Positive Outcomes For Caregivers Research Articles

Blessing or curse: the role of authoritarian filial piety and self-efficacy in caregiver gains among Chinese family caregivers caring for physically impaired older adults

BackgroundThis study investigated the effects of authoritarian filial piety (AFP) and caregiver self-efficacy on the caregiving experience of adult children of physically impaired older adults. Socio-cultural stress and coping model was applied to test the influence of AFP on caregiver gains.MethodsA total of 601 Chinese adult children caregivers and care-recipient dyads participated in this cross-sectional study in 2021. Four instruments were used to collect data: the 4-item Zarit Burden Interview, Positive Aspects of Caregiving Scale, Caregiver Task Inventory Scale, and Authoritarian Filial Piety Scale. All mediation and moderated mediation effects were estimated using SPSS 26.0.ResultsCaregiver self-efficacy was found to not only mediate but also help family caregivers convert their burden into positive gains. AFP moderates the association between caregiver burden and self-efficacy, as well as between caregiver burden and caregiver gains.ConclusionsThis study provides valuable insights into filial piety, elucidating AFP’s comprehensive impact on cognitive appraisals of caregiving. Culturally sensitive psychoeducational therapy, addressing AFP expectations and boosting caregiver self-efficacy, is recommended to enhance positive caregiving outcomes.

FAMILY MATTERS: CROSS-CULTURAL DIFFERENCES IN FAMILISM AND CAREGIVING OUTCOMES

Abstract The increasing number of minority older adults and subsequent increase in minority individuals needed to provide care highlights the need to understand how the caregiving role is experienced and perceived among racial/ethnic minority groups. Familism, a cross-cultural collectivist value, has been examined as a driving mechanism influencing differential outcomes in family caregivers. However, research examining familism in caregiving has yielded mixed results. Guided by the Sociocultural Stress and Coping Model, the purpose of this study is to examine cross-cultural differences in familism and its influence on caregiving outcomes. Baseline data were collected from 243 family caregivers who participated in the Caring for the Caregiver Network randomized controlled trial, a culturally tailored technology-based psychosocial intervention. Results showed that familism was more highly endorsed by Hispanic and African American participants, when compared to Whites, which was subsequently associated with positive aspects of caregiving, depression, and burden. Exploratory analyses among the Hispanic subgroup were conducted to examine how acculturation, operationalized as number of years living in the US, influences familism and found that a longer length of time spent in the US was negatively associated with familism. When dividing our sample into U.S. natives versus non-natives, non-native Hispanic participants reported higher familism compared to natives. Findings indicate that cross-cultural differences in caregiving appraisals may operate as a function of cultural values, which influence one’s subjective evaluation of the caregiving role and contribute to more optimal outcomes – highlighting the need for culturally congruent interventions to promote positive caregiving outcomes particularly among racial/ethnic minorities.

EAST MEETS WEST: INTERVENTIONS, PRACTICE MODELS, AND POLICIES TO SUPPORT FAMILY CAREGIVERS IN DIVERSE CULTURES

Abstract This East Meets West symposium consists of six studies that examined innovative interventions, practice models and policies designed to support family caregivers of older adults in the U.S., Taiwan, and mainland China. The first two papers both used case management interventions to assist family caregivers with a focus on caregiver depression. The paper from the U.S. found that more difficulties of performing caregiving tasks and less caregiver preparation contributed to higher levels of depression, and the paper from Taiwan found that caregivers who received the case management service reduced depression at four-month and six-month follow-up assessments. The third paper discussed a “time travel” paradigm developed to guide service design and delivery for persons with dementia at different stages. The fourth paper used the state of Michigan as a case to examine service gaps in the current aging service network, and identifies an urgent need for statewide policy renovations to support family caregivers. The fifth and sixth papers both used large secondary data analyses to examine the effects of piloted policy and practice efforts on family caregiver outcomes. One study found that the long-term care insurance programs have resulted in positive caregiver outcomes including reduced caregiving financial cost, time, and physical and psychological burden. The other study found the use of home-based care services reduced adult children caregiver burden and did not affect the relationship between older adults and adult children caregivers. After individual presentations are done, two discussants will summarize shared themes in these papers and provide critical feedback.

