Adult Child Caregivers Research Articles

1247 CONNECTING THROUGH CAREGIVING: PERSPECTIVE-TAKING INTERVENTIONS FOR ADULT CHILD CAREGIVERS OF PERSONS LIVING WITH DEMENTIA

Abstract Introduction With the unprecedented population growth of older adults worldwide, higher life-expectancies are creating increasingly more multigenerational interaction. Funded by the General Research Fund of the Research Grant Council in Hong Kong, the study examined the effects of perspective-taking intervention in the context of intergenerational caregiving. Method One-hundred seventy-two adult child caregivers of persons living with Alzheimer’s disease (AD) were randomised into two twelve-week interventions: 1) Connecting through Caregiving with intergenerational perspective-taking reappraisals (CTC: 91 participants) and 2) Basic Skill Building (BSB: 81participants). Both groups receive the basic skills training including 1) monitoring mood and scheduling pleasant events and 2) communication with the care recipient and 3) communication skills with other family member and helping professionals. The CTC group spends less time on basic skills and focused on perspective-taking reappraisals aiming to promote balance between self-care and caring of others. These reappraisals include: 1) connecting with self through enhancing self-awareness, 2) connecting with the care-recipient and 3) connecting with others who can help. Results In terms of primary outcomes, as compared to the BSB group, the CTC group reported significantly greater reductions in depressive symptoms and higher levels of psychological well-being. For the secondary outcomes, the CTC group scored higher in emotional and instrumental support and also lower levels of perceived presence and reaction to behavioural and memory problems of the care recipient. Perspective-taking was found to mediate between intervention effects and reduction of depressive symptoms of the caregiver. Conclusion The results provided evidence for the efficacy of the CTC program. With population aging, there is a rapid increase of people suffering from dementia and those who will provide caregiving. The study contributes towards enhancing sustainability of caregiving in dementia. The present findings can be relevant to countries where the demand for family caregiving is high due to collectivistic concerns.

The Challenges of Caring for an Adult Child with Schizophrenia in the Family: An Analysis of the Lived Experiences of Older Parents.

The present study aimed to investigate the lived experiences of older parents regarding the challenges in caring for adult children with schizophrenia. The current study was conducted on 16 parental (mother or father) caregivers of adult children with schizophrenia using a descriptive phenomenological qualitative approach and Colaizzi's seven-step method. This study follows the Qualitative Research Checklist (COREQ). The findings showed that the parent caregivers' experiences could be classified into two main themes: "burden of care" and "Negative attitude and inefficient performance." The former consisted of three sub-themes including "disrupted social and family interactions," "helplessness and inefficient support," and "challenges of the healthcare system," while the latter had two sub-themes including "Negative attitude and inefficient performance of the caregivers" and "Negative attitude and inefficient performance of families and society." Older parents have to tolerate a significant burden of care due to their age and physical conditions. Improving the knowledge of specialists, the government's redoubled efforts in multifaceted support for patients and caregivers, creating an integrated team of specialists, and accepting and improving public attitudes against stigma and obvious discrimination in society as important priorities in improving the condition of caregivers and patients with schizophrenia were considered.

SOCIAL PARTICIPATION AND DEPRESSIVE SYMPTOMS AMONG SPOUSAL AND ADULT CHILD CAREGIVERS

Abstract Participating in social activities through formal (e.g., social or religious organizations) and informal (e.g., gatherings with family members or friends) avenues is known to positively contribute to mental wellbeing. Family caregivers are at risk for limited social participation and increased depressive symptoms. However, little is known about which social activities are associated with depressive symptoms among spousal and adult child caregivers. The purpose of this study was to examine the effects of participating in various social activities on depressive symptoms among spousal (n=422) and adult child (n=1,112) caregivers using data from the 2017 wave of the National Study of Caregiving. Caregivers reported on participating in six social activities in the past month (e.g., visiting family and friends, attending religious services, doing volunteer work, working for pay) and completed the 2-item Patient Health Questionnaire to assess depressive symptoms. Data were analyzed using multiple linear regression, with separated models for spousal and adult child caregivers. Sociodemographic characteristics, self-rated health, and dementia caregiving status were included as covariates. For spousal caregivers, visiting friends or family and attending religious services were associated with lower depressive symptoms (b=-.55, p=.010 and b=-.33, p=.036, respectively). For adult child caregivers, going out for enjoyment was associated with lower depressive symptoms (b=-.80, p<.001). Findings suggest that spousal and adult child caregivers may benefit from participating in different types of social activities. Interventions targeting social participation to reduce depressive symptoms need to be tailored to the needs and preferences of spousal and adult child caregivers to be most effective.

