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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]

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]

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]

BACKGROUND: Project SEARCH is a one-year school-to-work transition program that prepares students with intellectual and developmental disabilities (IDD) for competitive employment. OBJECTIVE: The current study used a mixed-method explanatory design to examine Project SEARCH graduates' overall experience of transitioning from Project SEARCH to employment, their long-term employment outcomes, and their support needs during and after the program. METHOD: Parents of 31 Project SEARCH graduates completed an online survey regarding the graduates' outcomes and 9 parents agreed to participate in a follow-up interview. RESULTS: Respondents reported positive employment outcomes for 24 of the Project SEARCH graduates (77.4% employed after Project SEARCH), primarily in the customer service industry. CONCLUSION: The graduates were satisfied with their employment but also experienced difficulties and a need for additional employment preparation and support after Project SEARCH. [ABSTRACT FROM AUTHOR]

This study investigates the self-reported impact of children's psychiatric disorders on their siblings and assesses what forms of support such children most value. We used a qualitative research design with open interviews to stimulate children between 8 and 15 years old to talk about their experiences living with a brother or sister with a psychiatric disorder. Their stories were analysed within a hermeneutic phenomenological framework in order to identify narrative themes and interpret the meaning of shared experiences. From our analysis, nine shared narrative themes emerge. Overall, siblings report feeling conflicted about adapting their lives to their brother's or sister's disorder and signal a need for personalized attention from parents. They also indicate that being involved in the care for their brother or sister helps them to better understand their behaviour. Finally, siblings reveal that, in their experience, formal, protocolized forms of support foreground family problems and stress. Thus, we recommend to involve children in the care process; to acknowledge their personal needs and conflicts; and to be mindful of the style of support: help offered in an informal or playful way, instead of formal and protocolized, could be a more effective way of meeting siblings' needs. [ABSTRACT FROM AUTHOR]

Purpose: To explore and describe the enactment of user involvement and combined care in a Danish clinic that aimed at providing integrated diabetes and mental health care. Design: An ethnographic study. Data Sources and Methods: Data consisted of field notes from 96 hours of participant observations and field notes from 32 informal conversations with healthcare providers, users and relatives as well as 12 semistructured interviews with users. Data were analysed using a thematic analysis. This study reports to the SRQR guidelines. Results: Treatment was not combined as intended if only one healthcare provider handled the consultations. Here, the healthcare providers' focus was often on their own area of expertise—either mental health or diabetes. If more than one healthcare provider handled consultations, the consultations were often divided between them, focussing on one condition at the time. Healthcare providers noted, that learning from peer colleagues was a way to increase the possibility for combined care. Furthermore, combined care was highly dependent on the healthcare providers' ability to involve users' illness experiences in their own care planning. Here, a high level of user involvement increased the levels of combined care during consultations. Conclusion: This study set out to explore and describe user involvement and combined care in a specialised diabetes and mental health outpatient clinic. Combined care is complexed and requires that healthcare providers are well‐equipped to manage the complexity of delivering care for people with both conditions. The degree of combined care was linked with the healthcare providers' ability to involve users and their knowledge on the condition outside there are of expertise. Relevance to Clinical Practice: A peer‐learning environment in combination with clinical guidelines and joint display could support healthcare providers in involving users in own care and when delivering care outside their area of expertise. Public contribution: No patient or public contribution. Due to the COVID‐19 pandemic, the original user council withdraw their consent to participate due to health‐related worries and anxiety concerning the pandemic. The user council consisted of three members diagnosed with diabetes and severe mental illness. They were invited to participate in physical meetings, phone or online meetings. Presenting findings from the study to the study participants were also hindered by the second lockdown. This influenced the possibility for data triangulation. [ABSTRACT FROM AUTHOR]

