perceived far-fetched recovery of the young adult; the cost of medication and transportation; the young adult's little perceived need for healthcare service use, their runaway and treatment elusive tendencies; caregiver concerns about contracting the virus, and the stigma associated with it; and a fragmented child and adolescent mental health system influenced forgone healthcare. The young adults were often unavailable for days and months, posing challenges to the continuity of care. Despite caregivers' acknowledgment of the availability of healthcare professionals, young adults with problematic substance use had limited access to SUD recovery services, resulting in adverse health outcomes. Results also show that most family caregivers encountered challenges in accessing and purchasing psychotropic medications, which were difficult to find during the lockdowns. Some family caregivers lost their sources of income by being laid off from work due to the pandemic and skipping work to attend to caregiving responsibilities. Most of those in self-employment had to close their business and stay home to look after their youth. Several caregivers kept their youth at home because they failed to access private residential SUD recovery services. Family caregivers mostly relied on outpatient public health services, alternative medicine from traditional healers, and faith-based healing, all of which some young adults rarely accessed because of their problematic behaviors of escaping healthcare. These identifiable risk factors, and their detrimental consequences highlight the need for interventions to improve healthcare access for this vulnerable population. Supporting FCGs of addicted young adults is crucial in ensuring the well-being of both the caregivers and care recipients. Further research is warranted to explore potential solutions, such as peer support programs, policy changes, and education initiatives for carers and recipients in the (post) pandemic era.

Developing a conceptual model for understanding caregiving experience and their impacts on quality of life for Chinese breast cancer family caregivers: A qualitative study.

The purpose of this study was to understand the caregiving experiences of breast cancer family caregivers and explore the profound impacts of those experiences on their quality of life. A qualitative research method was used. We extended invitations to 23 family caregivers of outpatients and inpatients receiving breast surgery and oncology treatments in Taiyuan, China, to participate in semi-structured interviews. The interviews were audio-recorded and transcribed verbatim. Thematic analysis was employed to analyse the interview data. Four themes and associated categories were identified: (1) changes in family dynamics, (2) the socio-medical context, (3) interactions between family and society, (4) self-efficacy and nine subthemes and their related categories, where virtually all participants expressed future uncertainty, emotional contagion, and personal challenges, and self-efficacy had a moderating influence on the first three themes. This study did not involve direct participation of patients or the public. However, their experiences and perspectives on caregiving were indirectly reflected through the insights provided by the family caregivers who participated in the interviews. Their valuable input contributed to a deeper understanding of the caregiving experience and its impact on the quality of life for Chinese breast cancer family caregivers.

The use of ecological momentary assessment for family caregivers of adults with chronic conditions: A systematic review.

Ecological momentary assessment (EMA) as a real-time data collection method can provide insight into the daily experiences of family caregivers. This systematic review aimed to synthesize studies involving EMA completed by family caregivers of adults with chronic conditions. A systematic search was conducted within six databases for articles published from the inception of the database through September 2023. We extracted the characteristics of the included studies and data on EMA-specific methods to determine the quality of the included studies. A total of 12 studies involving EMA completed by family caregivers of adults with chronic conditions were identified, with almost all studies focused on caregivers of persons with Alzheimer's or dementia-related conditions. The average compliance rate across the included studies was 75%, below the recommended rate. In addition, most of the included studies did not collect the family caregivers' daily activities and care contexts in their responses (i.e., affect, stress, well-being, care demand, and fatigue) to the EMA prompts. This review showed that using EMA to collect information on family caregivers of adults with chronic health conditions appeared feasible and acceptable. However, the methodology or design of using EMA to collect caregiver information in this population is still preliminary. The limited number of existing studies that have used EMA to capture the daily experiences of family caregivers does not provide key information that could improve understanding of caregivers' emotional experiences and well-being in real-life situations. We identified gaps in the literature that warrant additional EMA studies for this population.

Challenges Faced by Family Caregivers of Patients with Spinal Cord Injury

Background: Spinal Cord Injury (SCI) presents significant challenges not only to the individuals directly affected but also to their family caregivers. The sudden onset of SCI demands immediate adaptation to new caregiving roles, inducing physical, financial, emotional, and psychological strains on caregivers. Understanding these dynamics is crucial for developing supportive interventions that can alleviate the burdens faced by caregivers and improve the quality of care for SCI individuals. Objective: This study aimed to explore the experiences of family caregivers of individuals with SCI, focusing on the challenges they face, the roles they assume, the strains encountered, and the coping strategies they employ. Methods: A qualitative exploratory study was conducted among family caregivers of individuals with SCI at the Punjab Institute of Neurosciences, Lahore. Purposive sampling was used to select participants who were engaged in caregiving for at least 10 hours per week. Data were collected through semi-structured interviews, utilizing a specifically designed interview question grid. Demographic data were analyzed using SPSS software, while thematic analysis of interview data was conducted using NVivo 12 software. The study adhered to ethical standards, including obtaining informed consent from all participants. Results: The study comprised an equal distribution of male and female participants, with a majority engaged in caregiving for nine to twelve hours per week. Four main themes emerged: the initial challenge of becoming a caregiver, the multifaceted roles of caregiving, the strains of caregiving, and the coping strategies adopted. Caregivers reported significant physical strain, financial burdens, emotional and psychological stress, and relied on a combination of spiritual beliefs, optimism, and social support to navigate their caregiving responsibilities. The study also highlighted the importance of psychotherapy and comprehensive caregiving training sessions for caregivers. Conclusion: Family caregivers of individuals with SCI face substantial challenges that impact their physical, financial, emotional, and psychological well-being. Supportive interventions, including psychotherapy, comprehensive training, and the establishment of support groups, are essential to aid caregivers in managing the complexities of their roles effectively. Further research is needed to quantify these challenges and evaluate the effectiveness of proposed interventions.