Caregiver Outcomes Research Articles

Longitudinal health outcomes in caregivers of military members with traumatic brain injury.

To examine longitudinal change in health-related quality of life (HRQOL) in caregivers of service members/veterans with traumatic brain injury and factors associated with clinically elevated symptoms. Caregivers (N = 220) completed nine HRQOL outcome measures and 10 risk factor measures at a baseline evaluation and follow-up evaluation 3 years later. Caregiver's responses on the nine HRQOL outcome measures were classified into four clinical change categories based on the presence/absence of clinically elevated T-scores (≥ 60 T) at baseline and follow-up: (a) Persistent (baseline ≥ 60T + follow-up ≥ 60 T), (b) Developed (baseline < 60 T + follow-up ≥ 60 T), (c) Improved (baseline ≥ 60 T + follow-up < 60 T), and (d) Asymptomatic (baseline < 60 T + follow-up < 60 T). A clinical change composite score was calculated by summing the number of Persistent or Developed HRQOL outcome measures and used to create three clinical change groups: (a) No Symptoms (n = 69, zero measures), (b) Some Symptoms (n = 88, one to three measures), and (c) Numerous Symptoms (n = 63, four to nine measures). Of the nine HRQOL outcome measures, Bodily Pain, Perceived Stress, Sleep-Related Impairment, and Fatigue were most frequently classified as Persistent or Developed from baseline to follow-up in the entire sample. A linear relationship was found between the vast majority of risk factors across the three clinical change groups at baseline and follow-up (Numerous > Some > None). The risk factors were correlated with the number of elevated HRQOL symptoms at baseline and follow-up. Most Asymptomatic or Persistent caregivers did not have meaningful change (≥ 1 SD) in HRQOL scores. A sizable proportion of Developed or Improved caregivers had either meaningful or no change in HRQOL scores. There is a need for ongoing clinical services for military caregivers. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Integrating Perspectives on Family Caregiving After Critical Illness: A Qualitative Content Analysis.

To date, no intervention has definitively improved outcomes for families of critical illness survivors. An integrated perspective on caregivers' needs after critical illness could help identify high-priority intervention targets and improve outcomes. To obtain diverse perspectives on the needs, barriers and facilitators, and social determinants of health associated with family caregiving across the critical illness continuum and assess the extent to which successful caregiving interventions in other populations may be adapted to the critical illness context. This qualitative content analysis of 31 semistructured interviews and 10 focus groups with family caregivers, health care providers, and health care administrators explored family caregivers' needs during post- intensive care unit (ICU) transitions and the barriers and facilitators associated with addressing them. Trained coders analyzed transcripts, identified patterns and categories among the codes, and generated themes. Caregivers have 3 instrumental needs: formal and informal support, involvement in care planning, and education and training. Only caregivers described their self-care and mental health needs. Social determinants of health are the key barriers and facilitators shaping the caregivers' journey, and caregiving as a social determinant of health was a prominent theme. Caregivers have instrumental, self-care, and mental health needs after critical illness. Adapting hands-on and skills training interventions to the post-ICU setting, while tailoring interventions to caregivers' health-related social context, may improve caregiver outcomes.

Preliminary Impact of Group-Based Interventions on Stigma and the Mental Health of Caregivers of Adolescents Living with HIV in Uganda.

This study examined the preliminary impact of group-cognitive behavioral therapy (G-CBT) and a family-strengthening intervention delivered via multiple family groups (MFG-FS) on HIV stigma, parenting stress, and the mental health of caregivers of adolescents living with HIV. We analyzed data from the Suubi4Stigma study (2020-2022), a two-year pilot randomized clinical trial for adolescents and their caregivers (N = 89 dyads), recruited from nine health clinics in Uganda. Adolescent-caregiver dyads were randomized to three intervention conditions delivered over three months, with data collected at baseline, three and six-months follow-up. We fitted mixed-effects linear regression models to test the effect of the interventions on caregiver outcomes over time. At six months, caregivers randomized to the MFG-FS condition reported lower levels of stigma by association (mean difference = -1.45, 95% CI = -2.52 - -0.38, p = 0.008), and stigma and discrimination attitudes (mean difference = -3.84, 95% CI = -4.63 - -3.05, p < 0.001), compared to Usual care condition. In addition, caregivers of adolescents randomized to the G-CBT condition reported lower levels of stigma and discrimination attitudes at three months (mean difference = -5.18, 95% CI = -9.13 - -1.22, p = 0.010), and at six months (mean difference = -6.70, 95% CI = -9.28 - -4.12, p < 0.001). Caregiver mental health and parenting stress significantly reduced over time regardless of intervention condition. Findings point to the importance of incorporating stigma reduction components within psychosocial interventions targeting adolescents and families impacted by HIV.

