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AbstractObjectivesMethodResultsConclusionThis paper aimed to develop a model to describe help-seeking for dementia diagnosis. The practical model is intended to guide public health interventions to increase help-seeking.The model was developed by our multidisciplinary team based on qualitative semi-structured interviews in English (n = 33) and Chinese (n = 8) with older people, people with dementia and carers. The model was also informed by systematic reviews on help-seeking for dementia diagnosis, theories of help-seeking and further iterated based on feedback from a co-design group (n = 10).The model starts with changes which might be symptoms of dementia being observed by the person or family/friends and ends in dementia assessment. Model steps are (1) The person deciding that the changes represent a health problem; (2) obtaining support or confirmation from family/friends that the changes are a health problem; (3) deciding to seek medical help; and (4) persuading the GP to facilitate dementia assessment. The model applies to English and Chinese-speaking Australians, though there were additional barriers for Chinese speakers. There are personal, family, community and health system barriers at each step.Interventions to improve diagnosis of dementia might target public knowledge of dementia symptoms and benefits of a diagnosis, and general practice. [ABSTRACT FROM AUTHOR]

Borderline Personality Disorder (BPD) is a distressing mental illness that is overrepresented in adolescents and youth and which was previously thought difficult to treat. Families and carers of those with BPD can also experience high levels of distress and burden and can struggle in their support of those with BPD. The Families and Carers Training and Support (FACTS) program is an innovative skills and education program for family members and carers of someone with BPD informed by mentalisation‐based treatment (MBT) principles. To address a gap in the research, the present study aimed to see what effect, if any, a carer‐focused intervention has on the young people with BPD themselves. To assess this, interviews were conducted with eight young people whose family members participated in the program. Overall, the young people felt there had been positive changes during and after their family members' participation in the program. They felt the communication with their family members improved; they also felt more understood and that they had more space and freedom in the home and that the tension in the household decreased. Additionally, several young people felt they would have liked to be more involved in the process and to take part in the program alongside their family members. The findings indicate that interventions focusing on building understanding and self‐awareness in carers of those BPD can be important in ameliorating the challenging impact of BPD on young people and their families. [ABSTRACT FROM AUTHOR]

Background: Family carers of people living with comorbid dementia and cancer (CDC) play a vital supportive role, but this may be particularly burdensome and adversely impact their own health and wellbeing. Objective: To examine the experiences and psychosocial support needs of caregivers of people with CDC. Methods: A flyer advertising the study was distributed to relevant UK voluntary sector organisations and shared across social media. 13 carers of people with CDC were recruited. In-depth semi-structured interviews were conducted and transcripts were analysed using reflexive thematic analysis, underpinned by an inductive phenomenological approach. Results: Complex interactions of dementia and cancer resulted in heightened responsibility for carers, who played a crucial role in recognition/management of symptoms, performing difficult cancer-related care, and treatment decision-making that posed difficult ethical challenges. Care-recipients had reduced insight into their cancer diagnosis and prognosis, so carers often carried the emotional burden alone. Responsibilities faced by carers were compounded by a lack of targeted, accessible information/support for CDC. Carers expressed a desire to talk to and learn from others who understand the unique challenges of navigating cancer-related decision-making, treatment and care for people who are also living with dementia. Conclusions: Cancer alongside dementia presents complex challenges for carers, who desire more cancer-related information and support which is tailored to people living with dementia and their family caregivers. [ABSTRACT FROM AUTHOR]

In-depth understanding of dementia carer experience can assist clinicians by providing insight into dementia onset, symptoms and management, and help conceptualize and understand the pattern of dementia progress over time and what help is needed. We undertook a qualitative study to understand dementia carers experiences of providing care and reasons for admission to a residential aged care facility (RACF). Three themes were identified: (1) Challenges in the path to diagnosis and care, leading to delays accessing support; (2) Carer role impacted by living circumstances; and (3) Variation in decision support prior to admission to a RACF. Identifying dementia carer experiences, reinforces the need for more timely diagnosis, referral for support and interventions to promote better quality of life for a people living with dementia and their carer and to delay premature RACF placement. [ABSTRACT FROM AUTHOR]

Abstract Background People with different types of dementia may have distinct symptoms and experiences that affect their quality of life. This study investigated whether quality of life varied across types of dementia and over time. Methods The participants were 1555 people with mild-to-moderate dementia and 1327 carers from the IDEAL longitudinal cohort study, recruited from clinical services. As many as possible were followed for up to 6 years. Diagnoses included were Alzheimer’s disease, vascular dementia, mixed Alzheimer’s and vascular dementia, Parkinson’s disease dementia, dementia with Lewy bodies, and frontotemporal dementia. Self- and informant-rated versions of the Quality of Life in Alzheimer’s Disease scale were used. A joint model, incorporating a mixed effects model with random effects and a survival model to account for dropout, was used to examine whether quality of life varied by dementia type at the time of diagnosis and how trajectories changed over time. Results The strongest associations between dementia type and quality of life were seen around the time of diagnosis. For both self-ratings and informant ratings, people with Parkinson’s disease dementia or dementia with Lewy bodies had lower quality of life scores. Over time there was little change in self-rated scores across all dementia types (− 0.15 points per year). Informant-rated scores declined over time (− 1.63 points per year), with the greatest decline seen in ratings by informants for people with dementia with Lewy bodies (− 2.18 points per year). Conclusions Self-rated quality of life scores were relatively stable over time whilst informant ratings showed a steeper decline. People with Parkinson’s disease dementia or dementia with Lewy bodies report particularly low levels of quality of life, indicating the importance of greater attention to the needs of these groups.

Abstract Aim To explore the views and experiences of formal caregivers caring for older inpatients with physical disabilities. Methods It was a qualitative phenomenological study. Using purposive sampling, twelve formal caregivers were chosen in a tertiary comprehensive hospital in Hangzhou, China. Semi-structured, face-to-face interviews were conducted, guided by open-ended questions that focused on gaining rich insights into participants’ views and experiences. Coding reliability thematic analysis was used to guide data analysis and categorize, based on Lazarus and Folkman’s theory of transactional coping. Results Four themes emerged from the data analysis: (1) Caregiving Threats. (2) motivations. (3) Responsibility Management. (4) Fear. Conclusion Despite facing significant pressure at work, formal caregivers of elderly inpatients with physical disabilities possess the drive and various coping strategies to excel in their role. Identifying caregivers’ experiences of care can be helpful in improving resilience to stress and maintaining stability in formal caregivers.