Aim: To explore nurses' experiences of supporting family caregivers in specialised home care while learning to use the Carer Support Needs Assessment Tool Intervention. Background: The Carer Support Needs Assessment Tool Intervention can provide guidance for discussions with family caregivers in specialised home care concerning their specific support needs. Little attention has been paid to how nurses experience the use of the intervention in their everyday practice. Design: This longitudinal study adopted an inductive qualitative approach using interpretive description. Methods: Interviews were conducted at two time points. A total of 22 interviews took place with 12 nurses recruited from six specialised home care services. Data were analysed using interpretive description. Results Nurses' everyday clinical practice changed while learning to use the Carer Support Needs Assessment Tool Intervention, and they experienced professional and personal growth. Their supportive inputs shifted from being reactive towards being more proactive. Their approach changed from taking on great professional responsibility, towards a shared responsibility with family caregivers. The support altered from ad hoc contacts in the hallway, towards scheduled trustful conversations. Nurses were concerned about the amount of time and energy this kind of support might require. They pointed to the importance of holding good nursing skills to conduct this new way of having conversations. Conclusion: Nurses' everyday clinical practice can be further developed through the use of the Carer Support Needs Assessment Tool Intervention. Nurses may develop both professionally and personally, increasing their ability to provide person‐centred support. Relevance to Clinical Practice: With the use of the Carer Support Needs Assessment Tool Intervention, nurses can create trusting conversations with family caregivers of patients with life‐threatening illnesses cared for in specialised home care. Reporting Method: Reporting of the study follows the Consolidated Criteria For Reporting Qualitative Research (COREQ) checklist (File S1). Patient or Public Contribution: Participating nurses were involved in discussing the study design. [ABSTRACT FROM AUTHOR]

Aims and objectives: To investigate the support needs identified by Taiwanese breast cancer diagnosed mothers for themselves and their 6–12‐year‐old children for implementation in a support group. Background: Mothers with dependent children are burdened with diverse child‐centered concerns while battling breast cancer. A better understanding of the concomitant support needs of mothers and their children can yield tailored support for ill mothers and their children. Design: A qualitative descriptive study employing content analysis of collected data. Methods: Between February and June of 2020, semi‐structured individual interviews were conducted with 20 mothers who had been diagnosed with breast cancer in the last 2 years. Qualitative content analysis was used. This study followed the COREQ guidelines. Results: Ill mothers favoured a hybrid format for support groups, consisting of mother‐only, child‐only, and mother–child group sessions. The content analysis yielded four themes for mother‐only group sessions: (1) learning to reach out to children; (2) dealing with negative emotions; (3) how to say goodbye to children; and (4) resetting for the future. Three themes related to child‐only group sessions emerged: (1) emotional and health education; (2) getting along with a sick mother; and (3) preparing for uncertainty. The core theme for mother–child group sessions was relationship enhancement. Conclusion: The findings revealed that mother‐reported support needs of ill mothers and their children included support for improving children's emotional well‐being and mothers' emotional coping, preparing for uncertainty, and promoting intimacy in the mother–child relationship. Relevance to clinical practice: A relation‐focused approach to psychosocial support group development that allows mother–child mutual influences on each other's coping to be addressed bilaterally is suggested. Patient or public contribution: Mothers diagnosed with breast cancer were interviewed for data collection and invited to review and validate the synthesised data for enhancing the credibility of the study. [ABSTRACT FROM AUTHOR]

Background: Patients with inflammatory rheumatic diseases (IRDs) face challenges including pain, fatigue and disease flares. Evidence suggests their levels of anxiety and depression are higher compared to the general population. Rheumatology teams report psychologically distressed patients have additional support needs and require more clinical time. Little is currently known about models of support and their integration into care pathways. Aim: To understand rheumatology health professionals' perspectives on patients' psychological distress and ways to meet support needs. Methods: The study used a qualitative design, with data collected in telephone semi‐structured interviews. Inductive thematic analysis was used to analyse the data. Results: Fifteen interviews were conducted. Two main themes with sub‐themes represent the data: Theme 1: 'No one shoe fits all'—the many manifestations of distress in patients (sub‐themes: recognising distress, dealing with distress, dealing with life events alongside an IRD) and Theme 2: 'If rheumatology could be interwoven with psychological principles'—the need to attend to the psychological impact of IRDs, alongside the physical impact (sub‐themes: priority given to physical health, working together to help patients in distress, how should patient distress be measured?, the need for extra time and resources). Conclusion: Distress can be obvious or hidden, cause issues for patients and health professionals and lead to poor engagement with care provision. Health professionals described the powerful link between physical and mental distress. This study suggests psychological support provision should be embedded within the rheumatology team and that patients' emotional wellbeing should be given equal priority to their physical wellbeing. [ABSTRACT FROM AUTHOR]

