Positive Caregiving Research Articles

How mothers manage and make sense of their early adolescent’s interactive screen use: an IPA study in the UK

ABSTRACT Interactive screen use (ISU) for leisure is becoming increasingly popular amongst early adolescents in western societies. ISU adds complexity to family relationships as mothers are required to navigate positive relationships and caregiving in a technological landscape which balances risk-management with the promotion of autonomy. This is made more difficult as early adolescents tend to be less open to their mother’s guidance during this developmental period. There is currently no existing literature which explores mother’s lived experience of navigating and making sense of their early adolescent’s ISU and this paper offers an original contribution to knowledge in this area. Qualitative data were collected from individual, semi-structured interviews with seven mothers of early adolescent children and analysed using Interpretative Phenomenological Analysis. Three master themes were identified: (1) Mother’s concerns around the impact ISU on their children, (2) ISU impacting on the mother–child relationship and (3) the changing role of the mother when parenting their early adolescent children in a digital world. The paper concludes with a discussion of the findings of this study and suggestions for future research directions.

Caregiving burden and positive aspects of caregiving in schizophrenia: Mediating roles of hope and social support

Caring for an ill relative with schizophrenia can lead to both negative and positive experiences. The study aimed to determine the relationship between caregiving burden and positive caregiving experiences and evaluate the roles of hope and social support as possible mediators in this relationship. This study included 344 Chinese family caregivers of adults with schizophrenia. Instruments included Positive Aspects of Caregiving, Herth Hope Index, Caregiver Burden Inventory, and Multidimensional Scale of Perceived Social Support. Data was analysed by Mann-Whitney U tests, Kruskal-Wallis H tests, Spearman correlation, and a serial mediation model. Results showed that hope and social support separately and serially mediated the relationship between caregiving burden and positive caregiving experiences. The mediation effect of hope was stronger than that of social support and their serial mediation effect. Increasing hope and social support of family caregivers may alleviate caregiving burden and improve positive caregiving experiences.

Compassion Fatigue and Family Caregivers Caring in End-Stage Heart Failure.

Background: Compassion fatigue is a negative consequence impacting caregivers of chronic illness, such as heart failure. Reliance on family caregivers is expected to rise, placing importance on recognizing family caregiver characteristics that contribute to compassion fatigue. Purpose: This study specifically examined the associations of characteristics of family caregivers caring for end-stage heart failure, compassion satisfaction, social desirability, and the family caregiver-nursing provider relationship on compassion fatigue. Methods: An adapted interaction model of client health behavior guided this cross-sectional survey, which comprised a demographic questionnaire, the Professional Quality-of-Life Scale, the caregiver-provider relationship assessment, the Marlowe-Crowne Social Desirability Scale Short Form (Form C), and the Bakas Caregiving Outcomes Scale. Results: There were 127 family caregivers (FCGs), primarily those who have been a caregiver for longer than 1 year (78.4%), who completed the entire survey. Increased compassion satisfaction and positive caregiving effects were associated with decreased compassion fatigue (p < .001), while increased social desirability was associated with increased compassion fatigue (p < .001). A positive family caregiver-nursing provider relationship was related to decreased compassion fatigue (p < .001). More compassion fatigue was seen with lower spiritual status (p < .001). Implications: The chronic progression of heart failure presents opportunities for nursing providers to assess caregivers and offer frequent interventions. Family caregivers may not ask for help. Nursing providers must foster relationships with family caregivers to prevent negative consequences and mitigate compassion fatigue. Future research on the nursing provider relationship and FCGs is needed.

A Profile of Positive and Negative Caregiving Experiences Among Canadian Older Adults: The Relevance of Demographic and Care Contexts.

This study examines the predictors of burdens and benefits of informal caregiving to caregivers by examining how demographic characteristics and care contexts simultaneously predict separate scales of positive and negative caregiving experiences. The Caregiving, Aging, and Financial Experiences study is a national survey which examines a representative sample of 4010 Canadians between the ages of 65 and 85, including 1641 informal caregivers that are the focus of the current analysis. Seemingly unrelated regression analyses show that there are similarities as well as differences in predictors between the two caregiving experiences. More frequent involvement in caregiving is associated with greater negative caregiving experiences but those are not significant predictors for less positive caregiving experiences. This study demonstrates that there are some overlaps of determinants of the two caregiving experiences, and a few of them are distinct. Further studies should warrant to identify additional, unobserved factors explaining variance in positive caregiving experience.

