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There is a need for understanding the breadth of interventions for caregivers of individuals receiving hospice care at home, given the important role caregivers play in caring and the negative outcomes (e.g., depression) associated with their caregiving. Previous reviews were limited in scope to certain types of interventions or patient populations. The objective of this scoping review was to broadly examine the interventions targeting caregivers who provide care to terminally ill patients in home, with the purpose of (1) describing the characteristics of these interventions, (2) discussing key outcomes, limitations, and knowledge gaps, (3) highlighting intervention strengths, and (4) proposing future research directions. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Intervention studies that met the inclusion criteria and that were published up until October 2022 were obtained from the following databases: Ovid MEDLINE, Ovid EMBASE, CINAHL (EBSCO), and The Cochrane Library (Wiley). We analyzed 76 studies describing 55 unique interventions that took place in 14 countries. Interventions were largely delivered by nurses (n = 18, 24%), followed by an interdisciplinary team (n = 16, 21%), a health care provider (n = 10, 13%), research staff (n = 10, 13%), social worker (n = 5, 7%), and others (n = 11, 15%). Six interventions (8%) were self-administered. The most measured outcome was caregiver quality of life (n = 20, 26%), followed by anxiety (n = 18, 24%) and burden (n = 15, 20%). Missing data on patient and caregiver characteristics (i.e., age, gender) were common, and less than half of studies (n = 32, 42%) reported race/ethnicity data. Our review highlighted the current state of interventions for caregivers of patients receiving hospice care at home. Many of the interventions were in the early phases of development, raising the need for future studies to look at efficacy, effectiveness, and the ability to implement interventions in real-world settings. [ABSTRACT FROM AUTHOR]

Abstract Background Caregivers of children with developmental disabilities (DDs) in Ethiopia experience stigma and exclusion. Due to limited existing services and substantial barriers to accessing care, they often lack support. Caregiver empowerment could help address injustices that hinder their capacity to support their child as they would like. The aim of this study was to explore the meaning and potential role of empowerment for caregivers raising a child with a DD and how empowerment was situated in relation to other priorities in service development. Methods This was a qualitative phenomenological study. Semi-structured interviews were conducted in Amharic and English with caregivers of children with a DD (n = 15), clinicians (n = 11), community-based health extension workers (n = 5), representatives of non-governmental organisations working with families with DDs (n = 17), and representatives of local authorities in health, education, and social care (n = 15). Data were analysed thematically. Results Three main themes were developed: “Barriers to exercising caregivers’ agency”; “Whose decision is it to initiate empowerment?”; and “Supporting caregivers through support groups”. Caregiver capacity to do what they thought was best for their child was undermined by poverty, a sense of hopelessness, experience of domestic abuse and multiple burdens experienced by those who were single mothers. Caregivers were nonetheless active in seeking to bring about change for their children. Caregivers and professionals considered support groups to be instrumental in facilitating empowerment. Participants reflected that caregiver-focused interventions could contribute to increasing caregivers’ capacity to exercise their agency. A tension existed between a focus on individualistic notions of empowerment from some professionals compared to a focus on recognising expertise by experience identified as vital by caregivers. Power dynamics in the context of external funding of empowerment programmes could paradoxically disempower. Conclusion Caregivers of children with DDs in Ethiopia are disempowered through poverty, stigma, and poor access to information and resources. Shifting power to caregivers and increasing their access to opportunities should be done on their own terms and in response to their prioritised needs.