HEALTH BEHAVIORS AND MENTAL HEALTH OUTCOMES OF INFORMAL CAREGIVERS DURING THE COVID-19 PANDEMIC

Abstract Differences exist in health behaviors and mental health outcomes between spouse and adult children caregivers and between caregivers of individuals with or without dementia. We aimed to examine the change in health behaviors and mental health outcomes of informal caregivers of older adults during the COVID-19 pandemic and explore disparities based on caregiver relationship and care recipient. Using the 2020 National Health and Aging Trends Study (NHATS) COVID-19 supplement for Family Members and Friends, our sample included adult family or friend caregivers of Medicare beneficiaries aged 65 or older in the US (N = 2,062). We used ANOVA and two-way ANCOVA to assess the effects of the pandemic, caregiver relationship type, and care recipient condition (dementia vs. non-dementia) on seven health behaviors and two mental health outcomes. We performed all post hoc analyses using Bonferroni corrections controlling the covariates age, gender, marital status, education, and self-reported health of the caregiver. Compared to before the pandemic and to spouse caregivers, adult children caregivers reported: 1) significantly less time walking and significantly more time watching TV or online programs, and 2) a significantly higher level of emotional distress and depressive symptoms. Compared to caregivers for people without dementia, those who provide care for people with dementia experienced less sleep and a higher level of depressive symptoms during the pandemic than before the pandemic. Health professionals should consider the impact of COVID-19 and the vulnerability of adult children caregivers and caregivers of individuals with dementia when designing and delivering health and wellness programs.

CARING FOR PARENTS AND IN-LAWS IN CHINA: IMPLICATIONS FOR COGNITIVE FUNCTIONING OF ADULT CHILD CAREGIVERS

Abstract Considerable research and public discourse on family caregiving portrays it as a stressful and burdensome experience with serious negative health consequences. Yet, there is also recent evidence indicating better health status in caregivers compared to non-caregivers. Especially for cognitive health, caring for others involves cognitively stimulating activities that can help prevent cognitive decline. Although the negative consequences of eldercare on the mental and physical health of caregivers are well-documented, how it would affect their cognitive functioning is underexplored. Using three waves of nationally representative data in China, the China Health and Retirement Longitudinal Study (CHARLS, 2011, 2013, 2018), this study investigated the longitudinal association between parental caregiving and cognitive functioning among adult child caregivers, and further examined how this association was conditioned on the relationship type (parent versus in-law), caregiving frequency, and gender of adult children. Descriptive analysis indicated that women are more likely to be occasional caregivers for their own parents and regular caregivers for parents-in-law compared to men. Results from multilevel mixed-effects models showed that caring for own parents was beneficial for adult children’s cognitive functioning whereas caring for parents-in-law was not significantly associated with their cognitive functioning. Both sons and daughters benefited from caring for their own parents although the beneficial effect was stronger for sons. Thus, we recommend to consider relationship types between caregivers and care-recipients when investigating informal caregiving and various health outcomes. Furthermore, we suggest more policies and programs that aim to help children-in-law who look after their parents-in-law.

MEANING FOCUSED COPING: IMPLICATIONS FOR FAMILY CAREGIVER BURDEN AND POSITIVE ASPECTS OF CARE

Abstract The Stress Process Model (Pearlin et al., 1991) posits that different styles of coping influence both positive and negative psychological outcomes in family caregivers. Meaning-focused coping is hypothesized to promote positive psychological experiences, but presently it is unclear how meaning-focused coping is related to caregiver burden. The present study tested the associations among meaning-focused coping, indicators of burden, and positive aspects of care in adult child and spousal caregivers of older adults with dementia. An online sample of caregivers ranging in age from 30-68 (n = 219) completed a measure of meaning-focused coping (COPE-PRG; Carver et al., 1989) and the Caregiver Reaction Scale (CRS; O’Malley & Qualls, 2016) which assessed overload, role captivity, personal growth, and competence. Regression analyses indicated that meaning-focused coping predicted less role captivity and predicted greater personal growth and competence. However, meaning-focused coping did not account for significant variance in perceived overload. The findings extend prior research by demonstrating that meaning-focused coping strategies may faciliate positive aspects of care during chronically stressful experiences such as caregiving. Findings highlight that meaning-focused strategies may be more helpful for coping with role captivity (e.g., feeling unable to participate in work or family roles outside of caregiving) and less helpful for coping with subjective overload (e.g., a sense of overwhelm) in caregivers. Results inform clinical interventions that promote meaning and reduce burden in caregivers.

