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AbstractContextPurposeMethods and resultsConclusion and implications\nIMPLICATIONS FOR REHABILITATIONContemporary technologies, such as mainstream and specialised Assistive Technologies (ATs), are seen as effective. However, there is a noticeable gap between technological progress and the ability to customise these technologies to meet the unique needs and characteristics of neurodivergent individuals, particularly those on the Autism Spectrum and people with Intellectual Disability (pwID).The goal of this study is to investigate the present requirements and future priorities acknowledged by specialists in the field regarding the progress of social inclusion for this population, making use of ATs.A qualitative survey involving 24 international experts, and its respective thematic analysis reveals challenges in social inclusion, emphasizing communication and physical accessibility, awareness gaps, and stigma. Concurrently, issues surrounding ATs include limited access, insufficient training, and a lack of awareness and skills, with individuals, and families being inadequately involved.The study proposes strategies for overcoming these challenges, with a focus on accessibility, awareness, skills, family involvement, and customization. Identified research needs encompass scientific development, inclusive approaches, and changes in technological development paradigms.Customization and Accessibility of Assistive Technologies (ATs): The research emphasizes the critical gap between existing ATs and their alignment with the needs of people with Intellectual Disability (pwID) and those on the autism spectrum. This is crucial for rehabilitation since its effectiveness is based on the consideration of individual requirements. In this sense, the present study involves enhancing the adaptability of technologies to support varied communication styles and learning abilities, thereby promoting greater independence and participation in daily activities, also through rehabilitation.Policy and Infrastructure Development: In an innovative manner, the study points out the systemic challenges, including inadequate policies and lack of support infrastructure, that hinder the effective use of ATs. For rehabilitation practices to be impactful, there is a need for policy reform and infrastructure development that prioritizes the provision and integration of ATs into education, employment, and community living. This includes ensuring funding for AT acquisition, creating inclusive educational and work environments, and improving public spaces to accommodate the needs of pwID and on the autism spectrum.Involvement of Individuals and Families in the AT Development Process: The paper highlights the limited involvement of individuals with ID and on the autism spectrum, and their families, in the process of developing and selecting ATs. Therefore, an important implication for rehabilitation is the need to adopt a person-centred approach that actively involves these individuals and their families in decision-making processes and, whenever possible, in co-creation processes. This approach ensures that AT solutions are better suited to the users’ preferences, challenges, and daily life contexts, thereby enhancing the effectiveness of technological aids in supporting social inclusion and autonomy.Adoption of Qualitative, In-Depth Methods in AT Research: The adoption of qualitative research methods in disability and health research significantly contributes to the development of human-centred, context-driven, and personalized technologies and rehabilitation strategies.Customization and Accessibility of Assistive Technologies (ATs): The research emphasizes the critical gap between existing ATs and their alignment with the needs of people with Intellectual Disability (pwID) and those on the autism spectrum. This is crucial for rehabilitation since its effectiveness is based on the consideration of individual requirements. In this sense, the present study involves enhancing the adaptability of technologies to support varied communication styles and learning abilities, thereby promoting greater independence and participation in daily activities, also through rehabilitation.Policy and Infrastructure Development: In an innovative manner, the study points out the systemic challenges, including inadequate policies and lack of support infrastructure, that hinder the effective use of ATs. For rehabilitation practices to be impactful, there is a need for policy reform and infrastructure development that prioritizes the provision and integration of ATs into education, employment, and community living. This includes ensuring funding for AT acquisition, creating inclusive educational and work environments, and improving public spaces to accommodate the needs of pwID and on the autism spectrum.Involvement of Individuals and Families in the AT Development Process: The paper highlights the limited involvement of individuals with ID and on the autism spectrum, and their families, in the process of developing and selecting ATs. Therefore, an important implication for rehabilitation is the need to adopt a person-centred approach that actively involves these individuals and their families in decision-making processes and, whenever possible, in co-creation processes. This approach ensures that AT solutions are better suited to the users’ preferences, challenges, and daily life contexts, thereby enhancing the effectiveness of technological aids in supporting social inclusion and autonomy.Adoption of Qualitative, In-Depth Methods in AT Research: The adoption of qualitative research methods in disability and health research significantly contributes to the development of human-centred, context-driven, and personalized technologies and rehabilitation strategies. [ABSTRACT FROM AUTHOR]

Autism spectrum disorder (ASD) is a heterogeneous condition that affects development and functioning from infancy through adulthood. Efforts to parse the heterogeneity of the autism spectrum through subgroups such as Asperger's and Profound Autism have been controversial, and have consistently struggled with issues of reliability, validity, and interpretability. Nonetheless, methods for successfully identifying clinically meaningful subgroups within autism are needed to ensure that research, interventions, and services address the range of needs experienced by autistic individuals. The purpose of this study was to generate and test whether a simple set of questions, organized in a flowchart, could be used in clinical practice and research to differentiate meaningful subgroups based on individuals' level of functioning. Once generated, subgroups could also be compared to the recently proposed administrative category of Profound Autism and to groupings based on standardized adaptive measures. Ninety‐seven adults with autism or related neurodevelopmental disorders participating in a longstanding longitudinal study, or their caregivers if they could not answer for themselves, completed phone interviews when the participants were ~30 years old. Information from these phone interviews was used to generate vignettes summarizing characteristics and aspects of the daily lives of each participant (e.g., language level, vocational activities, and social relationships). Three expert clinicians then used these vignettes to classify each participant based on their level of support needs. Meaningfully distinct subgroups within the sample were identified which could be reliably distinguished from one another. Implications of such categorizations and future directions are discussed. Lay Summary: Autistic people often have difficulty living independently and need support. The type of support that they need can depend on behaviors they have that are associated with autism. It also can depend on related issues like their cognitive and language skills. We created a set of questions that can help clinicians and researchers begin to characterize different groups based on the amount of support they need, which could help individualize the types of supports autistic people receive. [ABSTRACT FROM AUTHOR]

Background/Objectives: Methodologies for assessing behavior form the foundation of health promotion and disease prevention. Physical activity (PA) and sedentary behavior (SB) assessment methodologies have predominantly been developed for adults without an intellectual disability (ID), raising credibility concerns for adults with ID. The purpose was to synthesize the current state of assessment methodologies for quantifying PA and SB volume in the free-living setting for adults with an ID. Methods: Following PRISMA guidelines, eleven databases were searched through December 2023, yielding 8174 records. Data were extracted in Covidence (v.2.0), obtaining quantified PA and SB volume and assessment methodology characteristics across data collection and analysis, including tool(s) and technique(s) used, preparatory actions taken, instructions provided, and behavioral strategies employed during data collection. Results: Of the 8174 articles screened, 91 met the inclusion criteria. Common metrics included minutes/hours per day/week and steps per day/week. Despite 80% of the studies using objective techniques, substantial variation existed across studies regarding wearable models, sampling frequency and epoch length settings, calibration protocols, wearable placements, and data processing techniques. Limited studies provided instructions that did not exclusively rely on spoken language. Behavioral strategies varied, including self-monitoring, providing assistance or supervision, administering questionnaires verbally, issuing reminders, and offering monetary incentives. Conclusions: This review underscores the need for greater consistency and accessibility in PA and SB assessment methodology for adults with ID. Tailored preparation, instruction, and behavioral strategies may enhance assessment viability and suitability for adults with ID, with or without caregiver or researcher involvement in the free-living setting. [ABSTRACT FROM AUTHOR]