AbstractThere is increasing need to strike a balance between minimizing online risks and encouraging independence and freedom of interaction amongst the young adult population, particularly those with preexisting vulnerabilities. This paper presents the findings from a study exploring how professionals working with care leavers understand social media and perceive their role in recognizing and responding to the online needs of this group. Qualitative data was collected during focus groups, arts-based workshops, and interviews with 17 professionals. Thirteen young adults with experience of leaving the care system in Scotland also provided insights into the impact of social media on their mental health and personal relationships. These multiple voices highlight that professionals could improve their understanding of social media platforms by moving away from risk management and harm minimization to adopt more individualized ways of enhancing online relationships. These views are reiterated by care leavers who perceive social media interactions as both a source of support and a cause of anxiety during complex transitions. Drawing upon the health and social work literature suggests that professionals should work in partnership with care leavers to establish training that acknowledges lived experiences and prioritizes resilience and social capital in the development of positive online interactions. [ABSTRACT FROM AUTHOR]

Background: Glioblastoma, a high-grade primary brain cancer, has a median survival of approximately 14 months. Post-mortem brain donation provides insight to pathogenesis along with spatial and temporal heterogeneity. Post-mortem brain biobanking programs are increasing in number and the need to understand and improve the associated human experience is pressing. This study aims to qualitatively explore the experiences of next of kin (NOK) following the death and brain donation of a loved one and to understand the impact such programs have on NOK carers. Method: We interviewed 29 NOK following the death of their loved one and subsequent brain donation. Thematic analysis was conducted on the transcribed, qualitative interviews. Results: Four themes were identified; (1) Brain donation is a straightforward decision grounded in altruism and pragmatism; (2) Supporting donors is a source of comfort, pride and empowerment; (3) Brain donation can provide meaning for suffering and tragedy and (4) Perceptions of procedures and processes when supporting a loved one to donate. Insights into areas for improvement, for example transporting donors following a home death and the role of the body bag were also noted. Conclusion: Supporting a loved one to donate their brain can be a positive experience providing a source of hope, empowerment and purpose for NOK. Data indicating areas for consideration are broadly relevant for improving the delivery of brain donation programs for future donors and their loved ones. Plain language summary: Understanding how loved ones feel about someone close to them donating their brain to research after their death from brain cancer The act of donating brain tissue after death from brain cancer is a huge gift to medical research and may have an impact on the ability of the scientific community to improve outcomes for people diagnosed with brain cancers. While we understand how valuable these donations are for research, we need more work to understand how these donations impact the people who donate and those who love and support them. This paper explores the experiences of people who have lost someone to brain cancer who then went on to donate their brain tissue after their death. Through the use of interviews, it explores the impact that the donation has on a loved one or next of kin from providing a source of comfort, empowerment, pride or an alternative to 'senseless' suffering and tragedy. It also provides areas that should be considered by people who are facilitating brain donations to ensure that any potential, harm or upset can be minimized. [ABSTRACT FROM AUTHOR]

Purpose: To explore how health professionals provide information to informal carers during inpatient stroke rehabilitation and whether these practices align with adult learning principles. Methods: Informal carers and survivors of stroke who had completed inpatient rehabilitation, and health professionals working in inpatient stroke rehabilitation were interviewed. Directed qualitative content analysis was conducted using an adult learning model, to determine how closely reported practices aligned to adult learning principles. Results: 14 carers, 6 survivors of stroke and 17 health professionals participated. Carers (79% female, 57% spouse/partner) reported having incomplete knowledge during rehabilitation, lacking information about mechanisms of stroke recovery, rehabilitation processes, long-term effects of stroke, and navigating post-discharge services. Health professionals supported carers to address their learning needs related to safety of caring for stroke survivors. Carers indicated they were responsible for their own non-safety related learning. Health professionals tended not to check carers' understanding of information provided nor offer learning opportunities beyond written or verbal information. Conclusions: Health professionals consistently provide certain information to carers during inpatient rehabilitation, but adult learning principles are not routinely applied when information is provided. Fostering adult learning among informal carers may improve preparedness of carers to support stroke survivors after discharge from inpatient rehabilitation. IMPLICATIONS FOR REHABILITATION: Carers reported often being in a state of shock in the early post-stroke period, and may need extra support to remember, understand, and apply information. Carers are often highly motivated to acquire immediate and relevant information tailored to their situation. Interactions between health professionals and carers are learning opportunities that can assist the carer to commence their unexpected and significant learning journey. Health professionals should apply adult learning principles when communicating with carers on all topics, not just topics important to the healthcare team such as patient safety and requirements for discharge. [ABSTRACT FROM AUTHOR]

Purpose: To explore the literature on carer-supported home-based exercise programs for people after stroke, as a form of physical activity. The review focus was to examine the training carers receive, the content of programs, and investigate the physical activity levels and functional mobility of people after stroke. Materials and Methods: A scoping review was undertaken, guided by Joanna Briggs Institute methodology. The concept of home-based carer-supported exercise, in people after stroke, was searched across five databases. Outcomes of interest were physical activity levels and functional mobility. Results: We screened 2285 references and included 10 studies: one systematic review, five randomised controlled trials, one trial with non-equivalent control, and four uncontrolled studies. Carer training ranged from one to twelve sessions. Exercise interventions commonly including walking, other whole body functional exercises and balance activities. In eight studies interventions were in addition to standard care. Five studies reported significant between-group differences for functional mobility, favouring the intervention. One study reported physical activity levels. Conclusion: There was large variation in the volume and content of training provided to carers. Physical activity levels were infrequently objectively reported. Future studies should include greater details on their protocols to allow for replication and implementation into clinical practice. IMPLICATIONS FOR REHABILITATION: Carer-supported home-based exercises may improve functional mobility once home after a stroke. The optimal length, content, and model of delivery of carer training, so carers can provide better targeted home-based exercise support to people after stroke, is not known. Better monitoring of participation in home-based exercise and reporting of short and long-term physical activity is needed. [ABSTRACT FROM AUTHOR]

Understandings of tourists' contemporary information needs that emphasize spontaneous travel decision-making and tourism as an exclusively pleasurable experience do not account for the contexts of people with dementia and their carers, for whom travelling requires unique adaptations. Through netnography in four online fora, this paper investigates the hitherto under-researched travel information needs of informal carers of people living with dementia. The qualitative data highlights the breadth of pre-travel information needs and their strong emotional dimensions both when carers plan to travel with and without the person with dementia for whom they care. Our analysis uncovers the complex, interdependent nature of travel-related information queries which refer not only to narrow tourism themes but also to health, healthcare and social policy. This exploratory paper concludes with recommendations for addressing the travel information needs of this globally growing category of people, wherein collaboration across destinations, tourism and hospitality industries, the healthcare sector and other stakeholders may be required. [ABSTRACT FROM AUTHOR]