Evaluating the Efficacy of Time for Living and Caring: An Online Intervention to Support Dementia Caregivers' Use of Respite.

Respite, defined as time away from caregiving, is the most requested type of caregiver support. Time for Living and Caring (TLC) is a virtual coaching "app" that helps caregivers schedule and plan their respite time-use. The objectives of this analysis are: (1) to assess the efficacy of the TLC intervention on respite time-use and on caregiver well-being and (2) to identify the key features of the intervention that serve as the likely mechanism of action. A sample of dementia caregivers (n = 163, 79% female, 84% White, 6% Hispanic, average age 62) were randomized into one of two intervention delivery methods. Intervention efficacy was evaluated using pre/post-comparisons of respite time-use and an additive "dosing" model that estimated unique parameters associated with the exposure to each specific intervention component. Both immediate and delayed-attention groups reported increased respite time. They also improved in their ability to plan and perceive benefit from their respite time-use over the 16-week intervention period. At 8 weeks, the immediate group did not change in anxiety, whereas the delayed group worsened (p < .001). At 16 weeks, the groups were similar in their anxiety levels. By the 20-week follow-up period, when neither group had access to TLC, both experienced an increase in anxiety. TLC is a promising intervention that may support caregivers' well-being, by helping them schedule and plan their respite to maximize its benefit. The provision of weekly coaching seems to be the intervention component (mechanism) associated with caregiver outcomes. NCT03689179.

Kids SIPsmartER reduces sugar-sweetened beverages among Appalachian middle-school students and their caregivers: a cluster randomized controlled trial

BackgroundHigh consumption of sugar-sweetened beverages (SSB) is a global health concern. Additionally, sugar-sweetened beverage (SSB) consumption is disproportionately high among adolescents and adults in rural Appalachia. The primary study objective is to determine the intervention effects of Kids SIPsmartER on students’ SSB consumption. Secondary objectives focus on caregivers’ SSB consumption and secondary student and caregiver outcomes [e.g, body mass index (BMI), quality of life (QOL)].MethodsThis Type 1 hybrid, cluster randomized controlled trial includes 12 Appalachian middle schools (6 randomized to Kids SIPsmartER and 6 to control). Kids SIPsmartER is a 6-month, 12 lesson, multi-level, school-based, behavior and health literacy program aimed at reducing SSB among 7th grade middle school students. The program also incorporates a two-way text message strategy for caregivers. In this primary prevention intervention, all 7th grade students and their caregivers from participating schools were eligible to participate, regardless of baseline SSB consumption. Validated instruments were used to assess SSB behaviors and QOL. Height and weight were objectively measured in students and self-reported by caregivers. Analyses included modified two-part models with time fixed effects that controlled for relevant demographics and included school cluster robust standard errors.ResultsOf the 526 students and 220 caregivers, mean (SD) ages were 12.7 (0.5) and 40.6 (6.7) years, respectively. Students were 55% female. Caregivers were mostly female (95%) and White (93%); 25% had a high school education or less and 33% had an annual household income less than $50,000. Regardless of SSB intake at baseline and relative to control participants, SSB significantly decreased among students [-7.2 ounces/day (95% CI = -10.7, -3.7); p < 0.001, effect size (ES) = 0.35] and caregivers [-6.3 ounces/day (95% CI = -11.3, -1.3); p = 0.014, ES = 0.33]. Among students (42%) and caregivers (28%) who consumed > 24 SSB ounces/day at baseline (i.e., high consumers), the ES increased to 0.45 and 0.95, respectively. There were no significant effects for student or caregiver QOL indicators or objectively measured student BMI; however, caregiver self-reported BMI significantly decreased in the intervention versus control schools (p = 0.001).ConclusionsKids SIPsmartER was effective at reducing SSB consumption among students and their caregivers in the rural, medically underserved Appalachian region. Importantly, SSB effects were even stronger among students and caregivers who were high consumers at baseline.Trial registrationClincialtrials.gov: NCT03740113. Registered 14 November 2018– Retrospectively registered, https://clinicaltrials.gov/ct2/show/NCT03740113.

