Support roles, carer burden, and decision-making preferences of carers of older adults with cancer.

INTRODUCTION: Older adults with cancer value the perspectives of significant others and their carers regarding decision-making about treatment. Understanding the support provided by carers, and their perspectives on involvement in treatment decision-making, can help us improve our communication with patients and their supports. We aimed to describe the roles, burden, and decision-making preferences of carers of older adults with cancer. MATERIALS AND METHODS: We performed a cross-sectional survey of carers of older adults (≥65y) with cancer at three centres in Sydney, Australia. Type, frequency, and perspectives on providing care were evaluated using Likert scales. Preferred and perceived role in treatment decision-making by modified Control Preferences Scale, and carer burden by Zarit Burden Index (ZBI-12), were evaluated. Preferred role in decision-making and carer burden were compared between groups (culturally and linguistically diverse backgrounds [CALD], sex, and carer age ≥ 65) by chi-squared or t-tests. RESULTS: One-hundred and fourteen returned surveys were included (23 partially completed). Carer characteristics: median age 55y (range 24-90), female (74 %), child (49 %) and spouse (35 %) of the care-recipient. Care-recipient characteristics: median age 75y (range 65-96), receiving anti-cancer treatment (85 %), and CALD background (44 %). Carers were frequently involved in communication and information gathering (45 % -80 %) and supported instrumental activities of daily living (IADLs) (43 % - 81 %) more frequently than basic activities of daily living (ADLs) (2-13 %). Most (91 %) preferred to be present when treatment options were discussed. Their preferred role in treatment decision-making was passive in 66 %, collaborative in 30 %, and active in 4 %, with most (72 %) playing their preferred role. The preferred role was associated with carer age (p = 0.01) and CALD background (p = 0.04), with younger (<65y) carers and those caring for CALD older adults preferring a more passive role. Carer burden was 'low' in 29 %, 'moderate' in 31 %, and 'high' in 39 %, and providing psychological support was rated most challenging. DISCUSSION: Carers of older adults with cancer play varied support roles, particularly in communication and information gathering. Carers prefer to be present for discussions about treatment options, though favour a passive role in treatment decision-making, upholding patient autonomy. Understanding the communication preferences of carers is an important consideration when supporting the patient in deciding treatment options and direction of care.

Adapting a Preparatory Skills-Building Programme for Carers of People With Cancer Through Co-Design: The iCanSupport Project.

INTRODUCTION: Health services rely upon carers to provide care for loved ones with cancer, yet many carers often feel ill-prepared for this role. Despite a multitude of programmes to support carer mental health, programmes that help carers feel better equipped to support a person with cancer are lacking. This study aimed to address this need by adapting an evidence-based intervention to be suitable for carers of people with cancer. METHODS: This study used an exploratory, qualitative design consisting of experienced-based co-design and an in-depth stakeholder engagement strategy. An existing evidence-based programme to promote resilience in the context of providing care was adapted for relevance to carers for people with cancer via two co-design workshops with carers and healthcare professionals (n = 8). The resulting prototype programme was refined based on stakeholder consultations with staff and consumer members of cancer and carer support organisations across Australia (n = 16). Transcripts of the workshops, meetings and written feedback from carers were thematically analysed. RESULTS: Major programme developments were guided by three themes that emerged from the co-design workshops: 'creating value for carers', 'multiple contributors to carer distress' and 'the need for flexible implementation'. Analysis of the stakeholder consultation data showed that the themes of 'diversity in carer journeys' and 'creating impact for carers' were key to further tailoring the programme for applicability to practice. An adapted programme called 'iCanSupport' resulted from the process, with key adaptations being more relevant case study scenarios for carers and greater flexibility in accessing and engaging with the intervention to accommodate a range of carer circumstances. CONCLUSION: Programmes to build skills for becoming a carer for someone with cancer are absent, yet they are desired by carers. Using co-design provided a user-centric approach to adapt an existing evidence-based programme. Programme evaluation is required to determine the effectiveness of the co-designed approach in improving carer preparedness among a range of cohorts. PATIENT OR PUBLIC CONTRIBUTION: Carers and consumers with lived experience and others involved in supporting consumers made valuable contributions to co-designing and refining the programme in addition to providing ongoing guidance in the unfolding analysis and reporting of this research.

Working with carer grief in community palliative care nursing.

