Caring in Silence: Exploring the Lived Experiences of Employed Informal Caregivers of Older Persons in Iran.

Caregiver burden is a public health problem affecting the emotional, physical, and mental health of informal caregivers of persons with severe mental health conditions worldwide. When caregivers feel overwhelmed, their ability to provide quality care is compromised. Although global evidence highlights the need for interventions to alleviate caregiver burden, such evidence is limited in low-resource settings, particularly in sub-Saharan Africa. This study addressed this gap by exploring service providers’ perspectives on formal and informal mental health services aimed at alleviating caregiver burden in rural South Africa. Descriptive qualitative design was adopted, and seven semi-structured individual interviews and two focus groups were conducted with twenty-nine (n = 29) mental health service providers in the Bushbuckridge municipality. Reflexive thematic analysis was performed using NVivo 12 software. Two themes were identified: caregiver and health system support strategies, and community and structural support strategies. Participants highlighted the need for caregiver-oriented mental health services and proposed multilevel strategies, including caregiver empowerment, psychoeducation, support groups, family therapy, and psychosocial rehabilitation. They also emphasised community-based support, awareness, respite and recreational services, intersectoral collaboration, and the development of targeted policies and guidelines to strengthen support for informal caregivers. The findings reflect service providers’ practical understanding of caregivers’ complex challenges and a clear vision for actionable, context-appropriate strategies to strengthen caregiver support. Given the service providers’ frontline role in mental health care, these perspectives are essential for informing the planning and implementation of interventions that are realistic, acceptable, and sustainable in low-resource settings. Future research should focus on developing and testing these strategies to enhance support systems for informal caregivers and improve outcomes for both caregivers and people living with mental health condition.

Informal caregivers for persons with Alzheimer's disease and related dementias (ADRD) have become an integral part of the long-term health care system. They are relied on to provided day-to-day care that is challenging, complex, and often spans several years. Most of the research on informal caregivers for persons with ADRD have focused on spousal caregiving, mother-daughter dyads, and daughters. There is sparse literature on informal non-spousal male caregivers for persons with ADRD. The objective of this research was to obtain an understanding of the experiences of informal non-spousal male caregivers for persons with ADRD. This descriptive qualitative pilot study consisted of in-depth one-on-one interviews with three informal non-spousal male caregivers for persons with ADRD. Four themes emerged through data analysis: 1) the male perspective and experience of caregiving, 2) relationship dynamics, 3) caregiving challenges, and 4) finding meaning within caregiving. Conclusion: Similar to other caregivers, informal non-spousal male caregivers assisted with transportation, managing medical appointments, as well as bathing and personal care. Differences with other caregivers, specifically female caregivers, emerged in terms of descriptions of traditional versus non-traditional gender roles. The implications of this study are that public policies, support services and medical professionals need to understand and be able to address the different experiences and needs of informal non-spousal male caregivers.

Elderly persons are at risk of experiencing burns and require support from both formal and informal caregivers. Informal caregiving in this situation has been minimally explored. Guided by the Stress Process Model, this study aimed at exploring the background, context, and stressors of informal caregivers of elderly burned persons during hospitalization. A qualitative descriptive design was utilized. Purposive sampling approach was used to recruit fourteen (14) informal caregivers who rendered care to elderly burned persons during hospitalization. Interviews were conducted and transcribed verbatim following which directed content analysis was undertaken deductively. Three categories and six subcategories emerged which characterize the background, context, and stressors of informal caregiving to elderly burn patients. All the injuries occurred in the home setting and its sudden nature led to varied postburn emotional responses which characterized the context of burns caregiving. Primary stressors that emerged were related to the injury, actual caregiving demand, and concerns regarding increasing frailty levels. Secondary stressors identified were financial concerns and lifestyle changes. The findings suggest that the occurrence of burn injury served as a precursor to postburn stress response among informal caregivers. Increasing frailty levels, adequacy of household safety measures, and financial issues were key concerns which emphasize the need for psychosocial/transitional support, innovative healthcare financing measures, and continuing education on burns prevention in the home setting.

