Caregiver Well-being Research Articles

Strategies and sacrifices of family caregiving in the Somali-American community: a qualitative study

BackgroundAmong the many pressing concerns of the Somali-American community, and other similar immigrant and refugee communities as they grow in the United States, is the provision of care for older adults and adults with disabilities. The implications of effective caregiving range from the facilitation of community building and place-making to the delivery and management of healthcare on a systemic level. However, little is currently known about Somali-American family caregivers, including their duties and responsibilities, primary concerns, and the impacts of surrounding influences on their ability to fulfill their role.MethodsSemi-structured interviews were conducted with 10 Somali-American family caregivers in Somali language. The resulting transcripts were translated into English by a professional interpreter and analyzed using an inductive thematic analysis approach. A key informant from the community was additionally consulted for insights regarding cultural nuances and interpretations of idiomatic expressions and concepts.ResultsThematic analysis of the reports revealed the principal themes of visitation, patient accompaniment, and self-sacrifice through acceptance and God-consciousness as pervasive and salient concerns across participants. Furthermore, the heightened stresses of the COVID-19 pandemic revealed just how severe the consequences can be when access to culturally habituated navigational tools and coping mechanisms are restricted.ConclusionsIn light of our findings, the growing concern for discrimination and sociocultural discord in the Somali-American community presents a particularly prescient threat to the well-being and sustainability of family caregivers. Their experiences must be understood and used to promote education and partnership between the healthcare system and the community in order to build trust and ensure a healthy future for this indispensable population.

Virtual reality-guided mindfulness intervention to enhance psychosocial well-being in caregivers of end-stage kidney disease patients: protocol for a mixed-methods pilot randomised controlled trial

IntroductionCaregivers of patients with end-stage kidney disease (ESKD) face significant challenges that contribute to caregiver burden, negatively impacting their psychosocial well-being. Virtual-reality (VR)-guided mindfulness interventions have shown promise in reducing...

Health-related quality of life of children and adolescents with sickle cell disease: An evolutionary concept analysis

The concept of Health-Related Quality of life (HRQOL) of children and adolescents with Sickle cell disease (SCD) is not clearly understood due to the lack of available studies. This review aimed to elucidate various attributes and related concepts of HRQOL in children and adolescents with SCD using Rodgers' (2000) concept analysis framework. A systematic search was performed to identify studies reporting the attributes, antecedents, consequences, surrogate terms, and related concepts of HRQOL in children and adolescents with SCD. The review included 75 articles, including 70 quantitative, two mixed-methods, and three qualitative studies. These were categorized into attributes, antecedents, consequences, surrogate terms, related concepts, and an exemplar of HRQOL in children and adolescents with SCD. The review identified nine important attributes. It includes multidimensional and dynamic concepts, acknowledging the illness, maintaining emotional balance and self-control, coping with the disease, pain management, stigma and discrimination, treatment burden, palliative care and personal resilience. The antecedents were knowledge and attitude toward the disease, self-efficacy, social support, spirituality and spiritual well-being, disease severity, access to healthcare, environmental factors, and financial considerations. The consequences were independence in personal life, improved physical health outcomes, psychological well-being, family and caregiver well-being, improved family, social and peer relationships and social interactions, improved school performance, and improved overall HRQOL and long-term outcomes. This analysis provides an overview of HRQOL concepts related to children and adolescents with SCD, guiding further research into nursing care and clinical practice.

Health of the Pandemic Dementia Paid Staff and Unpaid Caregiver Workforce in Congregate Care and Community Settings