The indirect effect of positive aspects of caregiving on the relationship between cognitive decline and dementia caregiver burden.

Research has linked increased cognitive decline in a dementia care recipient to worsening caregiver burden, but the presence of positive aspects of caregiving is associated with better outcomes. As cognitive decline worsens, a lack of positive caregiving experiences could lead to burden for the caregiver. This study investigated relationships among dementia caregiver burden, cognitive decline, and positive aspects of caregiving in dementia, predicting an indirect effect of positive aspects of caregiving. Data from 724 patients of an outpatient memory clinic in Ohio were examined and dyads included based on clinically supported patient diagnoses on the dementia spectrum. Caregivers completed the Zarit Burden Interview (ZBI) and Positive Aspects of Caregiving (PAC) measures. The Montreal Cognitive Assessment and Mini-Mental State Examination were used to estimate cognitive decline, standardized to create a single variable. Multiple potential covariates were considered for inclusion in the model. A cross-sectional mediation analysis using the Hayes PROCESS macro explored the presence of an indirect effect of PAC on the relationship between cognitive decline and ZBI using 5000 bootstrap samples. Only the potential covariate caregiver age was correlated with any of the primary variables; this variable was controlled in analyses. Significant relationships emerged between cognitive decline and ZBI (r = -0.12, P < 0.001), between PAC and ZBI (r = -0.23, P < 0.001), and between cognitive decline and PAC (r = -0.07, P < 0.05). An indirect effect of positive aspects of caregiving on the relationship between cognitive decline and ZBI was statistically significant (B = 0.0092, 95% bias-corrected confidence interval: 0.0008, 0.0185), accounting for 14.4% of the variance in the model. A lack of positive aspects of caregiving could be partially responsible for development of dementia caregiver burden as cognitive decline worsens. Longitudinal examination of these relationships is needed to understand causality fully. Findings may help healthcare providers tailor treatment to alleviate caregiver burden.

Randomized clinical trial: Long-term Staphylococcus aureus decolonization in patients on home parenteral nutrition

Staphylococcus aureus decolonization has proven successful in prevention of S.aureus infections and is a key strategy to maintain venous access and avoid hospitalization in patients receiving home parenteral nutrition (HPN). We aimed to determine the most effective and safe long-term S.aureus decolonization regimen. A randomized, open-label, multicenter clinical trial was conducted. Adult intestinal failure patients with HPN support and carrying S.aureus were randomly assigned to a 'continuous suppression' (CS) strategy, a repeated chronic topical antibiotic treatment or a 'search and destroy' (SD) strategy, a short and systemic antibiotic treatment. Primary outcome was the proportion of patients in whom S.aureus was totally eradicated during a 1-year period. Secondary outcomes included risk factors for decolonization failure and S.aureus infections, antimicrobial resistance, adverse events, patient compliance and cost-effectivity. 63 participants were included (CS 31; SD 32). The mean 1-year S.aureus decolonization rate was 61% (95% CI 44, 75) for the CS group and 39% (95% CI 25, 56) for the SD group with an OR of 2.38 (95% CI 0.92, 6.11, P=0.07). More adverse effects occurred in the SD group (P=0.01). Predictors for eradication failure were a S.aureus positive caregiver and presence of a (gastro)enterostomy. We did not demonstrate an increased efficacy of a short and systemic S.aureus decolonization strategy over a continuous topical suppression treatment. The latter may be the best option for HPN patients as it achieved a higher long-term decolonization rate and was well-tolerated (NCT03173053).

Envisioning motherhood: Mental-state language in caregiving narratives across the perinatal period.

Nancy Suchman's work highlighted the fundamental role of maternal mentalization in maternal addiction, mental health, and caregiving challenges. In this study, we aimed to examine the role of mental-state language (MSL) as a measure of mentalization in prenatal and postnatal narratives and their sentiment in a sample of 91 primarily White mothers from the western United States, followed from the second trimester of pregnancy, through the third trimester, to 4 months postpartum. Specifically, we investigated the use of affective and cognitive MSL in prenatal narratives when mothers visualized caring for their baby and postnatal narratives when mothers compared their prenatal visualization to the current caregiving reality. Results indicated moderate consistency in MSL between the second and third trimesters, but prenatal and postnatal MSL was not significantly correlated. Across all time points, higher use of MSL was related to more positive sentiment, indicating an association between mentalization and positive caregiving representations across the perinatal period. Women used more affective than cognitive MSL in prenatal imagination of caregiving, but this pattern was reversed in their postpartum reflection. Implications on assessing parental mentalization prenatally and considering the relative dominance of affective and cognitive mentalizing are discussed while considering study limitations.