BACKGROUND: Community nurses (CN), both generalist and palliative care-specific, are key to supporting the carer with their experience of grief. AIM: To identify the grief-related needs of carers and the capacity of CNs to provide for those needs. METHODS: A convergent parallel mixed-methods study which employed i) a needs questionnaire among carers of palliative care patients who had recently died; ii) a qualitative interview study among carers and iii) a questionnaire among CNs which canvassed their confidence and skills in working with carer grief. FINDINGS: In the carer survey, just one-third of carers reported engagement with CNs regarding prolonged and anticipatory grief. In the CN survey, low confidence and skill regarding supporting carers with their grief was reported. CNs with palliative care training were more confident and knowledgeable than generalist CNs. CONCLUSIONS: Despite offering high ratings for CN compassion and overall quality of support during the dying process, grief support was reported by carers to be missing from their experience of CN care. The role of CNs in providing for the grief-related needs of carers is yet to be established.

Patient and carer feedback and engagement with ECHOMANTRA, a digital guided intervention for anorexia nervosa.

OBJECTIVE: We developed ECHOMANTRA, a digital guided intervention for patients with anorexia nervosa and their carers to provide support during transition from inpatient care to community settings. This study reports on participants' engagement with, and feedback of, ECHOMANTRA. METHOD: Patients and carers (N = 184 dyads) were given access to ECHOMANTRA for 12 months. The intervention included online groups, a workbook and recovery-oriented videoclips. Satisfactory engagement was defined as attendance of a minimum of four online groups by each dyad. Participants received an Intervention Feedback Form to measure frequency of use and provide feedback of the intervention. Those who did not meet the engagement criterion were asked to complete an Obstacles to Engagement Form. RESULTS: 19% of the sample reached the engagement criterion. Seventy-six patients and 60 carers completed the Intervention Feedback Form. Of those, approximately 60% reported using at least a quarter of the workbook and videoclips. Overall, participants found the materials useful and easy to access (median = 3 on a scale 1-5). Obstacles to engagement (35 patients and 14 carers) included lack of time due to caring responsibilities, treatment, work/school commitments. CONCLUSION: A more personalised form of support may be needed to enhance motivation and ability to change following inpatient care.

Physical and Mental Health of Informal Carers from Culturally and Linguistically Diverse (CALD) and Non-CALD Groups in Australia.

INTRODUCTION: Empirical evidence shows that many family carers, especially immigrants, experience considerable health disadvantages and poorer quality of life. Australia has a rapidly increasing multicultural population, officially referred to as Culturally and Linguistically Diverse (CALD) people. This paper explores similarities and differences in the carer profile and physical and mental health of CALD and non-CALD family carers. METHODS: A cross-sectional anonymous survey was conducted of self-reported family carers aged 18 years and older. Identical paper and online survey modes were provided to enable choice. Key variables included demographic and carer profile, diagnosed chronic physical health conditions, and validated scales such as CESD-12 and MOS-SF12, including derivative composite Physical and Mental Component Summary (PCS and MCS, respectively) scores. The sample comprised 649 participants (CALD = 347, non-CALD = 302). The analyses included univariate, bivariate, and multivariable linear regression analyses for three outcome variables: PCS, MCS, and CESD-12. RESULTS: CALD carers were comparatively younger and married, and 54% had university-level education (29% in the gfvnon-CALD group). Women were primary carers in both groups (67.4% versus 72.2%). The weekly care hours were higher for non-CALD carers. Both groups had below population-referenced scores for mean PCS and MCS values. For CESD-12, non-CALD respondents had higher scores (17.5 vs. 11.2, p < 0.022). Regression analyses showed significant differences for demographic, carer, and physical health variables across the three outcome variables. DISCUSSION AND CONCLUSION: Women have a higher domestic workload, which, when combined with high care hours, adversely impacts physical and mental health. The need for improved and culturally aligned care support systems is required.

Interventions delivered by primary or community healthcare professionals to support people living at home with dementia with activities of daily living: a systematic review and narrative synthesis.

