Caregiving Situation Research Articles

Ambivalent ageism and the pains and gains of informal caregiving for older adults: Findings from Germany

Background and ObjectivesWe analyzed the associations between ambivalent ageism, burden and positive experiences of care among informal caregivers of older adults (aged ≥60 years), to advance understanding of its role as psychosocial risk or resilience factor for informal caregivers. Design and MethodsData of 433 informal caregivers (≥18 years) of adults with care needs (≥60 years) from the Attitudes towards Informal Caregivers (ATTIC) project was used. The Ambivalent Ageism Scale, Positive Aspects of Care Scale and the Burden Scale for Family Caregivers were used. Linear regression analyses adjusted for context and personal factors were conducted, with age and gender included as moderators in additional tests. ResultsHigh ageism (total score) was significantly associated with a high level of positive aspects of care and burden. Further analyses showed a significant positive association between benevolent ageism and positive aspects of care, while stronger hostile ageism was associated with less positive aspects of care. Hostile ageism was also significantly associated with more burden, while benevolent ageism and burden were not associated. Additional analyses indicated no moderation by gender, but by age. The association between hostile ageism and burden was weaker with caregivers’ higher age. Discussion and ImplicationsWhile hostile ageism and worse caregiver burden were associated, positive care experiences seemed to benefit from benevolent ageism. This highlights the complex associations between ageism and caregivers’ well-being, which need to be taken into account in theory and practice focused on improving the care situation for both caregivers and care recipients.

Experiences and the psychosocial situation of parental caregivers of children with spinal muscular atrophy against the background of new treatment options: a qualitative interview study

BackgroundSpinal muscular atrophy is a rare neurodegenerative disorder in children which leads untreated to muscle wasting, respiratory impairments, and a shortened life expectancy. Parents as primary caregivers are often physically and psychologically burdened. In recent years, new and promising treatment options have been approved, but it remains unclear if they have an impact on the psychosocial situation of affected families.ObjectivesThe aim of this study was to explore the views and experiences of parents as informal caregivers of children with SMA in the course of the disease against the background of new treatment options (Spinraza® or Zolgensma®).MethodsWe conducted qualitative interviews with 27 parents of children with SMA treated with Spinraza® and Zolgensma® from April to September 2020. The analysis was done using thematic analysis and reported according to the COREQ criteria.ResultsThe data analysis resulted in three main themes: a) caregiver burden and negative consequences for families, b) resources and protective aspects, c) psychosocial care needs. The results are discussed against the background of new treatment options and previous models of supportive care needs. Parental caregivers of affected children face multiple burdens in different stages of the child’s disease progression.ConclusionAlthough new treatment options for SMA showed observable effects for most parents, the main caregiver burden and reported symptoms were attributable to the overburdening care tasks. To unburden families, more screening for unmet needs, family-centered help services, professional caregivers, childcare, and sufficient financial support are needed.

Developing a Policy Model to Support Family Caregivers of Dependent Older Adults in Bangkok

This article aims to present the situation of family caregivers of dependent older individuals in the Bangkok area and proposes a model policy to support them. This study used mixed methods with a multi-phase design. Based on 357 participants, the results indicate that family caregivers in Bangkok faced problems, with moderate levels (x ̅ = 2.51) in caring for older dependents and their roles as direct caregivers. Yet, they hold high expectations for support (x ̅ = 3.86). The proposed model comprises four components derived from exploratory factor analysis of quantitative data, supplemented by qualitative data from a case study involving five individuals, tested and assessed by Bangkok executives or representatives (totaling six individuals), along with seven practitioners supporting older adult caregivers. These components include establishing systems, mechanisms, rights, and welfare; supporting work and relaxation; creating all-inclusive care service units for dependent older individuals; and providing medical and public health services. Implementing local-level policies is crucial for supporting family caregivers, with the Department of Older Persons collaborating with civil society for integration and engagement. Through this collaboration, concrete forms of support for family caregivers of independent older individuals are expected to be established.

