Developing a national implementation strategy to accelerate uptake of evidence-based family caregiver support in U.S. cancer centers.

OBJECTIVE: Characterize key factors and training needs of U.S. cancer centers in implementing family caregiver support services. METHODS: Sequential explanatory mixed methods design consisting of: (1) a national survey of clinicians and administrators from Commission-on-Cancer-accredited cancer centers (N = 238) on factors and training needed for establishing new caregiver programs and (2) qualitative interviews with a subsample of survey respondents (N = 30) to elicit feedback on survey findings and the outline of an implementation strategy to facilitate implementation of evidence-based family caregiver support (the Caregiver Support Accelerator). Survey data was tabulated using descriptive statistics and transcribed interviews were analyzed using thematic analysis. RESULTS: Top factors for developing new caregiver programs were that the program be: consistent with the cancer center's mission and strategic plan (87%), supported by clinic leadership (86.5%) and providers and staff (85.7%), and low cost or cost effective (84.9%). Top training needs were how to: train staff to implement programs (72.3%), obtain program materials (63.0%), and evaluate program outcomes (62.6%). Only 3.8% reported that no training was needed. Qualitative interviews yielded four main themes: (1) gaining leadership, clinician, and staff buy-in and support is essential; (2) cost and clinician burden are major factors to program implementation; (3) training should help with adapting and marketing programs to local context and culture; and (4) the Accelerator strategy is comprehensive and would benefit from key organizational partnerships and policy standards. CONCLUSION: Findings will be used to inform and refine the Accelerator implementation strategy to facilitate the adoption and growth of evidence-based cancer caregiver support in U.S. cancer centers.

A review of family caregiving intervention trials in oncology.

This article contains a review of literature published from 2010 to 2016 on family caregiving in oncology. An analysis of 810 citations resulted in 50 randomized trials. These trials describe the need to prepare family caregivers for the complex role they play in cancer care. Several studies have demonstrated improved quality of life for family caregivers and improved emotional support from interventions. Several studies addressed communication and relational intimacy, which are key concerns. An additional focus of these trials was in the area of caregiving tasks and ways to diminish the burden of caregiving and preparedness for this role. Further research is needed in this area given the shift to outpatient care and as family caregivers become the primary providers of care. Future research should include expanding tested models of family caregiver support in clinical practice and in diverse populations. CA Cancer J Clin 2017. © 2017 American Cancer Society. CA Cancer J Clin 2017;67:318-325. © 2017 American Cancer Society.

Exploring the knowledge and skills for effective family caregiving in elderly home care: a qualitative study.

BACKGROUND: Family caregivers play a crucial role in providing physical, emotional, and social support to the elderly, allowing them to maintain their independence and stay in their preferred living environment. However, family caregivers face numerous challenges and require specific knowledge and skills to provide effective care. Therefore, understanding the knowledge and skills required for effective family caregiving in elderly home care is vital to support both the caregivers and the elderly recipients. METHODS: The research was carried out in Mekelle City, Ethiopia, utilizing the phenomenology study design and purposive sampling technique. A total of twenty-two in-depth interviews were conducted. Individuals with experience in providing care for elderly people in their homes were targeted. Data was gathered through the use of an open-ended guide, transcribed word-for-word, inputted into ATLAS.ti8 software, and translated. Codes and themes were then extracted from the transcribed data, and a thematic analysis was performed. To minimize personal biases, the collected data were coded independently by the data collection assistants and the PI. The analysis was carried out by authors who were not involved in the data collection process. The interviews were conducted in a quiet place. RESULTS: A total of 22 in-depth interviews were conducted as part of this research. The results indicated that although the participants had knowledge about common health problems experienced by older people, they were uninformed about how to manage these conditions at home and were unaware of specialized healthcare resources for the elderly. Furthermore, they had limited knowledge about suitable exercise routines, strategies to prevent falls, and home healthcare practices for older individuals. On the other hand, they exhibited a solid comprehension and awareness of abusive behaviors specifically directed at older adults. CONCLUSION: The results emphasized the importance of enhancing education and training for family caregivers in handling elderly health issues, raising awareness about specialized healthcare services catered to the elderly, improving understanding of activities of daily living (ADLs) and fall prevention, and offering inclusive training in healthcare tasks related to elder care. RECOMMENDATION: Participants should receive comprehensive education and training programs to enhance their knowledge and skills in managing these conditions. Efforts should also be made to raise awareness about the availability of geriatric hospitals or specialized nurses for the elderly. Participants need to be educated about suitable exercise routines for the elderly and fall prevention strategies. Healthcare skills training is also necessary for participants, focusing on activities such as wound dressing, vital sign monitoring, and establishing a specific schedule for changing positions.