BACKGROUND: Most people living with dementia live in their own home supported by family carers. One of the most challenging problems they face is managing toilet-use and continence. Carers have repeatedly asked for better advice from healthcare professionals. The purpose of this systematic review was to inform the development of an intervention to support healthcare professionals to provide existing continence management advice to the carers of people living at home with dementia. It aimed to identify and synthesise lessons from the development and evaluation of interventions, involving primary or community healthcare professionals, to support the provision of management advice aimed at supporting people living at home with dementia and their carers with activities of daily living. Due to a lack of relevant continence or toilet-use interventions, this included, but was not limited to, toileting or continence care. METHODS: Literature (February 2009-November 2022) was searched using five databases: MEDLINE (Ovid); PsycINFO (Ovid); EMBASE (Ovid); Cumulative Index to Nursing and Allied Health Literature (CINAHL) (EBSCO); and Cochrane Central Register of Controlled Trials (CENTRAL). Empirical studies using a variety of methodologies were included and thus the quality of papers appraised using the Mixed-Methods Appraisal Tool. No studies were excluded based on quality. A narrative synthesis was undertaken. RESULTS: Twelve articles reporting on 10 interventions were included. Most comprised the provision of online resources only, although some combined these with online or face-to-face contact with healthcare professionals. A variety of methodologies was utilised including randomised controlled trials. The quality of included studies was variable. Six main themes were identified: mode of delivery; targeted and tailored resources; content, design and navigation; credibility; user involvement in the development and evaluation of information resources; and role of professionals and organisations. CONCLUSIONS: Despite the urgent need to better support people living at home with dementia and their carers, this review highlights the paucity of studies reporting on interventions delivered within primary and community healthcare contexts to provide management advice aimed at supporting this population with activities of daily living. This review has identified important considerations that will potentially aid the development, delivery and evaluation of such interventions. SYSTEMATIC REVIEW REGISTRATION: PROSPERO International Prospective Register of Systematic Reviews CRD42022372456.

Psychological wellbeing among carers of children and adolescents with physical disabilities in North-Eastern Tanzania-a cross-sectional survey study.

Introduction: Caring for physically disabled children, particularly in contexts where resources are often insufficient or absent, exposes primary carers to significant psychological strain. The lack of structured mechanisms to address this psychological burden poses a considerable threat to the wellbeing of both carers and the children with disabilities under their care. However, research on the psychological wellbeing of carers in Tanzania is scarce. This study aimed to evaluate the psychological wellbeing and symptoms of anxiety and depression, along with associated factors, of carers of children, and adolescents with physical disabilities in the Kilimanjaro region. Methods: A cross-sectional survey was conducted from November 2020 to June 2021 in the Kilimanjaro region, involving 212 carers. The Swahili versions of the WHO-5 Wellbeing Index and Hopkins Symptoms Check List-25 were used to assess psychological wellbeing and symptoms of anxiety and depression. Data were analysed using IBM SPSS Statistics V.28. Multivariable linear and binary logistic regression were used to assess the associations. Results: More than four fifths (81%) of the carers were parents, and most of these parents were mothers (92%). Of the 212 carers, more than half (51%) exhibited poor psychological wellbeing, 42% had symptoms of anxiety, and 38% symptoms of depression. Notably, poor psychological wellbeing was significantly associated with symptoms of anxiety and depression. Results of a multivariable regression analysis indicated that extended family support was associated with better psychological wellbeing and lower odds of symptoms of anxiety and depression. A higher estimated monthly income was associated with better psychological wellbeing, and lower odds of symptoms of depression. Access to rehabilitation for the child was associated with improved psychological wellbeing and decreased likelihood of symptoms of anxiety. Conclusion: Many carers of children, and adolescents with physical disabilities in Tanzania are at high risk of having poor psychological wellbeing, and symptoms of anxiety and depression. Support from extended-family networks is crucial in promoting good psychological wellbeing. The government in Tanzania should improve rehabilitation services, especially in disadvantaged rural areas, and integrate mental-health screening for carers in both rehabilitation programmes and primary healthcare.

Autonomy & advocacy in planning for a medical emergency: Adults with a learning disability and family carers' experiences and perceptions of the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) process.