POSITIVE EMOTION EXPRESSION AND ADAPTIVE COPING BEHAVIORS FOR ADULT CHILDREN OF PARENTS WITH MEMORY LOSS

Abstract The broaden-and-build theory suggests that experiences of positive emotion may lead to enhanced utilization of adaptive coping strategies, and a decrease in maladaptive coping strategies (Gloria & Steinhardt, 2016). This relationship between positive emotion and adaptive coping has yet to be studied directly in a sample of adult child caregivers of a parent with memory loss. As part of a larger study investigating relationship dynamics between adult children and their parents with memory loss, adult children 18 years of age and older (n= 67) responded to self-report surveys and engaged in a 6 minute, video recorded, positive interaction session, playing “name that tune” with each other. The session was observationally coded by two coders for “enjoyment/enthusiasm/fun” (k= .516), “laughter” (k= .631), and “positive affect displayed towards partner” (k=.464), using a reliable and valid support-seeking and caregiving behavior coding system (Collins & Feeney, 2000). Spearman’s rank correlations between these behavior codes and the self-reported Brief COPE Inventory (BCI) scores suggested positive correlations between “laughter” and the emotional support subscale of the BCI (rs=.259, p= .034), and between “positive affect displayed towards partner” and the venting subscale of the BCI (rs= .256, p= .036). These findings suggest that the expression of positive emotions in the caregiving process might yield important psychological benefits to the caregiver, through increased utilization of specific coping mechanisms. More research in this area is needed to determine whether positive emotion expression is associated with the use of adaptive coping more so than maladaptive coping mechanisms in this population.

Quality of relationship between adult children caregivers and parents with dementia

The main effects for associations between psychosocial stressors and caregiver outcomes are well established, but little is known about the mechanisms of these relationships. Aims of this study were to examine the hypotheses that satisfaction with family relationships (SF) is a mechanism by which quality of relationship (QR) between adult children caregiver and parents with Alzheimer’s disease (AD) influences depression, life satisfaction (LF), and self-rated health (SRH) among these caregivers. The participants were 716 Brazilian adult children who cared for their parents with AD and related disorders. Regression-based path analysis was performed; a PROCESS, bias-corrected and accelerated bootstrapping method was used to test confidence intervals. The relationships between QR and both depression (B = .3263, p < .001) and SRH (B = .3263, p < .001), were fully mediated by SF. The relationship between QR and LF was partially mediated by SF. The primary finding is that SF is one mechanism by which QR relates to depressive symptomatology, self-rated health, and life satisfaction.

How Do Own and Siblings' Genders Shape Caregivers' Risk of Perceiving Care-Related Criticism From Siblings?

Caring for a parent takes a greater psychological toll on daughters than sons. To minimize the psychological burden of parent care, it is important to understand what contributes to this gender disparity. Inspired by the caregiver stress process model and gender-as-relational perspective, we investigate how caregivers' gender, and the genders of their siblings, shape their risk of perceiving care-related criticism from siblings, a secondary stressor of caregiving with negative implications for psychological well-being. Using data from 408 adult child caregivers nested within 231 families collected as part of the Within-Family Differences Study, we employ multilevel modeling to examine how caregivers' gender, as well as the gender composition of their sibship, interact to shape caregivers' probability of perceiving criticism from siblings regarding the care that they provide their mother. Qualitative data from the same caregivers are then analyzed to illuminate processes underlying these statistical associations. Quantitative analyses reveal that daughters in predominantly-son sibships have a lower risk of perceiving care-related criticism than daughters in sibships with higher proportions of daughters. Qualitative analyses elucidate these findings. Daughters in predominantly-son sibships report that their siblings defer to them regarding their mother's care. Conversely, daughters in higher proportion-daughter sibships perceive care-related criticism because they and their sibling(s) hold conflicting views regarding care, and there is less consensus regarding who best understands their mother's care needs and preferences. Findings demonstrate how characteristics of caregivers and their sibships interact to affect caregivers' risk of perceiving criticism regarding their care to their mothers.