ObjectivesThe objective of this study was to assess the impact of the pandemic on the health, well-being, and access to services of paid staff and unpaid caregivers of persons living with dementia. DesignQuestionnaires were developed to capture the experiences of paid staff and unpaid caregivers throughout the pandemic, leveraging a pre-existing clinical trial collaborative. SettingCommunity and long-term care locations in Miami, Florida, Boston, Massachusetts, and the greater Baltimore, Maryland, and D.C. areas. ParticipantsPaid staff from Miami Jewish and Benchmark who worked with patients with dementia during the first two years of the pandemic. Unpaid caregivers who lived within the catchment area of the study sites and provided care for community-based persons with dementia. MeasurementsMeasures included the Coronavirus Impact Scale, the Herth Hope Index, NPI-Q, the Modified Caregiver Strain Index, PHQ-8, items about workplace changes, caregiving relationship, and changes to caregiver support. ResultsPaid staff were statistically more likely to have been exposed to, tested for, hospitalized, or seriously ill with COVID-19 and indicated moderate to severe impacts to medical and mental health services compared to unpaid caregivers. Unpaid caregivers exhibited significantly higher rates of depressive symptom severity and overall lower scores on the Herth Hope Scale compared to paid staff. ConclusionsOur findings suggest that the pandemic had significant impacts on the mental health and general well-being of unpaid caregivers. While notable that paid staff suffered from increased exposure and decreased access to services, policies supporting both workforces should respond to the unique outcomes that each faced, post-pandemic.

Understanding the Roles of Religion in Nursing Practice as a Prescriptive Instrument for High-Quality Faith-Based Healthcare

Abstract Religion is the patient’s belief in a higher power. This power could have a significant impact on the care provided by nurses. Therefore, it is important to examine the role of religion in providing holistic and faith-based nursing care. The objective of this study is to assess the roles of religion in nursing practice. This study reviewed previous works of literature and screened for eligibility, with the search years of 2018–2024 to capture the identified variables in the review objectives. In our literature search, we discovered various ways in which religion intersects with nursing practice, shaping attitudes, beliefs, decision-making processes, and holistic patient care through transcultural nursing theory. In conclusion, we discovered that religion has a diverse and significant role in nursing practice, influencing both professional aspects of caregiving and patient well-being; it brings strength, hope, comfort, and resilience. All of these help patients cope with anxiety, stress, and depression while improving the overall health outcomes. It is therefore essential that nurses acquire at least a basic knowledge of the most common religions to provide holistic care that meets their patients’ needs. We also encourage nurses to work following their clients’ religious beliefs and not discriminate when they differ from their own.

Perceived impact of pediatric palliative care: caregiver's perspective.

Caregivers of children with complex chronic diseases (CCD) or life-limiting conditions (LLC) experience heightened strain. Understanding their concerns is essential for effective support, particularly in pediatric palliative care (PPC) where compassionate support is crucial. Amid substantial growth in PPC services in Portugal, assessing the effectiveness of care in addressing these concerns and adapting to the evolving needs of parents is imperative. The aim of this study was to perceive the impact of PPC from the caregivers' perspective. Participants consisted of children with CDD or LLC and their caregivers followed by the PPC team. Institutionalized children were excluded. Our mixed-methods study involved analyzing sociodemographic characteristics and assessing caregiver and child well-being using quantitative data and explored caregiver concerns and the impact of PPC through qualitative data obtained from semi-structured interviews. We included 43 children and caregivers. Caregivers (90.6% mothers; mean age 40) often experience fatigue (90.7%) although they rarely feel exhausted (67.4%). Sleep disturbances (58.1%) are the children's most frequent perceived symptom. Seven categories emerge from caregivers' concerns. Among the five categories arising from caregivers' perceived impact of PPC integration, 95.3% prioritize enhanced contact with healthcare professionals. Increased support to facilitate caregiver rest and early referral emerges as primary suggestions for improving PPC. The PPC appears to be effective in alleviating parents' primary concerns, highlighting the crucial importance of early referral. Implementing strategies to provide respite for caregivers and closer monitoring of these children becomes a priority to improve the quality of life for this inherently intertwined dyad, the child-family unit.

Trauma-Informed Positive Parenting in Primary Care as a Tool to Support Child and Family Well-Being.

Factors affecting caregiver health and wellbeing, such as trauma and stress, can have significant negative impact on parenting behaviors and on subsequent child physical and mental health. Trauma-informed positive parenting (TIPP) is an effective tool that acknowledges and addresses a family's unique journey and needs, while promoting both nurturing caregiver-child interactions and appropriate limit setting. Primary care practices are in unique positions to provide such interventions, due to their long-standing and trusted involvement with families. Therefore, we propose that TIPP can feasibly be incorporated into the pediatric primary care setting to support overall family health and well-being. [Pediatr Ann. 2024;53(10):e360-e365.].