Usher syndrome is a progressive form of deafblindness, which can have significant psychological consequences. This study aimed to get insight in the perceived impact of Usher syndrome type 2 (USH2) on families with a parent affected by this syndrome, and in the experiences of these families with social, professional, and peer support. Participants were 10 parents with USH2 living in the Netherlands, 10 of their co-parents, and 10 of their children. The parents filled in questionnaires and participated in a semi-structured interview. A photo-elicitation interview and a semi-structured interview were administered to the children. Interviews were transcribed and systematically coded, using thematic and open coding. Parents rated the family's quality of life in general as satisfactory. Both negative and positive consequences were described of USH2 for the family. Parents without USH2 and their children stated to provide support to the parent with USH2, which was often described as self-evident. Some parents without USH2, however, described their family tasks as a burden. Some parents also reported that psychological problems of the parent with USH2 affected the well-being of other family members. Several parents and some children expressed that the syndrome was hardly discussed within the family. Unfulfilled family support needs were mentioned, a lack of involvement of family members in the professional support, as well as a lack of professional and peer support for children and partners. This study revealed that USH2 in a parent has impact on the entire family. Family-centred approaches are recommended for professionals who support parents with Usher syndrome. [ABSTRACT FROM AUTHOR]

Background/Aim: Midwives play an important role in assisting women to cope with the initial trauma of perinatal loss, but their own coping and support needs can be overlooked. The purpose of the study was to explore the coping behaviours and support needs of midwives caring for women with perinatal loss. Methods: A qualitative, exploratory, descriptive design was used. Data were collected using semi-structured one-on-one interviews with 13 purposively sampled participants from the Nelson Mandela Bay Health District. Results: Three themes emerged concerning midwives' coping mechanisms in relation to perinatal loss, their views on support from management and the need for psychological and emotional support. Conclusions: The participants felt the need for unit-based psychological and emotional support. They called for the development of a protocol for midwives to manage perinatal loss events. They felt that the layout of the labour wards needed to be redesigned and that the problem of staff shortages needed to be urgently addressed. [ABSTRACT FROM AUTHOR]

Individuals with autism spectrum disorder (ASD) experience significant barriers to employment. This study aimed to look at the support received by individuals with ASD in gaining and maintaining open employment from their perspective. A phenomenological approach was adopted with participants (n = 9) participating in semi-structured interviews. Thematic analysis identified four key themes; being supported, feeling successful, career progression and expectations. The findings suggest that individuals with ASD receive support from many different sources in their employment including supervisors, co-workers and parents. The support they received from disability employment consultants was more focused on obtaining a job rather than job maintenance or career progression. Career progression was rarely discussed by participants with their disability employment consultant, despite some evidence of poor job matches and unused qualifications and skills (reflecting a poor investment for individuals and society). Despite this, participants reported feeling successful due to having a job, having pride in their work, and feeling valued by co-workers. The study highlights the need for more research on understanding the longer-term support needs of people with ASD in open employment. Changes in policy to better resource and incentivize disability employment providers could produce more positive outcomes for people with ASD throughout their working lives. [ABSTRACT FROM AUTHOR]