"Parenting my parents": Perspectives of adult children on assuming and remaining in the caregiver's role.

Family caregivers are essential when responding to the long-term care needs of aging societies. The complex and multifaceted caregiver's role encompasses a unique set of challenges and strains, however, it can be a rewarding experience with many benefits and positive outcomes. Moreover, there is a link between the caregiver's wellbeing, quality of care, and the quality of life of the care recipient. Thus, the current study aimed to explore why adult children are assuming and remaining in the caregiver's role despite its challenges. Research data was collected through the use of qualitative semi-structured interviews from September 2021 to July 2022. In total 16 Lithuanian and Italian caregivers were recruited through convenience/snowball sampling. The study utilized the constructivist grounded theory for data analysis and self-determination theory for data interpretation. Adult children's caregiving experiences revealed three themes related to the motivation to assume and continue with family care: (1) believing in the inherent value of family care; (2) making sense of the changing nature of caregiving; and (3) "making the best of it". Key motivational drivers of these decisions were associated with the satisfaction of the three basic psychological needs - autonomy, competence, and relatedness. Results show that finding meaning and making sense of the caregiving role when responding to a parent's increased care needs may result in positive caregiving experiences and outcomes even at rather low levels of the care recipient's autonomy. Caregivers were able to experience family care as a meaningful and rewarding experience while acknowledging its challenges and limitations. Implications for family caregiving decisions and experiences, social policy, and future research are discussed in more depth in the paper.

Mindfulness and Care Experience in Family Caregivers of Persons Living with Dementia.

Greater mindfulness, the practice of awareness and living in the moment without judgement, has been linked to positive caregiving outcomes in dementia caregivers and its impact attributed to greater decentering and emotion regulation abilities. Whether the impact of these mindfulness-based processes varies across caregiver subgroups is unclear. Analyze cross-sectional associations between mindfulness and caregiver psychosocial outcomes, considering different caregiver and patient characteristics. A total of 128 family caregivers of persons living with Alzheimer's disease and related disorders were assessed on several mindfulness measures (i.e., global; decentering, positive emotion regulation, negative emotion regulation) and provided self-reported appraisals of caregiving experience; care preparedness; confidence, burden, and depression/anxiety. Bivariate relationships between mindfulness and caregiver outcomes were assessed with Pearson's correlations and stratified by caregiver (women versus men; spouse versus adult child) and patient (mild cognitive impairment (MCI) versus Dementia; AD versus dementia with Lewy bodies; low versus high symptom severity) characteristics. Greater mindfulness was associated with positive outcomes and inversely associated with negative outcomes. Stratification identified specific patterns of associations across caregiver groups. Significant correlations were found between all mindfulness measures and caregiving outcomes in male and MCI caregivers while the individual mindfulness component of positive emotion regulation was significantly correlated to outcomes in most caregiver groups. Our findings support a link between caregiver mindfulness and improved caregiving outcomes and suggest directions of inquiry into whether the effectiveness of dementia caregiver-support interventions may be improved by targeting specific mindfulness processes or offering a more inclusive all-scope approach depending on individual caregiver or patient characteristics.

How both positive and burdensome caregiver experiences are associated with care recipient cognitive performance: Evidence from the National Health and Aging Trends Study and National Study of Caregiving.