mHealth based intervention by social care professionals to support family caregivers to persons with dementia living at home in Sweden (Caregiver Connect): a randomized controlled trial.

BACKGROUND: The majority of persons with dementia in Sweden reside in their own homes with support from family members. Approximately, 12% of persons with dementia have immigrant background. Within the next 20 years, the number of persons with dementia who are non-ethnic Swedes is said to double. Family caregivers with immigrant backgrounds are noted to receive less support in the community than ethnic Swedes and rate their health status lower than ethnic Swedish peers. The Swedish National Board of Health and Welfare have highlighted the importance of follow-up support for family caregivers with immigrant backgrounds as there is a recognized gap in research and available information tailored to meet the needs of this group. PURPOSE OF THE STUDY: The purpose of the study is to test effectiveness of an mHealth based intervention through which community social workers can improve caregiving competence of non-European immigrant family caregivers of people with dementia living at home in Sweden. The overarching aim is to reduce caregiver burden and depressive symptoms, and improve quality of life. METHODS: A randomized controlled trial (RCT) including wait list control group will be performed consisting of an intervention group (A, n = 44) and a wait list control group (B, n = 44), totaling a sample size of 88. On completion of the 10-weeks long intervention in the intervention group, the intervention will be delivered to group B. Effect of the intervention will be analyzed between and within groups over time. The content of the educational component of the intervention is inspired by the iSupport manual developed by the World Health Organization. The contents, in the form of a booklet, aims to equip the family caregivers with structured information on understanding dementia as a condition and its management at home, including self-care guidance designed specifically for family caregivers themselves. DISCUSSION: Similar telephone-delivered intervention studies targeted for family caregivers to persons with dementia are ongoing in Malaysia and will start in India using the same booklet adapted to the local context. These studies will provide evidence on the effectiveness of using digital technologies to deliver support to those who may not be reached or adequately served by the traditional healthcare system. TRIAL REGISTRATION: ISRCTN registry, Registration number ISRCTN64235563.

Associations Among Family Caregivers' Perceptions of Loneliness, Choice, and Purpose: a Comparative Analysis Between Non-Hispanic Black Caregivers and Non-Hispanic White Caregivers in a Population-Based Sample.

BACKGROUND: Loneliness is a frequent experience among family members engaging in caregiving responsibilities and may vary across racial and ethnic groups. This study aimed to examine (a) the difference in loneliness between non-Hispanic Black and non-Hispanic White caregivers, (b) the associations between loneliness and perceptions of choice and purpose in caregiving, and (c) whether those associations with loneliness differ by caregivers' race. METHOD: Descriptive statistics and ordinal logistic regression were conducted in a population-based sample of 1000 caregivers (Black caregivers, n = 199; White caregivers, n = 801) from the 2020 Caregiving in the U.S. STUDY: The survey design was properly addressed. Key variables included loneliness (level of feeling alone about being a caregiver), choice (whether or not reporting a choice in taking on the caregiver responsibility), sense of purpose (level of purpose/meaning in life from caregiving), and race (Black/White). Models adjusted for caregiving characteristics (e.g., hour of caregiving) and sociodemographic characteristics (e.g., age and education). RESULTS: Black caregivers had lower odds of reporting a higher level vs. a lower level of loneliness than White caregivers (aOR = 0.67, 95%CI = 0.47, 0.96). Reporting having no choice was associated with higher odds of a higher level of loneliness (aOR, 0.77, 95%CI = 0.67, 0.88). Higher sense of purpose scores were associated with lower odds of a higher level of loneliness (aOR = 0.81, 95%CI = 0.71, 0.93). No significant moderation effects of race were found. CONCLUSION: Black caregivers reported lower loneliness scores than White caregivers. Reporting no choice and lower sense of purpose were associated with higher loneliness in both racial groups.