Motivations and Impact of Training of Home Care Workers for Older Adults in Nigeria

Background: The aging population in Nigeria presents a significant challenge to the healthcare system, particularly in providing adequate home care. This study addresses the urgent need for well-trained home care workers as traditional family-based care models become increasingly unsustainable due to urbanization and economic pressures. Objectives: The study explored the motivations and impacts of a two-week training program for home care workers, aimed at equipping participants with essential skills for caring for older adults in Nigeria. Methods: Using a descriptive qualitative approach, including semi-structured interviews with 20 participants, this study investigates the motivations for joining the training program and its impact on professional development and competency in elder care. Results: The findings reveal diverse motivations for participation, including aspirations for career advancement, personal growth, and a strong commitment to providing quality care. The training program significantly enhanced participants' skills, knowledge, and confidence, enabling them to manage complex caregiving situations more effectively and improve the overall quality of care. Conclusions: This research highlights the critical role of specialized training in improving the quality of life for older adults in Nigeria. It emphasizes the need for policy interventions to standardize training for home care workers, ensuring consistent quality of care for Nigeria's aging population and recognizing the profession's essential contribution to the healthcare system.

Profiles of resilience resources among spousal caregivers

Objectives Resilience resources play a significant role in a caregiver’s adaptation process. Previous studies have primarily focused on the effects of individual resilience resources. This study aimed to examine diverse patterns of how those multiple resources simultaneously operate in a caregiving situation with the person-centered approach. Method This study utilized data from the Health and Retirement Study. Participants were eligible if they completed the Left-Behind questionnaire at two consecutive timepoints (2014 and 2016; or 2016 and 2018) and provided care for their spouse with limitations in activities of daily living (n = 692). Results Latent profile analysis identified three distinct groups among spousal caregivers: (1) Lack of Resilience Resources (17%), (2) Low Psychological and Cognitive Resources, but Having Moderate Support (21%), and (3) Strong Resilience Resources (62%). Spousal caregivers having functional limitations (Odds = 0.37, p = 0.016) and greater depressive symptoms (Odds = 0.59, p = 0.000), and high ongoing caregiving stress (Odds = 0.37, p = 0.007) were less likely to be in ‘Strong Resilience Resources’ than ‘Lack of Resilience Resources’. Conclusion The findings highlight the importance of taking a holistic view of resilience resources. It provides insights into potentially vulnerable groups and caregivers’ adaptation process, thereby contributing to the development of interventions or policies aimed at enhancing the resilience resources of family caregivers.

Towards a FHIR-Based Framework for Analyzing Nursing-Related Data in Smaller Sized Care Facilities.

Data-driven decision making can improve the situation for caregivers and residents in nursing homes. However, smaller facilities often lack the technical and personnel resources required to prepare and analyze data. We introduce a conceptual framework to enable data transformation and analyzation in smaller nursing homes. We deployed a prototype pipeline at a German nursing home, where we demonstrated the feasibility and effectiveness of our approach.

Older Caregivers With HIV: Their Story of Caregiving.

As people with HIV live longer and healthier, it has become more likely that they will assume a caregiver role for their families and/or friends. Yet, there is a significant gap in the literature that older caregivers with HIV (OCWH) have not received attention from practitioners and researchers. To fill the gap, our qualitative study was conducted with OCWH (N = 19) to explore various themes such as adjustment to caregiving, caregiving responsibilities, HIV and other health issues, support systems, caregiving outcomes, needs assessment, cognitive health, and the impact of COVID-19. Results indicated that each OCWH faced their own unique challenges (e.g., severity of health conditions, intense caregiving responsibilities, caregiving situation, lack of social support/transportation/financial means), but they expressed positive and fulfilling caregiving outcomes. Understanding the lived experiences of OCWH is requisite to develop holistic service programs to meet their caregiving needs while supporting their HIV health and co-occurring health conditions.

Pediatric oncology caregiving as narrative repair: Restor(y)ing disrupted family biographies and damaged moral identities.

Drawing on Arthur Frank's conceptualization of narrative repair, we consider how pediatric oncology nurses restore and re-story the narratives of patients and families whose biographies have been thrown off course by the diagnosis and death of a child from cancer, as well as their own narratives as caregivers. Frank argued that when one's life story is shipwrecked by chronic or life-threatening illness, storytelling is way to reorient one's biography to a new ending, repairing the narrative wreckage created by the illness experience. In this critical narrative study with nine pediatric oncology nurses in Ontario, Canada, we highlight how, through physical, narrative, and moral proximity, nurses become entwined in their patients' and families' illness narratives, and how developing this narrative knowledge provides nurses with opportunities to steer families onto new terrain. As well, we examine how nurses re-story and repair their own identities as "good" caregivers in situations when they are prevented from acting on behalf of their pediatric cancer patients. These findings contribute to literature on illness narratives by considering narrative repair as a relational process enacted as part of pediatric oncology caregiving.