Effectiveness of the caregiver support intervention on child psychosocial wellbeing among Syrian refugees in Lebanon: Mediation and secondary analysis of a Randomized Controlled Trial

BackgroundWar and violence have a serious negative impact on the wellbeing and mental health of many children. Caregivers play an important role in mitigating or exacerbating this impact. ObjectiveThis study evaluates the impact of the nine session Caregiver Support Intervention on improving children's wellbeing and examines putative mediators of changes in children's psychosocial wellbeing. Participants and setting240 female caregivers were randomly allocated (1:1) to the CSI or a waitlist control comparison condition. The study was implemented in Lebanon, in an area characterized by high levels of poverty and a high number of the Syrian refugees. MethodsA parallel group Randomized Controlled Trial reporting on caregiver-reported child-level wellbeing. We used a combination of the Kid- and Kiddy-KINDL (parent version) for index children ages three to 12. Putative mediators of the CSI on children's psychosocial wellbeing included harsh parenting, caregiver psychological distress, caregiver wellbeing. Measurements were conducted at baseline, post-intervention and 3-months follow-up. ResultsWe demonstrated a statistically significant change in caregiver reported children's psychosocial wellbeing at post-intervention (Mdiff =4.39, 95 % CI = 1.12, 7.65, p < 0.01, d = 0.28) but not at follow-up (Mdiff = −0.97, 95 % CI = -4.27, 2.32, p > 0.05). The proportion of the total effect of the CSI intervention on child psychosocial wellbeing mediated by caregiver distress, caregiver wellbeing and harsh parenting was 77 %. ConclusionThe CSI holds potential for down-stream short-term effect on improving children's psychosocial wellbeing, beyond the previously reported positive caregiver outcomes. This effect was not sustained three months post intervention. The study confirms caregiver wellbeing and parenting support as dual pathways mediating child psychosocial wellbeing.Prospective trial registration: ISRCTN22321773

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.

Findings from a National Consensus Conference: Interdisciplinary Action Steps to Enhance Support for Dementia Family Caregivers

AbstractBackgroundIn 2021, loved ones of individuals with Alzheimer’s disease and related dementias (ADRD) provided an estimated $271 billion worth of unpaid care (Alzheimer’s Association, 2022). While there is mounting consensus for the need to support caregivers, interdisciplinary collaborations are necessary to facilitate the translation of evidence‐based programs into real‐world solutions (Gitlin et al., 2015).MethodsWith funding from the National Institute on Aging, Weill Cornell Medicine hosted “The 2021 Conference on Engaging Family and Other Unpaid Caregivers of People with Dementia in Healthcare Delivery.” The hybrid (virtual/in‐person) event convened interdisciplinary experts from across the nation to establish a policy‐ and practice‐ aligned research agenda aimed at advancing the science of ADRD caregiving. These experts consisted of caregivers of people with ADRD, healthcare providers, researchers, health plan providers, and non‐profit organizations. The conference involved expert panels on caregiving‐related topics (e.g., public policies, intervention research), small group breakout sessions to identify major recommendations, and prioritization of the recommendations through voting.ResultsThe resulting recommendations centered on five topic areas: caregiver identification and assessment, caregiver training, provider training, provider reimbursement, and technology. Two cross‐cutting themes—the need for implementation science and leveraging frameworks of intersectionality— permeated throughout all recommendations. The committee recommended actionable next steps to address the need for training and support across the care continuum, acknowledging that a one‐size‐fits‐all approach is inadequate in addressing the needs of a group as diverse as ADRD caregivers (Alzheimer’s Association, 2022). The group advocated for the development of training programs tailored to the care recipient’s disease stage and caregiver’s preferences.ConclusionThe Alzheimer’s Association and similar organizations are uniquely positioned to support work in the area of caregiver training. These organizations could collaborate with researchers to develop or expand opportunities to aid ADRD caregivers in medical treatment protocols, financial planning, and end‐of‐life preparation. Medical practices could then implement referral protocols connecting ADRD caregivers with local Alzheimer’s Association Chapters, providing much‐needed support. Bridging the gap between training and support could lead to positive outcomes for caregivers, their care recipients, and society at large (Nichols et al., 2017; Rowe et al., 2016; Guterman et al., 2019).

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.

Supporting caregivers of children with developmental disabilities: Findings from a brief caregiver well-being programme in South Africa.