Evidence on management of behavioral symptoms in motor neuron disease (MND) is lacking. The MiNDToolkit, an online psychoeducational platform, supports carers dealing with behavioral symptoms (BehSymp). The study objectives were to ascertain recruitment and retention rates, carer and healthcare professional (HCP) use of the platform, and completion of online assessments, to inform a full-scale trial. Design: Randomized, parallel, multi-center, feasibility trial. England and Wales, across diverse MND services; recruitment from July/21 to November/22; last participant follow-up in March/23. Carers of people with motor neuron disease (PwMND) with BehSymp, recruited through MND services. After confirming eligibility, participants completed screening and baseline assessments online via the MiNDToolkit platform and were randomized centrally in a 1:1 ratio to MiNDToolkit or control. MiNDToolkit offered tailored modules to carers for the 3-month study period. Carers in the intervention group could receive additional support from MiNDToolkit trained HCPs. The control group was offered access to the intervention at the end of the study. Data were collected on platform usage and psychosocial variables. One hundred and fifty-one carers from 11 sites were invited to join the study (letter, face-to-face); 30 were screened; 29 were randomized. Fifteen people were allocated to the control arm; 14 to intervention. Carers were mostly female; median age for was 62.5 (IQR: 58, 68; intervention) and 57 (IQR: 56, 70; controls). Study retention was high (24/29 = 82.76%); carers engaged with the platform on average 14 times (median (IQR):14.0 (10.0, 18.5)) during the study period. The MiNDToolkit study was feasible and well accepted by carers and trained HCPs. A definitive trial is warranted. [ABSTRACT FROM AUTHOR]

Objectives Understanding what influences changes over time in caregiver well-being is important for the development of effective support. This study explores differences in trajectories of caregiver stress and positive aspects of caregiving (PAC). Methods Caregivers of community-dwelling individuals with mild-to-moderate dementia at baseline from the IDEAL cohort were interviewed at baseline (n  = 1,203), 12 months (n  = 917), and 24 months (n  = 699). Growth mixture models identified multiple growth trajectories of caregiver stress and PAC in the caregiver population. Associations between study measures and trajectory classes were examined using multinomial logistic regression and mixed-effects models. Results Mean stress scores increased over time. A 4-class solution was identified: a "high" stable class (8.3%) with high levels of stress, a "middle" class (46.1%) with slightly increasing levels of stress, a "low" class (39.5%) with initial low levels of stress which slightly increased over time, and a small "increasing" class (6.1%) where stress level started low but increased at a steeper rate. Mean PAC scores remained stable over time. A 5-class solution was identified: 3 stable classes ("high," 15.2%; "middle," 67.6%; "low" 9.3%), a small "increasing" (3.4%) class, and 1 "decreasing" class (4.5%). For stable classes, positive ratings on study measures tended to be associated with lower stress or higher PAC trajectories and vice versa. Those with "increasing" stress also had worsening trajectories of several study measures including depression, relationship quality, competence, and ability to cope. Discussion The findings highlight the importance of identifying caregivers at risk of increased stress and declining PAC and offering them targeted support. [ABSTRACT FROM AUTHOR]

Les jeunes adultes aidants sont des personnes de 18 à 25 ans qui fournissent de manière régulière du soutien ou de l'assistance à un proche avec une maladie ou en situation de handicap et constituent une population spécifique peu étudiée. Le soutien émotionnel est un soutien particulièrement apporté par ces jeunes et peut être une activité d'aide difficile à fournir du fait de l'investissement psychologique et émotionnel qu'elle nécessite. À l'heure actuelle, le soutien émotionnel est un soutien difficile à définir et à mesurer, en témoignent les outils existants qui semblent limités. Cette étude vise à explorer les caractéristiques du soutien émotionnel apporté par les jeunes adultes aidants. Treize entretiens semi-directifs auprès de jeunes adultes aidants ont été réalisés et les données ont fait l'objet d'une analyse thématique. Les résultats montrent que le soutien émotionnel revêt différentes formes : proposer des activités, être présent, apporter une protection émotionnelle, aider le proche à réguler ses émotions et être un interlocuteur privilégié pour le proche aidé. Ils montrent aussi que le fait d'apporter du soutien émotionnel peut avoir des retentissements sur le bien-être de ces jeunes. Les résultats permettent une meilleure compréhension du soutien émotionnel apporté par les jeunes adultes aidants et soulignent la nécessité de prendre en compte ces résultats à des fins cliniques. À des fins de recherche, ces résultats pourraient également contribuer à l'amélioration des outils d'évaluation des activités d'aide en y intégrant les aspects du soutien émotionnel de manière plus précise et exhaustive. Young adult carers are individuals between the ages of 18 and 25 who regularly provide support or assistance to a relative with an illness or disability, representing a specific and understudied population. Emotional support, frequently provided by these individuals, can be challenging due to the psychological and emotional investment it requires. Currently, emotional support is difficult to define and measure, as evidenced by the limited existing tools. This study aims to explore the characteristics of emotional support provided by young adult carers. Thirteen semi-structured interviews were conducted with young adult caregivers, and a thematic analysis was performed. The results show that emotional support manifests in multiple actions: suggesting activities, being present, offering emotional protection, assisting the relative in regulating their emotions, and being a privileged interlocutor for the relative. They also show that providing emotional support can have impacts on the well-being of these youth. These findings offer a better understanding of the emotional support provided by young adult caregivers and emphasize the need to consider them for clinical settings. For research purposes, these results could also contribute to improving evaluation tools for caregiving activities by incorporating aspects of emotional support more precisely and comprehensively. [ABSTRACT FROM AUTHOR]

This exploratory qualitative study aimed to find out more about how the children's social work system interacts with non-binary parents. It highlights the specific detriment that can be faced by non-binary people hoping to adopt or foster in the United Kingdom. Three key themes emerged: (1) Barriers for non-binary carers, (2) Prejudice in adoption and fostering matching processes and (3) Intersectional disadvantage. The study found that non-binary people experience specific detriment when endeavouring to start or grow their families, examining how cisgenderism operates to privilege some identities over others. Multiple barriers affect the way non-binary people try and navigate how their family lives in a society that is organised around binary gender identities. Cisgenderism can subtly and pervasively exert a devaluing of identities that sit outside of entrenched binary gender norms, influencing how people can understand and express their gender identities within society. [ABSTRACT FROM AUTHOR]