IntroductionA greater dependency on informal home-based caregivers to assist patients in their homes stems from Rwanda’s rising palliative care needs and the burden of terminal illnesses. These caregivers play a critical role in addressing patients’ physical and emotional needs and assisting with daily activities. However, in low-resource settings like Rwanda, limited attention has been given to understanding their lived experiences and the challenges they face. This study primarily aimed to explore the lived experiences and caregiving challenges of informal home-based caregivers providing palliative care. A secondary aim was to describe the range of life-threatening conditions being managed at home under their care.MethodsA qualitative descriptive study design was used to gain in-depth insights into the common palliative conditions managed at home, the caregiving practices employed, and the challenges experienced by informal caregivers. Twenty (20) participants were purposively selected from Nyamasheke and Rusizi districts in Rwanda, all of whom were providing home-based care to terminally ill patients. Data were collected through in-depth individual interviews and analyzed thematically using open coding in Atlas.ti software.ResultsInformal home-based Caregivers managed an assortment of chronic and life-threatening illnesses, assuming challenging responsibilities like medication administration, wound care, mobility assistance, and emotional support. Analysis revealed a hierarchy of interrelated themes reflecting the multifaceted challenges of caregiving. These included Caregiver Burden, Financial and Material Constraints, and Structural and Systemic Challenges, each underscoring the intense physical, emotional, and logistical demands Informal home-based caregivers faced. Additional themes such as the Lived Experience of Illness, Coping Mechanisms, and Community and Informal Support highlighted how caregivers navigated these pressures, often with limited guidance or resources. Finally, the theme of Recommendations for Support emerged, offering insight into potential interventions to better assist caregivers. These themes were consistent across caregiving contexts, regardless of the specific illness involved.ConclusionUnspecified wound cancer with multiple chronic diseases and advanced illnesses together with hypertension and stroke complications are among the major palliative conditions reported and managed at home. Informal home-based caregivers face substantial responsibilities and numerous challenges during the provision of palliative care at home. Caregiving in this context remains undervalued and under-supported. There is an urgent need for targeted support systems and policy reforms to strengthen home based caregiver to improve the quality of life of home-based caregivers in Rwanda.

IntroductionThe prevalence of dementia is increasing without a known cure, resulting in an increasing number of informal caregivers. Caring for a person with dementia results in increased stress and depressive...

BackgroundBoth formal and informal caregivers play pivotal roles in long-term dementia care, demonstrating a shared dedication to providing comprehensive care and support for individuals with dementia. These two caregiver groups exhibit both similarities and differences in their caregiving experiences, contributing to variations in subjective well-being outcomes. However, limited research has compared the psychological well-being and self-rated health of these two caregiver groups, or explored the influencing factors. This knowledge gap hinders the development of targeted interventions and support strategies tailored to different caregiving contexts and informs supportive policymaking.MethodsA cross-sectional survey was conducted among 440 caregivers of individuals with dementia, including 229 informal caregivers and 211 formal caregivers. Psychological well-being was assessed using the short version of Ryff’s Psychological Well-being Scale, while self-rated health was measured using a summative item from a validated instrument. Caregiving appraisal and coping were evaluated separately using the Chinese version of the Caregiving Appraisal Scale and Ways of Coping Questionnaire. Descriptive statistics, t-tests, Chi-square tests, and multivariate stepwise regression analyses were employed for data analysis.ResultsFormal caregivers exhibited significantly better psychological well-being and self-rated health compared to informal caregivers. Moreover, formal caregivers reported more positive caregiving appraisals than their informal counterparts. However, there was no statistical difference in coping strategies between the two groups. The psychological well-being of informal caregivers was primarily influenced by coping (standardized β = 0.309) and caregiving mastery (standardized β = 0.270). For formal caregivers, their psychological well-being was mainly influenced by caregiving satisfaction (standardized β = 0.267) and caregiving intensity (standardized β = 0.242). Both informal (standardized β = 0.354) and formal caregivers’ (standardized β = 0.156) self-rated health were influenced by passive coping.ConclusionsThis study provides valuable insights for developing tailored interventions and support systems aimed at improving the psychological well-being and self-rated health of informal and formal caregivers of people with dementia. To enhance the psychological well-being of informal caregivers, interventions targeting improvements in coping skills and caregiving mastery can be designed; while for formal caregivers, interventions focusing on enhancing caregiving satisfaction and effective coping strategies may be beneficial. Improving the passive coping and caregiving appraisals may help improve the self-rated health of both groups.

BackgroundSafe medication management for older adults after hospital discharge requires a well-coordinated, interprofessional, patient-centered approach. This study aimed to describe the perceived needs for collaborative medication management for older adults taking several different medications at home after hospital discharge.MethodsA qualitative descriptive study was conducted using semi-structured interviews with older adults (n = 28), informal (n = 17), and professional caregivers (n = 13).ResultsFindings revealed four main needs: older adults and informal caregivers’ perceived needs for greater involvement in discharge planning; older adults’ perceived needs to be informed, listened to, and to be actively involved in decision-making; informal caregivers’ perceived needs for help in supporting and coordinating medication management; and older adults’ and informal and professional caregivers’ perceived needs for better communication and coordination between professional caregivers.ConclusionThis study revealed two underutilized pathways towards improving collaborative medication management: medication follow-up involving a community healthcare professional taking an overarching responsibility and empowering older adults and their informal caregivers in medication management after hospital discharge.