Objective: The aim of this study is to gain insight into the facilitators, barriers, and support needs of Dutch self-employed workers when returning to work (RTW) after sick leave. Methods: Three focus groups were conducted, involving 15 Dutch self-employed workers who were on sick leave due to health problems. The transcripts were analyzed through thematic content analysis. Results: Five main themes regarding barriers, facilitators, and needs of self-employed workers to RTW were identified: autonomy, social support, client management, financial security, and information on sick leave. Having autonomy was considered a facilitator for RTW. However, the participants expressed a need formore financial support, additional guidance from occupational health professionals, and tailored information regarding RTW. Conclusions: The results of this study emphasize a need for optimizing national policy and support for self-employed workers regarding sick leave and RTW. [ABSTRACT FROM AUTHOR]

Background: This study explores the perceptions of supported accommodation staff and their managers of the support needs of residents ageing with intellectual disabilities, and their experiences of adjusting services for this group in the context of individualised funding. Method: Qualitative interviews were conducted with 21 staff working in Australian supported accommodation services. Findings: Four themes emerged. The first captured the staff's limited understanding of ageing and the medicalisation of support needs. The second identified staff practices and adjustments to service provision to facilitate residents' healthy ageing. The third described staff commitment to facilitating ageing residents to age in place, and the fourth identified staff challenges and opportunities in supporting ageing residents in the context of the National Disability Insurance Scheme (NDIS). Conclusions: Findings may inform the development of practice guidelines and training for supported accommodation staff, protocols for intersections between disability, aged care and health sectors, and adequate policy responses to support older residents' healthy ageing. [ABSTRACT FROM AUTHOR]

Abstract Background Hybrid working arrangements that combine remote and office work are on the rise. Although hybrid work has been associated with mental health benefits in employees, challenges in the transformation to hybrid persist particularly in public administration organizations which have been connected to a pronounced culture of presence and inadequate technical infrastructure. Further evidence on the link between hybrid working conditions and employee health is needed. To support the establishment of healthy hybrid working conditions, this study aims to identify employees' job demands, resources and support needs in public administration. Methods Semi-structured interviews were conducted with N = 13 employees who work hybrid in public administration organizations in Northern Germany between February and May 2023. Interviewees were asked about their perceived job demands, resources, and support needs in hybrid work. The data was analyzed in a deductive-inductive approach of qualitative content analysis, primarily supported by the job demands-resources model as a theoretical framework. Results Several job demands, e.g., an increase in work and meetings, and resources such as personal freedom and responsibility, were identified in the context of hybrid work. A multitude of the reported job resources and demands relate to work organization and social relationships. The results disclose discrepancies between participants' experiences of job demands and resources, underlining the subjectivity of employees' perceptions of hybrid working conditions. Interviewees' support needs for hybrid work also varied, encompassing structural-level aspects such as increased acceptance and promotion of hybrid work in the organization as well as behavioral-level aspects, for instance, strategies and self-discipline for boundaries and structure. Conclusions This study provides a first comprehensive overview of the job demands, resources and support needs in hybrid work in public administration. This study builds an important basis for further research to understand the impact of hybrid working conditions on health-related employee outcomes. The identified support needs provide a valuable point of reference for health-promoting hybrid working conditions which public administration employers should begin establishing as early as possible in the ongoing transition to hybrid work.

Extant literature has reported the challenges and stressors caregivers of people with dementia face globally. Local realities and contexts often shape these challenges. For example, in regions of Africa where the prevalence of caregiving is increasing, beliefs about dementia and limited infrastructures create unique challenges for caregivers, potentially restricting caregivers’ capacities. Yet directions for policy, practice, and research are often informed by research conducted in regions outside of Africa or fail to account for local contexts. This scoping review seeks to understand the knowledge base on regional differences and similarities in the experiences of caregivers supporting persons with dementia in the region of Africa. The review will be guided by Arksey and O’Malley’s five-stage- framework. Five databases: Ageline, MEDLINE, Social Science Abstract, Psych-Info, and African-wide information will be searched. Citations from these databases will be subjected to two levels of screening The Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) will describe and document the inclusion and exclusion process. This scoping review will improve our understanding of unique practices and pressures experienced by caregivers of persons with dementia in different localities in Africa. It will also identify support needs and knowledge gaps in the African region.

AbstractAimMethodsResultsConclusions\nIMPLICATIONS FOR REHABILITATIONThe degree to which people with intellectual and visual disabilities can use technology relies on the level of support they receive. However, there is a lack of knowledge about the relationship between the constructs effort expectancy, attitudes, and behavioural intentions of support people (i.e. relatives and healthcare professionals) regarding the use of such technologies for people with intellectual and visual disabilities. The aim of this study was to gain insight into how these constructs are connected and to explore their relationship with support person’s characteristics and the support need levels of people with intellectual and visual disabilities.In total, 186 support people from a Dutch healthcare organisation focusing on people with intellectual and visual disabilities participated in an online questionnaire. We used a regression analysis to explore how the constructs, the characteristics, and the level of support needs were related.Both effort expectancy (β = .35; t(185) = 5.04; p < .001) and attitude (β = .75; t(185) = 15.55; p < .001) of support people were related to the intention to use technologies. The effect of effort expectancy (β = .04; t(177) = .74; p = .462) on the intention to use technologies was mediated through attitude (β = .74; t(177) = 13.28; p < .001). Younger support people scored higher on attitude than older support people.Support people’s effort expectancy and attitude play a significant role in their intention to use technologies when supporting people with intellectual and visual disabilities, with attitude emerging as pivotal factor.A better understanding of the relationship between effort expectancy, attitude, and the intention to use technologies in support people may facilitate the implementation of technologies.The intentions of support people to use technologies is not related to the level of support needs of people with intellectual and visual disabilities.Younger support people have a more positive attitude towards technology for people with support needs compared to older support people.A positive attitude has a strong and positive relationship to a higher behavioural intention. Therefore, when implementing technologies, healthcare organisations should pay special attention to the attitude of support people towards the use of technologies for people with support needs.A better understanding of the relationship between effort expectancy, attitude, and the intention to use technologies in support people may facilitate the implementation of technologies.The intentions of support people to use technologies is not related to the level of support needs of people with intellectual and visual disabilities.Younger support people have a more positive attitude towards technology for people with support needs compared to older support people.A positive attitude has a strong and positive relationship to a higher behavioural intention. Therefore, when implementing technologies, healthcare organisations should pay special attention to the attitude of support people towards the use of technologies for people with support needs. [ABSTRACT FROM AUTHOR]