Young children with developmental disabilities and delays who live in low- and middle-income countries are at significant risk of not reaching their full potential. We know that daily interactions with their caregivers (parents or other people taking care of them) play an important role in promoting their development. However, having a child with developmental disabilities can have a negative impact on carers' mental health and well-being, which in turn can influence their capacity to care for their children. To date, very little attention has been given to the caregivers' capacity to care. The World Health Organization developed a Caregiver Skills Training programme which includes a brief, three-session module that focuses on improving caregivers' well-being and mental health. This well-being programme is based on acceptance and commitment therapy. Acceptance and commitment therapy shows increasing evidence of helping people respond to their stressors, thoughts, feelings and experiences a little differently and commit to small changes that are in line with their personal values. Acceptance and commitment therapy has shown promise in improving feelings of well-being in caregivers of children with developmental disabilities. We adapted the World Health Organization Caregiver Skills Training Caregiver well-being module to suit the South African context. The resultant 'Well Beans for Caregivers' was then delivered to caregivers from a rural, low-resource setting in South Africa. We found the intervention easy to implement, highly acceptable to caregivers and showed promising impacts on caregivers' well-being and mental health. This intervention has the potential to be implemented widely and sustainably to build caregivers' capacity to care for their children.

Difficulties and Needs of Adolescent Young Caregivers of Grandparents in Italy and Slovenia: A Concurrent Mixed-Methods Study.

Many adolescent young caregivers (AYCs) care for a grandparent (GrP) with chronic disease, especially in countries with no or low developed long-term care systems and/or level of awareness of and policy responses to young caregivers. This mixed-methods study aimed at shedding light on the needs and difficulties faced by a sample of 162 adolescents aged 15–17, caring for GrPs, living in Italy (87) and Slovenia (75), respectively. A multiple linear regression model was built for the quantitative data. Qualitative data were content analysed using an open coding process. Italian and Slovenian respondents reported a moderate amount of caring activity and relatively high positive caregiving outcomes. Nevertheless, one out of three AYCs reported health problems due to their caring responsibilities. Compared to their Italian counterparts, Slovenian respondents were supported to a lesser extent by public services. Italian respondents faced communicative and practical problems; Slovenian AYCs experienced mainly emotional discomfort. AYCs from both countries requested emotional and practical support from formal services and family networks. Further, Slovenian AYCs requested emotional support and a personalized learning plan from schoolteachers. Support measures aimed at training AYCs of GrPs on geriatric care are recommended to address specific issues related to ageing and long-term care needs.

Support needs, coping, and stress among parents and caregivers of people with Down syndrome

BackgroundCaregiving for an individual with Down syndrome (DS) results in needs that can impact the stress and wellbeing of the entire family. These needs may also vary over the lifespan of the individual with DS. Coping strategies may affect stress levels and reduce the effects of unmet needs. Aims(1) Do important unmet needs (IUNs), coping, and stress vary between parents and caregivers of adults compared to children with DS? (2) What is the relationship between stress, coping, and needs for parents and caregivers of people with DS? Methods152 parents and caregivers of people with DS of various age groups completed an online survey including: demographic information, Family Needs Survey - Revised, Questionnaire on Resources and Stress – Friedrich Version, and the Family Crisis Oriented Personal Scales. Comparisons of IUNs, coping and stress between caregivers of adults and caregivers of children with DS were conducted. Relationships between stress, coping, and needs were explored using correlations and multiple regression. ResultsIUNs were greater for parents and caregivers of children than for parents and caregivers of adults. Stress level was positively correlated with the number of IUNs, and great use of coping strategies were associated with less stress and fewer IUNs. The coping styles that predicted stress were different for caregivers of children versus adults. ConclusionThe results of this research highlight the importance of considering age in relation to needs and stress among families with a child with DS. Fostering effective coping strategies, including acquiring social support, is likely to support positive outcomes for caregivers of people with DS.

Spirituality-Integrated Interventions for Caregivers of Patients with Terminal Illness: A Systematic Review of Quantitative Outcomes.

This systematic review of published quantitative research was conducted to explore the effects of spirituality-integrated interventions for informal caregivers of terminally ill patients. Multiple databases were searched for articles published between January 2004 and November 2019. Twelve randomized controlled trials were identified. Methodological quality was assessed usingthe revised Cochrane Collaboration's tool for assessing risk of bias. Studies were notably diverse in terms of spiritual background, intervention design, technology used, and outcomes measures. Spirituality-integrated interventions were found to show positive outcomes for caregivers. However, methodological flaws negatively affected the quality of most studies, warranting further and rigorous research into the topic.

