"Being an informal caregiver - strengthening resources": mixed methods evaluation of a psychoeducational intervention supporting informal caregivers in palliative care.

BACKGROUND: Informal caregivers are key support for patients with progressive incurable diseases. However, their own needs often remain unmet. Therefore, we developed, manualised and implemented the intervention "Being an informal caregiver - strengthening resources" aiming to support and empower informal caregivers by addressing relevant information-related, physical, psychological and social needs. METHODS: In this pilot study, we evaluated the acceptance and experiences with this psychoeducational intervention. The study was conducted over two years (2019-2021). Informal caregivers were recruited from the University Medical Centre Hamburg-Eppendorf and the metropolitan region of Hamburg, Germany. The intervention was aimed at adult persons who identified themselves as an informal caregiver to an adult patient with a progressive incurable cancer and non-cancer disease. For the evaluation we used a mixed methods approach, combining a longitudinal questionnaire survey (pre-intervention, after each module, 3-months follow-up) and semi-structured interviews post-intervention. Quantitative data were analysed using descriptive statistics and a paired t-Test, interviews were analysed based on the qualitative content analysis according to Mayring. Results were triangulated using a convergent triangulation design. RESULTS: Of 31 informal caregivers who received the intervention, 25 returned the follow-up questionnaire and 20 informal caregivers were interviewed. Triangulated results showed a high satisfaction with the implementation of the intervention. Of a broad range of subjective benefits, gaining knowledge, self-awareness and self-efficacy were most apparent. Informal caregivers reported improved preparedness, awareness of own needs as well as confidence regarding handling own emotions and interacting with the ill person. However, implementing the learned skills into daily life can be challenging due to internal and external factors. Motivations and challenges for participating as well as potential for improvement were identified. CONCLUSIONS: This pilot study showed an overall positive evaluation and several subjective benefits of the psychoeducational intervention "Being an informal caregiver - strengthening resources". Further research is needed to measure the efficacy of this intervention on informal caregivers' outcomes. Therefore, a multicentre randomized prospective study is planned.

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.

BACKGROUND: Informal 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 ANALYSIS: In 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. DISCUSSION: If 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 REGISTRATION: ClinicalTrials.gov; NCT06307418, registered 12.03.2024 (https://clinicaltrials.gov/search? term=NCT06307418).

Effects of Telemedicine on Informal Caregivers of Patients in Palliative Care: Systematic Review and Meta-Analysis.

Background: Telemedicine technology is a rapidly developing field that shows immense potential for improving medical services. In palliative care, informal caregivers assume the primary responsibility in patient care and often face challenges such as increased physical and mental stress and declining health. In such cases, telemedicine interventions can provide support and improve their health outcomes. However, research findings regarding the use of telemedicine among informal caregivers are controversial, and the efficacy of telemedicine remains unclear. Objective: This study aimed to evaluate the impacts of telemedicine on the burden, anxiety, depression, and quality of life of informal caregivers of patients in palliative care. Methods: A systematic literature search was conducted using the PubMed, Embase, Web of Science, CENTRAL, PsycINFO, CINAHL Plus with Full Text, CBM, CNKI, WanFang, and VIP databases to identify relevant randomized controlled trials published from inception to March 2023. Two authors independently screened the studies and extracted the relevant information. The methodological quality of the included studies was assessed using the Cochrane risk-of-bias tool. Intervention effects were estimated and sensitivity analysis was conducted using Review Manager 5.4, whereas 95% prediction intervals (PIs) were calculated using R (version 4.3.2) and RStudio. Results: A total of 9 randomized controlled trials were included in this study. The meta-analysis indicated that telemedicine has reduced the caregiving burden (standardized mean differences [SMD] -0.49, 95% CI -0.72 to -0.27; P<.001; 95% PI -0.86 to -0.13) and anxiety (SMD -0.23, 95% CI -0.40 to -0.06; P=.009; 95% PI -0.98 to 0.39) of informal caregivers; however, it did not affect depression (SMD -0.21, 95% CI -0.47 to 0.05; P=.11; 95% PI -0.94 to 0.51) or quality of life (SMD 0.35, 95% CI -0.20 to 0.89; P=.21; 95% PI -2.15 to 2.85). Conclusions: Although telemedicine can alleviate the caregiving burden and anxiety of informal caregivers, it does not significantly reduce depression or improve their quality of life. Further high-quality, large-sample studies are needed to validate the effects of telemedicine. Furthermore, personalized intervention programs based on theoretical foundations are required to support caregivers.