Unveiling the dynamics of older person care: a qualitative exploration of the intersection between formal and Informal Caregiving from the perspectives of registered nurses in Greece.

In the evolving landscape of older person care, the imperative to explore holistic approaches persists, especially in regions with distinct societal norms around informal caregiving. The deeply ingrained tradition of familial caregiving, often led by female family members, has historically compensated for healthcare system gaps in less integrated systems. Hence, societal expectations may affect registered nurses' experiences and impact the quality of care for older persons. This study aims to describe the meaning of caring for older persons in care settings in Greece. Ten in-depth interviews with registered nurses in older person care settings underwent qualitative thematic analysis. Four themes emerged from the analysis: (i) Living and bonding with older people as a basis for caring, (ii) Caring as a double-faced fulfillment, (iii) A sense of insufficiency in the caring relationship, and (iv) The encounter of existential issues creating loneliness. This research provides insights into the meaning of caring for older persons, highlighting the experiences of the closest professional caregivers of older individuals. A specific capture of the entanglement of cultural norms, societal expectations, and their impact on professional caregivers' experiences may contribute to quality care provision in systems rooted in familial caregiving traditions.

Understanding the caregiving experiences of Asian Indian, Chinese, Korean, and Vietnamese American family care partners of persons living with dementia.

OBJECTIVES: Disparities impacting dementia health care exist in racial/ethnic minority groups, including Asian Americans, an understudied population in Alzheimer's disease and related dementias. The qualitative study explored caregiving experiences and potential cultural influences among Asian Indian, Chinese, Korean, and Vietnamese family care partners of persons living with dementia. METHODS: We conducted focus groups and individual interviews with 32 care partners from these four Asian subgroups using Zoom, WeChat, or telephone. RESULTS: Four themes emerged from the data: (1) Family obligations influencing caregiving decisions; (2) Evolving challenges related to dementia caregiving; (3) Caregiving burdens/negative impacts from caregiving (relationship burdens and emotional distress); and (4) Coping with their situation in their own ways (cognitive, behavioral, and social strategies).Conclusion: Cultural values (e.g. familism or filial piety) played a significant role in caregiving decisions and experiences. There was a need to raise public awareness of dementia and create culturally and linguistically appropriate training programs for this population.

Predictors of rewarded caregiving for family caregivers of person with dementia: A longitudinal study.

The purpose of this study was to explore variables associated with rewarded caregiving for family caregivers of persons living with dementia over a 2-year follow-up. This correlational longitudinal study was comprised of 200 family caregivers of persons living with dementia from neurological clinics of a medical center was conducted. Dichotomous scoring of the Rewards of Caregiving Scale of the Family Caregiving Inventory resulted in 61 (30.5%) caregivers being assigned to the well-rewarded group and 139 (69.5%) to the poorly reward group at baseline. Variables included characteristics of family caregivers and their care receivers and assessments with validated scales of caregivers' social support and dyadic relational variables of mutuality, preparedness, and balance. Analysis at baseline showed significant predictors of well-rewarded family caregivers were being an adult child of the care receiver, having a high perceived level mutuality and having a high perceived level of preparedness. These three variables remained as significant predictors at the 1- and 2-year follow-up. Caregivers with high levels of perceived mutuality and preparedness at 2-years were seven times more likely to perceive themselves as well-rewarded. Based on the findings, developing clinical interventions that focus on promoting mutuality and preparedness for family caregivers of persons with dementia could allow caregivers to perceive their role as rewarding. Attention should also be paid to the relationship between the caregiver and care receiver to enhance the family caregiver's feelings of mutuality and preparedness.