Communicating visit information to family caregivers: How does method matter? A national survey.

The clinic visit is a critical point of contact for family caregivers. However, only 37% of family caregivers are able to accompany patients to visits. When they cannot attend, caregivers receive visit information to assist with their caregiving. However, little is known about how method of receiving information from clinic visits is associated with important caregiver outcomes. This study sought to determine whether mode of receiving clinic visit information (speaking with the patient, attending the visit, or using an after-visit summary [AVS]) was associated with changes in caregiver burden, caregiver preparedness, and the positive aspects of caregiving. Cross-sectional web-based survey of a national sample of adult family caregivers. Multiple linear regression models determined associations between communication modes and caregivers' burden, preparedness, and positive aspects of caregiving, adjusting for sociodemographic covariates. Respondents (N = 340) were mostly male (58%), White (59%), ranged from 18 to 85 years old, and supported patients with conditions including diabetes, dementia, and cancer. Speaking with patients was associated with increases in positive aspects of caregiving (95% CI = 2.01, 5.42) and an AVS was associated with increases in positive aspects of caregiving (95% CI = 0.4, 3.56) and preparedness for caregiving (95% CI = 0.61, 3.15). Using any method of receiving information from visits was associated with the greatest increase in preparedness, compared to not receiving visit information. We did not observe an association between method of communication and caregiver burden. Method of communicating visit information is associated with improvements in caregiver preparedness and the positive aspects of caregiving, though caregiver burden may be unaffected by information exchange. Given the limitations of current communication methods, future work should explore directionality of the associations we found and identify visit communication strategies with caregivers that optimize caregiver and patient outcomes.

A pre-post evaluation of a digital intervention to improve psychosocial outcomes of caregivers of people living with cancer in Vietnam

Objectives To evaluate a co-designed intervention using digital resources “Vietnam Cancer Caring Coping” (V-CCC) on the health literacy, depression, and quality of life of caregivers supporting a cancer patient in oncology hospitals in Vietnam. Methods A pre-post quantitative evaluation with adult cancer caregivers across regional Oncology hospitals in Vietnam (Ho Chi Minh City, Da Nang, Can Tho, and Hue). Participants completed baseline and follow-up measures of health literacy (HLS-SF12) depression (PHQ-9) and Health-related Quality of Life (5Q-5D-5L). Participants accessed and reviewed V-CCC for a 2-week period. Results Two hundred and thirty-four caregivers completed pre and post-tests. Most participants were female (n = 143, 61%), married (n = 165, 70%), aged 18–44 (n = 155, 66%), lived rurally (n = 157, 67%). All health literacy scores of participants in post-intervention were significantly higher than that in pre-intervention across all domain’s healthcare, disease prevention, and health promotion as well as the total score (p < 0.001). A significant reduction in the proportion of caregivers reporting PHQ-9 moderately severe/severe depression post-intervention was demonstrated (10.2 vs. 6.1%, respectively (p ≤ 0.001). No significant differences were observed pre and post-intervention across four 5Q-5D-5L health dimensions: mobility, self-care, usual activities, and pain/discomfort. Regarding anxiety/depression as measured by 5Q-5D-5L the proportion of participants who reported having moderate, severe, and extreme problems in pre- and post-intervention was statistically significant (32 vs. 24%), respectively (p = 0.0028). Conclusion Co-designed digital resources can reduce health literacy inequities and improve psychological outcomes for cancer caregivers.

The effect of internet-administered support (carer eSupport) on preparedness for caregiving in informal caregivers of patients with head and neck cancer compared with support as usual: a study protocol for a randomized controlled trial