Emotional Support from Care Recipients, Caring Relationship Quality, and Caregiving Self-Efficacy among Family Caregivers of Older Adults.

We analyzed 756 family caregivers (mean age = 62.3 years), investigating how emotional support from older care recipients was linked to caregivers' self-efficacy through caring relationship qualtiy. Results indicate a significant positive association between emotional support and caregivers' self-efficacy (r = 0.207, p < .01). Caring relationship quality positively correlated with emotional support (r = 0.292, p < .01) and caregivers' self-efficacy (r = 0.141, p < .01). Controlling for socialdemographic and care-related factors, relationship quality partially mediated the association between emotional support from care recipients and caregivers' self-efficacy. This suggests that interventions supporting caregivers' self-efficacy may benefit from considering both care recipients and dyadic relationships.

Combined Effects of the Mobile Health (mHealth) Psychoeducation and Benson Relaxation Technique in Reducing the Caregiving Burden of Cancer Patients in Bangladesh: A Protocol for a Randomized Controlled Trial.

BACKGROUND: Chronic and noncommunicable diseases, including cancer, are a significant global public health concern. Family members or friends who serve as caregivers significantly contribute to supporting cancer patients without formal medical training. In most cases in Bangladesh, women perform caregiving activities with household responsibilities and lack adequate support from the family and healthcare systems; consequently, they face a significant burden as caregivers. This study aims to assess the effectiveness of combined mobile health (mHealth) psychoeducation and the Benson relaxation technique (BRT) on the caregiving burden among female informal caregivers of cancer patients in Bangladesh. METHODS: We shall conduct a prospective, open-label, two-arm (1:1), randomized controlled trial in a hospital, focusing on the burden of informal female caregivers of cancer patients in Bangladesh. The combined intervention will be delivered to the intervention group through mHealth starting April 2024 and will span six months. Participants' data will be collected through face-to-face interviews using the Zarit Burden Interview (ZBI), the Hospital Anxiety Depression Scale, and the World Health Organization Quality of Life Bangla Short Instrument. Outcomes will be assessed at the baseline, midline, and endline. We shall employ descriptive statistics such as frequencies, percentages, means, and standard deviations. The t-test or Mann-Whitney U test will be used to compare continuous variables. Additionally, a two-way repeated-measures analysis of variance will be employed to evaluate the outcomes. RESULTS: Participant enrollment began in January 2024, and recruitment is ongoing. The results of this study will be disseminated through publications and conferences. No external professional writers were involved in writing this manuscript. CONCLUSION: This study addresses the gap in the assessment of combined interventions for caregiver burden in Bangladesh. These outcomes may provide valuable insights into caregivers' well-being, caregiving responsibilities, and the potential for integrated interventions to reduce the burden, especially among women. If effective, we recommend the national integration of psychoeducation and BRT using mHealth.

The moderating effect of care time on care-related characteristics and caregiver burden: differences between formal and informal caregivers of dependent older adults.

Objective: This study examined differences in care burden between formal and informal caregivers of dependent older adults according to care-related characteristics, and whether care time had a moderating effect on the relationship between care-related characteristics and caregiver burden. Methods: Participants were formal (n = 520) and informal caregivers (n = 142) of dependent older adults in South Korea. Caregiver burden was measured using the Korean version of the Zarit Burden Interview. Data were analyzed using hierarchical regression with interaction terms and moderation analysis. Results: Caregiver burden was higher for informal caregivers than formal caregivers. Factors associated with an increased risk of caregiver burden in both formal and informal caregiver of dependent older adults were caregivers' stress, physical strain, and care time. Care time significantly moderated the relationship between care attitude and care burden only among formal caregivers. When formal caregivers' care time was 1 standard deviation higher than the mean value, care attitude was significantly associated with care burden (bsimple = -0.903, SE = 0.106, p < 0.001). Conclusion: The caregiver burden of dependent older adults can be reduced by providing interventions to attenuate the effects of modifiable risk factors that were identified in this study. And to weaken the relationship between care attitude and burden of formal caregivers who have long care hours, a positive social atmosphere for care should be provided in addition to education. To realize sustainable care, policy considerations that reflect the results of this study will help solve the problem of formal and informal caregiver burden of dependent older adults.

Feasibility and Preliminary Impact of a Web-Based Mind Body Intervention for Older Dementia Caregivers.