Introduction Methods Consumer and Community Involvement Results Conclusion Plain language summary The purpose of this study was to examine the feasibility of adapting and translating an evidence‐based occupational therapist‐delivered program shown to be effective in the community to residential aged care (RAC). The program aims to improve quality of care and quality of life for people living with dementia and the wellbeing of the family care partner.This study took place in a not‐for‐profit RAC home in Adelaide, South Australia. Mixed methods, specifically questionnaires, activity logs, focus group, and one‐on‐one interviews were used to evaluate the feasibility of the program implementation. Staff working in the participating home, occupational therapists trained to deliver the program, and residents and their family carer partners were included. Quantitative data were analysed using proportions, means, and standard deviations. Qualitative data were analysed using a thematic approach.This study was conducted together with a consumer (person living with dementia) and a carer representative (family member of someone residing in RAC). These representatives provided input towards the study design, interpretation of study data, discussion of results, and recommendations for future consideration.Small changes to the program improved feasibility and acceptability for delivery in RAC. While the care home staff required added support during implementation, the intervention therapists felt that the program could be delivered in this setting. Family care partners of residents with dementia felt that the program may be better suited if provided upon entry to RAC or in early stages of dementia.Adapting a community‐based dementia care program to RAC can be safe and feasible. Program adaptations are necessary for feasibility. Further adaptations and evaluations of associated outcomes (related to residents with dementia and their family care partners) are needed to assess the program effectiveness in larger scale.Spending quality time with family members in residential aged care is important. However, many struggle to know what to say or do when visiting a family member who lives with dementia. Programs that teach families about how to communicate with people living with dementia, how to support them to take part in important everyday living activities, or how to understand why changes in behaviours may occur have not been available in residential aged care. This paper describes how we adapted one such evidence‐based program from community to residential aged care settings. We consulted with people living with dementia, carers, and families and found that the program could also be valuable in this care setting. Residential aged care staff described how the program is very different to what is usually available in residential aged care, but they were optimistic that with the right support, it could be a valuable way to support residents with dementia and their families. Family members of residents with dementia and therapists delivering the program felt that residents in early stages of living in residential aged care and/or early stages of dementia could benefit the most from these programs. We found that including family members in the intervention process can be useful and empowering for families and residents. Future work should also focus on involving other staff members caring for residents in the process. Communication between staff and families is the key for program delivery and success and treating each person as an individual. [ABSTRACT FROM AUTHOR]

Background: People with different types of dementia may have distinct symptoms and experiences that affect their quality of life. This study investigated whether quality of life varied across types of dementia and over time. Methods: The participants were 1555 people with mild-to-moderate dementia and 1327 carers from the IDEAL longitudinal cohort study, recruited from clinical services. As many as possible were followed for up to 6 years. Diagnoses included were Alzheimer’s disease, vascular dementia, mixed Alzheimer’s and vascular dementia, Parkinson’s disease dementia, dementia with Lewy bodies, and frontotemporal dementia. Self- and informant-rated versions of the Quality of Life in Alzheimer’s Disease scale were used. A joint model, incorporating a mixed effects model with random effects and a survival model to account for dropout, was used to examine whether quality of life varied by dementia type at the time of diagnosis and how trajectories changed over time. Results: The strongest associations between dementia type and quality of life were seen around the time of diagnosis. For both self-ratings and informant ratings, people with Parkinson’s disease dementia or dementia with Lewy bodies had lower quality of life scores. Over time there was little change in self-rated scores across all dementia types (− 0.15 points per year). Informant-rated scores declined over time (− 1.63 points per year), with the greatest decline seen in ratings by informants for people with dementia with Lewy bodies (− 2.18 points per year). Conclusions: Self-rated quality of life scores were relatively stable over time whilst informant ratings showed a steeper decline. People with Parkinson’s disease dementia or dementia with Lewy bodies report particularly low levels of quality of life, indicating the importance of greater attention to the needs of these groups. [ABSTRACT FROM AUTHOR]

Aim: To explore the views and experiences of formal caregivers caring for older inpatients with physical disabilities. Methods: It was a qualitative phenomenological study. Using purposive sampling, twelve formal caregivers were chosen in a tertiary comprehensive hospital in Hangzhou, China. Semi-structured, face-to-face interviews were conducted, guided by open-ended questions that focused on gaining rich insights into participants' views and experiences. Coding reliability thematic analysis was used to guide data analysis and categorize, based on Lazarus and Folkman's theory of transactional coping. Results: Four themes emerged from the data analysis: (1) Caregiving Threats. (2) motivations. (3) Responsibility Management. (4) Fear. Conclusion: Despite facing significant pressure at work, formal caregivers of elderly inpatients with physical disabilities possess the drive and various coping strategies to excel in their role. Identifying caregivers' experiences of care can be helpful in improving resilience to stress and maintaining stability in formal caregivers. [ABSTRACT FROM AUTHOR]

Antipsychotics are routinely prescribed to people diagnosed with schizophrenia or psychosis on a long-term basis. Considerable literature explores service users' opinions and experiences of antipsychotics, but studies investigating family members' views are lacking. To explore family members' perspectives on antipsychotics, particularly their views on long-term use, reduction and discontinuation of antipsychotics. Semi-structured interviews were conducted with 11 family members of people experiencing psychosis. Participants were recruited through community support groups and mental health teams. Interviews were analysed thematically. The majority of family members valued antipsychotic medication primarily in supporting what they saw as a fragile stability in the person they cared for. Their views of medication were ambivalent, combining concerns about adverse effects with a belief in the importance of medication due to fears of relapse. They described a need for constant vigilance in relation to medication to ensure it was taken consistently, and often found changes, particularly reduction in medication difficult to contemplate. Findings highlight that family members' attitudes to medication sometimes conflict with those of the people they care for, impacting on their health and the caring relationship. Family members may need more support and could be usefully involved in medication decision-making. [ABSTRACT FROM AUTHOR]

Aims: (a) To investigate support for caregivers of people diagnosed with stroke, cancer, chronic obstructive pulmonary disease (COPD), dementia, or heart disease provided across healthcare settings in Denmark; (b) to assess differences in caregiver support across diagnoses and settings. Methods: A cross-sectional nationwide survey among professionals representing healthcare settings at municipalities (n = 479) and hospital wards and outpatient clinics (n = 425). The survey assessed identification of caregivers and support initiatives. Results: The response rate was 81% for municipalities and 49% for hospitals. Identification of caregivers was frequent in dementia care (81% and 100%) and less frequent in COPD care (58% and 64%) in municipalities and hospitals, respectively. Caregiver support differed significantly across diagnoses within municipalities (p = 0.009) and hospitals (p < 0.001). Systematic identification of vulnerable caregivers was <25% for all diagnoses except dementia. The most common support initiatives involving caregivers were primarily aimed at the ill person and included guidance about the disease and consequences for everyday life and lifestyle changes. Caregivers were least involved in support initiatives addressing physical training, work retention, sexuality, or cohabitation. Conclusions: Disparities and significant differences across diagnoses exist in the identification of caregivers and the provision of support initiatives. Support initiatives involving caregivers primarily targeted patients. Future studies should investigate how caregivers' needs can be met across different diagnoses and healthcare settings and investigate potential changes in caregivers' needs during disease trajectories. In clinical practice, identification of vulnerable caregivers should be a major focus, and disease-specific clinical guidelines may be required to ensure sufficient support for caregivers. [ABSTRACT FROM AUTHOR]