Background: Caregivers of children with developmental disabilities (DDs) in Ethiopia experience stigma and exclusion. Due to limited existing services and substantial barriers to accessing care, they often lack support. Caregiver empowerment could help address injustices that hinder their capacity to support their child as they would like. The aim of this study was to explore the meaning and potential role of empowerment for caregivers raising a child with a DD and how empowerment was situated in relation to other priorities in service development. Methods: This was a qualitative phenomenological study. Semi-structured interviews were conducted in Amharic and English with caregivers of children with a DD (n = 15), clinicians (n = 11), community-based health extension workers (n = 5), representatives of non-governmental organisations working with families with DDs (n = 17), and representatives of local authorities in health, education, and social care (n = 15). Data were analysed thematically. Results: Three main themes were developed: "Barriers to exercising caregivers' agency"; "Whose decision is it to initiate empowerment?"; and "Supporting caregivers through support groups". Caregiver capacity to do what they thought was best for their child was undermined by poverty, a sense of hopelessness, experience of domestic abuse and multiple burdens experienced by those who were single mothers. Caregivers were nonetheless active in seeking to bring about change for their children. Caregivers and professionals considered support groups to be instrumental in facilitating empowerment. Participants reflected that caregiver-focused interventions could contribute to increasing caregivers' capacity to exercise their agency. A tension existed between a focus on individualistic notions of empowerment from some professionals compared to a focus on recognising expertise by experience identified as vital by caregivers. Power dynamics in the context of external funding of empowerment programmes could paradoxically disempower. Conclusion: Caregivers of children with DDs in Ethiopia are disempowered through poverty, stigma, and poor access to information and resources. Shifting power to caregivers and increasing their access to opportunities should be done on their own terms and in response to their prioritised needs. [ABSTRACT FROM AUTHOR]

Multiple psychosocial interventions to treat ADHD symptoms have been developed and empirically tested. However, no clear recommendations exist regarding the utilization of these interventions for treating core ADHD symptoms across different populations. The objective of this systematic review and meta-analysis by the CADDRA Guidelines work Group was to generate such recommendations, using recent evidence. Randomized controlled trials (RCT) and meta-analyses (MA) from 2010 to 13 February 2020 were searched in PubMed, PsycINFO, EMBASE, EBM Reviews and CINAHL. Studies of populations with significant levels of comorbidities were excluded. Thirty-one studies were included in the qualitative synthesis (22 RCT, 9 MA) and 24 studies (19 RCT, 5 MA) were included in the quantitative synthesis. Using three-level meta-analyses to pool results of multiple observations from each RCT, as well as four-level meta-analyses to pool results from multiples outcomes and multiple studies of each MA, we generated recommendations using the GRADE approach for: Cognitive Behavioral Therapy; Physical Exercise and Mind–Body intervention; Caregiver intervention; School-based and Executive intervention; and other interventions for core ADHD symptoms across Preschooler, Child, Adolescent and Adult populations. The evidence supports a recommendation for Cognitive Behavioral Therapy for adults and Caregiver intervention for Children, but not for preschoolers. There were not enough data to provide recommendations for the other types of psychosocial interventions. Our results are in line with previous meta-analytic assessments; however, they provide a more in-depth assessment of the effect of psychosocial intervention on core ADHD symptoms. [ABSTRACT FROM AUTHOR]

Abstract Background Although there are a number of support services accessible for most family dementia caregivers, many caregivers reject available and affordable support. Previous research suggests that rejections of support services may result from insufficient fit of available services with caregivers’ unmet needs and a lack of acknowledgement of caregivers’ unmet needs and associated support services. The present study investigates (a) the number, proportion and types of caregivers’ rejection on recommended tailored support, (b) socio-demographic and clinical determinants of caregiver’s rejection of both people with dementia (PwD) and caregivers, and (c) caregivers’ health-related variables related to caregivers’ rejection. Methods Caregivers’ rejection of tailored support services was identified based on a standardized, computerized unmet needs assessment conducted by dementia-specific qualified nurses. The present analysis is based on data of n = 226 dyads of caregivers and their community-dwelling PwD who participated in a general practitioner (GP)-based, cluster-randomized intervention trial. The trial was approved by the Ethical Committee of the Chamber of Physicians of Mecklenburg-Western Pomerania, registry number BB 20/11. Data analyses were conducted using Stata/IC 13.1. We conducted Welch’s t-test, Pearson’s product-moment correlation, and conditional negative binomial regression models with random effects for GP to account for over-dispersed count data. Results In sum, n = 505 unmet needs were identified and the same number of tailored recommendations were identified for n = 171 family dementia caregivers from the intervention group at baseline. For n = 55 family dementia caregivers not a single unmet need and recommendation were identified. A total of 17.6% (n = 89) of the recommendations were rejected by caregivers. Rejection rates of caregivers differed by type of recommendation. Whereas caregivers’ rejection rate on recommendations concerning mental health (3.6%), physical health (2.5%), and social, legal, and financial affairs (0%) were low, caregivers’ rejection rates concerning social integration (especially caregiver supporting groups) was high (71.7%). Thus, the rejections of family dementia caregivers are mainly linked to the delegation to caregiver supporting groups. Caregivers’ rejections were mainly related to personal factors of caregivers (n = 66), service-related factors (n = 6), relational factors (n = 1), and other factors (n = 17). Furthermore, our results showed that the number of caregivers’ rejections was associated with a higher functional status of the PwD and are mainly associated with the rejection of caregiver supporting groups. Thus, caregivers visit supporting groups more often when the PwD shows low abilities in activities of daily living. Importantly, this is independent of the status of cognition and depression of the PwD as well as the physical and mental health of the family dementia caregivers. Conclusions Our results underline the importance of understanding factors that determine caregivers’ rejection of support services. These need to be specifically addressed in tailored solutions for caregivers’ support services. Trial registration ClinicalTrials.gov Identifier: NCT01401582 (date: July 25, 2011, prospective registered).