Background: The Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) is designed to facilitate meaningful discussions between healthcare professionals, patients, and their family about preferences for treatment in future medical emergencies. People with a learning disability may face particular barriers in completing health care plans and receiving emergency treatment, however little is known about their preferences towards emergency care treatment planning. This study explores the views of people with a learning disability, and family carers about ReSPECT. Methods: A reference group of 5 people with a learning disability contributed to the design of the workshops and evaluation of outputs. Online, arts-based interactive workshops were held with 2 groups of 6 people with a learning disability to explore how they felt about emergency care treatment planning, and to co-produce materials to support ReSPECT conversations. Carers of people with a learning disability participated in focus groups or interviews. Data from workshops, focus groups and interviews were analysed thematically. Results: Themes were; Getting the Process Right, Lack of trust a barrier to ReSPECT planning, and Person-Centred Care. All groups supported the ReSPECT process feeling that ReSPECT plans could support person-centred care, enhancing the autonomy of a person with a learning disability and supporting the advocacy of carers. However, drawing on their previous experiences of the health care system some expressed doubt that their wishes would be carried out. Suggestions were made for improving the ReSPECT process and used to develop resources to support ReSPECT planning. Conclusions: Emergency care planning and ReSPECT are viewed positively by people with a learning disability and family carers. To ensure this works well for people with a learning disability attention should be given to reasonable, personalised adjustments to support their participation in planning conversations. There is a wider challenge of fostering trust in the health care system.

What are the communication guidelines for people with dementia and their carers on the internet and are they evidence based? A systematic review.

Introduction: Communication difficulties of people with dementia can negatively impact well-being of them and their carers. There are evidence-based and clinically recommended strategies that can be used to support people with dementia which they are more likely to access on websites than via academic literature. We aimed to search the internet for communication advice for people with dementia and their carers, describe the strategies and compare these to the evidence-base.Methods: After a systematic search of websites offering communication advice to people with dementia and their carers, we described the strategies there, used reflexive thematic analysis to identify the rationale for recommended strategies and compared the strategies to the evidence base. We included websites aimed at people with dementia and their carers published by dementia-related health and social care, or third sector organisations. We compared strategies to those in published systematic reviews and practice guidance from UK health and social care agencies.Results: Our review identified 39 eligible websites, containing 164 individual strategies. These were grouped into 26 strategy types, with nine latent themes developed. These were supporting communication strengths, valuing the interaction, prioritising needs, providing emotional safety, working together, adapting communication for the situation, developing carer communication skills, knowing the individual and focusing on broader meaning.Conclusion: Our review highlights the need for flexible approaches to supporting communication for people with dementia which consider the individual's needs and preferences, the context of the interaction, and the priority in that moment. We identify the inherent challenges for carers in trying to interpret advice for their own needs.

Exploring the perceptions of New Zealand Chinese dementia carers on the adapted world health organization iSupport manual: A qualitative study.

BACKGROUND: Across countries, most dementia carers report a lack of adequate information about dementia and local services. To address this issue, the World Health Organization developed the iSupport programme to provide information and support to dementia carers. The iSupport online programme was found to be feasible and acceptable by dementia carers. However, the potential of using the iSupport manual (iSupport) specifically for Chinese dementia carers in New Zealand remains unknown. OBJECTIVE: This study aimed to (1) identify refinements to adapt iSupport by eliciting the perspectives of Chinese dementia carers; and (2) explore the educational needs of Chinese dementia carers, which can inform the development of support programmes tailored to their specific requirements. DESIGN: This was a qualitative descriptive study using semistructured interviews. The data were analysed using thematic analysis. RESULTS: Twelve Chinese dementia carers were interviewed (mean age 58.0 years, 100% female, and mean caring experience of 2.2 years). Emerging themes were identified within three domains: (1) usefulness, (2) complexities of using iSupport, and (3) suggestions for improvement. CONCLUSIONS: The findings suggest that Chinese dementia carers generally found iSupport to be valuable, providing valuable insights into how to tailor and enhance support for this population. However, further research is required to empirically validate the effectiveness of the adapted iSupport for Chinese dementia carers in New Zealand. These findings have implications for the development of future interventions that can more effectively address the specific needs of Chinese dementia carers.

Influence of caregiver-nurse communication on quality of life and clinical outcomes of children with long-term ventilator dependence.