"We Moved Her Too Soon": Navigating Guilt Among Adult Child and Spousal Caregivers of Persons Living with Dementia Following a Move into Residential Long-Term Care.

Guilt is a complex and multifaceted emotion navigated by many family caregivers. Guilt is sometimes experienced following a transition into a residential long-term care facility, even when the move is necessary given high care needs related to Alzheimer's disease and related dementias. This mixed methods study identifies and compares areas of guilt most frequently experienced by spouse and adult child caregivers (N=83) of a family member with dementia following transition into residential long-term care. Nearly half of caregivers reported experiencing guilt from their care recipient, other family members, or facility staff. Quantitative analyses explored variables that predict heightened feelings of guilt, and qualitative thematic analyses provided rich insight into subjective experiences of guilt. Person-specific and situational characteristics influenced caregiver guilt, including level of involvement in care, frequency and quality of visits, and perceptions of the residential long-term care facility. We identify specific opportunities for tailored couple and family psychology interventions including communication strategies, decision-making approaches, focusing on positives, psychoeducation, self-forgiveness exercises, stress management and self-care activities, and validation. The present work informs how counseling interventions can provide practical support by highlighting specific clinical mechanisms that help to alleviate common facets of caregiver guilt following a transition into residential long-term care. Critically, we distinguish variation between spouses and adult children to design treatment plans that best support clients who are caring for a person living with dementia in residential long-term care.

Preliminary Analysis of Aspects of Caregiving among Spousal Caregivers and Adult Child Caregivers for Persons with Dementia

AbstractBackgroundWhile dementia caregiving experiences may vary across individuals, many studies have focused on the negative aspects of caregiving and reducing caregiver burden and stress. Understanding both positive and negative aspects of caregiving is essential, particularly between different caregiver types. This study aimed to compare positive and negative caregiving experiences between spousal and adult child caregivers. We also examined whether the caregiver type (spousal caregivers vs. adult child caregivers) is a significant factor predicting these caregiving experiences.MethodWe analyzed baseline data from an ongoing trial to manage sleep problems among persons with dementia (PwD) and their caregivers. Demographic data, Positive Aspects of Caregiving (PAC), Zarit Burden Interview (ZBI), and Center for Epidemiological Studies of Depression (CESD) data were collected from 39 caregivers (n = 27 spouses, n = 12 adult children; 82% women, 54% Whites). Descriptive and bivariate analyses and multiple regression models were conducted.ResultAdult child caregivers reported that providing care for their loved one made them feel more appreciated than spousal caregivers (4.25±1.21 vs. 3.48±0.97, respectively); however, they felt more stress when caring for the PwD and trying to meet other family and work responsibilities (2.75±0.86 vs. 2.07±0.99, respectively) and felt they should be doing more for the PwD (2.17±0.71 vs. 1.30±1.07, respectively; all p<0.05) than did spousal caregivers. No significant differences were found in the PAC and the ZBI total scores by caregiver type. In a separate regression model, CESD total score was the only significant factor predicting PAC and ZBI total scores, controlling for caregiver type, race (Whites vs. others), level of education, employment status, and years of caregiving. However, only the model predicting the ZBI total score was statistically significant (p<0.01, adjusted R2 = 54%).ConclusionThese preliminary findings suggest a critical need to better understand positive and negative caregiving experiences, particularly among adult child caregivers. Assessment of depressive symptoms should be included when examining caregiving experiences among spousal and adult child caregivers. Future studies are warranted to test whether characteristics of PwD or support received by caregivers would contribute to positive or negative caregiving experiences across caregiver types.

A national profile of sandwich generation caregivers providing care to both older adults and children.