Objectives: Our aims were to examine whether an experiential course for care partners of people living with dementia, Empowered Conversations (EC), was acceptable to participants and to explore participants' perceptions of the impact of the course upon their communicative interactions. EC is based on an integrative model derived from psychological and linguistic theory and empirical evidence. EC is based on mentalisation theory, perceptual control theory and linguistic theory (The Communicative Impact Model). Methods: Qualitative data were collected via 28 semistructured interviews. Framework analysis was used to analyse data. Results: Three superordinate themes, 'improved communication', 'improved well-being' and 'support through others' were identified. Twenty-seven out of the 28 participants described feeling that they were able to better connect with the person living with dementia that they were supporting through attending EC. Conclusions: The findings indicated that EC was acceptable and beneficial to care partners. Care partners developed a range of strategies and understandings that enabled them to communicate better with the person they were supporting, enhanced well- being and relationships, as well as developing social networks. This is the first qualitative study to examine a psychosocial intervention for care partners of people living with dementia using a non- CBT framework and indicates that perceived control could influence how care partners respond to stress and difficulties. [ABSTRACT FROM AUTHOR]

Background As healthcare recipients and individuals affected by antimicrobial resistance (AMR), patients and their carers can be engaged in infection prevention and control (IPC) and antimicrobial stewardship (AMS) initiatives to manage AMR. To effectively participate in these initiatives, patients and carers need to understand general terms used in infection care. We explored awareness of commonly used infection-related terms among patients and carers in the surgical out-patient of a tertiary academic hospital. Methods Self-administered paper survey distributed among out-patients from August to September 2022. Categorical variables were analysed using Chi squared test. Significance was set as p-value of < 0.05. Content analysis identified terms commonly used by patients when talking about infections. Results Overall, 896 out of 1,269 respondents (response rate 70.6%), with a 1:3 male to female ratio were included. Most respondents were patients (75%), with a minimum of high school education (91.2%) and a surgical history (60.3%). Surgical wound infection was the most familiar term to participants. While many respondents had not heard of Methicillin-resistant Staphylococcus aureus (MRSA) (92.3%, n=754) or antimicrobial resistance (92.8%, n=755), significantly more were aware of the descriptions provided for these terms (13.7% and 33.0%, respectively; p

Abstract Background Carers of patients with advanced organ failure (AOF) experience a tremendous caregiving burden. Social capital utilizes the internal strength of a community to support its members and may provide carers with comprehensive support. This study aimed to identify the different sources of social capital that can support carers of patients with AOF from the perspectives of stakeholders. Method A descriptive qualitative study was conducted in community settings from April 2021 to May 2022. Stakeholders from medical social work departments, self-help groups, and non-governmental organizations were recruited, while some community members were invited through online media platforms. Individual semi-structured interviews were conducted using an interview guide. Interview transcripts were analyzed using a qualitative description approach. In total, 98 stakeholders, including 25 carers, 25 patients, 24 professionals, and 24 community members, were recruited using purposive and snowball sampling. Results Six categories about social capital for carers emerged, namely, carer attributes, the community, social care services, healthcare services, information, and policies. While the attributes of carers and their relationships with care recipients had a significant influence on caregiving, support from different groups in the community, such as neighbors and employers, was valued. Good communication of information about caregiving and social services was emphasized as being helpful by carers and other stakeholders. While carers presented a need for various healthcare and social care services, several features of these services, including their person-centeredness and proactive reach, were deemed useful. At the societal level, policies and research on comprehensive supportive services are warranted. The different sources of social capital constitute a multi-layer support system in the community. Conclusion Carers can utilize personal attributes, interpersonal relationships, community resources, and societal contexts to enhance their caregiving. While this system can serve as a framework for building carer-friendly communities, interventions may be required to strengthen some aspects of social capital.

Critical realism is a framework that explains causations of observable events. It is useful in exploring and explaining complex nursing phenomena. It is grounded in the stratification of reality and the understanding that the world is complex, open, and has interactions that support or cancel each other whether we observe it or not. It can be used as a theoretical foundation of case study approach, an in-depth inquiry that seeks to understand a particular phenomenon within specific settings. This paper introduces the basic concepts of critical realism and how it can inform a qualitative case study methodology. To support this approach, we present a study on caregiving experiences for older people with dementia from culturally and linguistically diverse backgrounds which we believe highlights the value of combining critical realism and case study to inform future nursing research. [ABSTRACT FROM AUTHOR]

Introduction: In young adults with anorexia nervosa (AN), the process of transition from a child and adolescent mental health service (CAMHS) to an adult mental health service (AMHS) has been recognized as critical, and many patients fear falling through the gap between the two types of service. As reports about the transition process in emerging adults with AN are scarce, the present study aimed to explore the problems and experiences of this age group. Method: We screened our registry for patients with AN who had been treated as inpatients during childhood and/or adolescence and come of age during the last 3 years. Thirty‐two female patients [mean age 20.3 (1.2) y.] agreed to participate in a semistructured personal or telephone interview assessing their demographic and clinical data, whether they had finalised the transition, and their wishes and experiences regarding the transition process. Results: Only approximately one‐third of the participants had already undergone the transition. Nearly 60% of the former patients were still cared for by a CAMHS, and only 12.5% had stopped treatment for AN. Approximately 60% were exclusively or additionally cared for by their general practitioner. More than 50% of the participants still lived with their parents. Approximately 90% of the participants who remained in a CAMHS expressed concerns about transitioning, mostly about losing their trusted therapist and the assumption of personal responsibility. Conclusion: Patients with AN often delay the transition from a CAMHS to an AMHS, which they experience as intimidating and overwhelming. Thus, patients should be better prepared for the transition, which should be linked to "developmental readiness" and not to chronological age. Because many patients still live with their family of origin, parents and their family physician should be closely involved in the transition process. Highlights: Patients with anorexia nervosa (AN) often experience the transition from child‐oriented services to adult‐oriented services as challenging and thus try to delay the process.The majority of patients with AN want to continue their treatment with their trusted well‐known psychotherapist.More specialised and individualised treatments for emerging adults with AN are urgently needed. [ABSTRACT FROM AUTHOR]