The Impact of Caregiver Affiliate Stigma on the Psychosocial Well-Being of Caregivers of Individuals with Neurodegenerative Disorders: A Scoping Review.

Background. Caregiver affiliate stigma concerning neurodegenerative disorders (NDDs) profoundly affects caregivers' well-being, though its full impact remains to be fully elucidated. Objectives. This scoping review aims to consolidate the current knowledge on caregiver affiliate stigma related to NDDs, explore its connection to caregiver psychosocial well-being, and pinpoint the gaps in the existing research. Methods. Adhering to the PRISMA-ScR guidelines, a comprehensive search of five databases was conducted for peer-reviewed, English language studies focusing on caregiver-affiliated stigma in relation to NDDs. Results. The initial search yielded 9033 articles, with 19 meeting the inclusion criteria after rigorous screening. Bronfenbrenner's ecological systems theory was employed to analyze various stigma conceptualizations, including public, courtesy, affiliate, and family stigma. Analysis revealed a correlation between elevated levels of affiliate stigma and increased caregiver burden, deteriorated mental health outcomes, and diminished quality of life. The internalization of stigma was found to vary across demographic groups, influenced by factors such as education level and social support. The review also highlighted the mediating role of coping strategies and the protective function of social support against stigma internalization. Conclusions, These findings underscore the necessity for targeted, culturally sensitive interventions that address caregiver affiliate stigma across multiple ecological levels. This review contributes to a more nuanced understanding of caregiver affiliate stigma in relation to NDDs, laying the groundwork for future research and intervention development aimed at enhancing caregiver well-being in diverse cultural contexts.

Impact of COVID-19 Pandemic on Caregivers of Children with Neurodevelopmental Disabilities: A Qualitative Study

Background/Aim: It is well known that caregivers of children with neurodevelopmental disabilities (NDD) face challenges. These challenges increased further due to the coronavirus disease 2019 (COVID-19) pandemic and the related restrictions. There was very little data from India on these challenges. This study was done with the primary aim to gain insights about the challenges faced by parents of children with NDD through their personal stories. Methods: Participants were recruited using purposive sampling method and semi-structured interviews were conducted through a telephone or in person. Data saturation was achieved by the sixth participant and 2 more interviews were performed for further confirmation. Interviews were transcribed, and a 7-step Colaizzi’s phenomenological method was used to identify different themes. Results: The impact of COVID-19 on caregivers of children with NDD can be summarized into 4 broad themes. First, there were challenges related to “therapy” which included closure of day-care centers and schools, inaccessibility to professionals, and disruption in home-based learning. Second, there were “child” related challenges which included inappropriate behaviors. Third, there were “family” challenges which included misunderstandings between parents and difficulties in adhering to family routines. Lastly, there were “personal” challenges related to physical and psychological health. Conclusion: The personal stories of caregivers of children with NDD highlight the pressing need to provide appropriate support and formulate holistic models to enhance well-being of caregivers during difficult periods.

Caregiver-centric interventions for family carers of children with neurodevelopmental disorders in India – A scoping review

Caregiving for children with neurodevelopment disorders (NDDs) can be a lifelong process that takes hold of an individual’s time, energy, and resources. This raises a question about the caregivers’ needs and concerns and the extent to which they receive medical or psychological attention during caregiving. This scoping review examines the psychosocial interventions conducted in India for caregivers of children with NDDs. The search strategy involved analyzing published literature on interventions for caregivers of children with NDDs in India from online databases from 2013 to March 2023. Sixteen intervention studies were identified and categorized into child-centric, caregiver-centric, and family-based approaches. Most studies were limited to thesis publications and lacked peer-reviewed publications. However, there has been a gradual increase in caregiver-centric intervention studies since 2019, focusing on alleviating distress and promoting caregiver well-being. Approximately 87.5% (14 out of 16 studies) adopted intervention components focusing on the caregiver’s outcomes and well-being. It can be concluded from the review that more applied research on caregiver-centric interventions is needed in India, focusing on the caregivers’ concerns in depth. The study will provide insights into the importance of practicing caregiver-centric interventions and recommend healthcare providers and policymakers initiate policies, provisions, and programs that benefit the caregiver community.