Being an informal caregiver to a person with chronic disease, including persons living with dementia (PLWD), is a big role to take on and many caregivers experience both substantial burden and emotional reward related to caregiving. Care recipient factors (e.g., behavioral symptoms) are associated with caregiver experience. However, the relationship between caregiver and care recipient is bidirectional, so it is likely that caregiver factors impact the care recipient, though few studies have investigated this. In the 2017 round of the National Health and Aging Trends Study (NHATS) and National Study of Caregiving (NSOC), we studied 1,210 care dyads--170 PLWD dyads and 1,040 without dementia dyads. Care recipients completed immediate and delayed word list memory tasks, the Clock Drawing Test, and a self-rated memory rating, while caregivers were interviewed about their caregiving experiences using a 34-item questionnaire. Using principal component analysis, we created a caregiver experience score with three components-Practical Care Burden, Positive Care Experiences, and Emotional Care Burden. We then investigated the cross-sectional association between caregiver experience components and care recipient cognitive test performance using linear regression models adjusted for age, sex, education, race, and depressive and anxiety symptoms. Among PLWD dyads, a higher caregiver Positive Care Experiences score was associated with better care recipient performance on the delayed word recall (B = 0.20, 95% CI 0.05, 0.36) and Clock Draw (B = 0.12, 95% CI 0.01, 0.24) tests while higher Emotional Care Burden score was associated with worse self-rated memory score (B = -0.19, 95% CI -0.39, -0.003). Among participants without dementia, higher Practical Care Burden score was associated with poorer care recipient performance on the immediate (B = -0.07, 95% CI -0.12, -0.01) and delayed (B = -0.10, 95% CI -0.16, -0.05) word recall tests. These findings support the concept that caregiving is bidirectional within the dyad and that positive variables can positively impact both members of the dyad. This suggests that caregiving interventions should target the caregiver and recipient both individually and as a unit, with the goal of holistically improving outcomes for both.

Diabetes Technology and the Human Factor.

Diabetes Technology and the Human Factor.

Social support, positive caregiving experience, and caregiver burden in informal caregivers of older adults with dementia.

Dementia is currently one of the major causes of disability and dependency among older adults worldwide. Cognitive dysfunction, neuropsychiatric symptoms, somatic complaints, and functional impairment fundamentally affect not only a person living with dementia (PLwD), but also his/her informal caregiver(s), often resulting in a high caregiver burden. A number of variables, including the caregiver's sociodemographic characteristics, the clinical characteristics of PLwD, social support, and the caregiver's personal resources determine the caregiver's burden. The aim of this study was to investigate the associations of caregiver burden in informal caregivers of PLwD with perceived social support, positive caregiving experience, and applying therapeutic communication methods. The data were collected from September 2021 to February 2022 among 115 "PLwD-informal caregiver" dyads in the community settings in Slovakia. Measures included the Zarit Burden Interview (ZBI-12), the Oslo Social Support Scale (OSSS-3), the Positive Aspects of Caregiving Scale (PACS), and two questions on applying therapeutic communication methods-reminiscence and validation according to Naomi Feil. The Short IQCODE was used for assessing cognitive decline in PLwD. Pearson's and Spearman's correlations, t-tests, Chi-square, ANOVA, and linear multiple regression analyses were used to analyze the data (IBM SPSS 27). The mean age of informal caregivers was 54 ± 12.4 years (81.7% of women) and the mean caregiving duration was 4.8 ± 4.8 years. The mean age of PLwD was 80.5 ± 8.3 years (73.0% of women) and their Short IQCODE mean score was 4.1 ± 1.0. Lower caregiving burden was significantly associated with higher perceived social support (β = 0.33, p < 0.01), with higher positive caregiving experience (β = 0.33, p < 0.01), and higher caregiving intensity (β = 0.24, p < 0.05) among informal caregivers of PLwD. The associations between caregiver burden and applying two therapeutic communication methods were not significant. Implementing psycho-social and educational public health interventions focused on strengthening social support and maintaining positive perceptions of caregiving can help reduce the increased risk of caregiver burden in informal caregivers of older adults with dementia.

UNCOVERING THE POSITIVE ASPECTS OF CAREGIVING: A PROFILE OF CAREGIVERS’ DEMOGRAPHIC AND CARE CONTEXTS

Abstract Burden and benefits of caregiving experiences can coexist. The objective of this research is to describe and compare the predictors of the two intertwined caregiving experiences. This study examines how the variations in caregiving experiences can be explained in terms of both positive and negative aspects of caregiving, respectively by demographic characteristics and care related contexts. The Caregiving, Aging, and Financial Experiences study is a national survey intended to examine social conditions and well-being among a representative sample of 4,010 Canadians between age 65 and 85. Within the sample, 1,641 informal caregivers are the focus of the current analysis. Scales of positive and negative caregiving experiences are employed. Findings based on principal axis factor analysis shows that there is clear separate factor loadings between the positive and negative caregiving experiences. Subsequent seemingly unrelated regression analysis shows that there are similarities as well as differences in predictors between the two caregiving experiences. Lastly, the variance explained differs markedly between the two measures, with over 26% of the variance in negative caregiving accounted for by demographic and caregiving factors, but less than 4% of the variance in positive caregiving. This study demonstrates that positive aspects of caregiving is not simply the flip-side of negative caregiving. Standard predictors do not sufficiently explain positive caregiving as well as negative caregiving. Consequently, greater attention to factors that account for positive aspects of caregiving is warranted for an inclusive understanding of caregiving experiences.