BackgroundInformal caregivers (ICs) of patients with cancer provide essential and mainly uncompensated care. A self-perceived preparedness to care for the patient is associated with a lower caregiver burden, described as the extent to which caregiving is perceived as having adverse effects on IC functioning and well-being. ICs’ well-being is associated with patient-perceived quality of care, suggesting that interventions to optimize ICs’ health are essential in order to improve patient care. Head and neck cancer (HNC) is the seventh most common malignant disease in the world. The disease and its treatment have a significant negative impact on the patient’s health and quality of life. Symptoms usually interfere with swallowing, food and fluid intake, breathing, speaking, and communication. ICs frequently manage patients’ symptoms and side effects, especially problems related to nutrition and oral pain, without being properly prepared. Carer eSupport is an Internet-administered intervention, based on focus group discussions with ICs, developed in collaboration with ICs and healthcare professionals, tested for feasibility, and deemed feasible. This study protocol outlines the methods of investigating the effects of Carer eSupport plus support as usual (SAU) on self-reported preparedness for caregiving, caregiver burden, and well-being in the ICs of patients with HNC, compared with ICs receiving SAU only.Methods and analysisIn this randomized controlled trial, 110 ICs of patients with HNC, undergoing radiotherapy combined with surgery and/or medical oncological treatment, will be randomized (1:1) to Carer eSupport plus SAU or SAU only. Data will be collected at baseline (before randomization), post-intervention (after 18 weeks), and 3 months after post-intervention. The primary outcome is self-reported preparedness for caregiving. Secondary outcomes are self-reported caregiver burden, anxiety, depression, and health-related quality of life. The effect of Carer eSupport plus SAU on preparedness for caregiving and secondary outcomes, compared with SAU only, will be evaluated by intention to treat analyses using linear regression models, mixed-model regression, or analysis of covariance.DiscussionIf proven effective, Carer eSupport has the potential to significantly improve ICs’ preparedness for caregiving and their wellbeing, thereby improving patient-perceived quality of care and patient wellbeing.Trial registrationClinicalTrials.gov; NCT06307418, registered 12.03.2024 (https://clinicaltrials.gov/search? term=NCT06307418).

Development of Patient and Caregiver Conceptual Models Investigating the Health-Related Quality of Life Impacts of Malignant Pleural Mesothelioma.

Malignant pleural mesothelioma (MPM) is a rare and usually fatal malignancy frequently linked to occupational asbestos exposures and associated with poor prognosis and considerable humanistic burden. The study aimed to develop conceptual models of the health-related quality of life (HRQoL) impact on patients with and receiving treatment for MPM, and the burden on their caregivers. This multi-country study (Australia and United Kingdom) adopted a qualitative methodology to conduct semi-structured, independent interviews with people with MPM (n = 26), current caregivers (n = 20), and caregivers of people who had recently died because of MPM (n = 4). Participants were recruited using a purposive sampling approach and interviews conducted via telephone between January 2021 and January 2022. Transcripts were analysed using thematic analysis and used to construct conceptual models. Patient analysis yielded four overarching themes: (1) debilitating burden of breathlessness and fatigue; (2) physical mesothelioma symptoms experienced by patients; (3) distress of MPM on the self and family; and (4) treatment is worth 'having a go' despite the potential impact on symptoms. Caregiver analysis yielded five core themes: (1) daily life limited by caregiving duties; (2) emotional well-being and the need for support; (3) the relational role shift to caregiver; (4) time spent providing care negatively impacts work and productivity; and (5) positive aspects and outcomes of caregiving. This study highlights the substantial daily and emotional HRQoL impact that MPM symptoms have on patients and caregivers. Both groups reduced work, productivity, and social and leisure activities. There was evidence of positive HRQoL impacts as a result of immunotherapy and radiotherapy, but less for chemotherapy. Caregiver impacts were intensified during the end-of-life period and persisted following patient death. Evident is a need for increased psychological support, information, and advice for caregivers, increased during the end-of-life period.

Family caregiver outcomes after participating in a hospital-based family involvement program after major gastrointestinal surgery: a subgroup analysis of a patient preferred cohort study.

Engaging families in postsurgical care is potentially beneficial for improving cancer patient outcomes and quality of care. The authors developed a family involvement program (FIP) and in this study, the authors aim to evaluate the impact of the FIP on family caregiver burden and well-being. Moreover, the authors aim to assess the fidelity of the program. This is a preplanned subgroup analysis of a patient-preferred prospective cohort study that included family caregivers of patients who underwent major oncological surgery for gastrointestinal tumors. Only patient-nominated family caregivers could participate in the FIP. Caregivers received structured training in fundamental caregiving tasks from healthcare professionals and then actively participated in these tasks. Caregiver burden and well-being were measured four times (at hospital admission, at hospital discharge, and at 1 and 3 months posthospital discharge) using the Caregiver Strain Index+ (CSI+) and the Care-related Quality of Life instrument (CarerQoL-7D). The fidelity of the FIP was assessed by recording completion of care activities. In addition, family caregivers were asked whether they would participate in the FIP again. Most of the 152 family caregivers were female (77.6%), and their mean age was 61.3 years (SD=11.6). Median CSI+ scores ranged between -1 and 0 and remained below the cutoff point of experiencing burden. CarerQoL-7D results indicated no significant differences in family caregivers' well-being over time. Upon discharge, over 75% of the family caregivers stated that they would recommend the FIP to others. The highest compliance with all fundamental care activities was observed during postoperative days 2-4. The family caregivers of oncological surgical patients who participated in the FIP exhibited acceptable levels of caregiver burden and well-being. These findings suggest that the FIP is a valuable intervention to equip family caregivers with the skills to navigate the uncertain period following a patient's hospital discharge.