AIM: To determine the effects of communication behaviors observed during discussion of home management of hospitalized children with long-term ventilator dependence on post-discharge quality of life and clinical outcomes. DESIGN: A descriptive, quantitative study of family caregiver and nurse communication. METHODS: Conversations between 100 family caregivers and 48 nurses were recorded and transcribed. Transcripts were coded for key communication behaviors: ask, listen, explain, negotiate roles, verify understanding and advocate. Quality of life measures and clinical outcomes were collected one week and one month post-discharge. Analysis included descriptive statistics and linear mixed-effects models. RESULTS: Each communication behavior was associated with quality of life outcomes. Family caregivers demonstrated more listening behaviors when there was poorer child quality of life (ß = -1.52) and advocated more with increased child fatigue (ß = 1.55). When family caregivers negotiated care roles with nurses, there was less child anxiety and more mobility (ß = -2.15, ß = -1.54). Less child fatigue and more mobility were evidenced when nurses advocated (ß = -1.49, ß = 0.92). Better child quality of life was predicted by nurses asking family caregivers more questions (ß = 1.03), while poorer child quality of life was evident when nurses negotiated care roles (ß = -2.22). Overall, when family caregivers demonstrated a need or willingness to negotiate care roles with nurses, more respiratory infections were found post-discharge at one week (ß = 1.23) and one month (ß = 1.59). CONCLUSION: Family caregiver and nurse communication can impact outcomes for hospitalized children with long-term ventilator dependence. Family caregivers advocate and negotiate roles to ensure support and appropriate care for themselves and their child.

Pulmonary rehabilitation and family/friend caregivers: the hidden reciprocal relationship improving outcomes in chronic respiratory diseases.

INTRODUCTION: The experiences and needs of living with chronic respiratory diseases (CRD) can be overwhelming. Individuals often rely on informal care for daily assistance and having a family/friend caregiver has been associated with better health outcomes. Nevertheless, family/friend caregivers frequently feel alone and unsupported. Pulmonary rehabilitation (PR) leads to multidimensional benefits across CRD and individuals have suggested improvements for PR. Family/friend caregivers highly support PR in practical and psychosocial ways and have identified this intervention as an opportunity to be supported. This reciprocal relationship between PR and the family/friend caregivers has been scarcely explored and its importance for the management of CRD is poorly understood. AREAS COVERED: This perspective synthesizes the experiences and needs of living with CRD from the perspective of people with CRD and their family/friend caregivers; and proposes a vision of a reciprocal/symbiotic relationship, through PR, for optimizing care for people with CRD and their caregivers. EXPERT OPINION: A deeper understanding/recognition of the extensiveness and somewhat overlap of the experiences and unmet needs of individuals with CRD and their family/friend caregivers; and of the reciprocal/symbiotic relationship between PR and the family/friend caregivers might be important to optimizing management and, ultimately, individuals and caregivers' outcomes in CRD.

Rapid review: Ten ways to improve support for minoritised informal adult carers at local government policy level to redress inequality.

Objective: To rapidly identify and summarise evidence on key factors that affect access to support for minoritised informal adult carers which could be addressed at the level of local government policy-making. Study design: Rapid evidence review. Methods: A rapid umbrella review was undertaken of systematic reviews of qualitative, quantitative and/or mixed method studies. Systematic reviews were identified through database searches (Medline, Cochrane, Proquest), key author searching, referrals by experts (n = 2) of key reviews, and citation and reference checking of identified reviews in September-October 2023. Systematic review evidence was supplemented with grey literature identified by practitioners (n = 2) as locally-relevant. Data was extracted directly into a table and findings synthesised narratively by theme. Results: Many factors were identified as affecting access to support for minoritised unpaid adult carers, including: inattention to socio-cultural diversity; issues of representation, racism and discrimination; and socio-economic inequality. Factors were themed around ten areas for local action, including: the importance of recognising intersectional disadvantage and diversity; ensuring support is socio-culturally appropriate; paying attention to gendered hierarchies in service design; identifying and 'designing out' racism and discrimination; addressing exclusions that minoritised carers with additional communication needs face; mitigating socio-economic inequality; and taking a 'whole system' approach that improves integration, routine data collection and support service evaluation. Conclusions: We identified ten potential ways in which inequalities in support for minoritised unpaid adult carers could be addressed locally. Although the existing evidence base is limited, these ten areas could usefully be targeted for further investigation in research and within local policy development.

Carers in post-stroke aphasia: a scoping review of interventions and outcomes beyond communication partner training.