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

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

Effectiveness of a health education program for people with dementia and their family caregivers: An intervention by nurse practitioners.

PURPOSE: This study assesses the effectiveness of a health education program on caregiving outcomes for people with dementia and their families. METHODS: This quasi-experimental study involved 250 people with dementia and their family caregivers. Behavioral problems in people with dementia were assessed using the Chinese version of the Cohen-Mansfield Agitation Inventory-community form. Family caregiver outcomes were measured using the Agitation Management Self-Efficacy Scale, Caregiver Preparedness Scale, Competence Scale, and Community Resource Awareness and Utilization Assessment. RESULTS: Following the intervention, the experimental group demonstrated significant improvements in terms of self-efficacy, preparedness, competence, and awareness and utilization of community resources among family caregivers. Additionally, the experimental group exhibited lower levels of behavioral problems among people with dementia. CONCLUSIONS: This study helped improve caregiving outcomes for people with dementia and their family caregivers. Therefore, outpatient healthcare providers can utilize these findings to enhance care for this population.

The impact of "Aging with Medical and Caregiving" on family caregiving-Evidence from China's pilot cities for integrating medical and caregiving.

Easing the pressure on family caregiving and addressing the shortage of manpower for family caregiving are significant challenges that China faces in responding to its aging population. This study utilizes data from the 2015 and 2020 China Health and Retirement Longitudinal Study (CHARLS) and employs a Difference-in-Difference method to investigate the impact of pilot policies that integration of medical and caregiving for aging individuals. The findings reveal that these pilot programs are successful in reducing the amount of time spent on family caregiving and the financial burden placed on families, effectively relieving the pressure associated with family caregiving. However, the effects of these programs differ depending on the level of disability, household registration, and the geographical location of the participants. Further analysis suggests that these pilot programs achieve these positive outcomes by increasing government investment in health and wellness funds and providing in-family medical and caregiving services.

Caring for a parent with dementia: The psychological well-being of adult children.

BACKGROUND: Caregiving for a parent with dementia has both positive and negative influences on psychological well-being of adult children and perceived social support plays an essential role in dementia caregiving process. OBJECTIVES: We examined how the degree of caregiving intensity influences mental health among Chinese adult children then further explored how perceived social support influences the relationship between intensity and psychological well-being. RESEARCH DESIGN AND SETTING: Cross-sectional study in Kunming, mainland China between November 2022 and January 2023. METHODS: We interviewed 320 adult dementia child caregivers. Linear regression and multiple mediation analysis using Hayes' process model were used to assess the relationship between caregiving intensity and psychological well-being, as well as the mediating role of perceived social support. RESULTS: The study found that caregiving intensity was positively associated with depression and negatively associated with life satisfaction. A lack of perceived social support exacerbated these effects for the adult children. Specifically, the caregivers reported higher caregiving intensity when they perceived less family support, which is in turn associated with greater depression and lower life satisfaction among the caregivers. Likewise, those who reported higher caregiving intensity was reported lower friend support, which was in turn associated with greater depression. CONCLUSIONS AND IMPLICATIONS: The findings emphasize the importance of social support, especially family support, and the necessity for health practitioners to provide targeted interventions on both negative and positive aspects of psychological well-being among dementia caregivers and to strengthen caregivers' resources for social support to enhance their well-being. While these findings are cross-sectional, it is logical to assume that those who perceive less support feel that their caregiving responsibilities are more intense, and that intensity could cause the caregiver to withdraw from friends.

Perceived Benefits and Barriers of mHealth Mindfulness Use for Caregivers of Older Adults with Cognitive Impairment: A Qualitative Exploration.