Many U.S. caregivers provide care to the generation above and below simultaneously, described as "sandwich" generation caregivers. We seek to provide the first national estimates characterizing sandwich generation caregivers and the older adults for whom they care. We used the 2015 National Study of Caregiving (NSOC) and National Health and Aging Trends Study (NHATS) to compare individual (demographic, socio-economic, health, and caregiving characteristics) and caregiving-related experience (financial and emotional difficulties, caregiver role overload and gains, supportive services, employment and participation restrictions) between sandwich and non-sandwich generation caregivers. The analysis included adult child caregivers with or without any minor child under 18 years (n=194 and 912 NSOC respondents, respectively) providing care to n=436 and 1217 older adult NHATS respondents. Of all adult child caregivers, 24.3% also cared for a minor child (i.e., sandwich generation caregivers), representing 2.5 million individuals. Sandwich generation caregivers provided similar care hours to older care recipients as non-sandwich caregivers (77.4 vs. 71.6 h a month, p=0.60), though more of them worked for pay (69.4% vs. 53.9%, p=0.002). Both sandwich generation caregivers (21.0% vs. 11.1%, p=0.005) and their care recipients (30.1% vs. 20.9%, p=0.006) were more likely to be Medicaid enrollees than their non-sandwich caregiving counterparts. More sandwich generation caregivers reported substantial financial (23.5% vs. 12.2%, p < 0.001) and emotional difficulties (44.1% vs. 32.2%, p=0.02) than non-sandwich caregivers; they also reported higher caregiver role overload (score: 2.9 vs. 2.4, p=0.04). Their supportive services use was similarly low as non-sandwich caregivers except for seeking financial help (24.8% vs. 14.7%, p=0.008). Besides caring for minor child(ren), sandwich generation caregivers provided similarly intense care to care recipients as non-sandwich caregivers and had higher labor force participation; they experienced more caregiving-related financial and emotional difficulties and role overload. Policymakers may consider supportive services that address their unique needs and roles.

Evaluation of virtual caregiver support groups for young-onset dementia family caregivers

ABSTRACT A model of a virtual psychotherapeutic support group was developed for young-onset dementia (YOD; people with dementia under the age of 65) caregivers; one group for adult children and one for spouses. This pilot study evaluated the impact of support groups on YOD caregivers’ psychosocial well-being, coping abilities, and knowledge. At post, psychosocial measures revealed an increase in the number of coping strategies rated as helpful among the 13 spousal and 14 adult children caregivers who completed the study. Adult children were observed to have a reduction in both the negative impact of caregiving and depression scores. Caregivers reported that being able to share experiences with other caregivers in similar circumstances helped them feel supported and less alone. The virtual support groups demonstrated the potential to reduce the negative impact of caregiving, especially among adult children, and showed that the groups could improve knowledge and capacity building for all caregivers.

Adult Children as Caregivers: Preliminary Study on the Experiences and Coping Strategies of Adult Children as Primary Caregivers of Parents with Alzheimer’s Disease in Malaysia

Alzheimer&amp;rsquo;s Disease (AD) is an irreversible brain disorder that affects thinking, memory, reasoning, and daily functioning. According to World Health Organization (2020), there are approximately 50 million people diagnosed with AD, and nearly 60% of them are living in low- and middle-income countries. In Malaysia, the prevalence of dementia is 8.5% among older adults aged 60 and above. Listed as one of the leading causes of death in 2020, curbing AD is not only a burden to the public health system but also brings perpetual stress to the family members who often undertake the primary caregiving role. The research has indicated that adult children as AD patients&amp;#39; primary caregivers (adult-child caregivers) experience higher psychological burdens than other caregiver groups. This qualitative study intended to explore the experiences and coping strategies of adult children as the primary caregivers of AD patients in Malaysia. The recruitment was conducted with the assistance of the Alzheimer&amp;rsquo;s Disease Foundation Malaysia, whereby eight participants took part in the in-depth interviews. Both face-to-face and telephone interviews were conducted to facilitate the full engagement of the participants in the research. Thematic analysis technique was used to analyze the data. The results showed that, at the personal level, adult children constantly felt emotional burnout, as they were overwhelmed by not knowing how to manage the stress they experienced. The findings reflected that caregiving for parents with AD involves a process that was depicted as the discovery of behavior changes, having difficulties accepting the diagnosis, making an adjustment to the role of a caregiver, and finally accepting their function and the reality of the disease. Recommendations for interventions and further research have been discussed.

Patients’ and Caregivers’ Experiences With Atopic Dermatitis–Related Burden, Medical Care, and Treatments in 8 Countries

