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.

Facilitating Family Carer Dementia Education: We All Need to Learn.

BACKGROUND/OBJECTIVES: The importance of family carer dementia education is highlighted in research, practice guidance, and policy. Less attention is paid to how facilitators learn and prepare for their role. This research aimed to explore and describe facilitator learning experiences within a bespoke Scottish Carers' Academy designed around a theory-guided approach called Care Empathia. A healthcare and university partnership ensured integration with services and the fusion of dementia higher education know-how with clinical practice expertise. METHODS: Nineteen facilitator questionnaires were completed from two Carer Academy hubs; thirteen participated in online focus groups. RESULTS: The questionnaire findings highlighted the learning gained from being a facilitator, observing expert facilitators in action, and listening to the testimonies of family carers. The framework analysis of the focus group data identified six themes, including safe learning approaches, the art of facilitation, emotional work, team learning, and leadership. These findings highlight the importance of facilitator preparation and the advantages of co-delivery models that combine clinical and practice education expertise. CONCLUSION: Facilitators need to understand how to walk the talk of theory-guided educational models, be open to reciprocity in learning, and be prepared for the emotional work of delivering trauma-informed practical dementia care education to family carers.

Cultural adaptations of the WHO iSupport for dementia: A scoping review.

INTRODUCTION: The World Health Organisation (WHO) has developed iSupport for Dementia, a self-paced online training programme for caregivers of people with dementia which is adaptable to different cultural contexts. This scoping review aims to understand the iSupport adaptation process in different countries and provide recommendations for future adaptations. METHODS: A systematic search was done in electronic databases such as Pubmed, MEDLINE, APA PsycINFO, and EMBASE to obtain relevant publications up to 18 February 2024. Only full-text publications describing iSupport cultural adaptation process were included. The publications obtained were reviewed using the Cultural Adaptation Process framework. RESULTS: Thirteen publications from ten studies were eligible for inclusion. Based on the Cultural Adaptation Process framework, the steps undertaken in the studies were grouped into: (i) setting the stage, (ii) initial adaptation, and (iii) adaptation iterations. The three significant players in this process are the intervention developer (researchers), the cultural adaptation specialist (researchers, caregivers, and dementia care professionals), and the target community (caregivers). In the publications reviewed, cultural adaptation was mostly undertaken using a co-design process between researchers, caregivers, and dementia care professionals deciding on necessary modifications. CONCLUSION: iSupport for Dementia is a versatile programme to support caregivers and is readily available for adaptation to different cultural settings. It is essential to engage caregivers early in co-designing its cultural adaptations to ensure their needs can be met by this online tool.

Including carer health-related quality of life in NICE health technology assessments in the United Kingdom.

The impact of health technologies may extend beyond the patient and affect the health of people in their network, like their informal carers. The National Institute for Health and Care Excellence (NICE) methods guide explicitly allows the inclusion of health-related quality of life (HRQoL) effects on carers in economic evaluations when these effects are substantial, but the proportion of NICE appraisals that includes carer HRQoL remains small. This paper discusses when inclusion of carer HRQoL is justified, how inclusion can be substantiated, and how carer HRQoL can be measured and included in health economic models. Inclusion of HRQoL in economic evaluations can best be substantiated by data collected in (carers for) patients eligible for receiving the intervention. To facilitate combining patient and carer utilities on the benefit side of economic evaluations, using EQ-5D to measure impacts on carers seems the most successful strategy in the UK context. Alternatives to primary data collection of EQ-5D include vignette studies, using existing values, and mapping algorithms. Carer HRQoL was most often incorporated in economic models in NICE appraisals by employing (dis)utilities as a function of the patient's health state or disease severity. For consistency and comparability, economic evaluations including carer HRQoL should present analyses with and without carer HRQoL.

Internet-Based Supportive Interventions for Family Caregivers of People With Dementia: Randomized Controlled Trial.