POSITIVE CAREGIVING AND CAREGIVING RELATIONSHIP ASSOCIATION WITH MENTAL HEALTH AND PERCEIVED GENERAL HEALTH

Abstract Caregiver burden is well understood as an important contributor to caregiver health. However, little is known about how positive aspects of caregiving (i.e., personal growth, gratitude, finding meaning) and the quality of caregivers’ relationships with care recipients might play a role in caregiver health. The study aimed to examine whether positive caregiving and caregivers’ relationship with care recipients were associated with caregiver mental health (depression and anxiety) and perceived general health. The sample consisted of 2,652 family caregivers in the National Study of Caregiving (NSOC) III (2017) providing care to older adults. A series of multiple regression models with covariate adjustments (i.e., caregiver’s age, sex, and race/ethnicity) were performed to examine the associations. Results indicated that positive aspects of caregiving predicted caregiver mental health but did not predict perceived general health. Caregivers’ relationship with care recipients and caregiver burden significantly predicted caregiver mental health (b = 0.285 [S.E. = 0.045], p &amp;lt; .001) and perceived general health (b = 0.096 [0.016], p &amp;lt; .001). After controlling for caregiver burden, only caregivers’ relationship with care recipients remained a significant predictor of caregiver mental health (b = 0.182 [0.041], p &amp;lt; .001) and perceived general health (b = 0.077 [0.018], p &amp;lt; .001). Our results suggest that positive caregiving perceptions and quality of relationships between caregivers and care recipients are linked to better caregiver mental health. Interventions to reduce caregiver burden, including strategies to help caregivers maintain positive attitudes and positive relationships with care recipients, might be beneficial to improving caregiver health.

POSITIVE APPRAISALS OF CAREGIVING SUPPORT DEMENTIA CAREGIVERS' PHYSICAL ACTIVITY GOAL PURSUIT

Abstract Middle-age daughters caring for parents with dementia have multiple roles and often neglect their own health. In addition to reporting negative appraisals of caregiving dementia caregivers also report positive appraisals, which may support their health behavior. In this study we examine how positive and negative caregiving appraisals interacted to predict physical activity goal pursuit among 27 daughters of parents with dementia who participated in the ACHIEVE Study, an NIH-funded 30-day study on caregiving (Noccasions=622). On days when caregivers had more positive appraisals than their own average, they had higher physical activity goal pursuit, even after controlling for that day’s negative appraisals (β=0.31, SE=0.09, p=0.001). Moreover, the association between positive appraisals and goal pursuit was not dependent on that day’s negative appraisals (p=0.42). Supporting adult-daughter caregivers to feel positively about their role as a caregiver on a day-to-day basis may support them to stay on track with their physical activity goals.

GENERATIONAL TRANSMISSION OF SOCIAL RELATIONS: FINDINGS FROM MULTIPLE US LONGITUDINAL STUDIES

Abstract This symposium provides diverse findings documenting the long reach of social relations over generations. Ali and Rohner examine data from 41 adult offspring showing that recalled perception of rejection of parents during childhood are associated with fewer positive caregiving behaviors and social interactions with their now aging parents. Using three waves of longitudinal data over 23 years, Manalel, Cleary &amp; Antonucci examine changes in composition, proximity, and contact frequency in social relations among 193 participants who were 8-12 years old at wave 1 (1992). Findings indicate increased diversity from wave 1 to 2 and increased stability from Wave 2 to 3, reflecting normative life transitions. Gender and race differences were also evident. Suitor, Gilligan, Frase &amp; Stepniak examine 725 adult (aged 30-60) children’s experience of their mother’s advice concerning experienced depression and whether these differ by race, age, and gender. While there were no age differences, men, regardless of race and black daughters receiving advice had higher levels of depression but this had little effect white daughters. Finally, Hu and Antonucci use the Social Relations Study to examine the longitudinal association between social ties and self-esteem. They examined 553 people who were 13-77 at Wave 1 in 1992. Findings indicate that network closeness matters with increases in weak and close, but not closest network size related to increase in self-esteem 23 years later. In sum, this symposium offers multiple and diverse perspectives of generations in social relations and their association with well-being over the life span.