PURPOSE: Carers of people with aphasia face unique challenges. Research has demonstrated that these carers have a higher burden of care and more negative stroke-related outcomes in comparison to carers of stroke survivors without aphasia. The aim of this scoping review was to map the range of interventions for carers other than communication partner training and to examine their outcomes. MATERIALS AND METHODS: We conducted a scoping review on this topic. RESULTS: Twenty studies were included. Most studies were case series with four randomised control trials. Both quantitative and qualitative approaches were used. Most studies occurred during the long-term phase of care. Two interventions had only carers as participants. Interventions were comprised of different combinations of intervention components including psychoeducation, skill-building, and support. There was high variability on who led the interventions, the format, and the dose/schedule. Twenty-eight different outcome measures for carers and dyads were used across various domains with overall positive outcomes post-intervention. CONCLUSIONS: This review uncovered a wide range of formats, dosages, and outcome measures in interventions for carers. Encouragingly, the majority of these interventions included psychoeducation, skill-building, and support components. While most studies were case series, there are promising interventions that have the potential to enhance carer wellbeing.

Carer targeted interventions play an important role in reducing carer burden and increasing psychological wellbeing for carers of people with aphasia post-stroke.A tailored intervention for carers of people with aphasia should include components of psychoeducation, skill-building, and support to meet their needs across the continuum of care.Recognising carers as clients has the potential to improve healthcare outcomes for the carer and the person with aphasia.

Supporting Carers: Study Protocol of a Meta-Review of Psychosocial Interventions for Carers of People With Cancer.

BACKGROUND: While there is a clear need for psychosocial interventions that promote the well-being of carers of patients with cancer, the corresponding evidence base is disparate, complex, and difficult for end users to navigate and interpret. Carers remain undersupported with a lack of dedicated, effective, evidence-based programs. We will conduct a meta-review to synthesize this evidence and determine the state of science in this field. OBJECTIVE: This study aims to address the question, "what psychosocial interventions are available to promote the well-being of carers for people with cancer?" METHODS: A meta-review will synthesize the relevant reviews of psychosocial interventions that have been developed and evaluated with carers for people with cancer. A total of 4 electronic databases (PsycInfo, MEDLINE, CINAHL, and Cochrane Database of Systematic Reviews) will be searched for reviews published between January 2013 and December 2023. A team-based approach will be taken for screening and assessment of the returned records against the eligibility criteria to determine inclusion. Included reviews will be critically appraised using the Joanna Briggs Institute Critical Appraisal Checklist for Systematic Reviews and Research Syntheses. Relevant data on study characteristics, carer and patient populations, intervention details, and psychosocial outcomes will be extracted, synthesized, and the findings will be presented in a narrative format. RESULTS: It is anticipated that the study will be completed by October 2024. CONCLUSIONS: Ensuring that carers have access to evidence-based programs that promote their well-being as they care for loved ones is critical. This meta-review will contribute to program development and translation efforts by providing a clear picture of the intervention evidence base of carers of patients with cancer and identifying notable strengths, weaknesses, and gaps across the literature. The findings are anticipated to offer future directions to advance research in the field. TRIAL REGISTRATION: PROSPERO (CRD42023403219); https://tinyurl.com/4tnzv49s. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/56403.

A nurse-led intervention for carers of people with high-grade glioma: A case series of carers reporting high distress.

Background: Carers play an important role in supporting patients diagnosed with high-grade glioma (HGG). However, this experience is frequently distressing and many carers require support. Objectives: To describe unmet needs of highly distressed carers of people with HGG and recommendations and referrals made by a nurse to support them within the Care-IS trial. Methods: Descriptive case series. Carers of people with HGG in the Care-IS trial reporting severe anxiety and/or depression at baseline and/or 4 months and high distress at baseline (during chemoradiotherapy) and at 4 months were included. Carers completed the Partner and Caregiver Supportive Care Needs Scale and Brain Tumor Specific Unmet Needs Survey for carers at baseline, 2, 4, 6, and 12 months. Monthly nurse telephone assessments documented carers' needs, recommendations, and referrals made. Data are reported descriptively. Results: Four highly distressed carers were identified (N = 98). Each reported a moderate-high need at ≥1 timepoint for: financial support and/or travel insurance; making life decisions in uncertainty; information about cancer prognosis/likely outcome; and coping with unexpected treatment outcomes. Specific brain tumor unmet needs were: adjusting to changes in personality, mental and thinking abilities, and accessing government assistance. Nurses provided information about treatment, side effects, and practical support. Recommendations for clinical care and referrals to community-based services, and medical specialists were offered. Conclusions: Highly distressed carers have diverse support needs in many domains, which can change over time. Nurses were critical in identifying carers' needs, providing support, and making referrals. Carers' distress and needs require ongoing screening and management.