Oncology's Silent Caregivers: A Mixed-Methods Exploration of the Experiences, Outcomes, and Unmet Needs of Caregiving Youth of a Parent With Cancer.

Cancer affects the whole family system causing reorganization of functioning and responsibilities where children may take on a caregiving role. In the United States, an estimated 204 000 to 475 000 caregiving youth provide multifaceted, extended care in oncology. This results in both positive and negative outcomes for youth-spanning multiple domains of health. The aim of this study was to explore the caregiving experiences, outcomes, and unmet needs of caregiving youth (aged 12-24 years) in oncology. An explanatory sequential mixed-methods study design was used. Fifty-two adults who lived with a parent with cancer as a child were recruited via social media and asked to complete an online survey. A subsample of 18 individuals reporting high to very high amounts of caregiving were subsequently interviewed. The mean reported caregiving youth age was 16.13 (±4.86) years. They provided care approximately 22.43 h/wk for approximately 3.04 years. Most (71.2%) reported high to very high amounts of caregiving activity. The highest reported categories of unmet needs were information, family, feelings, friends, and time out/recreation. Qualitative findings included 4 themes: stepping into the role, family communication, dealing with feelings, and a new separateness. Identified needs included a desire for more information to aid in uncertainty, better communication within the family, needing someone to help them process their feelings, and peer-to-peer support. It is important for nurses and researchers to be aware of and acknowledge the needs of families dealing with cancer and aid in the development and implementation of tailored interventions to support caregiving youth.

Parenting and family interventions in lower and middle-income countries for child and adolescent mental health: A systematic review

BackgroundGiven the protective effect of nurturing caregivers and families for child and adolescent mental health, there is a need to review and synthesize research evidence regarding the effectiveness of parenting and family interventions in low and middle-income countries, including humanitarian settings. To advance practice, further understanding of the active ingredients of such interventions and implementation factors that lead to effectiveness are essential. MethodThis systematic review, an update from a previous review, included studies on any parenting or family intervention for children and adolescents aged 0–24, living in a low- or middle-income country, that quantitatively measured child or adolescent mental health outcomes. We searched Global Health, PubMed, PsychINFO, PILOTS and the Cochrane Library databases on the 9th July 2020, and updated on the 12th August 2022. Risk of bias was assessed using an adapted version of the NIH Quality Assessment Tool. We extracted data on: effectiveness outcomes, practice elements included in effective interventions, and implementation challenges and successes. Main findingsWe found a total of 80 studies (n = 18,193 participants) representing 64 different family or parenting interventions, 43 of which had evidence of effect for a child or adolescent mental health outcome. Only 3 studies found no effect on child, adolescent or caregiver outcomes. The most common practice elements delivered in effective interventions included caregiver psychoeducation, communication skills, and differential reinforcement. Key implementation strategies and lessons learned included non-specialist delivery, the engagement of fathers, and integrated or multi-sector care to holistically address family needs. Preliminary conclusionsDespite a high level of heterogeneity, preliminary findings from the review are promising and support the use of parenting and family interventions to address the wider social ecology of children in low resource and humanitarian contexts. There are remaining gaps in understanding mechanisms of change and the empirical testing of different implementation models. Our findings have implications for better informing task sharing from specialist to non-specialist delivery, and from individual-focused to wider systemic interventions.

Profiling the medical, functional, cognitive, and psychosocial care needs of adults assessed for home care in Ontario, Canada: The case for long-term 'life care' at home.