BACKGROUND: Mind-body interventions focused on intentional breathing and movement have been found to mitigate the negative effects of caregiving such as such as stress, psychosocial distress, and emotional distress associated for persons living with Alzheimer's disease and related dementias. OBJECTIVE: The objective was to assess the feasibility and acceptability and preliminary impacts of our 12-week mind body intervention "Gentle Yoga and Yogic Breathing" for caregivers of persons living with dementia on health outcomes including mutuality, depression and anxiety, loneliness and social support, quality of life, and physical function. METHODS: We conducted a single-group cohort study in which 20 caregivers were enrolled. Data were collected at baseline and at the 12-week post-intervention endpoint. RESULTS: The intervention was acceptable; 75% (n = 15/20) completed the study; 16 completed post-study questionnaires. Very few experienced technical issues; 31% (n = 3) most commonly reported as poor internet connectivity, 75% (n = 12/16) perceived a health benefit, 88% (n = 14/16) perceived improved day-to-day mood, and 100% (n = 16/16) would recommend the intervention to other caregivers. Although there was minimal change from baseline to 12 weeks, for health outcomes, there were very small improvements noted in anxiety and overall health. There were no reported adverse events. CONCLUSION: The intervention was well received and is feasible and acceptable for future studies of stress and health management interventions for caregivers of persons living with dementia.Registered with https://www.ClinicalTrials.gov (NCT03853148).

The Involvement of Caregivers in the End-of-life Care of an Older Adult Living in a Long-term Care Home: A Qualitative Case Study with Nurses and Relatives.

BACKGROUND: A key role of nurses working in long-term care homes (LTCHs) is to promote the involvement of care partners in end-of-life (EOL) care. However, studies on the involvement of care partners in EOL care in LTCHs have focused on care planning and decision-making. While care partners can participate in other ways, it's unclear how they are currently involved in EOL care by staff. PURPOSE: We aimed to explore the involvement of care partners in the EOL care of an older adult living in a LTCH. METHODS: A qualitative case study was conducted. Data was collected from a sample of four nurses and three care partners, using sociodemographic questionnaires, individual semi-structured interviews, documents pertaining to the LTCH's philosophy for EOL care, and a field diary. RESULTS: The results of a thematic analysis showed the broad scope of care partners' possible involvement, including contributing to care, obtaining information, and being present. As there was some variation in care partners' desire to be involved, nurses seemed to rely on them to convey their wishes. To promote this involvement, some strategies aimed at health professionals and managers were suggested. CONCLUSIONS: These results can guide improvement in clinical practices and raise awareness on the EOL care experiences of care partners.

National Estimates of Incremental Work Absenteeism Costs Associated With Adult Children of Parents With Alzheimer's Disease and Related Dementias.

OBJECTIVE: More than half of primary caregivers for ADRD patients are adult children, yet there is little empirical evidence on how caring for parents with ADRD affects their employment. Using a nationally representative dataset, this study aimed to estimate incremental work absenteeism costs for adult children of parents with ADRD. DESIGN, SETTING, AND PARTICIPANTS: The study used the data from the 2015-2021 Medical Expenditure Panel Survey (MEPS). Multivariate regressions and two-part models were employed to estimate the incremental work absenteeism costs among adult children aged 40 to 64 who had at least one parent diagnosed with ADRD, compared with those who did not have ADRD parents. MEASUREMENTS: The incremental work absenteeism costs due to caregiving for adult children with ADRD parents was a cumulated estimation of labor productivity cost at three stages: (1) the likelihood of not working due to unemployment, (2) the likelihood of missing any workdays for caregiving, and (3) the number of workdays missed due to caregiving. RESULTS: Adult children with ADRD parents were more likely to be unemployed (OR = 1.80, p = 0.024) and 2.95 times more likely to miss work for caregiving (p = 0.002) than those with non-ADRD parents. The difference in the number of workdays missed for caregiving between children with and without ADRD parents was not significant. The incremental effects of having ADRD parents were estimated to be $4,510.29 ($1,702.09-$6,723.69) per person per year. CONCLUSIONS: Having ADRD parents significantly increases the chances of unemployment and missing any workdays for caregiving, leading to higher lost labor productivity costs for adult children with ADRD parents.

Family physicians' preferences for education to support family caregivers: a sequential mixed methods study.