Objectives: Relatives of patients who died after euthanasia or physician-assisted suicide (EAS) might need (specific) aftercare. We examined if and how physicians provide aftercare to bereaved relatives of patients who died after EAS, and which patient-, physician- and process characteristics are associated with providing aftercare. Methods: A cross-sectional questionnaire study was conducted among 127 physicians (general practitioners, clinical specialists, and elderly care physicians) in the Netherlands. Associations were examined using multivariable logistic regression analyses. Results: Most physicians had had at least one follow-up conversation with bereaved relatives (77.2%). Clinical specialists less often provided aftercare compared to GPs. Also, aftercare was more often provided when the deceased had a cohabiting partner. Topics addressed during aftercare conversations included looking back on practical aspects of the EAS trajectory, the emotional experience of relatives during the EAS trajectory and relatives' current mental wellbeing. A minority of aftercare conversations led to referral to additional care (6.3%). Conclusion: Aftercare conversations with a physician covering a wide-range of topics are likely to be valuable for all bereaved relatives, and not just for "at risk" populations typically targeted by policies and guidelines. [ABSTRACT FROM AUTHOR]

Young-onset dementia (YOD) symptoms often first present in the workplace, resulting in work performance challenges and eventually loss of employment. This study aims to investigate the experiences, work values, and support needs of employees with YOD and their relatives. Semi-structured interviews were conducted to explore the experiences, work values, and support needs of (former) employees with YOD and their relatives. Subsequently, separate focus group discussions were conducted for employees and relatives to review and prioritize interview findings. Inductive thematic analysis was applied to both datasets. A total of 15 interviews (six employees; nine relatives) and four focus group discussions (ten employees; six relatives) were conducted. Six themes emerged, with five revolving around the central theme: desire to work. The other themes represent essential contributing factors, including importance of receiving a YOD diagnosis; knowledge, awareness, and understanding regarding YOD; open communication, joint decision making, and collaboration; work adjustments, involvement, and support; phasing out work and future perspectives. The findings highlight a strong desire to work post-YOD diagnosis, serving as a foundation for developing workplace support tools and guidance. This has the potential to help individuals with YOD preserve their self-confidence and identity while working within their capabilities. [ABSTRACT FROM AUTHOR]

Background: Hybrid working arrangements that combine remote and office work are on the rise. Although hybrid work has been associated with mental health benefits in employees, challenges in the transformation to hybrid persist particularly in public administration organizations which have been connected to a pronounced culture of presence and inadequate technical infrastructure. Further evidence on the link between hybrid working conditions and employee health is needed. To support the establishment of healthy hybrid working conditions, this study aims to identify employees' job demands, resources and support needs in public administration. Methods: Semi-structured interviews were conducted with N = 13 employees who work hybrid in public administration organizations in Northern Germany between February and May 2023. Interviewees were asked about their perceived job demands, resources, and support needs in hybrid work. The data was analyzed in a deductive-inductive approach of qualitative content analysis, primarily supported by the job demands-resources model as a theoretical framework. Results: Several job demands, e.g., an increase in work and meetings, and resources such as personal freedom and responsibility, were identified in the context of hybrid work. A multitude of the reported job resources and demands relate to work organization and social relationships. The results disclose discrepancies between participants' experiences of job demands and resources, underlining the subjectivity of employees' perceptions of hybrid working conditions. Interviewees' support needs for hybrid work also varied, encompassing structural-level aspects such as increased acceptance and promotion of hybrid work in the organization as well as behavioral-level aspects, for instance, strategies and self-discipline for boundaries and structure. Conclusions: This study provides a first comprehensive overview of the job demands, resources and support needs in hybrid work in public administration. This study builds an important basis for further research to understand the impact of hybrid working conditions on health-related employee outcomes. The identified support needs provide a valuable point of reference for health-promoting hybrid working conditions which public administration employers should begin establishing as early as possible in the ongoing transition to hybrid work. [ABSTRACT FROM AUTHOR]

Shy‐withdrawn behaviours place preschoolers at increased risk of experiencing adverse developmental outcomes. Positive teacher‐child relationships play a protective role against these negative socioemotional outcomes. This study aimed to understand, in‐depth, the beliefs, practices and support needs of preschool teachers toward shy‐withdrawn children. Thirty preschool teachers of children aged 3–5 years were interviewed, using a semistructured guide. The thematic analysis revealed that most preschool teachers were aware of the main manifestations, transactional influences and consequences of shy‐withdrawn behaviours, and of the empirically validated strategies that may be useful to modify them. However, a noteworthy proportion of participants reported misconceptions about the intentionality of shy‐withdrawn behaviours, negative emotions and inconsistent or less effective practices. Our findings highlight that strengthening pre‐service and in‐service training and providing coaching to the preschool staff may be helpful to restructure dysfunctional beliefs about shy‐withdrawn behaviours, translate developmental knowledge in evidence‐based classroom practices and enhance professionals' self‐awareness. Highlights: This study explored, in‐depth, the beliefs, practices and support needs of preschool teachers toward shy‐withdrawn children.Most of the 30 interviewed preschool teachers were aware of the main manifestations, transactional influences and consequences of shy‐withdrawn behaviours.Our findings highlight the need to strengthen teachers' training, bridging theoretical knowledge with professional development. [ABSTRACT FROM AUTHOR]

Up to 25% of people with type 2 diabetes (T2D) may binge eat which is almost 10 times as many as in the general population. Binge eating is associated with depression, anxiety, and social isolation. Moreover, binge eating may increase the risk of obesity and high blood glucose levels, both of which can accelerate the onset of complications to diabetes and death in people with T2D. Still, little is known about the experiences, needs, and preferences of people with T2D and binge eating that can inform and develop current and future treatment efforts. The aim of the study was therefore to gain in-depth insights into the experiences and biopsychosocial support needs of women and men with T2D and binge eating. Twenty semi-structured individual interviews (65% with females) were conducted and analyzed according to the methodology of Interpretive Description. Four themes were identified: (a) T2D and binge eating: Feeling trapped in a vicious circle; (b) Unwanted outcasts: Responding to continuous criticism; (c) Biomedical relief: Blaming and adjusting the body; and, (d) Silent struggles: Wanting to cease the secrecy. Pertinent to all themes were the guilt, shame, and worries about developing complications that the participants experienced when binge eating despite having T2D. Although binge eating triggered emotional distress, binge eating was at the same time a way of coping with such distress. Implications for treatment and future research are discussed, including the need to systematically assess and address binge eating in routine T2D care. [ABSTRACT FROM AUTHOR]

Introduction: The efforts of relatives in providing palliative care (PC) at home are important. Relatives take great responsibility, face many challenges and are at increased risk of poor physical and mental health. Support for these relatives is important, but they often do not receive the support they need. When PC is provided at home, the support for relatives before and after a patient's death must be improved. This study aimed to describe relatives' suggestions to improve the support from health professionals (HPs) before and after a patient's death in general PC at home. Methods: This study had a qualitative descriptive design based on the data from open‐ended questions in a survey collected from the Swedish Register of Palliative Care. The respondents were adult relatives involved in general PC at home across Sweden. The textual data were analysed using thematic analysis. Results: The analysis identified four themes: (1) seeking increased access to HPs, (2) needing enhanced information, (3) desiring improved communication and (4) requesting individual support. Conclusions: It is important to understand and address how the support to relatives may be improved to reduce the unmet needs of relatives. The findings of this study offer some concrete suggestions for improvement on ways to support relatives. Further research should focus on tailored support interventions so that HPs can provide optimal support for relatives before and after a patient's death when PC is provided at home. [ABSTRACT FROM AUTHOR]