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Background: For a healthy lifestyle, people with moderate, severe, and profound intellectual disabilities living in residential facilities and/or participating in day activity centers are dependent on their direct support professionals. However, it is unclear what knowledge and skills these direct support professionals require to support these individuals in living a healthy lifestyle. Therefore, the aim of this study was to identify the needs of direct support professionals for supporting these people with moderate to profound intellectual disabilities to achieve and maintain a healthy lifestyle. Method: Direct support professionals (n = 28) were interviewed with the use of a semi‐structured protocol based on the theoretical domains framework. The interviews were analyzed with a theory‐driven content analysis. Results: The most frequently mentioned needs referred to the following domains of the theoretical domains framework: environmental context and resources (n = 27), social/professional role and identity (n = 25), social influence (n = 25), skills (n = 24), and knowledge (n = 23). Conclusion: To support people with moderate to profound intellectual disabilities in leading a healthy lifestyle, direct support professionals (DSPs) primarily needed support related to the domain environmental context and resources. Within this domain available time, dealing with different seasons, and a healthy lifestyle policy in the organization need attention. Development of interventions targeting these DSPs needs is required. [ABSTRACT FROM AUTHOR]

Background: Few individuals with metastatic prostate cancer have access to prostate cancer-specific exercise support, despite demonstrated benefits. eHealth tools, such as websites, may be viable options for increasing access. To be effective and acceptable, future eHealth websites need to consider end-users' perspectives, capacity and needs. We aim to provide insight into these factors by exploring daily priorities, activities and health literacy of individuals with metastatic prostate cancer and their perspectives towards exercise and exercise-based web-based eHealth interventions. Methods: Semi-structured interviews explored participant's experiences and understanding of their disease, exercise levels, advice received from health care providers, as well as acceptability of and suggested content for an eHealth tool. A thematic analysis was undertaken. Results: Interviews were conducted with eighteen Australians (55–83 years; M = 71.5, SD = 8.9) living with metastatic prostate cancer. Needing to perform daily responsibilities was a key priority. Participants had limited understanding of the benefits of prostate cancer-specific exercise, and less than half discussed exercise with their health team. Fourteen men felt they could report metastases location, but only four could provide detailed information, which has clinical implications for exercise prescription. A potential web-based intervention was considered acceptable by seventeen men for reasons such as affordability, accessibility and convenience. User-friendly design and practitioner support were important. Conclusions: Results identified key aspects useful for person-centred design of exercise programs. Participants were positive towards the proposed web-based tool and expressed the need for individualised, user-friendly and reliable information with support from a professional embedded. Lastly, not all participants could accurately report metastasis locations. [ABSTRACT FROM AUTHOR]

Background: Caring for a person with dementia predisposes informal carers (carers) to mental and physical disability. Carers tend to focus on the needs of the person with dementia and have difficulties expressing their own needs for support. No instrument has yet been developed to directly assess carers' support needs. The aim of this study is to clarify the main categories of carers' support needs to inform future development of an instrument to assess carers' support needs. Methods: A qualitative approach combining focus group interviews with carers and professionals and individual interviews were used. Results: Carers' support needs were categorised into four areas: (i) daily life when caring for a person with dementia, (ii) focus on themselves, (iii) maintain own well‐being, and (iv) communicate and interact with surroundings. Discussion: Carers have support needs in common regardless of the relation to the person with dementia. Carers tend to focus on the needs of the person with dementia, thus not knowing their own needs. The four main categories clarified in this study may inform the foundation of developing an instrument to facilitate dialogue between carers and professionals with the purpose of assessing carers' support needs. [ABSTRACT FROM AUTHOR]

The diagnosis of childhood cancer not only affects the life of the child but also impacts the lives of the caregivers as well. This study aims to explore the caregiving stress, coping strategies, and support needs of mothers caring for children/adolescents with cancer during the active treatment phase. Individual semi-structured interviews were conducted, and two authors independently and thematically analyzed data. Caregiving mothers went through a process of emotional changes and a change in lifestyles when their children were diagnosed with cancer and undergoing treatments. It is important to ensure that caregiving mothers of children/adolescents with cancer are well supported by family, friends, and healthcare professionals. Healthcare professionals can develop informational booklets on cancer treatment protocols and work together with mothers. Parent support groups and plans for psychoeducational and spiritual care programs for mothers as forms of informational and emotional support may also be established. [ABSTRACT FROM AUTHOR]