BACKGROUND: One in four Canadians is a family caregiver. Family caregivers (carers, care-partners) are relatives or chosen family, friends, or neighbors who provide 75 to 90% of the care for people with physical or mental illness, disabilities, or frailty living in community homes and assist with 15 to 30% of the care in congregate care. However, a recent (2022) Statistics Canada population health study reports 44% of family caregivers are distressed. Family physicians and primary care teams are well-positioned to support family caregivers; yet, family caregiver needs assessments tend to be ad hoc and their most common needs remain unmet. Research recommends training healthcare professionals to enhance their knowledge and skills to support family caregivers. METHODS: The objective of this sequential mixed methods research, a survey followed by qualitative interviews, was to explore family physicians' desire and preferences for education about supporting family caregivers. 85 family physicians completed the online survey and eight took part in the interviews. Results from the survey and interviews were compared, contrasted, and interpreted together. RESULTS: Primary care physicians expressed a desire to be better equipped to assess and support FCGs' needs. Even though most physicians (61%) were very/confident about addressing family caregivers' needs, 72% were highly/interested in education to support family caregivers of their patients. Topics with the most interest were assessing family caregivers needs in an organized way, assisting family caregivers to access resources, and address system and practice barriers to support family caregivers. The overarching theme running through the interviews was physicians hope for education to help change the patient-focused culture to inclusion of FCGs. The three themes reflect physicians' conviction about including family caregivers in patient care: We need to take care of their caregivers, Practice and system barriers thwart including family caregivers, and Practical education might help. CONCLUSIONS: This study of family physicians' preferences for education to support family caregivers will inform the development of education about supporting family caregivers for family physicians and trainees.

"It's a stressful, trying time for the caretaker": an interpretive description qualitative study of postoperative transitions in care for older adults with frailty from the perspectives of informal caregivers.

BACKGROUND: Older adults with frailty have surgery at a high rate. Informal caregivers often support the postoperative transition in care. Despite the growing need for family and caregiver support for this population, little is known about the experience of providing informal care to older adults with frailty during the postoperative transition in care. The purpose of this study was to explore what is important during a postoperative transition in care for older adults with frailty from the perspective of informal caregivers. METHODS: This was a qualitative study using an interpretive description methodology. Seven informal caregivers to older adults [aged ≥ 65 years with frailty (Clinical Frailty Scale score ≥ 4) who had an inpatient elective surgery] participated in a telephone-based, semi-structured interview. Audio files were transcribed and analyzed using reflexive thematic analysis. RESULTS: Four themes were constructed: (1) being informed about what to expect after surgery; (2) accessible communication with care providers; (3) homecare resources are needed for the patient; and (4) a support network for the caregivers. Theme 4 included two sub-themes: (a) respite and emotional support and (b) occupational support. CONCLUSIONS: Transitions in care present challenges for informal caregivers of older adults with frailty, who play an important role in successful transitions. Future postoperative transitional care programs should consider making targeted information, accessible communication, and support networks available for caregivers as part of facilitating successful transitions in care.

In-hospital psychoeducation for family caregivers of Nigerian children with cancer (The RESCUE Study).

OBJECTIVES: High levels of caregiver burden (CB) are experienced by informal caregivers of pediatric patients with cancer. There is increasing evidence highlighting the extent of CB across sub-Saharan African countries, although there remains lack of interventions that target improvements in their experience. This study aimed to determine the impact of a structured psychoeducation program on caregivers' outcomes relating to preparedness to provide care, burden of caregiving, and quality of life (QoL). METHODS: This quasi-experimental (pre-and-posttest) design, involved family caregivers of children on admission for cancer treatment in 4 Nigerian tertiary hospitals. Eligible participants received 2 structured, psychoeducational training sessions delivered by a multidisciplinary oncology team, focusing on the management of patients' condition, spiritual care, self-care, and support. RESULTS: Subjects were mainly female (79.5%) and mostly mothers to children undergoing cancer treatment (74.7%). Commonest cancer type was acute lymphoblastic leukemia (23.9%) with evidence of metastatic disease found in 9.6% of children. Significant improvements were observed between pre- and posttest for unmet needs (z = -9.3; p < 0.001), preparedness for caregiving in palliative care (PCPC) (z = -7.0; p < 0.001), and overall QoL (z = -7.3; p < 0.001). A significant reduction in CB was also reported (z = -8.7; p < 0.001). SIGNIFICANCE OF RESULTS: This psychoeducational intervention (PEI) resulted in significant improvements in unmet needs, CB and significant improvements in PCPC. However, a reduction in QoL of the family caregivers was also observed. Findings from this study should encourage the use of well-crafted PEIs, delivered within hospital settings to promote improvements in outcomes for informal caregivers of hospitalized children suffering from cancer, in an African context. Further intervention development is required to better understand intervention components influencing changes in outcomes, while exploring feasibility testing and adaptation to similar settings in Nigeria and within Africa.