OBJECTIVES: Mobile (mHealth) mindfulness-based interventions have the potential to be feasible, acceptable, effective, and scalable interventions for caregivers of people living with cognitive impairment. This qualitative study of caregivers of older adults with cognitive impairment explored caregivers' experiences using a mindfulness therapy mobile application. METHODS: Fifteen caregivers were interviewed using a semi-structured interview guide. Analysis was guided by the phenomenological approach and inductive-deductive analysis. RESULTS: Six themes were generated from the data: convenience, barriers, perceived helpfulness, useful features, suggested app improvements, and skill transfer. Caregivers reported that the app was easy to use with many perceived benefits. Caregivers also noted some barriers to using the app. CONCLUSIONS: This study revealed that self-directed mHealth delivered mindfulness therapy may be a promising intervention for the caregivers involved in the study. Having the ability to use the app anywhere and at any time was a prominent reason for continued regular use for the participants. This was especially important to some caregivers during the COVID-19 pandemic. The barriers discussed by the caregivers are important considerations for future app-based interventions for caregivers. CLINICAL IMPLICATIONS: Clinicians can consider recommending mHealth mindfulness therapy to caregivers as a tool to provide caregivers with additional support.

Can Informal Caregiving be Perceived as Rejuvenating? Changes in Perceptions of Ageing at Onset and End of Informal Caregiving during Different Stages of Life.

INTRODUCTION: Perceptions of ageing are a central predictor of health, wellbeing, and longevity. This study analyses the association between the onset and end of informal caregiving and perceptions of ageing in different stages of life. METHODS: Data from the German Aging Survey (2014, 2017) were used; a longitudinal dataset that is representative of community-dwelling individuals aged ≥40 years in Germany. Adjusted asymmetric fixed effects regression analyses were conducted to analyse the associations in three age groups (40 to <60, 60 to <80, and ≥80). Perceptions of ageing were measured in terms of attitude towards one's own ageing (Philadelphia Geriatric Centre Morale Scale), subjective age (felt age), and onset of old age (when someone is considered to be old). RESULTS: Significant changes in the perceptions of ageing were found only among individuals aged ≥80 years. In this group, the onset of informal caregiving was significantly associated with improved attitude towards one's own ageing and the end of informal caregiving was significantly associated with increased subjective age and earlier onset of old age. CONCLUSION: The perceptions of ageing improved with the onset and worsened with end of caregiving - but only among oldest old individuals. Thus, informal caregiving seems to be a significant predictor for perceptions of ageing in old age.

Associations of perceived stress, depressive symptoms, and caregiving with inflammation: a longitudinal study.

OBJECTIVES: Higher inflammation has been linked to poor physical and mental health outcomes, and mortality, but few studies have rigorously examined whether changes in perceived stress and depressive symptoms are associated with increased inflammation within family caregivers and non-caregivers in a longitudinal design. DESIGN: Longitudinal Study. SETTING: REasons for Geographic And Racial Differences in Stroke cohort study. PARTICIPANTS: Participants included 239 individuals who were not caregivers at baseline but transitioned to providing substantial and sustained caregiving over time. They were initially matched to 241 non-caregiver comparisons on age, sex, race, education, marital status, self-rated health, and history of cardiovascular disease. Blood was drawn at baseline and approximately 9.3 years at follow-up for both groups. MEASUREMENTS: Perceived Stress Scale, Center for Epidemiological Studies-Depression, inflammatory biomarkers, including high-sensitivity C-reactive protein, D dimer, tumor necrosis factor alpha receptor 1, interleukin (IL)-2, IL-6, and IL-10 taken at baseline and follow-up. RESULTS: Although at follow-up, caregivers showed significantly greater worsening in perceived stress and depressive symptoms compared to non-caregivers, there were few significant associations between depressive symptoms or perceived stress on inflammation for either group. Inflammation, however, was associated with multiple demographic and health variables, including age, race, obesity, and use of medications for hypertension and diabetes for caregivers and non-caregivers. CONCLUSIONS: These findings illustrate the complexity of studying the associations between stress, depressive symptoms, and inflammation in older adults, where these associations may depend on demographic, disease, and medication effects. Future studies should examine whether resilience factors may prevent increased inflammation in older caregivers.