Previous studies have documented the high patient and caregiver burden associated with atopic dermatitis (AD). Less is known about the factors-especially those related to treatment options and the delivery of medical care-that may relate to burden and unmet needs among patients and their caregivers. Our primary aim was to characterize and compare health-related quality of life, long-term control of symptoms, satisfaction with treatments, the financial burden, and the prevalence of patient-centered care among adult and pediatric patients with AD in 8 developed nations. We developed a 53-item anonymous online survey for adult patients and caregivers of children with AD (N= 3171; self-reported disease severity: 8.2% clear, 33.2% mild, 41.1% moderate, 17.6% severe). The survey included questions across 7 domains selected by a steering committee of 11 patient organizations that advocate for patients with AD in the 8 countries. We used validated instruments when available including the 5-level EuroQol five-dimensional questionnaire and the Atopic Dermatitis Control Tool. The survey was offered in 5 languages and promoted through social media and other communication channels of the patient organizations. The health-related quality-of-life scores for adult patients with AD (driven by 2 domains: pain/discomfort and anxiety/depression) were worse than those reported for asthma and type 2 diabetes in previous studies (0.72; 95% CI, 0.65-0.78). Patients and caregivers reported substantial financial impacts even in countries with government-funded health care systems, though the greatest impact was in the United States. In all countries, adults reported better control of symptoms than children, but neither group nor any nationality reported adequate control on average (rescaled mean, 57.5; 95% CI, 56.1-58.9), and control correlated negatively with disease severity. Similarly, satisfaction with treatments, which was moderate across countries on average, was much lower for respondents with more severe disease symptoms (F(3,3165)= 5.5; P < .001). Patients who saw a specialist (a dermatologist or an allergist) instead of a general practitioner for AD care indicated better long-term control of symptoms (by 4 points on average on the 100-point scale; 95% CI, 2.6-5.4; P < .001). Finally, self-management training and shared decision making were uncommonly reported by patients in all countries except by respondents from the United States, but both were associated with better long-term control of symptoms and higher satisfaction. The burden of AD, evaluated as health-related quality-of-life detriments, financial impacts, and uncontrolled symptoms, is significant and highest for patients with more severe atopic dermatitis who report greater challenges in achieving symptom resolution with existing treatments and approaches to care. The better outcomes associated with respondents who saw specialists suggest that patients, especially those with more severe AD, might benefit from medical care that is guided by providers with more in-depth knowledge of this complex condition. Finally, wider use of patient-centered care practices (specifically, self-management training and shared decision making) could improve outcomes and boost satisfaction with treatments for AD, though more research on this topic is warranted.

Psychometric evaluation of the depression anxiety stress scale 8-items (DASS-8)/DASS-12/DASS-21 among family caregivers of patients with dementia.

Patients with dementia express a set of problematic and deteriorating symptoms, along with self-care dependency. Over time, the mental health of family caregivers of persons with dementia may be affected, putting them at a high risk for psychopathology, which may be associated with endangered wellbeing of people with dementia. This cross-sectional instrumental design study examined the psychometric properties of the Depression Anxiety Stress Scale 8-items (DASS-8), DASS-12, and DASS-21 in a convenient sample of 571 caregivers from northern Italy and southern Switzerland (mean age = 53 years, SD = 12, range = 24-89 years). A bifactor structure of the three measures had the best fit; some items of the DASS-12/DASS-21 failed to load on their domain-specific factors. The three-factor structure was invariant across various groups (e.g., gender and education), expressed adequate reliability and convergent validity, and had strong positive correlation with the three-item UCLA Loneliness Scale (UCLALS3). Distress scores did not differ among carers of different types of dementia (Alzheimer's disease vs. other types, e.g., vascular dementia). However, distress scores were significantly high among female individuals, adult children caregivers, those caring for dependent patients, and those who received help with care. For 54.9 and 38.8% of the latter, care was provided by relatives and health professionals, respectively. Since the DASS-8 expresses adequate psychometrics comparable with the DASS-21, it may be used as a brief measure of distress in this population.

The Relationship Between Dual Filial Piety and Caregiver Burden Among Arab Family Caregivers in Israel.

The current study examined the association between dual filial piety (FP) (reciprocal and authoritarian) and caregiver burden in adult children caregivers and attempted to understand the underlying mechanisms of these links. A cross-sectional study of 222 family caregivers of older relatives in an Arab community in Israel was performed. Data were collected via face-to-face interviews in Arabic using structured questionnaires. Bootstrapping with resampling strategies tested the multiple mediator model. Reciprocal and authoritarian components of FP were associated negatively with caregiver burden. The link with reciprocal FP was partially mediated by role engagement and relationship strain between caregiver and care recipient, whereas the link between authoritarian FP and caregiver burden was mediated by role engagement, but not by relationship strain between caregiver and care recipient. The study highlights the positive effect of cultural values (dual FP) and the underlying mechanisms working against the harmful effects of caregiving stressors in traditional societies, such as Arab-Israeli society. Practitioners should be sensitive to issues of family cultural values and family care among traditional populations. [Research in Gerontological Nursing, 15(6), 293-302.].