Calls to leverage routinely collected data to inform health system improvements have been made. Misalignment between home care services and client needs can result in poor client, caregiver, and system outcomes. To inform development of an integrated model of community-based home care, grounded in a holistic definition of health, comprehensive clinical profiles were created using Ontario, Canada home care assessment data. Retrospective, cross-sectional analyses of 2017-2018 Resident Assessment Instrument Home Care (RAI-HC) assessments (n = 162,523) were completed to group home care clients by service needs and generate comprehensive profiles of each group's dominant medical, functional, cognitive, and psychosocial care needs. Six unique groups were identified, with care profiles representing home care clients living with Geriatric Syndromes, Medical Complexity, Cognitive Impairment and Behaviours, Caregiver Distress and Social Frailty. Depending on group membership, between 51% and 81% of clients had identified care needs spanning four or more Positive Health dimensions, demonstrating both the heterogeneity and complexity of clients served by home care. Comprehensive clinical profiles, developed from routinely collected assessment data, support a future-focused, evidence-informed, and community-engaged approach to research and practice in integrated home-based health and social care.

Consumer Direction and Family Caregiver Outcomes: A Systematic Review

Consumer Direction and Family Caregiver Outcomes: A Systematic Review

Adapting an evidence-based, home cardiac rehabilitation programme for people with heart failure and their caregivers to the Danish context: DK:REACH-HF study.

Adapting interventions with an existing evidence base offers a more efficient approach than developing a new intervention. The aim of this study was to describe the process of adapting a home-based cardiac rehabilitation (CR) programme (REACH-HF) intervention originally developed in the UK for people with heart failure (HF) to the Danish health system-the 'DK:REACH-HF' programme. We followed methodological framework for the conduct and reporting of studies adapting interventions, utilizing documentary analysis, qualitative interviews, stakeholder consultations, and mapping of the Danish policy context. Our study found broad support for the REACH-HF intervention as an alternative to existing centre-based CR. We also identified three key areas of adaptation for the Danish context. First, reduce the word count of the intervention's resources by linking to existing publicly available CR materials. Second, while retaining REACH-HF core components, adapt its content and delivery to reflect differences between Denmark and UK. Third, develop a digital version of the intervention. Using an evidence-based approach, we successfully adapted the REACH-HF intervention to the context of the Danish healthcare setting, maintaining core components of the original intervention and developing both a paper-based and digital version of the programme material. To inform scaled national implementation of the DK:REACH-HF programme, we seek to undertake a pilot study to test the adapted intervention materials feasibility and acceptability to healthcare practitioners, patients, and their caregivers and confirm the positive impact on the outcomes of HF patients and caregivers.

Caregiving consequences in cancer family caregivers: a narrative review of qualitative studies.

Cancer is a significant public health issue, causing various challenges for individuals affected by it. As cancer progresses, patients often become dependent on others for support. Family caregivers and members play a crucial role in the recovery and rehabilitation of these patients. However, caregivers themselves face numerous challenges throughout the course of their family member's illness. Exploring the experiences of family caregivers can inform long-term planning and supportive interventions to address their caregiving difficulties. This study reviews previous literature on caregiving outcomes. This study presents a narrative review of qualitative studies, analyzing a total of 23 articles. The results were extracted and organized into subcategories. After revision by the research team, main categories were identified. These categories encompass both positive and negative outcomes of caregiving. The findings of this review demonstrate that caring for a family member with cancer has significant implications for caregivers. These implications include: (A) Positive outcomes of caregiving (such as achieving self-management and balance, promoting kinship intimacy, finding meaning and purpose, and experiencing spiritual growth) and (B) Negative outcomes of caregiving (including care-related physical exhaustion, disruption of personal life plans, psycho-emotional consequences, and socio-economic burden). The results of this study highlight the challenges faced by family caregivers and emphasize the importance of addressing their needs within the healthcare system. By providing support and attention to their well-being, caregivers can enhance their resilience and adaptability in managing caregiving difficulties.

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

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

Music Therapy Intervention to Reduce Symptom Burden in Hospice Patients: A Descriptive Study.