Comparing Instructional Approaches in Caregiver-Implemented Intervention: An Interdisciplinary Systematic Review and Meta-Analysis

Family involvement is a cornerstone of early intervention (EI). Therefore, positive caregiver outcomes are vital, particularly in caregiver-implemented interventions. As such, caregiver instructional approaches should optimize adult learning. This study investigated the comparative efficacy of coaching and traditional caregiver instruction on caregiver outcomes across EI disciplines. A systematic search for articles was conducted using PRISMA guidelines. Meta-analysis methodology was used to analyze caregiver outcomes, and a robust variance estimate model was used to control for within-study effect size correlations. Seven relevant studies were ultimately included in the analysis. A significant, large effect of coaching on caregiver outcomes was observed compared to other models of instruction ( g = 0.745, SE = 0.125, p = .0013). These results support the adoption of a coaching framework to optimize caregiver outcomes in EI. Future research should examine how coaching and traditional instruction can be used in tiered intervention models with a variety of populations.

Assessment of burden and coping strategies among caregivers of cancer patients in sub-Saharan Africa.

BACKGROUNDCancer is a devastating and debilitating chronic disease that affects both patients and family members. Available evidence has confirmed that the care of chronically ill relatives by family members can be very challenging. This is because caregiving of cancer patients often presents a high level of burden on the caregivers. Consequently, this leads to a necessity to adopt coping mechanisms to cushion the effect of the burden experienced during caregiving.AIMTo determine the burden experienced and coping strategies among caregivers of advanced cancer patients attending University of Calabar Teaching Hospital (UCTH), Cross River State, Nigeria.METHODSThe study adopted a descriptive cross-sectional study design and the study population included informal family caregivers providing services to histologically diagnosed advanced cancer patients receiving treatment at the UCTH at the time of this survey. A researcher-developed structured questionnaire, a 22-item standardized validated Zarit Burden Interview (ZBI) and a modified 17-item Coping Orientation to Problems Experienced (COPE) Inventory were used to collect data from 250 eligible informal caregivers who were selected with regard to caregiver’s characteristics, caregivers’ level of burden and caregiver’s coping strategies, respectively. Data gathered from the respondents were collated, coded and analyzed using Statistical Package for Social Sciences (SPSS version 24.0) software and Predictive Analytical Software (PAS version 19.0). Chi-square was used to test for association between categorical variables at the 0.05 level of significance. The results are presented in tables and charts.RESULTSThe respondents consisted of more females 132 (62.86%) than males 78 (37.14%). The majority of respondents (46.2%) were aged between 31-50 years with a mean age of 35.9 ± 18.1 years. The assessment of burden level revealed that 97 caregivers (46.19%) experienced severe burden, 37 (17.62%) experienced trivial or no burden, while 76 (36.2%) perceived moderate burden. The coping strategies used by caregivers to ease the level of burden experienced during caregiving included; acceptance, reprioritization, appreciation, family, positive self-view and empathy. Also, it was documented that there was a strong association between caregivers’ level of burden and coping strategies (P = 0.030). Findings also showed that age (P = 0.000), sex (P = 0.000), educational status (P = 0.000), functional ability (P = 0.000), duration of care (P = 0.000), desire to continue caregiving (P = 0.000) and type of cancer (P = 0.000) were statistically significantly associated with caregivers’ coping strategies.CONCLUSIONThere is great recognition of the role of informal caregivers in improving the health of their relatives and family members who are chronically ill. It was recommended that support groups in collaboration with health care providers should organize a symposium for informal caregivers on the intricacies of caregiving in chronically ill patients. This would create a platform for experience sharing, information dissemination and health care professional-caregiver interaction to enhance positive caregiving outcomes.

Promoting the Positive Experience of Caregiving: A Systematic Review of the Positive Aspects of Caregiving Scale

While caregivers endure considerable challenges, including potentially deleterious effects on their own well-being, the possibility of positive outcomes for caregivers, such as feeling rewarded and satisfied, has been recognized in scholarly research as well. Caregiving outcomes can be complicated by different aspects of caregiving experiences. Particularly, the Positive Aspect of Caregiving (PAC) scale covers four main positive aspects including caregiving personal gains, motivation for caregiving role, caregiver satisfaction, as well as self-esteem and social aspect of caring. The objective of this study is to summarize the research findings based on the PAC scale and further improve the understanding of the positive experience perceived by caregivers. A systematic literature review was conducted to identify the existing evidences. This systematic review identified empirical research studies written in English focusing on a PAC scale that were published in a peer-reviewed journal between 2004 and 2018. Systematic search was carried out within 10 databases. After careful review of 193 abstracts yielded from the databases, 38 journal articles were identified to have used the PAC scale. Analysis of the selected literature provides four themes that how PAC has been used. The themes are to measure caregiving outcomes, test the effect of caregiver program intervention, complement other caregiving outcome scales, and test the validity in other languages and countries. This systematic review highlights the importance of taking into account of the positive experience of caregiving and further to promote it in a way of buffering the negative outcomes of caregiving.