Designing for caregiving networks: a case study of primary caregivers of children with medical complexity.

OBJECTIVE: The study aimed to characterize the experiences of primary caregivers of children with medical complexity (CMC) in engaging with other members of the child's caregiving network, thereby informing the design of health information technology (IT) for the caregiving network. Caregiving networks include friends, family, community members, and other trusted individuals who provide resources, information, health, or childcare. MATERIALS AND METHODS: We performed a secondary analysis of two qualitative studies. Primary studies conducted semi-structured interviews (n = 50) with family caregivers of CMC. Interviews were held in the Midwest (n = 30) and the mid-Atlantic region (n = 20). Interviews were transcribed verbatim for thematic analysis. Emergent themes were mapped to implications for the design of future health IT. RESULTS: Thematic analysis identified 8 themes characterizing a wide range of primary caregivers' experiences in constructing, managing, and ensuring high-quality care delivery across the caregiving network. DISCUSSION: Findings evidence a critical need to create flexible and customizable tools designed to support hiring/training processes, coordinating daily care across the caregiving network, communicating changing needs and care updates across the caregiving network, and creating contingency plans for instances where caregivers are unavailable to provide care to the CMC. Informaticists should additionally design accessible platforms that allow primary caregivers to connect with and learn from other caregivers while minimizing exposure to sensitive or emotional content as indicated by the user. CONCLUSION: This article contributes to the design of health IT for CMC caregiving networks by uncovering previously underrecognized needs and experiences of CMC primary caregivers and drawing direct connections to design implications.

Low-Fidelity Prototype of a Sensor-Dependent Interaction Platform: Formative Evaluation With Informal Caregivers of Older Adults With Cognitive Impairment.

BACKGROUND: Unobtrusive sensing technologies developed for monitoring deviant behaviors in older adult care require integration with an interaction platform to facilitate the flow of information between older adults and their caregivers. However, the continuous monitoring capabilities generate a considerable amount of data that must be interpreted, filtered, and personalized before being communicated to the informal caregivers based on their specific care needs and requirements. OBJECTIVE: For the effective implementation of unobtrusive sensing solutions (USSs) in the care of older adults with cognitive impairment, we aimed to explore the expectations and preconditions regarding the implementation of USSs from the perspective of informal caregivers. Subsequently, we designed and evaluated a low-fidelity prototype of an interaction platform for its conceptual workflow and usability, incorporating persuasive system design features based on the needs and requirements of informal caregivers. METHODS: Overall, 6 informal caregivers of older adults with cognitive impairment living alone participated in this qualitative interview study. We explored the expectation and preconditions regarding implementation through open-ended questions and conducted a formative evaluation (usability study with a think-aloud approach) to evaluate the conceptual workflow and used persuasive system design features in the interaction platform. Overall, a combination of inductive and thematic analyses was used to analyze the interviews. RESULTS: The results of this study present both positive and negative outcome expectations regarding the implementation of USSs, highlighting benefits such as objective decision-making and peace of mind and concerns about information overload and the potential substitution of human contact. Strategic information communication agreements between informal and formal caregivers were deemed crucial for the successful implementation of USSs in care. Overall, informal caregivers had a positive experience with the low-fidelity prototype of the interaction platform, particularly valuing the personalization feature. CONCLUSIONS: In conclusion, to achieve successful implementation, a holistic design approach is necessary, and equal consideration should be given to the personalization-privacy paradox to balance users' needs and privacy.

Promoting meaningful activities by occupational therapy in elderly care in Belgium: the ProMOTE intervention.