The spread of COVID-19 resulted in restrictive lockdowns. For families supporting young people with autism spectrum disorder (ASD), the service system was stripped away. The aim of this study was to explore the impact of this challenging situation on a group of Australian carers and parents of children and young people with ASD, with an intention to inform policy and practice based on the lived experiences of these families. A survey of parents of children and young people with ASD in Australia returned 117 responses, of which 86 responded to open-ended questions about COVID-19 lockdowns. Twelve parents responded to the invitation to be interviewed. Interview and survey data were analysed thematically. Five themes emerged: accessing support services, receiving support services online, changes in behaviour, higher levels of conflict, and impact on health and relationships. The experience of lockdowns under COVID-19 undermined informal and formal support systems, and had a particularly strong negative impact on the experiences of children with ASD and their families. These findings also provide support for understanding the social model of disability as a mainstay in the lives of children with disabilities and their carers. IMPLICATIONS The social model of disability was dismantled for children and young people and their carers during the COVID crisis. This unacceptable attack on the human rights of disabled people (people with a disability) needs future planning to ensure that it does not occur again. Future crises require more nuanced policy and practice responses that do not close off all child and family supports to children with ASD and their carers. [ABSTRACT FROM AUTHOR]

The primary aim of this paper was to understand expressed emotion (EE) and its relationship to wellbeing in South Asians (SAs) living in the UK. A total of 529 participants of South Asian heritage were recruited from the UK and completed an online survey consisting of the family questionnaire, the level of expressed emotion scale (LEE), warmth measure, the hospital anxiety and depression scale. Components of EE and wellbeing were investigated using network analysis. Overall, the participants were classified as low EE for criticism, but high for emotional overinvolvement. They scored relatively high on the warmth scale. LEE scores were in the middle range. The network analysis revealed unique associations between EE subscales and symptoms of depression and anxiety, and highlighted positive aspects of EE. The network analysis also highlighted differences in EE between parents and partner. The findings provide an overview of the interactions and influence of EE variables within this population. Future research should focus on the differences between SA ethnicities and religions; differentiating between intrusive and non-intrusive involvement may help further explain part of the variance between variables; exploring first and second-generation immigrants would help discover the impact of acculturation and intergenerational trauma on EE. [ABSTRACT FROM AUTHOR]

IntroductionAimsMethodsResultsConclusionsMinds Together is a novel online early intervention program developed for carers of a person with depressive or anxiety symptoms. A previous study indicated the feasibility, acceptability and initial trends in efficacy for this support program.The current study used a parallel RCT design to explore the effect of adding a social support platform to this program on carers’ quality of life and perceived social support outcomes.127 carers (82% female), living in Australia, were recruited online and randomly allocated to the program alone, or program paired with the social forum. Participants completed surveys at baseline, post and 3-month follow up.Intervention and survey completion were low for this study. Across both groups, 49% completed the program and 20% used the social forum. Similarly, 42 participants completed post-surveys and 43 completed follow up surveys. The overall intervention effect between groups was non-significant for quality of life (p-value = 0.773) and perceived social support (p-value = 0.931).This is the first RCT to evaluate the effects of adding a social support component to an existing support program for carers of a person with depressive or anxiety symptoms. While unable to draw conclusions about the added social support, the study emphasises the urgent need for collaboration between researchers, consumers and sector professionals to address challenges related to missing data in online health intervention research. [ABSTRACT FROM AUTHOR]

Background: Carers of patients with advanced organ failure (AOF) experience a tremendous caregiving burden. Social capital utilizes the internal strength of a community to support its members and may provide carers with comprehensive support. This study aimed to identify the different sources of social capital that can support carers of patients with AOF from the perspectives of stakeholders. Method: A descriptive qualitative study was conducted in community settings from April 2021 to May 2022. Stakeholders from medical social work departments, self-help groups, and non-governmental organizations were recruited, while some community members were invited through online media platforms. Individual semi-structured interviews were conducted using an interview guide. Interview transcripts were analyzed using a qualitative description approach. In total, 98 stakeholders, including 25 carers, 25 patients, 24 professionals, and 24 community members, were recruited using purposive and snowball sampling. Results: Six categories about social capital for carers emerged, namely, carer attributes, the community, social care services, healthcare services, information, and policies. While the attributes of carers and their relationships with care recipients had a significant influence on caregiving, support from different groups in the community, such as neighbors and employers, was valued. Good communication of information about caregiving and social services was emphasized as being helpful by carers and other stakeholders. While carers presented a need for various healthcare and social care services, several features of these services, including their person-centeredness and proactive reach, were deemed useful. At the societal level, policies and research on comprehensive supportive services are warranted. The different sources of social capital constitute a multi-layer support system in the community. Conclusion: Carers can utilize personal attributes, interpersonal relationships, community resources, and societal contexts to enhance their caregiving. While this system can serve as a framework for building carer-friendly communities, interventions may be required to strengthen some aspects of social capital. [ABSTRACT FROM AUTHOR]

Purpose: It is a half‐century since the coalescence of social psychiatry and systemic family therapy approaches started to inform condition‐specific therapeutic work with families to reduce relapse and hospital readmission for people with schizophrenia. Today, family interventions are a cornerstone of international guidelines for the treatment of psychosis, and of workforce development initiatives. Effect sizes for clinical and economic outcomes are large, and the evidence base is robust and reliable, not only for outcomes but also for the underpinning theoretical models, which are coherent and consistent. Few, if any, psychological therapies, have so powerful a framework to drive widespread implementation. Nevertheless, delivery in clinical services is variable, often lagging behind that of individual cognitive behavioural therapy, notwithstanding its considerably weaker implementation framework. Our aim in this article is to formulate this translation failure and offer potential solutions. Method: We summarise the model/intervention and supporting evidence, then consider why delivery remains problematic. Results: We highlight the inter‐linked issues of conceptual confusion between and conflation of, different approaches to working with families; of addressing diagnostic uncertainty, complex comorbidity and adapting interventions for specific populations; and of translation from gold‐standard research trial practice, through educational curricula and training programmes, to routine delivery in frontline services. Conclusion: We present our view of clinical, research and workforce development priorities to address these issues and continue the collective effort, moving into the next half‐century, to work more effectively with people with psychosis and their families, to further improve outcomes. [ABSTRACT FROM AUTHOR]

This scoping review focuses on how the caregiving experience of unpaid carers of persons with schizophrenia (CPSs) is understood in the literature. One hundred and eighteen studies were included. Publications have steadily increased over the past two decades. Most studies were derived from India, the UK, and China and were quantitative research. Financial problems, disruption to social life, and family relationships were commonly evaluated to be objective burdens, while care recipients relapsing, CPSs suffering from violence from care recipients, and experiencing discrimination were identified as subjective burdens. The effectiveness of care services and the positive feelings and physical impacts of CPSs need to be further discussed. [ABSTRACT FROM AUTHOR]