Background: Music therapy (MT) offers benefits of improved symptom relief and quality of life at the end of life, but its impact on hospice patients and caregivers needs more research. Objective: To assess the impact of MT intervention on symptom burden and well-being of hospice patients and caregivers. Methods: A total of 18 hospice patients, selected based on scores ≥4 on the revised Edmonton Symptom Assessment System (ESAS-r) items on pain, depression, anxiety, or well-being, participated in MT sessions provided by a board-certified music therapist. Over a period of 2-3weeks, 3-4MT sessions were conducted for each. Patient Quality of life (QOL) was assessed using the Linear Analogue Self-Assessment (LASA). Depression and anxiety were measured with the Patient Health Questionnaire-4 (PHQ-4). For the 7 caregivers enrolled, stress levels were measured using the Pearlin role overload measure and LASA. Results: Patients reported a reduction in symptom severity and emotional distress and an increase in QOL. All patients endorsed satisfaction with music therapy, describing it as particularly beneficial for stress relief, relaxation, spiritual support, emotional support, and well-being. Scores on overall QOL and stress were worse for caregivers. Conclusion: This study provides evidence that MT reduces symptom burden and enhances the quality of life for hospice patients. Hospice patients and their caregivers endorsed satisfaction with MT. Given the benefits observed, integrating MT into hospice care regimens could potentially improve patient and caregiver outcomes. Larger studies should be conducted to better assess the impact of MT in this population.

Qualitative Analysis of Implementation Factors of an Embedded Caregiver Support Intervention into Adult Day Services.

Adult day services (ADS) are an important and often underutilized support resource for older adults. For persons living with dementia (PLWD), ADS is an optimal access point to not only receive therapeutic and rehabilitative activities, but as a vehicle for respite/relief for dementia caregivers. Yet, there is currently a lack of research on integrating caregiver interventions into home and community-based services such as ADS. This paper reports on qualitative findings from the Improving Outcomes for Family Caregivers of Older Adults with Complex Conditions: The Adult Day Plus (ADS Plus) Program Trial. Drawing from semi-structured interviews conducted with family caregivers and ADS site staff, we conducted a thematic analysis to examine the implementation process of ADS Plus. Themes address the relational nature of the intervention, learning, influence of the administrative infrastructure, and receptivity of ADS Plus. Our analysis determined that implementation of ADS Plus was feasible and accepted by site staff and dementia caregivers but also calls for additional evaluation of embedded caregiver support interventions across different contexts (e.g., staff size, limited technology environments) to further identify and test implementation mechanisms across settings.

Engaging Fathers for Effective Child Nutrition and Development in Tanzania (EFFECTS): study protocol for a five-arm, cluster-randomized trial

BackgroundGlobally, 144 million children under 5 years are undernourished and 250 million do not meet their developmental potential. Multi-input interventions, such as bundled nutrition and parenting interventions, are designed to mitigate risks for multiple child outcomes. There is limited evidence that bundled interventions have additive benefits to nutrition, growth, or development outcomes. These outcomes share common risks; therefore, designing interventions to tackle these risks using a common theory of change may optimize effectiveness. Emerging evidence suggests explicit engagement of fathers may benefit child outcomes, but few trials have tested this or included data collected from fathers.MethodsEngaging Fathers for Effective Child Nutrition and Development in Tanzania (EFFECTS) is a community-based cluster-randomized controlled trial that will be implemented in the rural Mara Region, Tanzania. The trial aims (1) to test a bundled nutrition and parenting program delivered to mothers’ groups, with or without fathers’ groups, over 12 months on child and caregiving outcomes compared to a nutrition program alone, and (2) to test nutrition or bundled nutrition and parenting programs delivered to mothers’ and fathers’ groups over 12 months on child and caregiving outcomes compared to programs delivered to mothers alone. The trial comprises five arms: (1) mothers’ groups receiving a nutrition program, (2) mothers’ groups receiving a bundled nutrition and parenting program, (3) mothers’ and fathers’ groups receiving a nutrition program, (4) mothers’ and fathers’ groups receiving a bundled nutrition and parenting program, and (5) control receiving standard of care health services. The primary outcomes are child dietary diversity and early child development (mental and motor development). Parents with a child under 18 months will be enrolled in peer groups and receive twice monthly intervention by trained community health workers. Data will be collected from mothers, fathers, and children at baseline (pre-intervention), midline, and endline (post-intervention).DiscussionEFFECTS will generate evidence on the effects of bundled nutrition and parenting interventions on child nutrition, growth, and development outcomes; determine the benefits of engaging fathers on child, caregiving, and caregiver outcomes; and investigate common and unique pathways between treatments and child outcomes.Trial registrationClinicalTrials.gov NCT03759821. Registered on November 30, 2018