Navigating autonomy, privacy, and ageism in robot home care with aged users: A preliminary analysis of ROB-IN.

In this article, I propose an ethical analysis of assistive domestic robots for older users. Indoing so, I illustrate my inquiry with the example of ROB-IN assistive robot. ROB-IN is a Spanish project which is devoted to developing a robot that will perform in the private home of nondependent, aged users. It is aimed to help people in their daily activities and contribute to appropriate health monitoring. One of their potentially most useful features is related to data gathering and sharing. For the inquiry on the ethical underpinnings of this case, I develop a framework for domestic assistive robots for competent older adults drawn on the ethics of care. I assess that this type of robots could be ethically appraised attending to their impact on the well-being and autonomy of users. I approach autonomy from a relational perspective, and I delve into the relationship between autonomy and well-being through the concept of paternalism. I argue that this type of assistive robots should never act paternalistically. Given ROB-IN great implications regarding privacy, I subsequently explore the ways in which the privacy of users should be respected in their interaction with assistive robots, focusing on the relation with autonomy and well-being. Lastly, I highlight the need for avoiding ageism. This investigation focuses on aged users, but it is suggested that the situation of caregivers should be also the object of further investigations.

Dementia Care Decisions, Caregiving Situations, and Formal Service Use in Korean Immigrant Families: A Qualitative Application of a Sociocultural Model

Given the significant role of culture and place in dementia caregiving, we conducted a qualitative study with Korean American family caregivers of persons with dementia. Guided by the sociocultural model of dementia caregivers’ service use, we explored the categories of care decisions, caregiving situations, and formal service use within the context of culture and place. Data from in-depth interviews with 16 Korean American dementia caregivers living in the greater Los Angeles area were analyzed using the constant comparison method. Across the three conceptual categories, we derived eight themes: (1) personal motivation; (2) family context; (3) attitude toward formal care; (4) strains; (5) rewards; (6) language and geographic region; (7) knowledge and awareness; and (8) social support and cultural stigma. Our findings demonstrate not only varied experiences in care decisions, caregiving situations, and formal service use but also their interconnectedness. Supporting the influential role of culture and place in dementia caregiving, the findings include positive and negative elements within each domain and provide implications for programs and services to respond to identified needs and barriers.

Caring by default: experiences of caregivers of children with developmental disabilities in Ghana mirrored in the context of the stress process model

BackgroundCaring for a child with developmental disabilities (DD) is associated with significant stress and burden. Caregivers’ experiences are influenced by factors such as poverty, stigma, and the lack of accessibility to services, equipment, and assistive devices. These factors are prevalent in a low-resource setting like Ghana which ultimately influences the experiences of caregivers. The aim of the study was to explore the experiences of caregivers of children with DD in the context of the Stress Process Model.MethodsThe study employed a descriptive phenomenological design Caregivers of children with DD attending the Neurodevelopmental Clinic of a Teaching Hospital were purposively sampled. Data collection involved semi-structured interviews, reaching saturation with 14 participants. The interviews were audio-recorded transcribed verbatim and analysed using thematic analysis.ResultsFour main themes emerged: perception of caregiving, stressors faced by caregivers, negative health outcomes and coping strategies. Perception of caregiving had two sub-themes as stressful nature of caregiving and time-consuming. Six sub-themes were linked to stressors faced by caregivers: the child’s ADL needs, communication barrier, managing challenging behaviour, child’s health needs, unmet educational needs, and economic burden. Negative health outcomes had three sub-themes: decline in physical, mental and social well-being. While some caregivers used maladaptive coping strategies like blaming, others employed adaptive coping strategies like religious coping through prayer, self-encouragement and support from other family members.ConclusionThe study highlights the complex interaction between caregivers’ perception of their caregiving situation, the stressors they experience, their coping resources, and the negative health outcomes associated with caregiving. These findings underscore the need for context-specific caregiver programmes to mitigate the negative impacts of caregiving.