Abstract Background Music therapy interventions with informal carers of individuals with life-threatening illness at pre- and post-bereavement is an increasingly important clinical area. This systematic review is the first to synthesise and critically evaluate the international evidence associated with music therapy with adult informal carers pre- and post-bereavement. Specifically, the objectives were: i) to describe the characteristics and effectiveness of music therapy interventions which aim to improve health-related outcomes for adult informal carers of adults with life-threatening illness (pre- and post-bereavement), and ii) to describe the experience of music therapy for adult informal carers of adults with life-threatening illness (pre- and post-bereavement). Methods Eligibility: adult informal carers of adults at end of life or bereaved; music therapy interventions for improving health-related outcomes; qualitative; mixed-method; and quantitative studies including comparators of any other intervention; published in English from 1998 onwards. Six databases were searched up to July 2022. A JBI mixed-methods systematic review approach was followed throughout, including quality appraisal, data extraction and a convergent segregated approach to synthesis and integration. Results A total of 34 studies were included, published between 2003 and 2022. Most were conducted in North America (n = 13), Australia (n = 10), or Europe (n = 8). No studies were conducted in low- and middle-income countries or in the UK. The majority were qualitative (n = 17), followed by quasi-experimental (n = 8), mixed-methods (n = 7) and two RCTs. The majority focused on carers of individuals with dementia (n = 21) or advanced cancer (n = 7). Seventeen studies were purely quantitative or included a quantitative component. During meta-synthesis, findings were aligned to core outcomes for evaluating bereavement interventions in palliative care and previously identified risk factors for complicated grief. Commonly targeted outcomes in quantitative studies included quality of life and mental wellbeing, showing equivocal effectiveness of music therapy with significant and non-significant results. Twenty-two studies either purely qualitative or with a qualitative component underwent meta synthesis and suggested a diverse range of improved pre- and post-bereavement outcomes for informal carers across all core outcomes, and across all risk and protective factors, including psychological, spiritual, emotional, and social outcomes. Conclusions Qualitative studies provide moderate to strong evidence for improved health-related outcomes for adult informal carers of adults with life-threatening illness pre-bereavement. Limited studies including those bereaved negates conclusions for the bereavement phase. Comparisons and explanations for effectiveness across quantitative and qualitative studies are equivocal, with a high risk of bias and small samples in the limited number of quantitative studies, demonstrating a need for high-quality RCTs. Systematic review pre-registration PROSPERO [CRD42021244859].

Abstract Background New technologies have brought about a new age of technology-enabled aids that can equip informal carers with the relevant resources for better care. These include but are not limited to facilitating access to healthcare providers, knowledge of caring for persons living with dementia, and sources of support for carers’ well-being. This qualitative study explores barriers to using eHealth/mHealth platforms and perceived beneficial eHealth/mHealth platform features among informal carers of persons living with dementia. Methods An exploratory qualitative study design was employed. Semi-structured interviews were conducted among 29 informal carers of persons living with dementia in Singapore recruited via convenience and snowball sampling. The interviews were audio-recorded and transcribed verbatim. Thematic analysis was used to analyse the data. Results The participants in this study identified several barriers to using eHealth/mHealth platforms, including personal preference, apprehension, poor user experience and lack of skills. On the other hand, knowledge of dementia, caring for persons living with dementia and self-care, a list of resources, social support, location monitoring and alert systems, and the ability to manage appointments and transactions were valuable features for eHealth/mHealth platforms. Conclusions Despite the underutilisation of eHealth/mHealth platforms, carers expressed a keen interest in using them if they are functional and capable of reducing their care burden. The findings from this study can contribute to developing content and features for eHealth/mHealth interventions aimed at lightening carers’ burden in their day-to-day caring routine.

Abstract Background Chronic conditions can lead to physical, cognitive and social decline; thus, increasing an individual's dependence on family who assist with activities of daily living. Interprofessional collaborative practice (IPCP), involving two or more health professionals working with the patient and their family, is one model of care for the high‐quality management of individuals with chronic conditions in primary care. Nevertheless, family carers have reported a disconnect between themselves and healthcare providers in previous research. This study aimed to explore the experiences and perspectives of family carers for individuals with chronic conditions, regarding their involvement in IPCP. Methods Aspects of constructivist grounded theory methodology were used. Family carers of individuals with chronic conditions were invited to participate in a one‐on‐one, semistructured interview about their experiences with IPCP in the care of their loved one. Interview transcripts were analysed using Charmaz's four‐step iterative process: (1) line‐by‐line coding, (2) focused coding, (3) categorisation of codes and (4) potential theme and subtheme development with memo writing to support each phase of analysis. The research team collaborated on reflexivity exercises, the conceptualisation of categories and the development of themes. Results Constructivist data analysis of interviews (average 40 min) with 10 family carers resulted in two themes. (1) Stepping in for my loved one represents the notion that carers take on external roles on behalf of their loved ones (subthemes: working with interprofessional teams, supporting independence and learning as I go). (2) Taking on the carer role, represents the internal factors that influence the external roles described in theme 1 (subthemes: feeling obligated to be involved and changing relationship dynamics). Conclusion This study outlines the external actions and internal influences on family carer involvement in an interprofessional team. The required knowledge and support to care for their loved ones is currently learned in an ad hoc manner, and carers' resources should be better promoted by health professionals. Additionally, the relationship dynamics between a carer and their loved one change as the carer becomes more involved in IPCP and influences how and the extent health professionals involve family carers. Patient or Public Contribution Carers were the study population involved in this qualitative study. Patient advocates who have chronic conditions, and are informal family carers, were involved in the creation and design of this study, including a review of the research question, participant information sheet and the interview guide.

Abstract Introduction Older carers or ‘care partners’ of older people experiencing care needs often provide essential support, at times while neglecting their own health and well‐being. This is an increasingly frequent scenario due to both demographic changes and policy shifts towards ageing in place. Multiple community stakeholders within the care and support ecosystem hold valuable expertise about the needs of older care partners, and the programme and policy responses that may better support their health and well‐being. The aim of this study was to identify the perspectives of stakeholders obtained through the codesign phase of a multicomponent research project investigating new models of care and support for older care partners suitable for the Australian context. Methods Principles of codesign were used to engage a purposeful sample of older care partners, health professionals, researchers, policy makers and health service administrators. Participants took part in a series of three codesign workshops conducted remotely via video conferencing. The workshops were supported with briefing material and generated consensus‐based summaries, arriving at a preferred service model. Findings This paper reports the research design and structure of the codesign panels, the range of findings identified as important to support the health and well‐being of older carers of older people, and the resulting service model principles. The codesigned and preferred model of care is currently being prepared for implementation and evaluation in Australia. Public Contribution This study was conducted using codesign methodology, whereby stakeholders including older care partners and others involved in supporting older carers, were integrally involved with design, development, results and conclusions.