Positive and Negative Impacts of Caring among Adolescents Caring for Grandparents. Results from an Online Survey in Six European Countries and Implications for Future Research, Policy and Practice.

Although up to 8% of European youngsters carry out high-intensity care for a family member, adolescent young carers (AYCs), especially those caring for their grandparents (GrPs), remain an under-researched group. This study aimed at addressing the current knowledge gap by carrying out an online survey in Italy, the Netherlands, Slovenia, Sweden, Switzerland, and the United Kingdom. The analysis included a final sample of 817 AYCs aged 15–17 years old. AYCs of grandparents (GrPs) were compared to AYCs of other care recipients (OCRs), in order to identify any difference in positive and negative caregiving outcomes and exposure factors between the two groups. Linear or logistic regression models were built, and multivariate analyses were repeated, including a fixed effect on the country variable. AYCs of GrPs experienced more positive caregiving outcomes than AYCs of OCRs across all six countries. Being female or non-binary, and having a migration background, were associated with more negative outcomes, regardless of the relationship with the care recipient. Further research on intergenerational caregiving outcomes is recommended for shaping measures and policies, which preserve the intergenerational emotional bonds, whilst protecting AYCs from inappropriate responsibilities, undermining their mental health and well-being.

Infant mental health home visiting therapists' fidelity to the Michigan IMH-HV model in community practice settings.

Implementation research suggests that fidelity to a therapeutic model is important for enhancing outcomes, yet can be difficult to achieve in community practice settings. Furthermore, few published studies have reported on characteristics of treatment fidelity. The present study examined fidelity to the Infant Mental Health Home Visiting (IMH-HV) model among 51 therapists with a range of experience practicing in community settings across the state of Michigan. IMH therapists completed fidelity checklists after every session with participating families to track use of 15 treatment strategies central to the IMH-HV model across the 12-month study period. Results indicated that the most commonly endorsed components utilized in home visits were developmental guidance and infant-parent psychotherapy, followed by the provision of emotional support. Use of IMH-HV components did not vary over time for the entire sample; however, patterns of strategies used showed somewhat more variability among more experienced therapists and when serving higher risk families. Findings demonstrate that IMH-HV therapists report a range of adherence to the model in community settings, with greatest fidelity to several model core components. Ongoing training in the flexible use of all core strategies may further enhance fidelity and contribute to positive outcomes for caregivers and their children receiving IMH-HV services.

In-Home Video Telehealth for Dementia Management: Implications for Rehabilitation.

The progressive nature of dementia requires ongoing care delivered by multidisciplinary teams, including rehabilitation professionals, that is individualized to patient and caregiver needs at various points on the disease trajectory. Video telehealth is a rapidly expanding model of care with the potential to expand dementia best practices by increasing the reach of dementia providers to flexible locations, including patients' homes. We review recent evidence for in-home video telehealth for patients with dementia and their caregivers with emphasis on implications for rehabilitation professionals. Eleven studies were identified that involved video visits into the home targeting patients with dementia and/or their family caregivers. The majority describe protocolized interventions targeting caregivers in a group format over a finite, pre-determined period. For most, the discipline of the interventionist was unclear, though two studies included rehabilitation interventions. While descriptions of utilized technology were often lacking, many reported that devices were issued to participants when needed, and that technical support was provided by study teams. Positive caregiver outcomes were noted but evidence for patient-level outcomes and cost data are mostly lacking. More research is needed to demonstrate implementation of dementia best care practices through in-home video telehealth. Though interventions delivered using in-home video telehealth appear to be effective at addressing caregivers' psychosocial concerns, the impact on patients and the implications for rehabilitation remain unclear. Larger, more systematic inquiries comparing in-home video telehealth to traditional visit formats are needed to better define best practices.