BackgroundThe perinatal period is a time of increased vulnerability regarding maternal mental health status. Although guidelines and policies have been published for perinatal mental health disorders (PMHDs) screening in China, the knowledge, attitudes, and support needs of nurses and midwives toward implementing mental health screening programs during pregnancy remain unclear. Thus, this study aimed to investigate the knowledge of PMHDs, attitudes and support needs related to implementing mental health screening during pregnancy among obstetrics and gynecology (OB/GYN) nurses and midwives in the central region of China while identifying the related influencing factors.MethodsA cross-sectional survey was conducted in 14 cities in Hubei, China, using convenience sampling from July to October 2023. The Chinese version of the Perinatal Mental Health Knowledge Questionnaire, the Chinese version of the Perinatal Mental Health Attitudes Scale, and the Health Care Facilities Support Needs Scale were used to investigate the PMHDs knowledge, attitudes, and support needs of OB/GYN nurses and midwives, respectively. Data were analyzed using SPSS version 27.0. Descriptive and inferential statistics were performed, with a p-value of

Abstract Background Advancements in genetic testing have led to Usher syndrome now being diagnosed at a much earlier age than in the past, enabling the provision of early intervention and support to children and families. Despite these developments, anecdotal reports suggest there are substantial gaps in the services and supports provided to parents of children with Usher syndrome. The current study investigated the support needs of parents of children with Usher syndrome Type 1 when their child was aged 0 to 5 years. Method Purposive sampling was used, and six semi-structured interviews were conducted with Australian parents of children with Usher syndrome, Type 1. Data was analysed using modified reflexive thematic analysis. Results Four key themes were identified as being central to the support needs of parents of children with Usher syndrome aged 0 to 5 years. (1) Social Needs referred to parents’ need for various sources of social support, (2) Informational Needs described the lack of information parents received regarding Usher syndrome from treating professionals, (3) Practical Needs included supports needed to assist parents in managing the day-to-day tasks of caring for a child with a disability, and (4) Emotional Needs represented the emotional support (both formal and informal) that parents needed to be a positive support to their child. Conclusions Findings provide rich information for relevant support groups, policy makers, individual healthcare professionals, and professional governing bodies regarding the education of stakeholders and the development and implementation of best-practice treatment guidelines.

Gebrezabher Niguse Hailu,1 Muntaha Abdelkader,1 Hailemariam Atsbeha Meles,2 Tesfay Teklu1 1Department of Nursing, Mekelle University, Mekelle, Tigrai Region, Ethiopia; 2Department of Health Informatics, School of Public Health, Mekelle University, Mekelle, Tigrai Region, EthiopiaCorrespondence: Gebrezabher Niguse Hailu, P.O.Box: 231, Tel +251991235149, Email gerigereking12@gmail.comBackground: As the global population ages, the demand for family caregivers is expected to increase, underscoring the necessity to comprehend their support needs and challenges they face. However, caregiving often comes with various challenges and support needs that require attention. This study was aimed to gain an in-depth understanding of the support needs and challenges faced by family caregivers who provide care to their elderly loved ones at home.Methods: The study was conducted in Mekelle City, Ethiopia from December 2022 to October 2023 using a phenomenology study design and purposive sampling technique. A total of twenty-two in-depth interviews were conducted using an open-ended guide. The interviews were transcribed verbatim, entered into ATLAS.ti8 software, translated, and analyzed using a thematic analysis.Results: The study found that family caregivers face communication, financial, medication management, and transportation challenges in caring for elderly relatives at home. It also highlighted several key support needs of family caregivers in the care of elderly relatives at home. These includes financial assistance, training, access to information, and support from healthcare professionals.Limitations: Qualitative research, by its nature, is subjective as it relies on the perceptions and interpretations of the participants. Moreover, in qualitative studies, researchers typically work with a limited number of participants, in qualitative studies, researchers typically work with a limited number of participants, resulting in conclusions that may not reflect the experiences of all family caregivers.Conclusion: This qualitative study underscored the multitude of challenges faced by family caregivers in their role as primary caregivers for elderly relatives. The research also highlighted the pressing need for support systems that would address the physical, emotional, financial, and informational needs of these caregivers.Keywords: family caregivers, older adults, support needs, challenges, home care, qualitative study

Caregivers of children with neurodiverse needs are known to experience challenges and hardship due to the increased needs of the child and the lack of support available. This study aimed to explore the support needs and well-being of caregivers of children with neurodiverse needs in Australia. Sixty-six caregivers participated in an online survey asking questions about support needs. The results highlighted five main themes that caregivers commonly experienced including: barriers to community engagement, impact on close relationships, negative impact on mental health and identity, financial hardship, and identified support needs. Findings identified multiple unmet needs existing amongst caregivers and further emphasises the importance of addressing these needs to improve the quality of life of caregivers of children with neurodiverse needs. [ABSTRACT FROM AUTHOR]

Sexual violence and abuse (SVA) is highly prevalent globally, has devastating and wide-ranging effects on victim-survivors, and demands the provision of accessible specialist support services. In the UK, Rape Crisis England & Wales (RCEW), a voluntary third sector organization, is the main provider of specialist SVA services. Understanding the profile of victim-survivors who are referred to RCEW and their referral outcomes is important for the effective allocation of services. Using administrative data collected by three Rape Crisis Centres in England between April 2016 and March 2020, this study used multinomial regression analysis to examine the determinants of victim-survivors' referral outcomes, controlling for a wide range of potentially confounding variables. The findings demonstrate that support needs, more so than the type of abuse experienced, predicted whether victim-survivors were engaged with services. Particularly, the presence of mental health, substance misuse and social, emotional, and behavioral needs were important for referral outcomes. The referral source also influenced referral outcomes, and there were some differences according to demographic characteristics and socioeconomic factors. The research was co-produced with stakeholders from RCEW, who informed interpretation of these findings. That victim-survivors' engagement with services was determined by their support needs, over and above demographic characteristics or the type of abuse they had experienced, demonstrates the needs-led approach to service provision adopted by RCEW, whereby resources are allocated effectively to those who need them most. [ABSTRACT FROM AUTHOR]

Background: Advancements in genetic testing have led to Usher syndrome now being diagnosed at a much earlier age than in the past, enabling the provision of early intervention and support to children and families. Despite these developments, anecdotal reports suggest there are substantial gaps in the services and supports provided to parents of children with Usher syndrome. The current study investigated the support needs of parents of children with Usher syndrome Type 1 when their child was aged 0 to 5 years. Method: Purposive sampling was used, and six semi-structured interviews were conducted with Australian parents of children with Usher syndrome, Type 1. Data was analysed using modified reflexive thematic analysis. Results: Four key themes were identified as being central to the support needs of parents of children with Usher syndrome aged 0 to 5 years. (1) Social Needs referred to parents' need for various sources of social support, (2) Informational Needs described the lack of information parents received regarding Usher syndrome from treating professionals, (3) Practical Needs included supports needed to assist parents in managing the day-to-day tasks of caring for a child with a disability, and (4) Emotional Needs represented the emotional support (both formal and informal) that parents needed to be a positive support to their child. Conclusions: Findings provide rich information for relevant support groups, policy makers, individual healthcare professionals, and professional governing bodies regarding the education of stakeholders and the development and implementation of best-practice treatment guidelines. [ABSTRACT FROM AUTHOR]