This study examined implementation of an evidence-based home reading program by caregivers of children with language impairment. Caregivers received materials and supports to read with their children for 15 weeks, four times weekly; in total, 128 caregivers were enrolled. Survival analysis showed that 55% of caregivers completed the program, and the majority of dropouts did so early in the intervention. Mulitnominal logistic regression results showed that dropout was associated with household income, child literacy skills, and receipt of behavior-change techniques by caregivers, especially financial incentives (50 cents per book reading). Results may advance the science of implementation in the area of early childhood disability and could provide suggestions to improve caregivers' effectiveness in implementing interventions to their children. [ABSTRACT FROM AUTHOR]

Background: Although there are a number of support services accessible for most family dementia caregivers, many caregivers reject available and affordable support. Previous research suggests that rejections of support services may result from insufficient fit of available services with caregivers' unmet needs and a lack of acknowledgement of caregivers' unmet needs and associated support services. The present study investigates (a) the number, proportion and types of caregivers' rejection on recommended tailored support, (b) socio-demographic and clinical determinants of caregiver's rejection of both people with dementia (PwD) and caregivers, and (c) caregivers' health-related variables related to caregivers' rejection.Methods: Caregivers' rejection of tailored support services was identified based on a standardized, computerized unmet needs assessment conducted by dementia-specific qualified nurses. The present analysis is based on data of n = 226 dyads of caregivers and their community-dwelling PwD who participated in a general practitioner (GP)-based, cluster-randomized intervention trial. The trial was approved by the Ethical Committee of the Chamber of Physicians of Mecklenburg-Western Pomerania, registry number BB 20/11. Data analyses were conducted using Stata/IC 13.1. We conducted Welch's t-test, Pearson's product-moment correlation, and conditional negative binomial regression models with random effects for GP to account for over-dispersed count data.Results: In sum, n = 505 unmet needs were identified and the same number of tailored recommendations were identified for n = 171 family dementia caregivers from the intervention group at baseline. For n = 55 family dementia caregivers not a single unmet need and recommendation were identified. A total of 17.6% (n = 89) of the recommendations were rejected by caregivers. Rejection rates of caregivers differed by type of recommendation. Whereas caregivers' rejection rate on recommendations concerning mental health (3.6%), physical health (2.5%), and social, legal, and financial affairs (0%) were low, caregivers' rejection rates concerning social integration (especially caregiver supporting groups) was high (71.7%). Thus, the rejections of family dementia caregivers are mainly linked to the delegation to caregiver supporting groups. Caregivers' rejections were mainly related to personal factors of caregivers (n = 66), service-related factors (n = 6), relational factors (n = 1), and other factors (n = 17). Furthermore, our results showed that the number of caregivers' rejections was associated with a higher functional status of the PwD and are mainly associated with the rejection of caregiver supporting groups. Thus, caregivers visit supporting groups more often when the PwD shows low abilities in activities of daily living. Importantly, this is independent of the status of cognition and depression of the PwD as well as the physical and mental health of the family dementia caregivers.Conclusions: Our results underline the importance of understanding factors that determine caregivers' rejection of support services. These need to be specifically addressed in tailored solutions for caregivers' support services.Trial Registration: ClinicalTrials.gov Identifier: NCT01401582 (date: July 25, 2011, prospective registered). [ABSTRACT FROM AUTHOR]