The cost-effectiveness of a telephone-based intervention to support caregivers of older people discharged from hospital

BackgroundA telephone intervention for caregivers of older people discharged from hospital was shown to improve preparedness to care, reduce caregiver strain and caregiver distress. No cost-effectiveness analysis has been published on this, or similar interventions. The study aims addressed here were to examine whether positive outcomes for caregivers resulting from the Further Enabling Care at Home (FECH) program changed the use and costs of health services by patients; and to assess cost-effectiveness.MethodsA single-blind randomised controlled trial compared FECH to usual care. FECH involved a specially trained nurse addressing support needs of caregivers of older patients discharged from hospital. A minimum clinically important difference in preparedness to care was defined as an increase in Preparedness for Caregiving scale score of ≥ two points from baseline. Designated data collection was at: Time 1, within four days of discharge; Time 2, 15–21 days post-discharge; and Time 3, six weeks post-discharge. A last observation carried forward approach to loss to follow-up was used, with a sensitivity analysis including only those who completed all time points. Patient use of hospital, emergency department (ED) and ambulance services were captured for 12 weeks post-discharge using administrative data. Costs included nurse time supporting caregivers, resources used by the nurse, and time taken training the nurse to deliver FECH. Cost-effectiveness was assessed using decision trees for preparedness for caregiving.ResultsSixty-two intervention dyads and 79 controls provided complete data. A significantly greater proportion of intervention group caregivers reported improved preparedness to care to Time 2 (36.4% v 20.9%, p = 0.029), though this was not sustained to Time 3. The intervention cost $AUD268.28 above usual care per caregiver. No significant differences were observed in health service use between groups. The incremental cost-effectiveness ratio for each additional caregiver reporting improved preparedness to care at Time 2 was $AUD1,730.84.ConclusionsTo our knowledge this is the first work to calculate the cost-effectiveness of a telephone-delivered intervention designed to support caregivers of older people post-discharge, and will support decision-making regarding implementation. Further research should examine different settings, and assess impacts on health service use with larger samples and a longer follow-up.Trial registrationAustralian and New Zealand Clinical Trial Registry: ACTRN12614001174673. Registered 07/11/2014.

Purpose in Life Among Family Care Partners Managing Dementia: Links to Caregiving Gains.

Purpose in life is associated with better health and has been found to minimize caregiving stress. Greater purpose may also promote caregiving gains (i.e., rewards or uplifts from providing care), yet the implications of purpose for positive aspects of the care role are largely unknown. The present study determined how perceptions of purpose in life among persons with dementia (PWDs) and their family caregivers are linked to caregiving gains. This cross-sectional study examined 153 co-resident family caregivers drawn from the 2011 National Health and Aging Trends Study and National Study of Caregiving. Linear regressions were estimated to evaluate associations between caregivers' and PWDs' reports of their own purpose in life and caregivers' perceived caregiving gains, along with whether these associations vary by caregiver gender. Models controlled for caregivers' sociodemographic characteristics, relationship to the PWD, care tasks, role overload, negative caregiving relationship quality, and both care partners' chronic health conditions. Caregivers' higher purpose in life was significantly linked to greater caregiving gains. Beyond this association, PWDs' higher purpose in life was significantly associated with greater caregiving gains for women but not for men. Purpose in life is a psychological resource that contributes to positive caregiving outcomes. Interventions to improve caregiver well-being could benefit from strategies that strengthen and maintain feelings of purpose among caregivers and PWDs.

Caregiver outcomes and interventions: a systematic scoping review of the traumatic brain injury and spinal cord injury literature

Aim: To identify factors reported with negative and positive outcomes for caregivers of the traumatic brain injury and spinal cord injury cohorts, to investigate what interventions have been studied to support carers and to report what effectiveness has been found. Methods: Scoping systematic review. Electronic databases and websites were searched from 1990 to December 2015. Studies were agreed for inclusion using pre-defined criteria. Relevant information from included studies was extracted and quality assessment was completed. Data were synthesised using qualitative methods. Results: A total of 62 studies reported caregiver outcomes for the traumatic brain injury cohort; 51 reported negative outcomes and 11 reported positive outcomes. For the spinal cord injury cohort, 18 studies reported caregiver outcomes; 15 reported negative outcomes and three reported positive outcomes. Burden of care was over-represented in the literature for both cohorts, with few studies looking at factors associated with positive outcomes. Good family functioning, coping skills and social support were reported to mediate caregiver burden and promote positive outcomes. A total of 21 studies further described interventions to support traumatic brain injury caregivers and four described interventions to support spinal cord injury caregivers, with emerging evidence for the effectiveness of problem-solving training. Further research is required to explore the effects of injury severity of the care recipient, as well as caregiver age, on the outcome of the interventions. Conclusion: Most studies reported negative outcomes, suggesting that barriers to caregiving have been established, but not facilitators. The interventions described to support carers are limited and require further testing to confirm their effectiveness.