Background: As dementia progresses, patients exhibit various psychological and behavioral symptoms, imposing a significant burden on families and society, including behavioral and psychological symptoms of dementia. However, caregivers lack professional care knowledge and skills, making it difficult for them to effectively cope with the diverse challenges of caregiving. Therefore, it is necessary to provide caregivers with professional knowledge and skills guidance. Objective: This study aimed to analyze the impact of internet-based training on behavioral and psychological symptoms of dementia in patients, and explore how this training model affects the caregiving abilities and caregiving burden of the family caregivers of patients with dementia. Methods: Using a consecutive enrollment method, the Department of Geriatrics at Zhejiang Hospital (Zhejiang, China) recruited 72 informal caregivers of patients with dementia. These caregivers were randomly divided into an intervention group and a control group, with 36 participants in each group. The intervention group underwent caregiver skill training via a web-based platform, whereas the control group initially received face-to-face follow-up guidance and was subsequently offered web-based training after 6 months. To assess the effectiveness of the intervention program, we used the Neuropsychiatric Inventory Questionnaire (NPI-Q), the Chinese version of the Zarit Burden Interview (CZBI), and the Sense of Competence in Dementia Care Staff Scale (SCIDS) for evaluations conducted before the intervention, 3 months after the intervention, and 6 months after the intervention. Results: Between July 2019 and December 2020, a total of 66 patients successfully completed the intervention and follow-up. After 6 months of intervention, the NPI-Q score of the intervention group was 3.18 (SD 3.81), the CZBI score was 10.97 (SD 5.43), and the SCIDS score was 71.88 (SD 4.78). The NPI-Q score of the control group was 8.09 (SD 8.52), the CZBI score was 30.30 (SD 13.05), and the SCIDS score was 50.12 (SD 9.10). There were statistically significant differences in NPI-Q (P=.004), CZBI (P<.001), and SCIDS scores (P<.001) between the intervention group and the control group. Repeated measures analysis of variance showed that compared with before the intervention, there were statistically significant differences in CZBI (P<.001) and SCIDS (P<.001) scores 3 months after the intervention, while the difference in NPI-Q (P=.11) scores was not significant. The total scores of NPI-Q (P<.001), CZBI (P<.001), and SCIDS (P<.001) were significantly improved 6 months after the intervention. In addition, the results of the covariance analysis showed that after excluding the time effect, the web-based training intervention significantly reduced the NPI-Q score (-2.79, 95% CI -4.38 to -1.19; P<.001) of patients with dementia and the CZBI score (-13.52, 95% CI -15.87 to -11.16; P<.001) of caregivers, while increasing the SCIDS score (12.24, 95% CI 9.02-15.47; P<.001). Conclusions: Internet-based training could significantly reduce the level of behavioral symptoms in older patients with dementia and alleviate the burden on caregivers, enhancing their caregiving abilities. Our results confirmed the effectiveness and feasibility of web-based training, which was of great significance in providing caregiving knowledge training for informal caregivers of persons with dementia.

Association Between Cancer Screening Patterns and Carer Literacy in Individuals With Cognitive Decline: An Observational Study.

OBJECTIVE: The incidence rates of dementia, mild cognitive impairment, and cancer increase with age, posing challenges to affected individuals and their families. However, there are currently no clear cancer screening guidelines for individuals with cognitive impairment. This study analyzed the impact of carer health literacy on screening behaviors in this population. METHODS: We conducted a postal follow-up survey, associated with the National Center for Geriatrics and Gerontology-Life STORIES of People with Dementia, that targeted primary carers to assess their reports regarding patient attendance at regular cancer screenings recommended by the Japanese Ministry of Health, Labor and Welfare, over the preceding 2 years. Screening rates were compared between the memory clinic cohort and the national average, and the influence of carer health literacy level on screening was analyzed. RESULTS: Among the 826 total individuals analyzed, the memory clinic cohort exhibited lower breast cancer screening rates, at 11% among female patients aged 65-74 years versus the national average of 32%. Higher health literacy among carers was significantly associated with increased screening. For female patients, carers with high levels of communicative health literacy were more likely to ensure that patients attended screenings for gastric (adjusted odds ratio [AOR], 1.77; 95% confidence interval [CI], 1.03-3.04), colorectal (AOR, 1.70, 95% CI 1.08-2.70), and breast cancers (AOR, 3.08; 95% CI, 1.40-6.76). Among the male patients, high communicative health literacy was associated with increased lung cancer screening attendance (AOR, 1.82; 95% CI, 1.11-2.99). CONCLUSIONS: Our research highlights a notable gap in cancer screening attendance between individuals with cognitive impairment and the general population, potentially arising from the intricate nature of screening procedures and the extensive burden on carers. More informed decisions and increased screening rates can be achieved through patient-centric communication strategies that accommodate the cognitive abilities of patients, ensuring the comprehensibility and accessibility of health-related information.