Background: Current research indicates that caregivers of dementia patients often experience a great deal of stress related to caregiving. Most of these caregivers are informal caregivers without prior knowledge or training in dementia care. Previous studies indicate that informal caregivers often experience stress during this postdiagnosis period due to a lack of high-quality and available information, education, and support services tailored to meet the unique needs of families caring for a dementia patient. Currently published approaches to providing caregivers with information are largely centered on a one-size-fits-all approach. Purpose: This descriptive qualitative study was conducted to examine the lived experience of lay caregivers of persons with dementia in obtaining information to support decision-making and the potential for the use of consumer education technology as an information source. Aims: The specific aims of this study were to: (a) explore caregivers' experiences in obtaining information regarding patients diagnosed with dementia and explore sources of information caregivers seek to access to support their decision-making in caring for elders with dementia; (b) explore caregivers’ perceptions of stages of dementia as a continuum in relation to information seeking; and (c) explore current usage and attitudes of dementia caregivers in accessing and using consumer information technology for support through their caregiving experience. Methods: A descriptive qualitative study using a constructivist approach was used to investigate dementia caregivers’ experiences in obtaining information and to explore the current usage and attitudes of dementia caregivers in using consumer informationtechnology. Convenience sampling resulted in recruiting 15 adult participants who were informal family caregivers for a patient with dementia. Saturation was achieved when new data did not appear to yield any additional thematic categories. Semi-structured audio-recorded interviews, demographic data information, and two surveys (eHEALS and FAST) were administered. Data analysis was completed using descriptive statistics and inductive thematic analysis. Findings: Five major themes with sub-themes emerged from the analysis of participants experiences: (1) Caregiver support needs; (2) Ability to approach the patient; (3) Caregiver Knowledge and education needs, (3a) Resource needs, (3b) Casting about for information; and (4) Caregiver self-confidence, (4a) Lack of medical knowledge, (4b) Ability to identify subtle changes within the patient that may warrant attention. Implications for Research: Findings suggest a need for a single point of information that can provide service coordination and support at each point in the illness trajectory to improve the efficiency and quality of care of patients with dementia. Future research into ways

Skilful communication prompts quality patient care. Informal caregivers occupy a crucial role when caring for hospitalised older patients living with frailty. However, skilful communication with both patients and informal caregivers during ward rounds has not been studied. Thus, we aimed to explore communication preferences of patients and informal caregivers during ward rounds. We conducted semi-structured interviews with hospitalized patients and informal caregivers until information redundancy occurred. We used inductive coding of the transcribed interviews followed by a reflexive thematic analysis. The study included 15 patients and 15 informal caregivers. Patients had a median age of 85years (range 75-100years) and seven patients were females. Informal caregivers' median age were 45years (range 38-80years) and 13 were females. Three themes were generated: (1) building relationships and conveying information, (2) alleviating informal caregiver strain and (3) sharing the decision-making process. Themes highlighted the importance of collaborative and empathetic approaches in healthcare interactions, emphasizing interpersonal communication skills, such as fostering professional relationships. The interviews unveiled informal caregiver burden stemming from disempowerment during hospital discharge process and managing mistrust within the healthcare system. The shared decision-making process should address patients' and informal caregivers' needs and circumstances. Communication preferences of a population of older patients living with frailty and informal caregivers during ward rounds encompass interpersonal communication, demonstrating ample time, and being seen as a human being. Informal caregivers value being included in the decision-making process. Skilful communication includes for doctors to recognize informal caregivers' narratives and burdens.

Caregiving for persons with heart failure (HF) varies based on the individual, family, and home contexts of the dyad, yet the dyadic context of HF caregiving is poorly understood. The aim of this study was to explore dyadic perspectives on the context of caregiving for persons with HF. Family caregivers and persons with HF completed surveys and semistructured interviews. Investigators also photographed caregiving areas to complement home environment data. Descriptive qualitative analysis resulted in 7 contextual domains, and each domain was rated as strength, need, or neutral. We grouped dyads by number of challenging domains of context, categorizing dyads as high (≥3 domains), moderate (1-2 domains), or minimal (0 domains) needs. Quantitative instruments included the 36-item Short Form Health Survey, ENRICHD Social Support, HF Symptom Severity, and Zarit Burden Interview. We applied the average score of each quantitative measure to the groups derived from the qualitative analysis to integrate data in a joint display. The most common strength was the dyadic relationship, and the most challenging domain was caregiving intensity. Every dyad had at least 2 domains of strengths. Of 12 dyads, high-needs dyads (n = 3) had the worst average score for 7 of 10 instruments including caregiver and patient factors. The moderate-needs dyads (n = 6) experienced the lowest caregiver social support and mental health, and the highest burden. Strengths and needs were evident in all patient-caregiver dyads with important distinctions in levels of need based on assessment of multiple contextual domains. Comprehensive dyadic and home assessments may improve understanding of unmet needs and improve intervention tailoring.