Interventions to support the mental health of family carers of children with brain injury in low and middle income countries: a scoping review.

Aim: To review the international evidence base on interventions to support the mental health of family carers of children with brain injuries in low and middle income countries (LMIC). Methods: Searches were conducted with five electronic databases (Pubmed, Web of Science, Embase, PsycINFO, CINAHL) using search terms related to "family carers", "brain injury", "children" and "low and middle income countries". Studies were independently screened using predetermined eligibility criteria by two authors. Data were extracted from included studies using standardised data extraction and quality appraisal tools. These data were then subjected to narrative synthesis. The Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines were used to govern the review process. Findings: One study met our inclusion criteria and described an acquired brain injury called nodding syndrome which occurs in Sub-Saharan Africa. The study was conducted in Ghana and provided group-based psychotherapy to carers and their children. As such we found no study which sought to solely support the mental health of family carers. Conclusions: There has been a lack of focus in the literature on the mental health of family carers of children with brain injuries in LMIC. Considering the vital importance of caregivers in supporting their children it is imperative that service providers and researchers devise programmes to better meet their needs. The mental health of family carers should be better supported to improve their overall wellbeing, which will in turn improve the wellbeing of their children.

Experiences and Needs of Carers of Patients With Head and Neck Cancer: A Systematic Review.

PURPOSE: The needs of head and neck cancer (HNC) carers tends to be poorly addressed as most support systems are directed towards patients. This systematic review synthesises the existing qualitative evidence from carers for adult HNC patients to explore their experiences and needs as a basis to inform the initial development of an item prompt list for HNC carers for use in routine clinical practice. METHODS: Seven electronic databases were searched from their inception until November 2022, supplemented by citation chaining and snowballing. Primary qualitative or mixed-methods studies reporting the experiences of carers for HNC patients, elicited using interviews, were included. Screening and selection, data extraction and quality assessment (Critical Appraisal Skills Programme Checklist) were independently conducted by two researchers. Data were analysed using inductive thematic synthesis and confidence evaluated using GRADE CERQual. RESULTS: Thirty studies met the inclusion criteria. Two overarching themes and nine subthemes emerged: (i) the experiences of loss associated with being a carer (loss of: role and everyday routine, certainty leading to emotional distress, security as fear of recurrence prevailed, finances, intimacy and togetherness, enjoyment from social activities); and (ii) factors promoting coping and adjustment to role of carer (information, supportive mechanisms, personal attributes). CONCLUSION: New insight into the experiences of HNC carers provides the basis for item generation of a HNC carer prompt tool. IMPLICATIONS FOR CANCER SURVIVORS: With such a range of potential unmet concerns, the development of a prompt list should help to elicit these and provide additional means to targeted support.

Content Validation and Pilot Testing of the Promoting Active Lifestyle Among Children With Disability Questionnaire in Filipino and English.

BACKGROUND: Primary carers, school teachers, and administrators are key influencers in promoting active lifestyle among children with disabilities (CWD). Guided by the Capability, Opportunity, Motivation, Behavior Model, the Promoting Active Lifestyle among CWD (PALS) Questionnaire aims to determine these influencers' perceptions, capabilities, opportunities, and motivations in active healthy lifestyle promotion. This study evaluated the content validity and feasibility of the PALS Questionnaire in Filipino and English. METHODS: Six experts rated the relevance of the items in the Filipino and English versions of the PALS Questionnaire. Item and scale content validity indices and agreement among raters (modified kappa k*) were computed. The questionnaires were revised and pilot tested among 11 participants comprising primary carers, and special education teachers and administrators using 3 methods of administration: online survey, phone interview, and pen-and-paper survey. RESULTS: Scale-level content validity index indicated excellent content validity (0.96-0.97). Item-level content validity index ranged between 0.67 and 1.00. Interrater agreement on the relevance of all items was excellent (k* = .82-1.00), except for the item on teaching assistants (k* = .56). Most participants found the items easy to understand. The average time needed to complete a questionnaire was 30 minutes. The online version of the questionnaire was identified as the most feasible mode of administration. CONCLUSION: The PALS Questionnaire is a useful instrument for understanding Filipino primary carers' and educators' perceptions on promoting CWD's active healthy lifestyle. Information from the PALS Questionnaire could inform initiatives toward better CWD health and quality of life.