This systematic review and meta-analysis compared the effects of 131 randomized controlled trials, published between 2006 and mid-2018, for dementia caregivers with community-dwelling care-recipients. A new classification of interventions was proposed to enable a more detailed examination of the effectiveness of psychological interventions; 350 postintervention effect sizes in 128 studies and 155 follow-up effect sizes in 55 studies were computed. Postintervention effects were significant for all outcomes when all interventions are pooled together. Follow-up effects were found for all outcomes, except physical health and positive aspects of caregiving. Educational programs with psychotherapeutic components, counseling/psychotherapy, and mindfulness-based interventions had the strongest effects on reducing depressive symptoms. Multicomponent and miscellaneous interventions had the largest effects on reduction of burden/stress. Multicomponent and mindfulness-based interventions had the largest effects on enhancing subjective well-being. It should be noted that mindfulness and counseling/psychotherapy studies generally had small samples, and studies with smaller sample sizes tended to report larger effects. Metaregression analyses revealed that, overall, younger caregivers benefited more from the interventions. Although the majority of studies were from North America and Europe, there were a growing number from Asia and other parts of the world. Recommendations were made, including developing new theoretical models that address caregivers' changing needs over time; development of interventions that can be flexibly administered and individually "tailored," and assessing positive as well as negative aspects of caregiving to encourage development of greater resilience. We conclude with observations on the global health significance of improving the impact of psychosocial interventions on caregivers' lives. (PsycINFO Database Record (c) 2020 APA, all rights reserved). [ABSTRACT FROM AUTHOR]

Background: Caregivers providing informal care for people with dementia (PwD) often report unmet needs, burden, and health impairments. Optimal support for family dementia caregivers will likely benefit from better understanding and assessment of the prevalence and types of caregivers' unmet needs and associated socio-demographic and clinical characteristics.Objective: The present study investigates 1) the number and types of caregivers' unmet needs, 2) socio-demographic and clinical characteristics of both PwD and caregivers, and 3) caregivers' burden and health-related outcomes that are related to caregivers' unmet needs.Methods: The present analyses are based on cross-sectional data of n = 226 dyads of caregivers and their community-dwelling PwD participating in a comprehensive standardized, computer-based caregivers' needs assessment within a general practitioner (GP)-based, cluster-randomized intervention trial.Results: A total of n = 505 unmet needs were identified for n = 171 caregivers from the intervention group at baseline. Only 24.3% caregivers reported no unmet need (n = 55), whereas 75.7% caregivers had at least one unmet need (n = 171). Caregivers had on average 2.19 unmet needs (mean = 2.19, SD = 2.15). Specifically, 53.1% of caregivers had one up to three unmet needs (n = 120), 18.6% (n = 42) had three up to six unmet needs, and 4.0% (n = 9) had more than six unmet needs.Discussion: Our results underline the importance of a comprehensive needs assessment for family dementia caregivers to develop and implement concepts that can provide family dementia caregivers with optimal support. [ABSTRACT FROM AUTHOR]

Background: Existential behavioural therapy (EBT) is a recently developed intervention to support informal caregivers of patients in a specialist palliative care unit and was initially established as a six-session group programme. This pilot study aimed to test the feasibility and acceptability of an adapted short-term, individual approach of EBT in preparation for a randomized controlled trial (RCT). Methods: The study was conducted in a prospective, mixed methods design including four quantitiative assessments with embedded qualitative interviews at one assessment. The intervention offered two one-hour therapeutic sessions focusing on (1) mindfulness and (2) existential meaning-in-life as a source of strength provided by a trained psychotherapist. To test the feasibility of the intervention, doubling of the participation rate, compared to the previous group study (13,6 %) as well as an attrition rate of less than 30 % were set as thresholds. To test the acceptability of the intervention, self-rated usefulness of individual aspects of the intervention and the frequency of implementing therapeutic elements by the carers were set as criteria. Acceptability testing also included the number of participants who completed both sessions, where we expected more than 75 % as a criterion for acceptability. Return rates of quantitative questionnaires were set as criteria for the feasibility of data collection (<33 % loss expected within the study period). Qualitative interviews were used to collect additional data on feasibililty and acceptability and to explore potential harms and benefits of the intervention. Results: 44/102 (43,1 %) of eligible informal caregivers agreed to participate in the study. Due to attrition of 13 caregivers (attrition rate: 29,5 %), 31 caregivers were included in the trial. Self-rated usefulness showed sufficiant results for all but one individual aspect. Frequency of implementing therapeutic elements showed wide inter-item as well as inter-participant ranges and decreased over the study period. All participants completed both sessions. Return rates of the questionnaires were within the expected range. According to the interviews, the intervention was associated with several participant-identified benefits. No severe adverse effects were observed. Conclusions: Findings suggest that the short-term, individual EBT proved feasible and mostly acceptable. [ABSTRACT FROM AUTHOR]