Background: A secure attachment style of informal caregivers is important for the care of older adults at home. Informal caregivers who have secure attachment style to care for older adults, can effectively provide care for older adults. Objective: A sequential explanatory mixed-method design was introduced to study the factors predicting secure attachment and explain informal caregivers’ perceptions. Materials and Methods: 140 informal caregivers were selected from sub-district health-promoting hospitals from provinces in the northeastern Thailand by using the multi-stage random sampling method. The parameters included were caregivers’ personal information, satisfaction, empathy, health status, and caregivers’ attachment. Five experts in the field considered the content validity of all the measurements. The reliability of the four measurements was verified by applying Cronbach’s alpha coefficient, yielding 0.83, 0.70, 0.82 and 0.74. The researchers analyzed the data obtained from descriptive statistics and hierarchical regression analysis. A qualitative descriptive study was performed using semi-structured interviews, and data were analyzed using thematic analysis. Results: The results of quantitative data (a cross-sectional design) revealed that caregivers’ health status was considered the strongest predictor (β = .362, t = 5.208, p <.001) of secure attachment, followed by satisfaction, gender (female) and empathy. The qualitative data results revealed that four factors, i.e., caregivers’ healthy status, caregivers’ satisfaction, caregivers’ empathy, and female gender, could help the caregivers provide better care. Conclusion: Informal caregivers with good health status exhibited secure attachment. Healthcare teams and nurses should implement a program promoting good health status for informal caregivers who care for older adults at home.

ObjectivesThis study aimed to explore informal rural caregivers’ perceived preparedness to detect and respond to the signs of worsening health conditions in patients recently discharged from hospital and at risk...

Poster 44: Health-Related Consequences of Caregiving Identified by Caregivers of Persons With a Spinal Cord Injury

Stigma and workplace discrimination have been identified as prominent challenges to employment following cancer. However, there has been limited examination of how stigma develops in work contexts and how it influences cancer survivors' return to work process and their disclosure decisions. In the broader study from which this paper emerges, we used an exploratory qualitative design to examine the return to work process (including workplace supports and accommodations) of cancer survivors. We conducted 40 semi-structured interviews with (i) cancer survivors (n = 16), (ii) health care/vocational service providers (n = 16), and (iii) employer representatives (n = 8). We used thematic analysis methods to analyze the data. In this paper, we present data related specifically to workplace stigma, discrimination, and disclosure. Contrasting perspectives were identified among our stakeholder groups regarding the existence and impact of stigma in the workplace. While most provider and employer representatives believed survivors were not likely to be stigmatized, cancer survivors themselves perceived cancer as a highly stigmatized illness in the workplace. Two inter-related elements were implicated in the development of workplace stigma following cancer: (1) ongoing misconceptions and fears associating cancer with death and (2) misperceptions regarding impacts on the workplace, including survivors' work abilities, productivity, reliability, the costs associated with their continued employment (e.g., workplace accommodations), and future impacts on the workplace related to cancer re-occurrence. Discriminatory behaviors, such as hiring discrimination, bullying, harassment, refusal of workplace accommodations, and limited career advancement opportunities, were also discussed. A supportive workplace, a desire to be open with co-workers, and a need to request supports and manage expectations were reasons provided for disclosure. Conversely, an unsupportive workplace, fear of discrimination, and a minimal need for assistance were reasons provided for not disclosing their cancer. Stigma and workplace discrimination are significant concerns for cancer survivors. Anti-stigma programs should target ongoing myths regarding cancer and survivors' right to work, work abilities and productivity, and incorporate survivors' voices to enhance understanding. Survivors, health care providers, vocational service providers, and employers should become familiar with anti-discrimination legislation and recognize stigma and discriminatory behaviors when they occur. Survivors require guidance to decide whether (or not) to disclose their cancer, how to respond to discriminatory behaviors, and how to best state their needs for workplace accommodations.

Spirituality, culture, and family resilience in Alzheimer's care: A qualitative descriptive study in Türkiye.