Family caregiver roles and challenges in assisting patients with cancer treatment decision-making: Analysis of data from a national survey.

BACKGROUND: We aimed to describe the roles and challenges of family caregivers involved in patients' cancer treatment decision-making. METHODS: Family caregiver-reported data were analyzed from a national survey conducted in the United States by CancerCare® (2/2021-7/2021). Four select-all-that-apply caregiver roles were explored: (1) observer (patient as primary decision-maker); (2) primary decision-maker; (3) shared decision-maker with patient and (4) decision delegated to healthcare team. Roles were compared across five treatment decisions: where to get treatment, the treatment plan, second opinions, beginning treatment and stopping treatment. Ten challenges faced by caregivers (e.g., information, cost, treatment understanding) were then examined. χ2 and regression analyses were used to assess associations between roles, decision areas, challenges and caregiver sociodemographics. RESULTS: Of 2703 caregiver respondents, 87.6% reported involvement in patient decisions about cancer treatment, including 1661 who responded to a subsection further detailing their roles and challenges with specific treatment decisions. Amongst these 1661 caregivers, 22.2% reported an observing role, 21.3% a primary decision-making role, 53.9% a shared decision-making role and 18.1% a role delegating decisions to the healthcare team. Most caregivers (60.4%) faced ≥1 challenge, the most frequent being not knowing how treatments would affect the patient's physical condition (24.8%) and quality of life (23.2%). In multivariable models, being Hispanic/Latino/a was the strongest predictor of facing at least one challenge (b = -0.581, Wald = 10.69, p < .01). CONCLUSIONS: Most caregivers were involved in patients' cancer treatment decisions. The major challenge was not understanding how treatments would impact patients' physical health and quality of life. Challenges may be more commonly faced by Hispanic/Latino/a caregivers. PATIENT OR PUBLIC CONTRIBUTION: The CancerCare® survey was developed in partnership with caregiving services and research experts to describe the role of cancer family caregivers in patient decision-making and assess their needs for support. All survey items were reviewed by a CancerCare advisory board that included five professional patient advocates and piloted by a CancerCare social worker and other staff who provide counselling to cancer caregivers.

Family caregiver involvement and role in hospital at home for adults: the patients' and family caregivers' perspective - a Norwegian qualitative study.

BACKGROUND: Hospital at home (HaH) provides acute healthcare services in patients' homes instead of traditional in-patient care. Research has reported positive outcomes for patients and reduced costs. Although HaH has developed into a global concept, we have little knowledge about the involvement and role of family caregivers (FCs) of adults. The aim of this study was to explore FC involvement and role during HaH treatment as perceived by patients and FCs in a Norwegian healthcare context. METHODS: A qualitative study was carried out among seven patients and nine FCs in Mid-Norway. The data was obtained through fifteen semi-structured interviews; fourteen were performed individually and one as duad interview. The age of the participants varied between 31 and 73 years, and mean age of 57 years. A hermeneutic phenomenological approach was used, and the analysis was performed according to Kvale and Brinkmann's description of interpretation. RESULTS: We identified three main categories and seven subcategories regarding FC involvement and role in HaH: (1) Preparing for something new and unfamiliar, including the subcategories `Lack of involvement in the decision process` and `Information overload affecting caregiver readiness`, (2) Adjusting to a new everyday life at home, including the subcategories `The critical first days at home`, `Coherent care and support in a novel situation`, and `Prior established family roles influencing the new everyday life at home`, (3) FCs` role gradually diminishes and looking back, including the subcategories `A smooth transition to life beyond hospital at home` and `Finding meaning and motivation in providing care`. CONCLUSIONS: FCs played an important role in HaH, although their tasks, involvement and effort varied across different phases during HaH treatment. The study findings contribute to a greater understanding of the dynamic nature of the caregiver experiences during HaH treatment, which can guide healthcare professionals on how they can provide timely and appropriate support to FCs in HaH over time. Such knowledge is important to decrease the risk of caregiver distress during HaH treatment. Further work, such as longitudinal studies, should be done to examine the course of caregiving in HaH over time to correct or support the phases described in this study.