Gender Inequalities of Health and Quality of Life in Informal Caregivers in Spain: Protocol for the Longitudinal and Multicenter CUIDAR-SE Study.

The aging population and increased disability prevalence in Spain have heightened the demand for long-term care. Informal caregiving, primarily performed by women, plays a crucial role in this scenario. This protocol outlines the CUIDAR-SE study, focusing on the gender-specific impact of informal caregiving on health and quality of life among caregivers in Andalusia and the Basque Country from 2013 to 2024. This study aims to analyze the gender differences in health and quality of life indicators of informal caregivers residing in 2 Spanish autonomous communities (Granada, Andalusia, and Gipuzkoa; Basque Country) and their evolution over time, in relation to the characteristics of caregivers, the caregiving situation, and support received. The CUIDAR-SE study uses a longitudinal, multicenter design across 3 phases, tracking health and quality of life indicators among informal caregivers. Using a questionnaire adapted to the Spanish context that uses validated scales and multilevel analysis, the research captures changes in caregivers' experiences amid societal crises, notably the 2008 economic crisis and the COVID-19 pandemic. A multistage randomized cluster sampling technique is used to minimize study design effects. Funding for the CUIDAR-SE study was in 3 phases starting in January 2013, 2017, and 2021, spanning a 10-year period. Data collection commenced in 2013 and continued annually, except for 2016 and 2020 due to financial and pandemic-related challenges. As of March 2024, a total of 1294 participants have been enrolled, with data collection ongoing for 2023. Initial data analysis focused on gender disparities in caregiver health, quality of life, burden, perceived needs, and received support, with results from phase I published. Currently, analysis is ongoing for phases II and III, as well as longitudinal analysis across all phases. This protocol aims to provide comprehensive insights into caregiving dynamics and caregivers' experiences over time, as well as understand the role of caregiving on gender inequality in health, considering regional variations. Despite limitations in participant recruitment, focusing on registered caregivers, the study offers a detailed exploration of the health impacts of caregiving in Spain. The incorporation of a gender perspective and the examination of diverse contextual factors enrich the study's depth, contributing significantly to the discourse on caregiving health complexities in Spain. DERR1-10.2196/58440.

Recognition and Motivation: A Study on the Strategies for Improving the Career Attractiveness of Nursing Workers in Nursing Institutions

Nursing staff in nursing institutions are the guardians of the growing "silver age" of the elderly, and they are the solid arms of the elderly institutions to support the happiness of the elderly in their old age. The project members investigated 6 different types of elderly care institutions in Nanjing, and explored the basic situation and career attractiveness of institutional caregivers through qualitative interviews, and analyzed the dilemma of occupational attractiveness. Adhere to the problem-oriented, combined with the logic and influencing factors of the construction of the professional self-identity of the nursing staff, from the aspects of the social environment, institutional system and personal development of the professional self-identity construction of the nursing staff, and put forward constructive and targeted suggestions, aiming to promote the construction of the professional self-identity of the elderly care workers in China, and promote the improvement of nursing quality and the healthy development of the nursing career.

What Self-Management Skills Do Turkish Caregivers Have in Caring for People with Dementia? Results of a Qualitative Survey.

Family caregivers can be overwhelmed by the care they provide within the family without external support. The development of self-management skills and the associated ability to actively and responsibly manage one's own health or illness situation therefore plays a vital role in the home care of people living with dementia. As part of an individualized intervention for family caregivers of people of Turkish origin with dementia, existing self-management skills were examined through qualitative interviews to gain insight into health literacy and empowerment in caregiving and in interviewees' own practices to maintain their health. Ten caregivers of Turkish origin who were responsible for family members living with dementia were interviewed using problem-centered interviews. We found that the target group has very heterogeneous self-management competencies, which are based, on the one hand, on existing supportive resources and, on the other hand, on diverse care-specific, psychosocial and life-world challenges in intrafamily care that have not been overcome. Self-management skills in family caregivers are influenced by a complex interplay of both available resources that support these skills and challenging caregiving situations. This dynamic combination of resources and challenges results in varying levels of self-management ability among family caregivers. Strengthening resources can help caregivers to meet the challenges resulting from caregiving and to expand their self-management competencies. There is great need for action in promoting self-management skills among Turkish caregivers of people living with dementia in home care. Interventions to promote self-management skills must take into account the individual resources of those affected as well as their social and cultural diversity.