Young Adult Caregivers and Subjective Well-being in Japan: The Results From the Survey on Satisfaction and Quality of Life.

Informal caregiving can impair caregivers' subjective well-being. However, this issue has been overlooked among young adults. We examined the association between informal caregiving and subjective well-being among young adults in Japan. This cross-sectional study included 3496 individuals aged 18 to 29 years who participated in the Survey on Satisfaction and Quality of Life, a nationwide online survey by the Cabinet Office of Japan, between 2019 and 2020. Three aspects of subjective well-being were evaluated: life satisfaction, social relationship satisfaction, and health status satisfaction. Participants were divided into three groups based on their engagement in caregiving: "non-caregiver," "potential caregiver" (having a family member who needs care but the participants were not engaged in caregiving), and "caregiver." Consequently, 283 (8.1%) participants were potential caregivers and 53 (1.5%) were caregivers. Multivariable linear regression analysis revealed that compared with non-caregivers, caregivers exhibited significantly lower satisfaction with social relationships and health status, but not life satisfaction. These findings suggest psychosocial disadvantages for young adult caregivers, highlighting the importance of support for them.

What individual needs do family caregivers have in palliative home care and how are they supported? A qualitative study of a supportive intervention.

PURPOSE: Family caregivers (FCGs) play a pivotal role in supporting patients in palliative care at home. Person-centred support is crucial to prevent negative outcomes; therefore, evidence-based approaches such as the Carer Support Needs Assessment Tool Intervention (CSNAT-I) are promising. To understand more about the delivery of the intervention, the study focuses on documentation of CSNAT-I in practice in Austria to identify which support needs were discussed with the FCGs and the types of support delivered to meet these needs. METHODS: A retrospective analysis of electronic records was conducted, focusing on documented entries related to the delivery of CSNAT-I over a 21-month period (Dec 2019 to Aug 2021). Both qualitative and quantitative methods were employed for data analysis. RESULTS: The analysis identified a wide spectrum of FCG support needs, categorised into enabling domains related to caregiving for the patient and direct support needs concerning FCGs' own health and well-being. The most frequently documented support needs included 'having time for oneself in the day' and 'dealing with feelings and worries', highlighting the challenges FCGs face in balancing caregiving responsibilities with personal life. Supportive input encompassed advice and information, counselling, education and training, coordination and arrangement, and signposting and referral. CONCLUSION: The study stresses the importance of addressing both practical and psychosocial aspects of caregiving, utilising a person-centred approach. Nurses provided comprehensive support mostly directly delivered during their contact with FCGs. CSNAT-I demonstrated flexibility, accommodating the diverse needs of FCGs in different situations, and may contribute to a more supportive care environment.

Prescription of Nonpharmacologic Interventions in Memory Clinics: Data from the Clinical Pathway for Alzheimer's Disease in China (CPAD) Study.

OBJECTIVES: Nonpharmacologic interventions are recommended to improve outcomes in dementia. Little is known about their prescription in practice, especially in non-Western populations. We investigated individual- and institution-level characteristics associated with nonpharmacologic interventions prescription in China. DESIGN: A multicenter observational study. SETTING AND PARTICIPANTS: This study used cross-sectional data from 889 community-dwelling outpatients living with dementia aged ≥45 years from a multicenter registry of 28 memory clinics in China. METHODS: Prescription records of nonpharmacologic interventions, carer and clinic characteristics, and reasons for declining interventions were collected. Multilevel logistic regression was used to identify factors associated with the prescription. RESULTS: Nonpharmacologic interventions were prescribed in 323 people (36.3%) with mild cognitive impairment or dementia. Cognitive activities and carer training/support were the most prescribed interventions. Multilevel logistic regression showed that 73% of the variance in prescription was attributed to institutional characteristics of the memory clinic. Greater caregiving gain [odds ratio (OR), 1.05; 95% CI, 1.02-1.09], lower burden (OR, 0.97; 95% CI, 0.95-1.00), worse carer-perceived dyad relationship (OR, 0.83; 95% CI, 0.70-0.99), and family history of dementia (OR, 2.08; 95% CI, 1.19-3.65) were individual-level factors associated with prescription. Among 440 people considered having a need but received no prescription, declined by user/carer was the main reason for not prescribing (70.7%). Skepticism about effectiveness by physicians/carers and carers being unable or lacking resources to use the interventions were the common reasons given. CONCLUSIONS AND IMPLICATIONS: A relatively low prescription rate of nonpharmacologic interventions is related to both individual- and institution-level factors. Carer support and education, instrumental support, and prescription guidelines across specialties and sites are possible strategies to improve access to nonpharmacologic interventions in dementia care.