Purpose: Family members make an important contribution to informal and formal care, as well as the overall health and wellbeing of individuals with spinal cord injury. Caregiving often results in negative outcomes which, if not addressed, threaten the sustainability of these critical supports. We sought to explore the perceptions of individuals with spinal cord injury and their family caregivers regarding the facilitators and barriers to undertaking and sustaining the caregiving role in the community. Methods: A qualitative descriptive approach with semi-structured interviews. Thematic analysis was employed to determine key themes arising from individuals with spinal cord injury (n = 19) and their family members' (n = 16) experiences. Results: The following four facilitators to caregiving were identified: access to community support services, positive coping in relationship, social support, and mastery of caregiving roles. Conversely, the following six barriers to caregiving were identified: lack of access to community resources, lack of knowledge about resources and formal training, fragmented continuity of care, negative coping in relationship, role strain, and caregiver injury or illness. Conclusions: The current study demonstrated that positive coping, social support, skills training, access to community services and continuity of care contribute significantly to the sustainability of the spinal cord injury family caregiving role. As such, the development of future caregiver interventions should consider these facilitators. Family caregivers make an important contribution to the care processes and overall quality of life of individuals with spinal cord injury post-discharge into the community. The potential negative effects of caregiving could threaten the sustainability of these critical supports. Positive coping, social support, skills training, access to community services, and continuity of care contribute significantly to the sustainability of the spinal cord injury family caregiving role. This study shows the need for better integration of family members during the rehabilitation and discharge process to better prepare them for the caregiving role. [ABSTRACT FROM AUTHOR]

Background: Compared to the general population, individuals with intellectual and developmental disabilities (IDD) more often experience bullying and its negative social and emotional impacts. Prior studies explored bullying of individuals with IDD primarily through investigations of the perspectives of others and the negative impacts of bullying. The current study examined how individuals with IDD describe their responses to experiences of bullying, with a focus on whether responses included component skills of self‐determination. Method: Eighteen adults with IDD (50% female) aged 18–63 years were interviewed about their experiences with bullying. Interviews were analysed to determine responses to bullying and the degree to which their responses demonstrated self‐determination. Results: Data analysis revealed two primary themes, outside support and self‐determination, with additional subthemes. Conclusions: Findings provide a more nuanced description of the ways in which individuals with IDD respond to bullying, including the demonstration of self‐determination skills. Implications for research and practice are discussed. [ABSTRACT FROM AUTHOR]

Varying perceptions of who should be responsible for supporting individuals with mental health problems may contribute to their needs remaining unmet. A qualitative descriptive design was used to explore these perceptions among key stakeholders. Focus groups were conducted with 13 service users, 12 family members, and 18 treatment providers from an early psychosis intervention program in Montreal, Canada. Individual interviews were conducted with six mental health policy-/decision-makers. Participants across stakeholder groups assigned a range of responsibilities to individuals with mental health problems, stakeholders in these individuals' immediate and extended social networks (e.g., families), macro-level stakeholders with influence (e.g., government), and society as a whole. Perceived failings of the health care system and the need for greater sharing of roles and responsibilities also emerged as important themes. Our findings suggest that different stakeholders should collectively assume certain responsibilities and that systems-level failings may contribute to unmet needs for mental health support. [ABSTRACT FROM AUTHOR]

Aim: To explore the experiences and needs of partners who are supporting adolescents and young adults with cancer. The diagnosis of cancer at any age is significant. Uniquely, in adolescents and young adults this is set against the backdrop of early adult development. This is at a time when young people may be embarking on new experiences and the development of romantic relationships is no exception. There is limited evidence of how partners cope during this time and what their role is alongside how the relationship may change over time. Design: An exploratory qualitative study using narrative enquiry. Methods: The protocol was approved in February 2018 and data will be collected between May – December 2018. The theoretical approach will incorporate positioning theory by considering the contextual situation of the partner with reference to their stories, including their rights and duties. Two interviews will be undertaken which will be approximately 2 months apart, where participants will be asked to share their stories. They will also be given a diary at the end of the first interview to record their thoughts about their role and relationship. The diary and interview data will be thematically analysed. Discussion: It is envisaged that the study will culminate in the identification of key themes which will illuminate the experiences, needs and roles of partners of adolescents and young adults with cancer. Impact: These findings will inform the development of guidance which will help partners in the future in this area of practice. [ABSTRACT FROM AUTHOR]