Adulthood autism diagnosis has become increasingly common, but little is known about post-diagnosis support experiences and needs. We interviewed 19 autistic adults and 4 support persons on experiences of formal and informal post-diagnosis support. Reflexive thematic analysis was used to identify themes. Participants reported difficulties accessing suitable formal support, especially regarding education and employment. Informal support was helpful but created challenges in the relationships between autistic adults and support persons. For autistic adults, support from autistic peers fostered belonging and self-acceptance. We also identified complex interactions between adults' post-diagnosis identity development and support experiences as they resolved the dilemma between self-acceptance and a desire to change. Findings have important implications for services working with autistic adults and their families. [ABSTRACT FROM AUTHOR]

Objectives: Relatives of patients who died after euthanasia or physician-assisted suicide (EAS) might need (specific) aftercare. We examined if and how physicians provide aftercare to bereaved relatives of patients who died after EAS, and which patient-, physician- and process characteristics are associated with providing aftercare.Methods: A cross-sectional questionnaire study was conducted among 127 physicians (general practitioners, clinical specialists, and elderly care physicians) in the Netherlands. Associations were examined using multivariable logistic regression analyses.Results: Most physicians had had at least one follow-up conversation with bereaved relatives (77.2%). Clinical specialists less often provided aftercare compared to GPs. Also, aftercare was more often provided when the deceased had a cohabiting partner. Topics addressed during aftercare conversations included looking back on practical aspects of the EAS trajectory, the emotional experience of relatives during the EAS trajectory and relatives’ current mental wellbeing. A minority of aftercare conversations led to referral to additional care (6.3%).Conclusion: Aftercare conversations with a physician covering a wide-range of topics are likely to be valuable for all bereaved relatives, and not just for “at risk” populations typically targeted by policies and guidelines.

Abstract Background Young adult caregivers (YACs, aged 18–25) who take care of a loved one may juggle between caregiving responsibilities and other life areas such as education and social life, leading to an imbalance in their lives. The web-based tool ‘MantelzorgBalans’ aims to support informal caregivers (ICGs) in balancing caregiving tasks and activities in other life areas. However, this tool was designed to support ICGs of loved ones receiving palliative care and is not yet tailored to the needs of YACs. In order to do so, in this study we aim to explore (i) challenges and support needs of YACs in caregiving, (ii) their needs towards the content of the ‘MantelzorgBalans’ tool, and (iii) issues they encountered in using the tool and their preferences for adaptation of the tool. Method We conducted semi-structured interviews and usability testing with 13 student YACs in the Netherlands. Within usability testing, we used three approaches: (i) a thinking-aloud approach (verbalizing thoughts while using the tool), (ii) a task-based performance approach (scoring task completion rate), and (iii) questionnaires. We used thematic analysis to synthesize the qualitative data. For the quantitative data, we calculated frequencies and mean scores. Results Our findings suggest that the majority of YACs faced challenges in balancing caregiving with life areas such as education and social life. They needed support from healthcare professionals who could listen to them without judging them. With respect to the MantelzorgBalans tool, YACs needed more information on how to provide emotional support to their loved one and the emotional support that is available for them. In regards to the aesthetics, they preferred bright colours and more visuals in the tool. Overall, they were satisfied with the information presented in the tool, but they were neutral in their willingness to use it in the future. Conclusion From this study, we learn that YACs may experience specific challenges and needs in general, and towards a web-based tool in specific. In the near future, it will be important to develop digital tools to support YACs that match their specific needs. This may enable healthcare professionals to offer targeted and personalized digital support to YACs in future.

Background/Objectives: Methodologies for assessing behavior form the foundation of health promotion and disease prevention. Physical activity (PA) and sedentary behavior (SB) assessment methodologies have predominantly been developed for adults without an intellectual disability (ID), raising credibility concerns for adults with ID. The purpose was to synthesize the current state of assessment methodologies for quantifying PA and SB volume in the free-living setting for adults with an ID. Methods: Following PRISMA guidelines, eleven databases were searched through December 2023, yielding 8174 records. Data were extracted in Covidence (v.2.0), obtaining quantified PA and SB volume and assessment methodology characteristics across data collection and analysis, including tool(s) and technique(s) used, preparatory actions taken, instructions provided, and behavioral strategies employed during data collection. Results: Of the 8174 articles screened, 91 met the inclusion criteria. Common metrics included minutes/hours per day/week and steps per day/week. Despite 80% of the studies using objective techniques, substantial variation existed across studies regarding wearable models, sampling frequency and epoch length settings, calibration protocols, wearable placements, and data processing techniques. Limited studies provided instructions that did not exclusively rely on spoken language. Behavioral strategies varied, including self-monitoring, providing assistance or supervision, administering questionnaires verbally, issuing reminders, and offering monetary incentives. Conclusions: This review underscores the need for greater consistency and accessibility in PA and SB assessment methodology for adults with ID. Tailored preparation, instruction, and behavioral strategies may enhance assessment viability and suitability for adults with ID, with or without caregiver or researcher involvement in the free-living setting.

Background: Family caregivers of people with motor neurone disease (MND) experience adverse health outcomes as a result of their caregiving experience. This may be alleviated if their support needs are identified and addressed in a systematic and timely manner. The objective of this pilot study was to assess the feasibility and relevance of the Carers' Alert Thermometer (CAT) in home-based care, from the perspective of MND family caregivers. The tool provides a formal structure to facilitate discussions with caregivers to enable needs to be addressed. Methods: This mixed-method study was conducted in Western Australia (2020–2021). Forty-one caregivers and five MND Advisors participated in trialling the CAT intervention which consisted of two encounters with Advisors (6–8 weeks apart) to identify and address support needs through action plans. Caregivers' feedback was obtained via telephone interviews and a thematic analysis was undertaken. Results: Thirty caregivers completed two CAT assessments. Caregivers identified support priorities of managing their feelings and worries, providing emotional or spiritual care, information about the person's condition and how their care needs might change. Seventeen caregivers were interviewed and found that this assessment process adequately addressed their needs and it should be continued, it brought the focus onto them to clarify problems and work through solutions. The improvements that were suggested by them, including better information/education in palliative care, led to the development of an online support/information toolkit, which served to empower caregivers and staff by accessing relevant information and resources. Conclusions: The CAT demonstrated utility for triaging caregivers most in need of additional support and those whom signposting to additional information and self-directed access to support was most appropriate. For any tool to become an integrated part of care, service provider support is key for implementation, allowing for the time resource required and an appropriate education and support structure. MND Associations have an important role in building stronger partnerships with supportive community networks, through compassionate communities models of care, to address the identified needs of MND families in a more sustainable and wholistic manner. Needs assessment is a means towards building this capacity between formal and informal networks. [ABSTRACT FROM AUTHOR]