Unpaid Caring and Health-Related Quality of Life: Longitudinal Analysis of Understanding Society (the UK Household Longitudinal Survey).

OBJECTIVES: Decision models for economic evaluation are increasingly including health-related quality of life (HRQoL) for informal/unpaid carers, but these estimates often come from poor quality data and typically rely on cross-sectional analysis. We aimed to identify within-person effects using longitudinal analysis of 13 waves of Understanding Society (the UK Household Longitudinal Survey). METHODS: We analyzed data for coresident carer and care-recipient dyads, where the carer reported "looking after or giving special help to" the care recipient in any of the 13 waves. We used fixed-effects models to study the effects of caring for the care recipient (the "caregiving" effect) using volume of care (hours per week) and continuous duration of caregiving (years) and caring about the care recipient (the "family" effect) using the care recipient's HRQoL on the carer's HRQoL. HRQoL was measured using the Short Form 6 Dimension, calculated from the Short Form 12. RESULTS: We found consistent evidence for the family effect: improving care recipient's HRQoL by 0.1 would improve carer's HRQoL by approximately 0.012. We also consistently found evidence of a small but statistically significant decrement to carer's HRQoL for each additional year of caring. These findings were robust to scenario analyses. Evidence for the relationship between volume of care and carer's HRQoL was less clear. CONCLUSIONS: We propose that our estimates can be used to populate economic models to predict changes in carers' HRQoL over time and allow disutilities to be estimated separately for the family and caregiving effect.

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.

Types and aspects of support that young carers need and value, and barriers and enablers to access: the REBIAS-YC qualitative study.

Background: Many children and young people in England provide support to family members who are disabled, have mental or physical ill health, or misuse drugs or alcohol. Providing care can negatively impact children and young people's education, employment, health and social participation, with associated costs. Support is needed to prevent and reduce these negative impacts. The study sought to provide new knowledge and address prior research gaps regarding how best to support young carers from their perspective and that of the people they care for. Objectives: To address the following questions: What types, components or features of services and other support are seen as helpful, valued, and acceptable to young people who look after someone at home and the people they support? Conversely, what is found to be less or unhelpful? What additional support is perceived as needed? What are the barriers experienced by young and young adult carers in seeking and accessing services for themselves or the person they support? What are the barriers and facilitators for practitioners in providing support and services perceived as valued, helpful and needed by young and young adult carers and the people they support? Design and setting: In-depth qualitative methodology using focus groups, in-depth semistructured interviews and workshops in four localities in England. Participants: One hundred and thirty-three carers aged 9-25 years with a range of caring and life circumstances and sociodemographic characteristics. Seventeen adult care recipients (parents) with a range of physical and/or mental healthcare and support needs. Nineteen practitioners from schools, colleges, young carers organisations, voluntary sector services, mental health services, the National Health Service, adult social care and local authority adult and children's social care commissioners. Results: The types and aspects of support that young carers and their families need, and value when received, include: support that reduces or removes their practical and emotional caring responsibilities; support to mitigate the negative impacts of care and help with other life issues; information and advice about services and wider resources and support; someone trusted available to talk to; greater awareness, recognition and understanding; and choice, flexibility, and co-development of plans and solutions. We found a great deal of unmet need for support, and variation in type and quality of support received, including geographically. Limitations: Potential limitations are that we were not able to engage with, or recruit, young carers from some intended subgroups, meaning some perspectives are missing. Partly because of COVID-19 measures during the study, we mainly recruited through young carers organisations and their family projects, although this was balanced by recruitment through schools and extensive outreach and engagement by the collaborating organisations prior to the project starting. Conclusions: Action is now needed to consistently and sustainably implement the types of support that young carers and the people they care for say they need and value. Future work: Future work should include more research from the perspectives of young carers and the people they care for, especially from particularly marginalised groups; and research to understand what works and how to improve implementation of the support needed and valued. Study registration: This study is registered as Current Controlled Trials ISRCTN13478876. https://doi.org/10.1186/ISRCTN13478876. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR129645) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 36. See the NIHR Funding and Awards website for further award information.