The gender roles and identity of siblings have been found to be an important factor in the nature and quality of sibling relationships. With an increasing number of young people identifying as gender-diverse or transgender, this research aimed to develop a greater understanding of how young people make sense of their siblings' gender diversity. Semi-structured interviews explored the experiences of eight sibling participants (aged 11–25 years) who have a sibling identifying as gender-diverse. Five overarching themes emerged from the thematic analysis of their transcribed interviews. These themes encapsulated commonalities and nuances within the sibling participants' experiences and revealed a process of adjustment. Developing an increased understanding of transgender issues appeared to enable young people to embrace supportive roles, and as a consequence, they reported that their relationships with their gender-diverse siblings were enhanced. However, the sibling participants' increased understanding of transgender issues also generated significant fears and concerns about their siblings' well-being and their sibling relationships. From understanding more about these eight young people's experiences, suggestions are given for how specialist services might best support siblings of gender-diverse young people along their processes of adjustment. [ABSTRACT FROM AUTHOR]

Service organizations for people with intellectual disabilities (ID) increasingly look for technological applications to improve their services. DigiContact is an online support service developed by Philadelphia Care Foundation in the Netherlands which enables independently living people with ID to contact specially trained support workers 24/7. The purpose of this study was to explore the support needs for which people with ID use online support. We first conducted interviews with 21 individuals with ID who use the online support service. Transcriptions of the interviews were analyzed using inductive thematic analysis. Second, online support workers registered items regarding the support needs when in contact with support users. These data were analyzed to assess which and how often the support needs were present. Online support is used for a broad variety of issues. Four themes emerged during analysis of the interviews: mental health, social contacts (conflicts with others as well as lack of contacts), practical issues, and physical health. Analysis of the support workers' data showed that making a connection with someone and talking about worries and stress are the two most frequent support needs. Most support needs did not differ across the time of day or across the week. The results suggest that 24/7 online support is a useful way of providing services to independently living people with ID. Unlimited access to support has multiple advantages. It appears to have a signaling and a preventive function with regard to emotional and behavioral problems. [ABSTRACT FROM AUTHOR]

This study examined how 34 senior students and first-year college students with autism spectrum disorder, their mothers (n = 34) and fathers (n = 26) navigate the higher education transition, and how this context impacts on dynamics in the parent-child relationships. Semi-structured interviews were analyzed based on grounded theory and dyadic analysis principles. Both parties were confronted with an abundance of challenges and experienced strong feelings of ambivalence, stress and anxiety. Differences in perspectives occurred regarding the construction of adulthood, the acquisition of autonomy, disclosure and subscribing to support services. These differences caused tensions in the parent-child relationship, hindering the transformation of the relationship into an adult-like mutual relationship. Clinical implications are extrapolated on the basis of these findings. [ABSTRACT FROM AUTHOR]

Empirical research that addresses sexual orientation in people with an intellectual disability (ID) is limited, and very little is known regarding the personal experiences of lesbian and bisexual women with ID. This study set out to answer the question: What are the experiences of lesbian and bisexual women with a mild intellectual disability in the Netherlands? Ten lesbian and bisexual women (average age of 33 years) with a mild intellectual disability took part in our study comprising of semi-structured interviews. Participants reported that they had found it hard to talk to others about sensitive subjects such as their sexuality, and had been left to figure out information regarding their sexual orientation without support or guidance. Our results point to a lack of information, sexual education and role models when it comes to lesbian sex and women with an intellectual disability. Social contact was often limited, and participants experienced difficulties finding a partner. Furthermore, participants often had to cope with mental health problems and had struggled with loneliness, depression and addiction. Last but not least, our participants reported that they had been discriminated against. Coming out (revealing your sexual orientation) is not easy when you have an intellectual disability. To enable women with ID who have lesbian or bisexual feelings to understand and secure their sexual rights in their daily lives is important. Therefore, it is necessary to provide support in the following domains: sexual education and training, social contact and assertiveness. [ABSTRACT FROM AUTHOR]