Psychological Wellbeing and Coping Strategies of ADHD Child Caregivers

Psychological Wellbeing and Coping Strategies of ADHD Child Caregivers

Health and Well-being of Family ('Ohana) Caregivers of Native Hawaiian and Pacific Islander Adults Living with Alzheimer's Disease and Related Dementias.

We aimed to describe the health and well-being of family caregivers of Native Hawaiian and Pacific Islander (NHPI) adults living with Alzheimer's disease and related dementias (ADRD), explore cultural values related to caregiving, and characterize barriers and facilitators to their health and well-being. Caregivers of NHPIs living with ADRD were recruited from across the United States to complete a multimethod study including a survey followed by an interview about their health and well-being. Eleven participants completed surveys, six of whom completed an interview. Themes included caring as a community, lōkahi (balance), and the importance of sleep, food, and physical activity. Cultural values included connection to cultural practices, kūpuna (elders) as cultural knowledge holders, and the kuleana (responsibility) of caregiving. Caregiving for an NHPI adult living with ADRD occurs beyond the dyad, and is a matter of family and community. Culturally-based interventions offered through community and healthcare organizations may be critical to promoting caregiver health.

La infraestructura urbana en relación con el derecho al cuidado y al tiempo

The incorporation of a gender perspective in urban design has gained importance since the 1960s and 1970s, focusing on how city layouts can ease caregiving responsibilities and promote gender equality. Feminist urbanism advocates for redesigning cities to prioritize life and social reproduction, emphasizing the need for infrastructure that recognizes the essential role of caregiving and supports the well-being of both caregivers and recipients. This approach highlights the importance of urban policies aimed at reducing the time and effort required for caregiving task.

Uncertainties of healthcare professionals and informal caregivers in rare diseases: A systematic review

Uncertainties, defined as metacognitive awareness of ignorance, are an essential part of medicine. Consequently, healthcare professionals (HCPs) as well as informal caregivers face them inevitably. Depending on the interpretation of uncertainties and the existence of available resources to cope with them, uncertainties might have serious consequences. Studies showed higher burnout-rates and reduced psychosocial well-being of HCPs and informal caregivers. Especially rare diseases are linked with a variety of uncertainties, as knowledge about specific diseases is often limited which might result in a higher burden of both groups. This review aimed at summarizing studies dealing with HCPs' and informal caregivers’ uncertainties in the context of rare diseases. We searched five databases and screened 11.236 records for title/abstract and 105 records for full-text. Finally, 24 studies were subjected to quality assessment and data extraction using narrative synthesis. Five studies focused on HCPs, 19 on informal caregivers. Results were clustered using an existing taxonomy differentiating three categories of uncertainty (scientific, practical and personal) and issues, specifying particular uncertain situations or circumstances. Only five of the included studies investigated the perspective of HCPs, indicating a research gap of the topic within this group. Reports were mostly limited to practical and scientific uncertainties. Concerning scientific uncertainties, information procurement showed up as a special facet in rare diseases. Informal caregivers reported the whole variety of scientific, practical and personal uncertainties, leading to psychological consequences such as fear, confusion and worry. This review provides an overview of categories and assigned issues of uncertainties HCPs and informal caregivers experience in relation to rare diseases and psychological consequences. Results can be used in the development of trainings, to teach effective coping strategies when dealing with uncertainties or offers of psychosocial support.

Exploring Caregiver Quality of Life in Dementia: The Role of Mealtime and Care Recipient Factors

Informal caregivers play a critical role in supporting individuals with dementia, yet often face significant challenges that impact their own quality of life (QoL). This exploratory study investigates the multifaceted factors contributing to caregiver QoL, particularly focusing on care recipient factors including dysphagia, dietary restriction, dementia severity, and care recipient QoL. A total of 24 informal caregivers of persons with dementia (PWD) participated in an online survey assessing various factors believed to play a role in caregiver QoL including dysphagia severity, dietary restrictiveness, cognitive impairment, and caregiver QoL. Results revealed that increased degree of dietary restrictiveness, lower dementia symptomatology, and higher care recipient QoL were significant predictors of improved caregiver QoL. These findings highlight the complex interplay of factors influencing caregiver QoL and underscore the need for tailored interventions to enhance well-being in both caregivers and care recipients within community-based care settings.