AS YOU SOW, SO SHALL YOU REAP: ADULTS' MEMORIES' EFFECT OF PARENTAL ACCEPTANCE REJECTION IN CHILDHOOD ON AGING PARENTS

Abstract Little is known how adults’ memories of parental acceptance-rejection in childhood influence their behavior toward their aging parents. Grounded in interpersonal acceptance-rejection theory (IPARTheory), this study attempts to better understand how early parent-child relationships affect adult offspring who provide care to their parents in later life. Data were collected from 41 adult offspring. Findings revealed that adults who felt rejected by their parents in childhood reported fewer positive caregiving behaviors toward their now aging parents, were less satisfied with social activities with their parents, spent less time with them or visited them less frequently, and revealed less overall concern for their aging parents. Results were consistent with IPARTheory’s expectations that if parents reject their children, then parents place their own dependent old age at the risk of counter rejection: As you sow, so shall you reap. Such findings may help researchers, clinicians, and practitioners better understand the well-being of aging adults.

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&lt;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&lt;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.

Building an Academic Infrastructure for Rigorous Testing of Online Platforms to Support Family Caregivers

AbstractBackgroundWith COVID‐19, online opportunities to support families living with dementia are becoming increasingly important. However, academic institutions are typically not prepared to develop and test online platforms. We present a case study to describe steps for creating an infrastructure to test an online platform, WeCareAdvisor (WCA). WCA provides caregivers disease education and tailored strategies to manage dementia‐related behavioral symptoms using the DICE Approach. WCA was previously tested in a small, randomized trial demonstrating positive caregiver outcomes. To advance its evidence‐base, WCA is being tested in a NIA‐funded Stage III efficacy trial with a national sample of 326 caregivers.MethodTo test WCA, an infrastructure in the academic institution had to be created to address HIPAA compliance, privacy considerations, integrate user and developer input, and support rigorous trial methodologies. Through key informant interviews and literature reviews, we established a six‐step process: 1) Identifying and engaging key stakeholders (legal, Information Technology offices, research team, software company); 2) Creating software development agreement with stakeholder input; 3) Detailing scope of work and an oversight structure of software company, 4) Developing formal agreements with the software company, 5) Conducting security assessments with university IT offices; and 6) Establishing formal vendor status of the software company. This also necessitated new roles and responsibilities of research team members.ResultThe six‐step process was labor intensive, transpired over 12 months, and involved over 15 iterative meetings with investigators, project staff, and stakeholders. Careful coordination of stakeholders to provide practical and iterative guidance at each of the six steps was essential. Deliberations resulted in app store access, URLs and domains, and compliance and privacy statements reviewed and approved by various university offices, and then launching WCA on app stores for access by study participants.ConclusionResearchers and academic institutions have varying levels of understanding and readiness to engage in infrastructure development to rigorously test online platforms. Our approach resulted in an effective infrastructure for testing WCA which can be used by other researchers. Development of an infrastructure requires new skills for investigators, engaging multiple stakeholders, appropriately budgeting for this activity, and allocating sufficient start‐up time.

Factors associated with positive aspects of caregiving experiences among family caregivers of persons living with dementia in Taiwan: A cross-sectional study

This study examined the associated factors of positive aspects of caregiving experience among family caregivers of persons living with dementia in Taiwan. This cross-sectional correlational study recruited dyads of primary family caregivers of persons living with dementia by convenience sampling from dementia care centers in northern Taiwan from September 9, 2020, to June 20, 2021. A total of 100 dyads who met inclusions criteria agreed to participate in the study. Significant predictors of positive aspects of caregiving experience were scores of dementia behavior disturbance (t=-3.63, p =<.001), a spousal caregiver (t=2.83, p =.006), and the subscale score for satisfaction on the functional social support (t=2.62, p =.01). Our findings suggest prevention and treatment of dementia behavior disturbance for persons living with dementia, improving satisfaction with functional social support, and focusing on non-spousal caregivers could enhance experiences of positive caregiving for family caregivers.