Many children and young people in England provide support to family members who are disabled, have mental or physical ill health, or misuse drugs or alcohol. They are sometimes called young or young adult carers. Providing care often brings satisfaction and a sense of pride but can also have negative effects on young people's lives. The study aimed to find out their views about what would best support them and the people they care for. The study asked two important questions: (1) What are the difficulties faced by young carers and the people they support in seeking, accessing and receiving the right type of support at the right times? (2) What services and support do they find helpful, what support would they like, and what needs would it meet? To answer these questions, we held group discussions (focus groups) and in-depth interviews with 133 young carers with a range of caring and life circumstances and 17 parents receiving help from a young carer. We also held workshops with 19 practitioners who are involved in identifying, supporting and funding services for young carers and their families. They told us that the types of support that they and their families need, and value when received, include: support for the people they care for, so they are providing less practical and emotional care support to help with any negative impacts of providing care and with other life issues information and advice about services, wider resources and support someone trusted to talk to greater awareness, recognition and understanding choice, flexibility and working together to develop plans and solutions We found a great deal of unmet need for support, and variation in the type and quality of support received, including across geographical areas. Action is now needed to consistently and sustainably implement the types of support that young carers and their families say they need and value.

Understanding the impact of distance and disadvantage on lung cancer care and outcomes: a study protocol.

BACKGROUND: Lung cancer is the third most common cancer in the UK and the leading cause of cancer mortality globally. NHS England guidance for optimum lung cancer care recommends management and treatment by a specialist team, with experts concentrated in one place, providing access to specialised diagnostic and treatment facilities. However, the complex and rapidly evolving diagnostic and treatment pathways for lung cancer, together with workforce limitations, make achieving this challenging. This place-based, behavioural science-informed qualitative study aims to explore how person-related characteristics interact with a person's location relative to specialist services to impact their engagement with the optimal lung pathway, and to compare and contrast experiences in rural, coastal, and urban communities. This study also aims to generate translatable evidence to inform the evidence-based design of a patient engagement intervention to improve lung cancer patients' and informal carers' participation in and experience of the lung cancer care pathway. METHODS: A qualitative cross-sectional interview study with people diagnosed with lung cancer < 6 months before recruitment (in receipt of surgery, radical radiotherapy, or living with advanced disease) and their informal carers. Participants will be recruited purposively from Barts Health NHS Trust and United Lincolnshire Hospitals NHS Trusts to ensure a diverse sample across urban and rural settings. Semi-structured interviews will explore factors affecting individuals' capability, opportunity, and motivation to engage with their recommended diagnostic and treatment pathway. A framework approach, informed by the COM-B model, will be used to thematically analyse facilitators and barriers to patient engagement. DISCUSSION: The study aligns with the current policy priority to ensure that people with cancer, no matter where they live, can access the best quality treatments and care. The evidence generated will be used to ensure that lung cancer services are developed to meet the needs of rural, coastal, and urban communities. The findings will inform the development of an intervention to support patient engagement with their recommended lung cancer pathway. PROTOCOL REGISTRATION: The study received NHS Research Ethics Committee (Ref: 23/SC/0255) and NHS Health Research Authority (IRAS ID 328531) approval on 04/08/2023. The study was prospectively registered on Open Science Framework (16/10/2023; https://osf.io/njq48 ).

Socio-demographic factors and mental health trajectories in Australian children and primary carers: Implications for policy and intervention using latent class analysis.

Children's mental health status (MHS) is frequently influenced by their primary carers (PCs), underscoring the significance of monitoring disparities longitudinally. This research investigated the association between socio-demographic clusters and mental health trajectories among children and their PCs over time. Data from waves 6-9c2 of the Longitudinal Study of Australian Children (LSAC) were analyzed using Latent Class Analysis (LCA) to identify four socio-demographic classes among children aged 10-11 years at wave 6. Multinomial logistic regression and predictive marginal analysis explored associations between classes and mental health outcomes. PCs in Class 4 (disadvantaged and separated families with indigenous children) exhibited higher odds of borderline and abnormal MHS compared to Class 1 (prosperous and stable working families) across all waves. However, while MHS of PCs' impacted children consistently, the association with socio-demographic classes was significant only in wave 6. Class 4 children had elevated risks of mental illness compared to Class 1, while Class 3, characterized by educated working mothers, had lower risks. Reducing mental health risks entails addressing socio-economic disparities, supporting stable family structures, and offering tailored interventions like counseling and co-parenting support. Longitudinal monitoring and culturally sensitive approaches are crucial for promoting mental well-being across diverse groups.