Background: Young adult caregivers (YACs, aged 18–25) who take care of a loved one may juggle between caregiving responsibilities and other life areas such as education and social life, leading to an imbalance in their lives. The web-based tool 'MantelzorgBalans' aims to support informal caregivers (ICGs) in balancing caregiving tasks and activities in other life areas. However, this tool was designed to support ICGs of loved ones receiving palliative care and is not yet tailored to the needs of YACs. In order to do so, in this study we aim to explore (i) challenges and support needs of YACs in caregiving, (ii) their needs towards the content of the 'MantelzorgBalans' tool, and (iii) issues they encountered in using the tool and their preferences for adaptation of the tool. Method: We conducted semi-structured interviews and usability testing with 13 student YACs in the Netherlands. Within usability testing, we used three approaches: (i) a thinking-aloud approach (verbalizing thoughts while using the tool), (ii) a task-based performance approach (scoring task completion rate), and (iii) questionnaires. We used thematic analysis to synthesize the qualitative data. For the quantitative data, we calculated frequencies and mean scores. Results: Our findings suggest that the majority of YACs faced challenges in balancing caregiving with life areas such as education and social life. They needed support from healthcare professionals who could listen to them without judging them. With respect to the MantelzorgBalans tool, YACs needed more information on how to provide emotional support to their loved one and the emotional support that is available for them. In regards to the aesthetics, they preferred bright colours and more visuals in the tool. Overall, they were satisfied with the information presented in the tool, but they were neutral in their willingness to use it in the future. Conclusion: From this study, we learn that YACs may experience specific challenges and needs in general, and towards a web-based tool in specific. In the near future, it will be important to develop digital tools to support YACs that match their specific needs. This may enable healthcare professionals to offer targeted and personalized digital support to YACs in future. [ABSTRACT FROM AUTHOR]

In Mexico, colorectal cancer ranks first in mortality and is considered the third most frequent type of cancer. Colorectal cancer patients face challenges in adjusting to their daily lives and activities as symptoms increase significantly from onset, during, and after treatment. Physical and emotional problems resulting from cancer diagnosis and treatment generate support needs throughout the cancer trajectory, which may be associated with decreased quality of life. Currently in Mexico there are few qualitative studies on the needs of patients with colorectal cancer. A phenomenological analysis helps us study experiences as they occur and how people experience them, and could help us understand patients' reactions, feelings, and experiences to changes in cancer diagnosis and treatment, and thus way to provide specific care to the needs they present. The study aimed to investigate the experiences faced by colorectal cancer patients during the diagnosis and treatment process and to identify the support needs required. Qualitative research was carried out with a phenomenological approach which tries to describe the experience without trying to give causal explanations. From this model, people are considered as active, thinking, and responsible for their actions, it considers that people are naturally good and that they seek to achieve positive goals. This model considers that the person cannot be understood unless he perceives the world through her eyes. Semi-structured interviews were conducted with 16 patients diagnosed with colorectal cancer. The interviews lasted 30 to 50 minutes, were audio recorded and transcribed verbatim by a collaborator. The transcripts were analyzed using interpretive phenomenological analysis involving content analysis by categories. The study was approved by the Local Committee for Research and Ethics in Health Research of the Hospital de Alta Especialidad (R-2016-1901-89), which provides tertiary care to patients diagnosed with cancer in which patients receive the cancer treatment of surgery, chemotherapy and radiotherapy. The results show two main themes that emerged in the analysis: changes and support needs during diagnosis and treatment. The changes experienced by patients during diagnosis and treatment are mainly emotional, such as sadness and fear, for which they used different coping strategies such as thinking about their family and spiritual aspects; social and family as adjustments in their activities of daily living, physical related to surgery, stoma and chemotherapy as treatment received, which were accompanied by psychological discomfort. A restructuring of the cancer process was also noted as a positive experience. Other support needs were the lack of information on psychological and family care and on the effects of diagnosis and treatment. The study has limitations, the design was descriptive and exploratory, so it is recommended to carry out a follow-up that allows reviewing the experiences of the patients over time and during the trajectory of the cancer. It is also important to explore the experiences of family members and professionals to obtain a broader view of the phenomenon of the cancer process in its different actors. However, the study is considered valuable due to the information obtained directly from the patient's experience, showing that the changes they experience are emotional, social, family, coping and physical in relation to surgery, stoma and chemotherapy, as well as, the restructuring of the cancer process. Unsatisfied support needs are also shown, such as the lack of information on psychological and family care and on diagnosis, treatment and its side effects. Psychosocial interventions are suggested according to the specific changes that occur in patients, the unmet support needs and the different moments of the disease. [ABSTRACT FROM AUTHOR]

This article presents the results of a narrative review of the literature on the realities of LGBTQ + people with intellectual disabilities (ID). Twelve papers were analyzed. The data were extracted and interpreted through the lens of Honneth’s recognition theory. This review shows that more situations of contempt are experienced by LGBTQ + people with ID than situations of recognition. Experiences of violence, infantilization and discrimination, among others, are reported by those who participated in the surveyed studies. The analysis of the results made it possible to better understand their reality and to make recommendations. In particular, it is suggested that sex education programs for persons with ID be optimized so that issues relating to sexual diversity and gender plurality are addressed. It is also necessary to equip carers to increase their openness and comfort level in addressing these issues. [ABSTRACT FROM AUTHOR]

Purpose: Childhood cancer affects approximately 2000 children annually in Germany, and there is an increasing number of long‐term childhood cancer survivors. Due to developmental tasks, adolescent survivors in long‐term follow‐up (LTFU) care may face specific challenges and perceive different burden due to their disease. The current study explored (a) the impact of cancer and burden regarding survivorship and (b) supportive needs of adolescent childhood cancer survivors in LTFU care. Methods: Semistructured qualitative interviews were conducted with 18 adolescent childhood cancer survivors in LTFU care aged 14–18 years (average age 16.4 years). Interviews were transcribed verbatim and analysed using content analysis. Results: Based on the exploratory research questions, two key categories were generated: (1) The impact and burden on survivors' lives during LTFU care and (2) support needs of adolescent childhood cancer survivors in LTFU care. The four subcategories that emerged regarding the impact and burden on survivors' lives during LTFU care were (1) physical consequences, (2) cognitive impairments, (3) difficulties in social interactions, and (4) psychosocial burden. Additionally, two subcategories, (1) practical and (2) emotional support needs of adolescent childhood cancer survivors were identified. Conclusions: Our results indicate that childhood cancer influences adolescent survivors' life in a negative way even many years after the end of treatment. Furthermore, parents seem to play a crucial role in the survivorship experience of childhood cancer survivors, as they remain keep responsible for most cancer‐related concerns even during LTFU care, causing adolescents to persist in the child role. A family systemic approach to care is suggested to facilitate development‐specific tasks and to enable adolescents to become autonomous adults. Still, the question remains as to who in the health care system could take over the family systemic tasks. [ABSTRACT FROM AUTHOR]

When families transition out of the Australian Defence Force, they can experience a range of challenges that pose risks to their mental health and wellbeing. These may be further complicated by a lack of access to services and low uptake of existing support. While some research has investigated the experiences of previously serving men and women, the support needs of their children have received little empirical attention. This article reports on a qualitative study that explored the experiences of young people who are now adults, when their parents left the Australian Defence Force. Themes developed included gaps in defence and civilian support, inadequate school support, military stigma and receptiveness to support, and ideas for improving strategies and support. Findings were analysed using a thematic approach, and then a socioecological lens was applied, highlighting the multilevel support needs as well as the significant service gaps experienced by young people during the military–civilian transition. IMPLICATIONS Understanding young people's experiences when their parents leave the Australian Defence Force can help social workers and other disciplines appropriately address their support needs through research and practice. Engagement and service provision efforts should consider the multilevel systems that protect young people from experiencing critical or long-term impacts. They should recognise the role of young people's agency, acknowledging that experiences during the military–civilian transition are not homogenous. [ABSTRACT FROM AUTHOR]