The effect of dwelling size on the mental health and quality of life of female caregivers living in informal tiny homes in Hong Kong

BackgroundAlthough the adverse impact of substandard informal housing has been widely documented, most studies concentrated on developing societies, thereby leaving informal housing in developed regions underexplored. This study examines Hong Kong, where limited dwelling size is a distinctive feature that characterises informal housing, to explore the impact of housing informality on mental health, with a particular focus on dwelling size. It centers on subdivided units (SDUs), which are tiny compartments partitioned from a large domestic quarter, to understand how housing informality and housing size affect the mental well-being of female caregivers, who typically bear the brunt of the housework.MethodsIn partnership with nongovernment organisations in three SDU-abundant districts, this mixed-methods study conducted a survey on 413 female caregivers aged 18—65 and qualitative research combining ethnographic observations and in-depth interviews on 36 families living in SDUs in Hong Kong between 2021 and 2023. The mental health outcomes and health-related quality of life (HRQoL) of the participants were assessed by using the Depression, Anxiety, and Stress Scale-21 and a EuroQol-5 Dimension-5 Level questionnaire.ResultsDepression, anxiety and stress were prevalent across the female caregivers living in SDUs (12.4%), as well as a significantly lower HRQoL compared with that of the general population (0.882 vs. 0.919). Findings showed that a total floor area smaller than 13.0 m2 was associated with increased likelihood of experiencing anxiety and depression and reduced HRQoL. Cramped living space adversely affected the caregivers’ well-being through the 1) physical, 2) relational and 3) personal aspects of home experiences. Negative experiences at home can cause housework burnout, exacerbate family conflicts and lead to feelings of repression and low self-efficacy.ConclusionsThis study contributes to the understanding of the consequences of housing informality in diverse geographical contexts and illuminates the effect of dwelling size by identifying the mechanisms through which housing size can affect the mental well-being of residents, which may vary depending on their family status. The findings yield important policy implications, including the need to establish a minimum space standard for subdivided residential dwellings and ensure equitable access to community spaces for deprived families.

Status quo and factors influencing dyadic disease appraisal in chronic heart failure based on latent profile analysis in Northern Sichuan Province, China

PurposeThis study explored potential categories of dyadic disease appraisal differences among patients hospitalized with chronic heart failure (CHF) in China and analyzed the main factors influencing these categories.MethodsA survey was conducted using various tools and scales, including the Chinese version of the Memorial Heart Failure Symptom Appraisal Scale, Heart failure self-care index scale, Social Support Rating Scale, Zarit burden interview, and Self-rating anxiety scale. The data was collected from patients who were hospitalized with CHF in the cardiology department of one of two tertiary hospitals in Nanchong City, China. The dyadic disease appraisal categories were identified using latent profile analysis (LPA). Multiple logistic regression analysis was also employed to analyze the factors influencing the formation of potential categories of differences in dyadic disease appraisal in CHF patients.ResultsA total of 262 pairs of hospitalized CHF patients and their caregivers participated in this study. The dyadic disease appraisal of CHF patients was potentially categorized as the "negative difference group" (28 individuals, 10.7%) and the "positive or convergence group" (234 persons, 89.3%). The results showed that the factors influencing the categorization of dyadic disease appraisal differences included the patient's social support, disease progression, and Caregivers anxiety level, burden, gender, educational attainment, and age (p < 0.05).ConclusionThe study findings demonstrated heterogeneity between the two groups of CHF patients in the dyadic disease appraisal. Therefore, it is necessary to focus on patients who have a brief duration of illness and limited social support. Specifically, it is important to prioritize support for female caregivers who are 65 years or older, have lower levels of educational attainment, and experience a significant burden and anxiety. Regular implementation of support person-bilateral co-management strategies can effectively reduce differences in how the disease is perceived and enhance the overall well-being of both caregivers and patients.