Help-seeking behavior in difficult situations among long-term care facility staff: a comparison with general citizens

ABSTRACT Although help-seeking research is useful to improve the quality of dementia care and mental health of care staff, most studies have focused on family caregivers. The details of help-seeking behavior among care staff remain unclear. This study investigated the features of help-seeking behavior among staff working in long-term care facilities. Two online surveys were conducted, targeting individuals working in long-term care facilities in Kinki Region, as well as general citizens who are users of crowdsourcing services across all regions of Japan. Four hypothetical difficult caregiving situations were developed to examine staff help-seeking behavior, including older people’s going-home behavior, care resistance, apathy, and depression. When confronted with difficult situations, participants responded regarding whether they sought help from other staff, the timing of help-seeking when they chose to seek help from others, and the level of burden to deal with the situations. A total of 505 participants (273 care staff and 232 general citizens) were analyzed. Two-way analysis of variance (ANOVA) revealed that the burden in all situations experienced by general citizens was higher than that among care staff. Three-way ANOVA also showed that excessive help-seeking styles were associated with difficult care situations. Finally, care staff engaged in help-seeking behavior more quickly than general citizens. The current findings showed that, compared to general citizens, care staff exhibited more frequent help-seeking behavior, which would be helpful to support problem-solving or alleviate the burden of care. Additional research is necessary to clarify the functions of help-seeking behavior in dementia care.

Putting a Dollar Value on Informal Care Time Provided to People Living With Dementia: A Discrete Choice Experiment

ObjectivesInformal care represents a significant cost driver in dementia but monetizing informal care hours to inform cost-of-illness or economic evaluation studies remains a challenge. This study aimed to use a discrete choice experiment to estimate the value of informal care time provided to people with dementia in Australia accounting for positive and negative impacts of caregiving. MethodsAttributes and levels were derived from a literature review, interviews with carers, and advice received from an advisory group. Attributes included 4 positive and negative caregiving experiences, in addition to “hours of care provided” and the “monetary compensation from the government.” A D-efficient design was constructed with 2 generic alternatives that represented hypothetical informal caregiving situations. The discrete choice experiment survey was administered online to a representative sample of the Australian general population and a group of informal carers of people with dementia. The willingness to accept estimates were calculated for the 2 samples separately using the mixed logit model in the willingness to pay space. ResultsBased on 700 respondents included in the analysis (n = 488 general public, n = 212 informal carers), the mean willingness to accept for an additional hour of informal care, corrected for the positive and negative impacts of informal care, was $21 (95% CI 18-23) for the general public and $20 (95% CI 16-25) for the informal carers sample. ConclusionThe estimates generated in this study can be used to inform future cost-of-illness studies and economic evaluations, ensuring that informal care time is considered in future policy and funding decisions.

Coping style and benefit finding among informal caregivers of patients with lung cancer: a moderated mediation model of co-caregivers and caregiving capability

Benefit finding (BF), as a positive psychological response, has the potential to alleviate caregiving stress for informal caregivers. However, the impact of coping style and caregiving capability on the perception of BF throughout the caregiving process still needs to be explored, particularly in light of the changing caregiving situation. This study aimed (1) to explore the correlation among coping style, caregiving capability, and BF; (2) to determine whether caregiving capability mediates the relationship between coping style and BF; and (3) to determine whether this mediating effect varies with the caregiving situation. A cross-sectional study was conducted. 272 participants completed the Sociodemographic Questionnaire, Simplified Coping Style Questionnaire, Family Caregiver Task Inventory, and Benefit Finding Scale. Correlation analysis and multiple stepwise regression were used for data analysis; Hayes’ PROCESS macro was used to determine the significance of the moderated mediation analysis. The results showed that (1) Coping style and BF were positively correlated, while caregiving capability was negatively correlated with coping style and BF. (2) Caregiving capability partially mediated the relationship between coping styles and BF. (3) Co-caregivers moderated the direct path of the relationship between coping style and BF, showing a substitution relationship. Improving the caregiving capability may be a novel approach to enhancing BF. Nursing staff should start with a positive coping style and caregiving capability and consider the factors of caregiving situations (co-caregivers) to maximize the intervention effect.