Telebehavioral Health for Caregivers of Children With Behavioral Health Needs to Address Caregiver Strain: Cohort Study.

BACKGROUND: Behavioral health conditions among children have worsened over the past decade. Caregivers for children with behavioral health conditions are at risk for two types of caregiver strain: (1) an objective strain, that results directly from the child's condition and (2) subjective strain, that arises from the caregiver's feelings regarding these events. OBJECTIVE: This study aimed to evaluate the impact of a technology-enabled pediatric and family behavioral health service on caregivers' strain among a commercially insured population. We also explore the common symptom clusters of caregiver strain to better understand the caregiver presentation to inform future care planning. METHODS: We examined changes in caregiver strain using the Caregiver Strain Questionnaire-Short Form 7 over the course of their child's web-based behavioral health care between 2021 and 2023 using a pre-post study design. Common caregiver strain symptom clusters were identified using Ward hierarchical agglomerative clustering. RESULTS: The majority of children were White 60.8% (1002/1647), female 53.6% (882/1647), and aged between 5 and 9 years (33.7%, 555/1647). Families fall broadly into 4 groups based on what drives caregiver strain the most, namely those experiencing (1) disrupted family relationships and time interruption, (2) missed work, (3) worried about their child's future and feeling tired and sad, and (4) financial strain. Caregiver strain, which was associated with the child's disease severity (P<.001), decreased significantly in all therapeutic groups. CONCLUSIONS: Web-based family-oriented behavioral health care can improve caregiver strain and reduce family and time disruptions, missed work, and financial strain. Sources of caregiver strain vary and may be overlooked when relying on the conventional scoring of the Caregiver Strain Questionnaire-Short Form 7.

Tips for success, managing the paediatric patient in radiology.

Paediatric radiology is a fascinating and diverse field of medicine with many opportunities to gain expertise in a range of imaging modalities and body areas. Working with children makes imaging both rewarding and challenging, due to the wide range of patient ages encountered and the inherent variation in developmental needs. This requires a patient-focussed approach to manage their anxiety and ensure cooperation of the patient and their carers. Several approaches to dealing with children have been developed including recognising individual needs, empathising with the child and carers, and involving the use of play and a range of age-relevant preparation materials. All of these make the radiology imaging environment and encounter a more effective and collaborative process. The purpose of this manuscript is to present a practical guide to overcoming these challenges, by making the child the focus of their radiological examination.

'I think both of us drew strength from it': qualitative reflections from next of kin following the death and post-mortem brain donation of a loved one with brain cancer.

Background: Glioblastoma, a high-grade primary brain cancer, has a median survival of approximately 14 months. Post-mortem brain donation provides insight to pathogenesis along with spatial and temporal heterogeneity. Post-mortem brain biobanking programs are increasing in number and the need to understand and improve the associated human experience is pressing. This study aims to qualitatively explore the experiences of next of kin (NOK) following the death and brain donation of a loved one and to understand the impact such programs have on NOK carers. Method: We interviewed 29 NOK following the death of their loved one and subsequent brain donation. Thematic analysis was conducted on the transcribed, qualitative interviews. Results: Four themes were identified; (1) Brain donation is a straightforward decision grounded in altruism and pragmatism; (2) Supporting donors is a source of comfort, pride and empowerment; (3) Brain donation can provide meaning for suffering and tragedy and (4) Perceptions of procedures and processes when supporting a loved one to donate. Insights into areas for improvement, for example transporting donors following a home death and the role of the body bag were also noted. Conclusion: Supporting a loved one to donate their brain can be a positive experience providing a source of hope, empowerment and purpose for NOK. Data indicating areas for consideration are broadly relevant for improving the delivery of brain donation programs for future donors and their loved ones.

Understanding how loved ones feel about someone close to them donating their brain to research after their death from brain cancer The act of donating brain tissue after death from brain cancer is a huge gift to medical research and may have an impact on the ability of the scientific community to improve outcomes for people diagnosed with brain cancers. While we understand how valuable these donations are for research, we need more work to understand how these donations impact the people who donate and those who love and support them. This paper explores the experiences of people who have lost someone to brain cancer who then went on to donate their brain tissue after their death. Through the use of interviews, it explores the impact that the donation has on a loved one or next of kin from providing a source of comfort, empowerment, pride or an alternative to 'senseless' suffering and tragedy. It also provides areas that should be considered by people who are facilitating brain donations to ensure that any potential, harm or upset can be minimized.