Intergenerational Care and Subjective Well-being: A Study of the Particularities of Ageing Amongst the Indigenous Peoples of Chile

Abstract This empirical study explores intergenerational caregiving and subjective well-being amongst older adults in Indigenous communities in rural Chile. Facing substantial social and economic challenges, these communities depend heavily on cultural traditions and family support systems. Data were collected from 1,348 older adults, aged sixty and above, using surveys to assess caregiving practices, intergenerational support and subjective well-being, measured by the Personal Wellbeing Index and the Perceived Social Support Questionnaire. Findings reveal that caregiving is deeply rooted in cultural and historical contexts, with positive aspects such as increased satisfaction and social connectedness, and negative aspects including stress and social isolation. Women predominantly assume caregiving roles, maintaining cultural traditions and supporting family well-being. Notable differences in intergenerational support and subjective well-being were observed based on ethnic group and gender. The implications for social work practice are insightful. The study highlights the need for culturally sensitive social work policies and inclusive strategies that address the well-being of older adults in these communities. Social workers and policymakers must consider cultural nuances and the unique needs of Indigenous populations, taking into account cultural identity, economic conditions and acculturation to develop effective support programmes.

The Lived Experience of Caregivers in the Older Stroke Survivors' Care Pathway during the Transitional Home Program-A Qualitative Study.

stroke is a major cause of disability and death, globally. Many stroke survivors live with disabilities, requiring significant caregiving support. Caregivers often feel unprepared and burdened, experiencing isolation and health declines. Their well-being and involvement in discharge planning impact post-discharge care quality. to investigate the experiences of caregivers of older stroke survivors regarding their expectations in the care pathway during the transitional home program, as this phenomenon is currently understudied in the present context. by employing a qualitative design, this study utilized a phenomenological approach developed by Cohen. Eighteen caregivers of stroke survivors participated. four main themes emerged from the analysis: (1) the sense of loss experienced by stroke survivors and perceived by caregivers; (2) the importance of social support in the recovery and well-being of both stroke survivors and caregivers; (3) the increased workload of caregivers; and (4) the lack of awareness of the needs during the transition, leading to resignation when facing complications. the findings highlight the significant impact of stroke on caregivers, affecting both the individual characteristics and social relationships of stroke survivors and their caregivers. There is a need for a nuanced understanding of caregivers' roles and responsibilities.

Exploring Caregiver Burden in Alzheimer's Disease: The Predictive Role Of Psychological Distress

Background Alzheimer's Disease [AD], the most prevalent form of dementia, is on the rise in terms of its prevalence. Individuals affected by this condition typically require extensive care across all aspects of daily living. The mental well-being of caregivers for those with dementia stands as a significant public concern. Therefore, the current study aimed to investigate the association between the burden of caregiving and the psychological distress experienced by family caregivers of individuals with AD. Methods This cross-sectional study employed a census method and involved the participation of 150 caregivers of Alzheimer's patients in Shahroud, Iran. To assess the eligibility of family caregivers, the inclusion criteria comprised minimal literacy in reading and writing and at least six months of care for an individual with AD.. Exclusion criteria included being a formal caregiver or employed in healthcare, having mental disorders, or using neuroleptic drugs among family caregivers. Data collection tools consisted of the Zarit Care Burden Inventory [ZBI] and Lovibond's Depression, Anxiety, and Stress Scale [DASS-21]. Information was gathered online and through self-reporting, followed by analysis using descriptive statistics [frequency, percentage, mean, and standard deviation], as well as inferential statistical tests [multivariate linear regression]. Results In this study, the mean scores for caregiver burden, anxiety, stress, and depression were 28.09 ±13.01, 4.50 ±4.53, 8.12 ±4.98, and 4.69 ± 4.86, respectively. The study's findings revealed that with each additional hour spent on daily patient care, the burden score for caregivers increased by 0.327 units [p=0.025, β=0.327]. Furthermore, for every one-unit rise in stress [p&lt;0.001, β=1.087] and depression scores [p=0.015, β=0.671], the burden score also increased by 1.087 and 0.671 units, respectively. Conclusion Caregivers of individuals with AD experienced notable levels of caregiving burden, particularly correlated with the duration of daily patient care and the manifestation of stress and depression symptoms. Hence, the study suggests the implementation of tailored interventions, such as psychoeducational programs, to provide vital support for these individuals.