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Objectives Family members have a significant role in caregiving for older patients with cancer. These caregivers are exposed to a significant caregiving burden. Therefore, it is necessary to support them. In this regard, it is important to know their needs. The present study aimed to explore the support needs of family caregivers of older patients with cancer in Iran. Methods & Materials This descriptive qualitative study was conducted during 2020–2022. Thirty-one participants including family caregivers of older patients with cancer, family members of family caregivers, and healthcare providers were purposefully recruited from healthcare centers in Tehran, Iran. Data were collected through semi-structured interviews until data saturation. Data analysis was performed using Graneheim and Lundman’s content analysis method. Lincoln and Guba’s criteria were used to evaluate the trustworthiness of the data. Results The analysis led to the identification of six main themes, including the need for informational support, the need for physical support, the need to get rid of psychological insecurity, the need for improve spirituality, the need for practical support and the need for the help of a care team. Conclusion Considering the multiple support needs of family caregivers of older patients with cancer in Iran, policymakers, healthcare planners, and healthcare providers should design and implement various interventions based on these needs by using a caregiver-centered approach to support these caregivers.

Background: The perinatal period is a time of increased vulnerability regarding maternal mental health status. Although guidelines and policies have been published for perinatal mental health disorders (PMHDs) screening in China, the knowledge, attitudes, and support needs of nurses and midwives toward implementing mental health screening programs during pregnancy remain unclear. Thus, this study aimed to investigate the knowledge of PMHDs, attitudes and support needs related to implementing mental health screening during pregnancy among obstetrics and gynecology (OB/GYN) nurses and midwives in the central region of China while identifying the related influencing factors., Methods: A cross-sectional survey was conducted in 14 cities in Hubei, China, using convenience sampling from July to October 2023. The Chinese version of the Perinatal Mental Health Knowledge Questionnaire, the Chinese version of the Perinatal Mental Health Attitudes Scale, and the Health Care Facilities Support Needs Scale were used to investigate the PMHDs knowledge, attitudes, and support needs of OB/GYN nurses and midwives, respectively. Data were analyzed using SPSS version 27.0. Descriptive and inferential statistics were performed, with a p -value of <0.05 considered statistically significant., Results: The average scores for knowledge, attitudes, and support needs were 6.09 ± 1.99 (total score: 13), 47.67 ± 8.80 (total score: 80), and 29.35 ± 4.66 (total score: 35), respectively. After adjusting for years of nursing experience and years of obstetrics and gynecology nursing experience, the multivariate logistic regression analysis indicated that having mental health-related education or work experience [adjusted OR (aOR) = 1.43, p  = 0.01], being midwives (aOR = 1.78, p  < 0.001), and working in specialist maternity hospitals (aOR = 1.55, p  < 0.001) were significantly associated with higher knowledge scores; having mental health related education or work experience (aOR = 1.59, p  = 0.014) and working in specialist maternity hospitals (aOR = 1.42, p  < 0.01) were significantly associated with higher support needs scores., Conclusion: OB/GYN nurses and midwives demonstrated insufficient knowledge and moderate attitudes toward PMHDs screening, and have great support need for PMHDs screening. To address these issues, medical organizations and relevant government sectors should enhance training for nurses and midwives on PMHDs and provide professional support to promote routine maternal mental health screening programs and improve perinatal mental health outcomes., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2024 Zhu, Pan, Chen, Chen, Pan, Chen, Zou and Li.)

Objectives: To investigate the support needs of patients with gout regarding information, communication, treatment and disease monitoring, and patients' views on and preferences for eHealth applications to address these needs., Methods: A focus group study using purposive sampling was conducted. Three focus group sessions with a duration of 2 h per group were held with in total of 23 patients using urate-lowering therapy, recruited from primary and secondary care. Audio recordings were transcribed, and data were analysed using thematic analysis., Results: Eight themes were identified. Five themes addressed support needs of gout patients and suitability of eHealth in addressing those needs: (1) Timely access to healthcare, especially during flares; (2) (personalized) information regarding diagnosis, medication, and diet; (3) insight into uric acid levels and medication side effects through blood monitoring; (4) better coordination across primary and secondary care; and (5) self-management and shared responsibility over care for maintaining health. Three themes addressed eHealth in general: (1) receptive towards eHealth in gout care; (2) the preference for eHealth to have a complementary role (i.e. not replacing face-to-face) contact with healthcare providers; and (3) preferences on eHealth use and functionalities., Conclusion: Patients expressed various needs regarding their disease management and projected a supporting role for eHealth in (self)management of gout. Addressing the needs and preferences of patients could enhance their understanding of the disease and treatment, self-management, and possibly health outcomes., (© The Author(s) 2024. Published by Oxford University Press on behalf of the British Society for Rheumatology.)

Autism spectrum disorder (ASD) is a heterogeneous condition that affects development and functioning from infancy through adulthood. Efforts to parse the heterogeneity of the autism spectrum through subgroups such as Asperger's and Profound Autism have been controversial, and have consistently struggled with issues of reliability, validity, and interpretability. Nonetheless, methods for successfully identifying clinically meaningful subgroups within autism are needed to ensure that research, interventions, and services address the range of needs experienced by autistic individuals. The purpose of this study was to generate and test whether a simple set of questions, organized in a flowchart, could be used in clinical practice and research to differentiate meaningful subgroups based on individuals' level of functioning. Once generated, subgroups could also be compared to the recently proposed administrative category of Profound Autism and to groupings based on standardized adaptive measures. Ninety-seven adults with autism or related neurodevelopmental disorders participating in a longstanding longitudinal study, or their caregivers if they could not answer for themselves, completed phone interviews when the participants were ~30 years old. Information from these phone interviews was used to generate vignettes summarizing characteristics and aspects of the daily lives of each participant (e.g., language level, vocational activities, and social relationships). Three expert clinicians then used these vignettes to classify each participant based on their level of support needs. Meaningfully distinct subgroups within the sample were identified which could be reliably distinguished from one another. Implications of such categorizations and future directions are discussed., (© 2024 The Author(s). Autism Research published by International Society for Autism Research and Wiley Periodicals LLC.)