The transition to family caregiving and its effect on biomarkers of inflammation.

Chronic stress has been widely proposed to increase systemic inflammation, a pathway that may link stress with a heightened risk for many diseases. The chronic stress-inflammation relationship has been challenging to study in humans, however, and family caregiving has been identified as one type of stressful situation that might lead to increased inflammation. Previous studies of caregiving and inflammation have generally used small convenience samples, compared caregivers with poorly characterized control participants, and assessed inflammation only after caregivers provided care for extended periods of time. In the current project, changes over a 9-y period were examined on six circulating biomarkers of inflammation for 480 participants from a large population-based study. All participants reported no involvement in caregiving prior to the first biomarker assessment, and 239 participants then took on extensive and prolonged family caregiving responsibilities at some point prior to the second biomarker assessment. Incident caregivers were individually matched on multiple demographic and health history variables with participants who reported no caregiving responsibilities. Of the six biomarkers examined, only tumor necrosis factor alpha receptor 1 showed a significantly greater increase in caregivers compared with controls. This effect was small (d = 0.14), and no effects were found for a subset of 45 caregivers who were living with a spouse with dementia. These results are consistent with recent meta-analytic findings and challenge the widespread belief that caregiving is a substantial risk factor for increased inflammation. Future research is warranted on factors that may account for stress resilience in family caregivers.

'Why should I feel guilty? I always give my best'. Guilt in Spanish women caring for dependent relatives from a gender perspective.

OBJECTIVES: The sense of guilt in informal caregivers has been associated with lower levels of overall life-satisfaction, an increase in feelings of overwork, stress, and health problems, including anxiety and depression. Even though women who care for dependent relatives have higher levels of feelings of guilt than male caregivers, little research has been done on the dynamics of guilt from a gender perspective. This study examines the dynamics of this moral emotion in women caregivers' psychosocial health. METHODS: This study is based on semi-structured interviews with nineteen Spanish women who are informal caregivers looking after dependent family members. The interviews were subsequently transcribed and subjected to thematic analysis. RESULTS: Three themes emerged from qualitative analysis: first, doing more for the people being cared for than for oneself; secondly, being demanding on oneself; and thirdly, controlling one's own desires. CONCLUSION: The results show dynamics of self-control that seem to function as mechanisms for the women caregivers to avoid feelings of guilt, but at the price of taking on greater caring responsibilities, denying their own desires, and endangering their psychosocial health. We consider that intervention to help women reduce anticipatory guilt is essential, as these feelings put women caregivers' psychosocial health at risk.

Positive aspects of caregiving in incident and long-term caregivers: Role of social engagement and distress.

OBJECTIVES: Positive caregiver adaptation over time may be associated with reports of positive aspects of caregiving (PAC). We examined differences in PAC by caregiving duration and social engagement, controlling for measures of distress. METHODS: Participants included 283 African American or White caregivers from the Caregiving Transitions Study with a wide range of caregiving durations. PAC are defined as positive appraisals that caregivers report about their role, such as feeling appreciated or confident. We fit multivariable linear models with the total PAC score as the outcome to assess its association with years of caregiving and social engagement (social network, monthly social contact). Models were adjusted for age, sex, race, marital status, relationship to care recipient, care recipient's dementia status, perceived stress and caregiving strain. RESULTS: Caregivers with higher social engagement reported significantly higher PAC. A non-significant trend was found in most analytic models for caregivers with longer duration of care to report higher PAC. African American caregivers reported higher PAC compared to White caregivers. Dementia caregivers reported lower PAC than non-dementia caregivers in models adjusting for demographics and social network size, but the association was attenuated with the addition of caregiving strain. DISCUSSION: Higher social engagement and longer duration of care tend to be associated with higher PAC after adjusting for demographics and measures of distress. Future studies should aim to leverage longitudinal data to understand whether caregivers shift appraisal to positive aspects of their role and explore implementation of caregiving interventions targeting PAC in order to improve the caregiving experience.