Objective: Thyroid cancer is one of the most common cancers affecting young people and carries an excellent prognosis. Little is known about the psychosocial issues that face young people diagnosed with a treatable cancer. This study explored how young people experienced diagnosis, treatment, and how they made sense of an experience which challenged their views on what it means to have cancer.Method: Semi-structured interviews were conducted with eight young people diagnosed with either papillary or follicular thyroid cancer, and analysed with interpretative phenomenological analysis (IPA).Results: Two inter-related aspects of their experience are discussed: (1) the range of feelings and emotions experienced including feeling disregarded, vulnerability, shock and isolation; (2) how they made sense of and ascribed meaning to their experience in the light of the unique nature of their cancer. A thread running throughout the findings highlights that this was a disruptive biographical experience.Conclusions: Young people experienced a loss of youthful immunity which contrasted with a sense of growth and shift in life perspective. Having a highly treatable cancer was helpful in aiding them to reframe their situation positively but at the same time left them feeling dismissed over a lack of recognition that they had cancer. The young peoples' experiences point to a need for increased understanding of this rare cancer, more effective communication from health care professionals and a greater understanding of the experiential impact of this disease on young people. Suggestions to improve the service provision to this patient group are provided. Statement of contribution What is already known on this subject? Differentiated thyroid cancer has an excellent prognosis. Quality of life of thyroid cancer has marginally been explored in the literature. Little is known on the support needs of young people diagnosed with thyroid cancer. What does this study add? Increased understanding of how young people make sense and cope with thyroid cancer despite the lack of support resources. Addressing illness perceptions through improved information support may aid coping and adjustment. Insight into the needs of young people diagnosed with thyroid cancer and recommendations on service improvements. [ABSTRACT FROM AUTHOR]

Aim To explore first-time fathers' postnatal experiences and support needs in the early postpartum period. Background The postnatal period is a stressful transition period for new fathers. It is imperative to understand their needs and experiences to provide appropriate support for them. The majority of previous studies were based in Western countries and explored fathers' needs during pregnancy and childbirth, with few studies conducted in the postnatal period. In Singapore, a multiracial society with differing paternal cultural values from its Western counterparts, there is considerable need to examine the experiences and needs of first-time fathers. Design A descriptive qualitative design was used. Methods Data were collected from November 2015-January 2016. Fifteen first-time fathers were recruited from two postnatal wards of a public hospital, using a purposive sampling method. A semi-structured interview guide was used to conduct face-to-face interviews. A thematic analysis was conducted and ethics approval was sought for this study. Results Four overarching themes and seventeen subthemes were generated. The four overarching themes were: (1) No sense of reality to sense of responsibility; (2) Unprepared and challenged; (3) Support: needs, sources, experience and attitude; and (4) Future help for fathers. Conclusion Fathers undergo a transition phase where they have unmet support needs during the early postnatal period. Understanding and addressing these needs may facilitate smooth transition to fatherhood. This study's findings can be used to involve fathers and design future supportive educational programs to promote positive parenting experiences and family dynamics. [ABSTRACT FROM AUTHOR]