Purpose: Few studies have addressed the effects of caregiver interventions on the costs of care for the care recipient. This study evaluated the effects of a caregiver education and support group delivered via the telephone on care recipient health care utilization and cost. Design and Methods: The Telehealth Education Program (TEP) is a manualized program of education and support designed for caregivers of veterans with moderate-to-severe dementia. One hundred fifty-eight spousal caregivers were randomly assigned to either the ten 1-hr sessions of TEP or the usual care (UC). Health care utilization and cost data were extracted from veterans Information System Technology Architecture databases and included outpatient, inpatient, and nursing home data within the VA. Results: Total health care cost data showed a significant (p = .039) average cost savings of $2,768 per patient at 6 months for TEP as compared with UC, but these were not maintained at 1 year. All costs included in the total costs measure contributed to this difference. Inpatient, outpatient, and nursing home costs were all assessed separately, but only nursing home costs reached significance (p = .009), with a savings of $1,057 per patient at 6 months. Implications: The TEP caregiver intervention resulted in short-term cost savings for veteran care recipients. Future studies of caregiver interventions should examine their effects on costs of care for the care recipients in addition to their effects on caregiver outcomes. [ABSTRACT FROM PUBLISHER]

This study examines whether caregivers' differential utilization of respite and counseling support services is associated with different situational stress processes. A multinomial regression analysis was conducted to compare respite users, counseling users, and those who used neither service, using data collected on a statewide random sample of 1,643 California caregivers providing assistance to individuals aged 50 or older. Compared with caregivers who used neither service, respite service users were more likely to have demanding care situations giving rise to physical symptoms of stress, and were more likely to use community services for the care recipient to augment their care. In contrast, counseling service users were more likely to be managing the meaning of their care situation by seeking out information about services and talking with a confidant about their situation, while coping with both emotional and physical symptoms of stress. Tailoring caregiver interventions to meet the support needs and coping strategies stemming from diverse caregiving situations and caregiver characteristics may increase the likelihood that those interventions will be effective in alleviating or preventing deleterious secondary stress frequently experienced by family caregivers. [ABSTRACT FROM AUTHOR]

Purpose: The neuropsychiatric symptoms associated with Alzheimer's disease are a major contributor to caregiver distress and burden. Despite recent efforts to teach caregivers skills to manage neuropsychiatric symptoms and reduce burden, there continues to be limited evidence that these strategies have helped caregivers of individuals with Alzheimer's disease to effectively manage neuropsychiatric symptoms. We report here on Project CARE, a randomized controlled trial designed to test the effectiveness of a caregiver-based multicomponent behavioral intervention aimed to reduce caregiver distress related to neuropsychiatric symptoms, as well as general caregiver burden, and to decrease neuropsychiatric symptom severity among individuals with Alzheimer's disease. Design and Methods: The behavioral intervention involved five weekly sessions designed to teach caregivers specific techniques for managing patient neuropsychiatric symptoms in the home environment. Through the use of a randomized control trial, 80 caregivers were assigned to either the behavioral intervention group or a psycho-educational control group and were assessed both before and after the intervention. Results: Compared with caregivers in the control group, caregivers in the behavioral intervention group displayed significantly greater reductions in caregiver distress related to neuropsychiatric symptoms (p = .005). Global caregiver burden, however, did not decrease significantly for caregivers in either group (p > .05). Although it was not statistically significant, there was a trend toward greater reductions in care recipients' neuropsychiatric symptom severity in the intervention group (p = .10). Implications: The current findings suggest that targeted, group-based behavioral interventions are effective for reducing distress related to neuropsychiatric symptoms among caregivers of individuals with Alzheimer's disease and for reducing care recipients' neuropsychiatric symptoms. [ABSTRACT FROM AUTHOR]