Most students with complex support needs are taught in separate special education classrooms; one reason is teams that inappropriately use the intensity of support needs as the basis for placement in more restrictive placements. This study used Bayesian multilevel modeling to determine whether the intensity of student support needs predicted educational placement and the extent to which educational placement mediated the relationship between student support needs and outcomes for a sample of 98 elementary students with complex support needs. Findings suggest that students with more intensive support needs were more likely to be placed in more restrictive placements and those restrictive placements predicted lower outcomes. Implications for research and practice related to placement decisions are included. [ABSTRACT FROM AUTHOR]

Background: Sexually exploited young men are prevalent, yet underrepresented in clinical practice, policy and research. There are multiple barriers that often prevent young men to disclose and to seek or receive support, such as gender norms, limited awareness of victimization and feelings of guilt and shame. Objective: By gaining more insight into the background characteristics of young men who experienced sexual exploitation and their needs, this study aims to raise awareness and to better inform policymakers, care- and educational professionals on adequate prevention and intervention efforts. Methods: Twenty-six young men (age 14–32) who experienced sexual exploitation or other forms of sexual violence in their youth or were at high-risk, participated in this qualitative study that was conducted in The Netherlands. By means of semi-structured interviews and case-file analyses, data was collected to identify risk and protective factors in their life-course and support needs. Results: Several vulnerabilities (e.g. previous experiences of abuse and neglect, household dysfunction, social rejection, running away, substance use) and a lack of positive and supportive relationships led young men into high-risk situations. Among these were involvement in pay dates, criminality and having to survive from day to day, which contributed to victimization. Prevailing gender norms and experiences of stigmatization were often a barrier to express vulnerabilities and to disclose victimization. There was a wide variety in support needs, including peer-to-peer support, therapy, support with day-to-day practices and anonymous support. Conclusions: These results will contribute to adequate prevention and trauma-informed intervention strategies that meet the unique needs of young men at risk for, or victim of sexual exploitation. [ABSTRACT FROM AUTHOR]

Parental cancer brings changes and challenges which affect the whole family. Evidence shows heightened psychosocial risk among the offspring. Research among adolescents and young adults (AYAs) facing parental cancer has mainly focused on these psychosocial problems. As a reaction, there has been an increase in research on the needs of this population, since this knowledge is crucial for developing appropriate support. Despite this increase, some AYAs are still underrepresented, namely those over eighteen years old and those who have a parent with incurable cancer. Moreover, the factors hampering or fostering access to and receipt of support addressing their needs are under-investigated. Increasing our understanding of these issues is crucial to developing more effective support interventions for these young people. Our aim was therefore to gain insight into the perceived support needs of AYAs who have a parent with cancer, including the mentioned underrepresented subgroups, and the perceived factors facilitating or hindering their use of support. We conducted semi-structured interviews with 17 AYAs who have a parent with cancer of any type and stage, which were analyzed using conventional Qualitative Content Analysis (QCA). Six main categories emerged from the data, encompassing various subcategories: 1) Needs surrounding the time of disclosure, 2) Information needs, 3) Informal support needs, 4) Need for effective personal coping strategies, 5) Formal support needs, and 6) Contextual and medical factors affecting support needs. AYAs perceived family members, friends and teachers as important sources of informal support, but lacked contact with peers who also have a parent with cancer. They expressed a need for formal informational and emotional support from their parent's medical team, (onco)psychologists, and their general practitioner. AYAs faced barriers in accessing formal support. A proactive attitude from healthcare providers and information about available support would help them meet their needs. Furthermore, we shed new light on needs and issues in post-secondary education. AYAs who are living with their parent with cancer experience informational, emotional, and practical needs in multiple contexts, such as the home, school, leisure and hospital environment. They identify their informal and formal network as important key figures in addressing these needs. • AYAs between 18 and 25 years of age experience similar support needs as younger adolescents. • AYAs need informational, social and practical support in various contexts, such as at home, school and among friends. • AYAs need contact with peers who go through similar challenges. • AYAs need proactive support from healthcare professionals and a clear overview of the support available for them. • AYAs in post-secondary education need more recognition, flexibility and practical assistance. [ABSTRACT FROM AUTHOR]

Caring for people living with dementia during the novel coronavirus disease 2019 (COVID-19) pandemic significantly impacted the emotional, physical, and social well-being of carers. However, no study has focused on the well-being of Chinese carers of people living with dementia in New Zealand during the pandemic. This study aimed to explore the support needs of Chinese carers of people living with dementia in New Zealand during the COVID-19 pandemic. Semi-structured interviews were conducted by two bilingual and bicultural researchers. Thematic analysis was used to explore the resilience resources for Chinese carers. Twelve Chinese carers were recruited from four community organizations in New Zealand. Four themes were identified: (1) social isolation, (2) emotional loneliness, (3) ambivalent feelings of being a carer, and (4) a variety of unmet needs. The findings of our study provide new insights into the multiple support needs of Chinese carers of people living with dementia during the COVID-19 pandemic. Implications for practice include the establishment of culturally appropriate care support services and the development of tailored resilience-building interventions to address the unmet needs of Chinese carers of people living with dementia.

Alongside typical parenting challenges, initial condition-specific research suggests thadifferent experiences and support needs.t parents of children with different visible differences may experience similar psychosocial difficulties. Despite this, large-scale cross-condition research to identify risk and protective factors for parental distress and psychosocial adjustment has been lacking. Two hundred and nine parents and carers of children with a range of visible differences completed an online survey comprised of standardised outcome measures, study-specific measures, and open-ended questions. Multiple regression modelling identified possible risk and protective factors, and data collected via open-ended questions were analysed using content analysis. Findings support themes previously identified in small-scale cross-condition qualitative research with parents of children with visible differences. Risk factors for parental negative affect and stress included parental reports of the noticeability of their child's visible difference and teasing. Protective factors included good parent-child communication, self-compassion, knowledge of their child's condition and satisfaction with treatment. The risk and protective factors identified provide important insight into the experiences of this parent population and indicate possible avenues for psychosocial intervention., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Multiple system atrophy (MSA) is a neurodegenerative disease with presentations including parkinsonism, autonomic disturbances, gait impairment and mood disorders. The progressive nature of MSA results in a significant deterioration in quality of life for patients. To investigate the needs of people with MSA (PwMSA) in the United Kingdom (UK) and the support provided to them. A survey of members of the UK's MSA Trust including PwMSA and former carers explored questions on the physical, emotional, personal and financial impact of MSA and on support received. There were 284 valid responses from PwMSA and 371 responses from former carers. Difficulties with movement were universally experienced by PwMSA. The majority of former carers reported these as difficult or very difficult to manage (90 %), followed by autonomic problems (85 %) and breathing, speech or swallowing problems (81 %). PwMSA also reported fatigue (96 %), mood disorders (80 %) and social isolation (82 %). 41 % of former carers felt that the emotional needs of PwMSA had not been met. Many also reported inadequately covered financial needs (48 %). Equipment used most commonly included mobility equipment (90 %). The majority received support from neurologists (95 %) and GPs (92 %), but few from palliative care or mental health professionals. Satisfaction was highest for support from palliative services (95 %) and specialist nurses (91 %). This survey demonstrates the high burden of MSA across various aspects of life for PwMSA. It suggests that whilst there is good provision of neurology services and physical equipment, there is a need to improve support for their emotional and social needs. • The most common problems reported were difficulties movingsymptoms and breathing, speech or swallowing problems. • They also frequent experience fatigue, mood disorders and social isolation but their emotional needs are often not met. • Many people with multiple system atrophy have inadequately met financial needs. • Few people with multiple system atrophy receive support from palliative care or mental health professionals. • Satisfaction for support from palliative care and specialist nurses is high. [ABSTRACT FROM AUTHOR]