Background: An increasing body of research has sought to determine the impact of Disorders of Sex Development (DSD) on the family of the affected child. Little is currently understood about the support needs of the family and how well these needs are met. Methods: Interpretive Phenomenological Analysis was used to analyse semi-structured interviews with eight mothers of children with DSD about their experiences of support. Results: Four master themes emerged which encapsulated (a) the stages in their child's development when mothers most needed support, (b) the importance of developing an understanding of the child's condition, (c) the lack of acknowledgement of the emotional needs of the parent and (d) the importance of having close and trusted networks for support. Continuity and availability of support were considered important and while all participants prioritised maintaining privacy about the condition, a minority felt that this impacted the level of support they received. Conclusions: Key time points for support were identified and while some felt that they were well supported others felt that the support available did not meet their emotional needs. Clinical implications and directions for future research were considered. [ABSTRACT FROM AUTHOR]

This study explored oncology healthcare professionals’ perspectives on the psychosocial support needs of diverse cancer patients during oncology treatment. Six themes were identified using thematic analysis. Healthcare professionals highlighted the importance of their sensitivity, respect and emotional tact during appointments in order to effectively identify and meet the needs of oncology patients. Participants also emphasised the importance of building rapport that recognises patients as people. Patients’ acceptance of treatment-related distress and uncertainty was described as required for uptake of available psychosocial supportive services. We offer some practical implications that may help improve cancer patients’ experiences during oncology treatment. [ABSTRACT FROM AUTHOR]

Introduction Fathers are increasingly involved in caring for children, and involvement by fathers of children with ASD is distinctly impacted by added demands of their child's diagnosis. Yet supports for families of children with ASD are not tailored to needs of fathers. We use an ecological framework to examine how fathers' needs are influenced by contexts ranging from the immediacy of their child's behaviour to overarching expectations for good fathering. Methods We thematically analyse data from semi-structured interviews with 28 fathers of children with ASD who shared parenting stories of navigating their immediate and broader environments. Findings Fathers are responsive and reflective in their parenting and value recreationally based support activities that include their children. Fathers endorse father-to-father support and are interested in mentoring fathers newer to the experience of having a child with ASD. Conclusions Fathers are resourceful parents who compel a critical re-examination towards advances in father-friendly practices. [ABSTRACT FROM AUTHOR]

The article reports on supporting family caregivers to identify their own needs in end-of-life care. Topics discussed include family caregivers, home-based palliative care, and Carer Support Needs Assessment Tool. Also being discussed are the practicality and usefulness of the systematic assessment, and emotional responses to caregiver reflection.

Family foster care is a valuable, but vulnerable type of out-of-home placement. Adequate support of foster parents is an important factor for placement success. This requires an accurate assessment of the support needs of foster parents. This paper focuses on the support needs of foster mothers concerning difficult behavior of the child and their own parenting behavior. Data were gathered from 282 foster mothers. 46 % of the foster mothers needed support on at least one behavior of the child, 40 % on at least one parenting behavior. Foster mothers, who felt less competent to deal with the child, expressed a higher support need on both areas. A high support need concerning difficult behaviors was further predicted by the foster mother's age, the type of foster care, and the number of biological children. A high support need concerning parenting was further predicted by the quality of support by the foster care worker and the number of foster children. Careful monitoring of all types of foster care situations with special attention to problem behaviors and how to handle them could make this type of out-of-home-placement more effective. [ABSTRACT FROM AUTHOR]

Background Empirical research on homosexuality among people with an intellectual disability (ID) is limited and, to date, very little is known regarding the personal experiences of gay and lesbian people with an ID. This study set out to answer the question: What are the lived experiences of a specific cohort of homosexual people with an intellectual disability living in the Netherlands? Method To answer this question, a qualitative study was performed in which 21 people with a mild ID were interviewed via semi-structured interviews. In this study, 19 participants were men and two were women (average age = 40.5 years). Results Participants reported positive and negative experiences, and talked about their gay or lesbian identity. Almost half of the participants ( n = 10) reported that they had experienced sexual abuse including partner violence ( n = 6). Additionally, they indicated that there was a lack of support for homosexual people with an ID. Conclusion Specific problems impact the lives of homosexual people with ID, namely the high prevalence of negative sexual experiences, the lack of support, training and sex education, and their search for a suitable partner. [ABSTRACT FROM AUTHOR]