Barriers and facilitators when implementing midwifery continuity of carer: a narrative analysis of the international literature.

BACKGROUND: Midwifery continuity of carer (MCoC) is a model of care in which the same midwife or small team of midwives supports women throughout pregnancy, birth and the postnatal period. The model has been prioritised by policy makers in a number of high-income countries, but widespread implementation and sustainability has proved challenging. METHODS: In this narrative review and synthesis of the global literature on the implementation and sustainability of midwifery continuity of carer, we identify barriers to, and facilitators of, this model of delivering maternity care. By mapping existing research evidence onto the Consolidated Framework for Implementation Research (CFIR), we identify factors for organisations to consider when planning and implementing midwifery continuity of carer as well as gaps in the current research evidence. RESULTS: Analysing international evidence using the CFIR shows that evidence around midwifery continuity of carer implementation is patchy and fragmented, and that the impetus for change is not critically examined. Existing literature pays insufficient attention to core aspects of the innovation such as the centrality of on call working arrangements and alignment with the professional values of midwifery. There is also limited attention to the political and structural contexts into which midwifery continuity of carer is introduced. CONCLUSIONS: By synthesizing international research evidence with the CFIR, we identify factors for organisations to consider when planning and implementing midwifery continuity of carer. We also call for more systematic and contextual evidence to aid understanding of the implementation or non-implementation of midwifery continuity of carer. Existing evidence should be critically evaluated and used more cautiously in support of claims about the model of care and its implementation, especially when implementation is occurring in different settings and contexts to the research being cited.

Enabling decision-making: what assists people with motor neurone disease when they consider gastrostomy insertion?

PURPOSE: This study explores the views of people living with Motor Neurone Disease (MND) when they consider Percutaneous Endoscopic Gastrostomy (PEG) insertion, to understand their priorities and how their decisions were informed or supported. MATERIALS AND METHODS: The study took place in single multidisciplinary specialised MND clinic in New South Wales, Australia. Nine people with MND (5 male and 4 female; age range 52-73 years; disease duration 6-99 months) who were considering, or had recently undergone PEG insertion, participated. Semi-structured interviews were conducted with participants to examine individual's experience of decision-making about PEG. The data were synthesised and analysed thematically. RESULTS: Three main themes and two sub-themes captured participant views on their decision-making. The first, "What matters most to me," comprised optimising quality of life and maintaining family membership. The second theme explored "Understanding PEG and the clinical pathway." The third theme was "Thoughts on using a decision aid." CONCLUSIONS: This study provides a foundation for future studies examining the longer-term outcomes of accepting, delaying or declining PEG. Insights from this study may be applicable to decision-making for any aspect of MND care where the outcomes or benefits are uncertain.

People living with Motor Neurone Disease (MND) have complex and individual reasons for accepting or declining Percutaneous Endoscopic Gastrostomy (PEG).The quality of communication between people with MND and healthcare providers may be improved by a shared understanding of how people with MND view quality of life and carer burden in their own circumstances.Enhanced communication for informed choice and patient-centred decision-making have potential to reduce decision regret and support care pathways for those who decline PEG.

A retrospective epidemiological study of sarcoptic mange in koalas (Phascolarctos cinereus) using wildlife carer admission records.

Outbreaks of sarcoptic mange are sporadically reported in koala populations across Australia, but disease characteristics (e.g., distribution across the body) remain poorly understood. In an area of Northern Victoria regular cases coming into care suggest mange may have become enzootic, and here we characterise those koala mange admission records. In 18% (n = 10) of mange affected koala reports that had a recorded outcome (n = 55), the animals died before the carers could locate them, and of the remaining 45 koalas that were alive upon carer arrival, 80% (n = 36) had to be euthanised due to severe mange. The number of admissions varied among years (highest observed in 2019), and over 60% of affected koala admissions were male. Male admissions peaked in austral spring and again in late austral summer-autumn (mating and birthing seasons), with female admissions only exhibiting the latter peak (birthing season). Fissures of the epidermis of the front paws occurred in 100% of admitted koalas, with 70% also showing these signs elsewhere on ventral surfaces or limbs. Only male koalas had signs of mange on the chest and face, and only female koalas had signs of mange on their back. Collectively, this study suggests sarcoptic mange can be a severe disease in koalas, and that male koalas may play an important role in seasonal transmission dynamics. We discuss how these findings may help inform intervention strategies.