The role of social support among caregivers of people with cancer from Chinese and Arabic communities: a qualitative study

PurposeCancer caregivers from culturally and linguistically diverse (CALD) communities have reported significant unmet emotional support needs. This study aimed explore the role of social support to manage emotional wellbeing among cancer caregivers from Arabic and Chinese communities in Australia.MethodsSemi-structured interviews were conducted with Chinese (n = 12) and Arabic (n = 12) speaking cancer caregivers. Participants’ mean age was 40.6 years; majority were female (83%) and providing care to a parent (41.67%).ResultsUsing thematic analysis to analyse interview data, five overarching themes emerged describing caregivers’ perspectives on social support. Themes were related to the following: (1) receiving emotional support from social networks, (2) barriers to accessing emotional support from social networks, (3) isolation and loss of connection following the cancer diagnosis, (4) faith as a source of support, and (5) utility of support groups and caregiver advocates. Several caregivers relied on social networks for emotional support; however, caregivers identified key cultural and generational barriers to seeking support from their social networks which prevented caregivers from disclosing their emotions and caregiving situation. Caregivers also reported being isolated from their support system.ConclusionEmpirical testing of culturally appropriate strategies that improve social support seeking among caregivers from CALD communities is recommended.

Positive Emotions in Family Caregivers of Alzheimer's Disease Patients: Factors Associated with Gain in Caregiving from a Gender Perspective.

Background/Objectives: Gender differences in the variables of burden, anxiety, depression, and others associated with psychological distress have been found in studies on caregivers caring for a dependent relative, but a gender perspective is seldom used when analysing the positive aspects of caregiving. This study contributes to filling this gap by analysing gender differences in caregivers in a specific positive variable: gain. Methods: A cross-sectional design was used in a sample of 44 male and 96 female caregivers from Family Alzheimer Associations. Gender differences were analysed in demographic and psychological variables associated with the caregiving situation. Results: Female caregivers showed higher psychological distress than male caregivers, but gender differences in gain were only obvious when a deeper analysis of the GAIN scale responses was performed. The mediational role of psychological distress and other predictive variables showed a different pattern in male and female caregivers. The important predictive and mediating role that psychological distress plays in the greater perception of gains in caregiving and the result showing that female caregivers are the ones with poorer mental health support the need for preventive and therapeutic programs specifically targeting the positive aspects of caregiving in female caregivers. Conclusions: Three aspects could be highlighted in this study: family caregivers of AD patients perceived gain in the caregiving situation; gender plays a differential role in the perception of gain; and, finally, psychological distress should be the target when interventions are planned, not only to alleviate negative aspects but also to increase the positive aspects of caregiving.

The impact on employment and education of caregiving for a family member with young onset dementia: A scoping review.

Young-onset dementia (YOD) affects individuals under 65 years of age, often leading to loss of employment and independence. Families provide increasing levels of care to family members with YOD, resulting in changes to their daily lives, including their occupational pursuits. This review examines evidence of the occupational implications for family members who provide care to a family with YOD to identify: (i) the influence and impact caregiving tasks and responsibilities have on employment, volunteering, and education, and (ii) caregiver, and caregiving situation factors associated with changes in employment, volunteering, and education. A scoping review was performed using eight electronic databases. Included articles were narratively synthesized using a thematic analysis. Sixteen studies met the inclusion criteria and were included for review. The over-arching (main) theme of 'decision-making' was identified, with family members required to make choices about their own occupational goals and roles to be able to provide care to family living with YOD. The outcomes of these decisions are dynamic and changeable across the caregiving trajectory. Three caregiving factors influence decision-making: (1) Implications of Combining Caregiving and Occupations, (2) Altered Identity (3) Strategies to Support Caregivers of Individuals Living with YOD. A fourth theme was also identified 'Guidance for Researchers To Support Caregivers'. There is a scarce body of literature examining the influence caregiving has on occupational outcomes for the YOD caregiver population. Much of this work is descriptive and lacks focus on the implications, particularly long-term impacts. This review provides a foundational guide for future research and practices to support YOD family caregivers to obtain and sustain occupations.