Suboptimal Control of Asthma Among Diverse Patients: A US Mixed Methods Focus Group Study.

PurposeThe US National Asthma Education and Prevention Program updates and Global Initiative for Asthma report encourage considering the patient perspective to improve asthma control. The objective of the present study was to collect data about the perceptions, experiences, and concerns of adult patients and caregivers of children with asthma regarding rescue, maintenance, and oral corticosteroid treatments.Patients and MethodsIn-person focus groups were conducted in three cities across the US. Participants also completed patient-reported outcome measures assessing asthma control and experiences.ResultsFocus groups were conducted in demographically and clinically diverse adults with asthma (five groups, n=34), caregivers of children with asthma (five groups, n=35), and adults with a dual diagnosis of asthma and chronic obstructive pulmonary disease (one group, n=5). Only 28% of patients were well-controlled by Asthma Control Test/Asthma Control Test-Caregiver Report and 18% by Asthma Impairment and Risk Questionnaire. Forty-four percent of participants reported not following their prescribed medical plan. Four key themes emerged from the focus groups: (1) asthma symptom control and monitoring are often inadequate; (2) treatments are often used incorrectly; (3) communication between health care professionals and patients or caregivers is often ineffective; and (4) concerns related to treatment and desires to improve treatment.ConclusionControl of asthma symptoms is suboptimal in the vast majority of patients and both patients and caregivers do not feel sufficiently informed about asthma. Health care providers should be encouraged to engage patients and caregivers in shared decision making for managing asthma and selecting treatments that integrate patient values, preferences, and lifestyles.

A mixed methodological examination of older adults’ psychological reactance toward caregiving messages from their adult children

ABSTRACT This study extends psychological reactance theory (PRT) to family caregiving by exploring autonomy-threatening messages adult child caregivers use to gain compliance from older adult parents. Results of focus groups and interviews with older adult care recipients (Study One) and caregivers (Study Two) corroborated three types of autonomy-threatening messages, which were used to test PRT (Study Three). Older adults (N = 281) were randomly assigned a caregiving message and answered reactance-related survey questions. Results supported serial mediation: relative to an autonomy-supporting message, two types of autonomy-threatening messages (i.e., offering directives, expressing doubt) triggered greater freedom threat, which amplified reactance. In turn, greater reactance elicited more negative attitudes, which was linked to lower behavioral intention. Results offer implications for older adults’ experience of reactance and family caregiving communication.

Development of a Website for a Living Network Meta-analysis of Atopic Dermatitis Treatments Using a User-Centered Design: Multimethod Study.

A rapid expansion of systemic immunological treatment options for atopic dermatitis (AD) has created a need for clinically relevant and understandable comparative efficacy and safety information for patients and clinicians. Given the scarcity of head-to-head trials, network meta-analysis (NMA) is an alternative way to enable robust comparisons among treatment options; however, NMA results are often complex and difficult to directly implement in shared decision-making. The aim of this study is to develop a website that effectively presents the results of a living systematic review and NMA on AD treatments to patient and clinician users. We conducted a multimethod study using iterative feedback from adults with AD, adult caregivers of children with AD, dermatologists, and allergists within a user-centered design framework. We used questionnaires followed by workshops among patients and clinicians to develop and improve the website interface. Usability testing was done with a caregiver of a patient with eczema. Questionnaires were completed by 31 adults with AD or caregivers and 94 clinicians. Patients and caregivers felt it was very important to know about new treatments (20/31, 65%). Clinicians felt the lack of evidence-based comparisons between treatments was a barrier to care (55/93, 59%). "Avoiding dangerous side effects" was ranked as the most important priority for patients (weighted ranking 5.2/7, with higher ranking being more important), and "improving patients' overall symptoms" was the most important priority for clinicians (weighted ranking 5.0/6). A total of 4 patients and 7 clinicians participated in workshops; they appreciated visualizations of the NMA results and found the website valuable for comparing different treatments. The patients suggested changes to simplify the interface and clarify terminology related to comparative efficacy. The user in the usability testing found the website intuitive to navigate. We developed a website, "eczematherapies.com," with a user-centered design approach. Visualizations of NMA results enable users to compare treatments as part of their shared decision-making process.