This study reports the effects of training six adult caregivers to use an interactive reading routine, termed Complete Reading Cycle (CRC), during storybook reading with their preschool children, aged 3;2 to 3;5, who exhibited language impairment. Caregivers were taught to be more responsive to their children’s communicative attempts during reading and to more actively engage the children in reading the story. Measures of child change included communicative participation and lexical diversity of utterances during adult–child shared reading. Children significantly increased the frequency of communicative turns, total number of words, and number of different words produced during shared storybook reading as a result of caregiver training. Five of the six children had higher mean frequencies for story initiations during training. However, increases in initiations were not statistically significant, with considerable variability across children for this measure.: Learning outcomes(1) As a result of this activity, the participant will be able to discuss positive communicative changes in children with language impairment during adult–child storybook reading. (2) As a result of this activity, the participant will be able to use the storybook reading procedures with parents of preschool children exhibiting language impairment. [Copyright &y& Elsevier]

Background: Caregivers providing informal care for people with dementia (PwD) often report unmet needs, burden, and health impairments. Optimal support for family dementia caregivers will likely benefit from better understanding and assessment of the prevalence and types of caregivers' unmet needs and associated socio-demographic and clinical characteristics., Objective: The present study investigates 1) the number and types of caregivers' unmet needs, 2) socio-demographic and clinical characteristics of both PwD and caregivers, and 3) caregivers' burden and health-related outcomes that are related to caregivers' unmet needs., Methods: The present analyses are based on cross-sectional data of n = 226 dyads of caregivers and their community-dwelling PwD participating in a comprehensive standardized, computer-based caregivers' needs assessment within a general practitioner (GP)-based, cluster-randomized intervention trial., Results: A total of n = 505 unmet needs were identified for n = 171 caregivers from the intervention group at baseline. Only 24.3% caregivers reported no unmet need (n = 55), whereas 75.7% caregivers had at least one unmet need (n = 171). Caregivers had on average 2.19 unmet needs (mean = 2.19, SD = 2.15). Specifically, 53.1% of caregivers had one up to three unmet needs (n = 120), 18.6% (n = 42) had three up to six unmet needs, and 4.0% (n = 9) had more than six unmet needs., Discussion: Our results underline the importance of a comprehensive needs assessment for family dementia caregivers to develop and implement concepts that can provide family dementia caregivers with optimal support.

Objective: Several interventions have been developed during recent years to support informal caregivers of palliative patients. However, these trials reported low enrollment rates. Employing a newly developed group intervention, existential behavioral therapy (EBT), one study reported that only 13.6% of approached informal caregivers participated. The purpose of our present study was to identify the reasons for this low enrollment rate in order to improve future support designs., Method: All participants in the EBT trial (intervention vs. standard-care control group) as well as those who declined participation during a 4-month recruitment period were studied prospectively over 12 months. Andersen's behavioral model of healthcare service use was employed to identify group differences between acceptors and decliners: predisposing (age, gender, education, family status, relationship), enabling (social support, distance to hospital, caring vs. bereaved), and need factors (psychological distress, quality of life) were evaluated in a binary-logistic model., Results: Some 94 decliners were compared to 160 EBT participants (n = 81 intervention, n = 79 control). Caregivers who took part were significantly more distressed and suffered from a lower quality of life compared to decliners. Not only these need factors but also predisposing (age <55 years) and enabling (use of social/professional support, familiarity with caregiving institution) factors were associated with EBT utilization. At the 12-month follow-up, EBT intervention participants reported greater quality of life improvements than decliners or controls (p = 0.05). While all groups had mean anxiety scores below the cutoff at 12-month follow-up, decliners showed better improvement in anxiety compared to EBT participants (intervention p = 0.04, controls p = 0.03)., Significance of Results: On average, decliners are less burdened: they may be more resilient, may have better coping strategies, or already have a sufficient support network in place. Screening caregivers with regard to their experienced quality of life and targeting those in need, especially younger caregivers with low levels of quality of life, may help to allocate resources more appropriately.