BACKGROUND: Older people want to age in place. Despite advancing functional limitations and their desire of aging in place, they are not always faithful to therapy that maintains independence and promotes safety. Occupational therapists can facilitate aging in place. Occupational therapy is defined as the therapeutic use of everyday life occupations with persons, groups, or populations for the purpose of enhancing or enabling participation. AIM: To describe the content a high-adherence-to-therapy and evidence-based occupational therapy intervention to optimize functional performance and social participation of home-based physically frail older adults and wellbeing of their informal caregiver, and the research activities undertaken to design this intervention. METHODS: A roadmap was created to develop the occupational therapy intervention. This roadmap is based on the Medical Research Council (MRC) framework and is supplemented with elements of the Intervention Mapping approach. The TIDieR checklist is applied to describe the intervention in detail. A systematic review and two qualitative studies substantiated the content of the intervention scientifically. RESULTS: The application of the first two phases of the MRC framework resulted in the ProMOTE intervention (Promoting Meaningful activities by Occupational Therapy in Elderly). The ProMOTE intervention is a high-adherence-to-therapy occupational therapy intervention that consists of six steps and describes in detail the evidence-based components that are required to obtain an operational intervention for occupational therapy practice. CONCLUSION: This study transparently reflects on the process of a high-quality occupational therapy intervention to optimize the functional performance and social participation of the home-based physically frail older adult and describes the ProMOTE intervention in detail. The ProMOTE intervention contributes to safely aging in place and to maintaining social participation. The designed intervention goes beyond a description of the 'what'. The added value lies in the interweaving of the 'why' and 'how'. By describing the 'how', our study makes the concept of 'therapeutic use-of-self' operational throughout the six steps of the occupational therapy intervention. A further rigorous study of the effect of the ProMOTE intervention on adherence, functional performance and social participation is recommended based to facilitate the implementation of this intervention on a national level in Belgium.

Tools to measure the burden on informal caregivers of cancer patients: A literature review.

OBJECTIVES: (1) To describe existing tools to assess the burden of informal caregivers of people with cancer, (2) to describe how these tools have been validated and (3) to describe the areas of interest of existing assessment tool entries. BACKGROUND: The caregiver burden of informal caregivers of people with cancer greatly affects their lives. There is a wide variety of relevant assessment tools available, but there are no studies to help researchers to select tools. METHODS: A search was conducted using the keywords 'cancer', 'caregiver', 'burden' and 'scale' in Medline (PubMed), CINAHL and EMBASE to include articles that developed or applied tools to assess the burden on informal caregivers of cancer patients. Once eligible tools were identified, we searched their 'primary reference' studies. If the original scale was assessed in a population other than informal caregivers of cancer patients, we again searched for psychometric measures in the population of caregivers of cancer patients. RESULTS: This study retrieved 938 articles on developing or applying the informal caregiver burden instrument for cancer patients, including 42 scales. Internal consistency of the original scales ranged from 0.53 to 0.96. Nineteen scales initially developed to assess caregiver burden for patients with dementia, stroke and other disorders were later used for caregivers of cancer patients, eight of which have not yet been validated. Reclassifying all scale domains of concern revealed that scale assessments focused more on caregivers' physical health, emotional state and caregiving tasks. CONCLUSION: This review identifies many scales for assessing informal caregiver burden in cancer patients and gives scales recommended. However, a portion still needs to be validated. The development of a new scale proposes to be based on a theoretical framework and to consider dimensions for assessing support resources. IMPACT: What problem did the study address?: This paper collates assessment tools on the burden of informal carers of people with cancer. It also provides information on the applicable population, reliability and validity. What were the main findings?: 41 scales could be considered for use, eight of which have not been validated. The scales focus more on assessing caregivers' physical health, emotional state and caregiving tasks, and less on the dimension of support resources. Where and on whom will the research have an impact?: There are implications for informal carers of cancer patients in hospitals or in the community, as well as for relevant researchers. REPORTING METHOD: Retrieved with reference to systematic evaluation. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Songwriting Group Music Therapy to promote psychological adjustment in informal caregivers of elderly people with dependency: a mixed methods study.

Introduction: Informal caregivers of elderly people with dependency (EPD) provide intensive care that can affect their quality of life (QoL). Psychosocial interventions such as music therapy are important to work on their self-care. The aim of this study is to analyze, with a mixed method approach, the experience of participating in a Songwriting Group Music Therapy (SGMT) intervention on informal caregivers of EPD. Methods: A total of 11 groups, with a convenience sample of 61 caregivers, received 10 SGMT sessions. Quantitative information related to QoL variables (anxiety, depression, spirituality, burden, and coping) was collected before and after the intervention and at 3 months of follow-up. Regarding qualitative data, an open-ended question about the experience of participating was asked. Results: Significant changes were shown, sustained over time, in trait anxiety and depression and subscales including inner peace, social functioning, and mental health. Three themes were generated from the thematic analysis, including that SGMT participation can enhance personal growth, bring out and enable work on emotions, and promote helpful interpersonal dynamics. Discussion: The findings indicate that SGMT is a useful intervention for informal caregivers of EPD, promoting psychological adjustment, enhanced coping, emotional regulation, and social support. This study reinforces the findings with caregivers of other populations, providing new results and highlighting the benefits of SGMT for caregivers of EPD.

Trend in Respite Use by Race Among Caregivers for People Living with Dementia.

BACKGROUND: Respite care provides short-term relief for caregivers. Despite efforts to promote respite use among Black caregivers, little is known if disparities in respite use between Black and White dementia caregivers have decreased over time. We examined a trend nationally to see if more recent efforts may have helped reduce disparities in respite use. METHODS: We used a repeated cross-sectional design, with the data from 2015, 2017, and 2021 of the National Health and Aging Trends Study and National Study of Caregiving. Our study sample included 764 (in 2015), 839 (in 2017) and 521 (in 2021) non-Hispanic White and Black caregivers who provided care to older adults living with dementia, representing weighted 5,157,569 (2015), 5,877,997 (2017), and 4,712,144 (2021) dementia caregivers nationally. We conducted logistic regression models to assess the differences in respite use between White and Black caregivers over time. RESULTS: In 2015, Black dementia caregivers had a respite care use rate 11.6 percentage points (95% CI: -16.9 to -6.4) lower than that of White dementia caregivers. However, both in 2017 and 2021, the difference in the use of respite was not statistically significant, leading to a reduced or no gap in respite use between White and Black dementia caregivers. However, respite use remained low in both groups. CONCLUSIONS: Although the gap in respite use between Black and White dementia caregivers had been gradually narrowed over time, more efforts are needed to encourage more respite use among both groups through targeted efforts to address factors that hinder respite use.

Predictors of Deterioration in Mental Well-Being and Quality of Life among Family Caregivers and Older People with Long-Term Care Needs during the COVID-19 Pandemic.

BACKGROUND: During the COVID-19 pandemic, reduced access to care services and fear of infection prompted families to increase home care for their older relatives with long-term care needs. This had negative effects on both members of the caring dyad, impacting their quality of life (QoL) and mental well-being. This study investigated the factors that influenced the mental well-being and QoL of 239 dyads, before and after the first pandemic wave in Italy. METHODS: Data were collected through a survey on the use of health and social care services and interventions by older care recipients living in the community and their family caregivers. Factors associated with deterioration of mental well-being and QoL in older care recipients (mean age 86.1 years old) and their family caregivers after the pandemic were studied. RESULTS: The importance attached by family caregivers to the skills and training of healthcare professionals was a protective factor against the deterioration in the well-being of older care recipients. Similarly, the importance associated by family caregivers to the help received from healthcare professionals was a protective factor for QoL. Financial hardship of older care recipients was a risk factor for deterioration in caregivers' mental well-being, while support from other family members was a protective factor for QoL. CONCLUSIONS: The presence of attentive healthcare professionals, a supportive family environment, and economic support can reduce the burden on both the caregiver and the older care recipient. These aspects need to be considered in any future emergency situation and when planning care services for community-dwelling older people.

Digital Solutions Available to Be Used by Informal Caregivers, Contributing to Medication Adherence: A Scoping Review.

Medication adherence is essential for managing chronic diseases and achieving optimal health outcomes. However, this process is often challenging, particularly for patients with complex care needs. Informal caregivers play a pivotal role in supporting medication management, but they may face resource limitations and a lack of necessary support. Digital health tools offer a promising avenue to enhance medication adherence by providing reminders, education, and remote monitoring capabilities. This scoping review aimed to identify and evaluate digital solutions available to informal caregivers for improving medication adherence. A systematic search of PubMed and Web of Science was conducted using relevant keywords. Four studies were included in the review, examining a variety of digital tools including mobile apps, SMS messaging, and wearable devices. These tools demonstrated efficacy in improving medication adherence, managing disease symptoms, and enhancing quality of life for patients and caregivers. Digital health interventions hold the potential to revolutionize medication adherence among chronic disease patients. By empowering informal caregivers, these tools can bridge the gaps in medication management and contribute to better health outcomes. Further research is warranted to optimize the design, implementation, and evaluation of digital interventions for medication adherence.