Background: Music therapy interventions with informal carers of individuals with life-threatening illness at pre- and post-bereavement is an increasingly important clinical area. This systematic review is the first to synthesise and critically evaluate the international evidence associated with music therapy with adult informal carers pre- and post-bereavement. Specifically, the objectives were: i) to describe the characteristics and effectiveness of music therapy interventions which aim to improve health-related outcomes for adult informal carers of adults with life-threatening illness (pre- and post-bereavement), and ii) to describe the experience of music therapy for adult informal carers of adults with life-threatening illness (pre- and post-bereavement). Methods: Eligibility: adult informal carers of adults at end of life or bereaved; music therapy interventions for improving health-related outcomes; qualitative; mixed-method; and quantitative studies including comparators of any other intervention; published in English from 1998 onwards. Six databases were searched up to July 2022. A JBI mixed-methods systematic review approach was followed throughout, including quality appraisal, data extraction and a convergent segregated approach to synthesis and integration. Results: A total of 34 studies were included, published between 2003 and 2022. Most were conducted in North America (n = 13), Australia (n = 10), or Europe (n = 8). No studies were conducted in low- and middle-income countries or in the UK. The majority were qualitative (n = 17), followed by quasi-experimental (n = 8), mixed-methods (n = 7) and two RCTs. The majority focused on carers of individuals with dementia (n = 21) or advanced cancer (n = 7). Seventeen studies were purely quantitative or included a quantitative component. During meta-synthesis, findings were aligned to core outcomes for evaluating bereavement interventions in palliative care and previously identified risk factors for complicated grief. Commonly targeted outcomes in quantitative studies included quality of life and mental wellbeing, showing equivocal effectiveness of music therapy with significant and non-significant results. Twenty-two studies either purely qualitative or with a qualitative component underwent meta synthesis and suggested a diverse range of improved pre- and post-bereavement outcomes for informal carers across all core outcomes, and across all risk and protective factors, including psychological, spiritual, emotional, and social outcomes. Conclusions: Qualitative studies provide moderate to strong evidence for improved health-related outcomes for adult informal carers of adults with life-threatening illness pre-bereavement. Limited studies including those bereaved negates conclusions for the bereavement phase. Comparisons and explanations for effectiveness across quantitative and qualitative studies are equivocal, with a high risk of bias and small samples in the limited number of quantitative studies, demonstrating a need for high-quality RCTs. Systematic review pre-registration: PROSPERO [CRD42021244859]. [ABSTRACT FROM AUTHOR]

Background: Professional caregiving relationships are central to quality healthcare but are not always developed to a consistently high standard in clinical practice. Existing literature on what constitutes high‐quality relationships and how they should be developed is plagued by dyadic conceptualisations; discipline, context and condition‐specific research; and the absence of healthcare recipient and informal carer voices. This study aimed to address these issues by exploring how healthcare recipients and carers conceptualise good professional caregiving relationships regardless of discipline, care setting and clinical condition. Design: A qualitative story completion approach was used. Participants completed a story in response to a hypothetical stem that described a healthcare recipient (and, in some instances, carer) developing a good relationship with a new healthcare provider. Stories were analysed using reflexive thematic analysis. Participants: Participants were 35 healthcare recipients and 37 carers (n = 72 total). Results: Participants' stories were shaped by an overarching discourse that seeking help from new providers can elicit a range of unwanted emotions for both recipients and carers (e.g., anxiety, fear, dread). These unwanted emotions were experienced in relation to recipients' presenting health problems as well as their anticipated interactions with providers. Specifically, recipient and carer characters were fearful that providers would dismiss their concerns and judge them for deciding to seek help. Good relationships were seen to develop when healthcare providers worked to relieve or minimise these unwanted emotions, ensuring healthcare recipients and carers felt comfortable and at ease with the provider and the encounter. Participants positioned healthcare providers as primarily responsible for relieving recipients' and carers' unwanted emotions, which was achieved via four approaches: (1) easing into the encounter, (2) demonstrating interest in and understanding of recipients' presenting problems, (3) validating recipients' presenting problems and (4) enabling and respecting recipient choice. Participants' stories also routinely oriented to temporality, positioning relationships within recipients' and carers' wider care networks and biographical and temporal contexts. Conclusion: The findings expand our understanding of professional caregiving relationships beyond dyadic, static conceptualisations. Specifically, the findings suggest that high‐quality relationships might be achieved via a set of core healthcare provider behaviours that can be employed across disciplinary, context and condition‐specific boundaries. In turn, this provides a basis to support interprofessional education and multidisciplinary healthcare delivery, enabling different healthcare disciplines, specialties, and teams to work from the same understanding of what is required to develop high‐quality relationships. Patient or Public Contribution: The findings are based on stories from 72 healthcare recipient and carer participants, providing rich insight into their conceptualisations of high‐quality professional caregiving relationships. [ABSTRACT FROM AUTHOR]

To determine the psychological and social impacts of a gastrostomy in childhood on carers and families. A systematic search of OVID, Medline and Embase was undertaken using the subject headings and word variants for 'gastrostomy', 'children' and 'carers'. Studies included were those describing the impact of gastrostomies in children on family and carers, published in English. 564 articles were identified. After exclusion of duplicates, abstract and full text screening, 25 were included. Carer anxiety increases in the period leading up to, and for a short period following gastrostomy insertion. 3–6 months following gastrostomy insertion, anxiety reduced (reduced State–Trait Anxiety Inventory scores), carer quality of life improved (higher Quality of Life Scale scores), and carer satisfaction with the child's gastrostomy increased (improved Satisfaction Questionnaire with Gastrostomy Feeding scores). Reported changes in carer quality of life in the longer term following a child's gastrostomy insertion were mixed. The social and psychological burden on caregivers of a gastrostomy in childhood varies over time. There is evidence that paediatric gastrostomies have positive effects on carers' psychological and social well-being; however, aspects of carers' quality of life remain impaired. Carer education and support are vital to reduce the burden placed on carers. [ABSTRACT FROM AUTHOR]

Background: New technologies have brought about a new age of technology-enabled aids that can equip informal carers with the relevant resources for better care. These include but are not limited to facilitating access to healthcare providers, knowledge of caring for persons living with dementia, and sources of support for carers' well-being. This qualitative study explores barriers to using eHealth/mHealth platforms and perceived beneficial eHealth/mHealth platform features among informal carers of persons living with dementia. Methods: An exploratory qualitative study design was employed. Semi-structured interviews were conducted among 29 informal carers of persons living with dementia in Singapore recruited via convenience and snowball sampling. The interviews were audio-recorded and transcribed verbatim. Thematic analysis was used to analyse the data. Results: The participants in this study identified several barriers to using eHealth/mHealth platforms, including personal preference, apprehension, poor user experience and lack of skills. On the other hand, knowledge of dementia, caring for persons living with dementia and self-care, a list of resources, social support, location monitoring and alert systems, and the ability to manage appointments and transactions were valuable features for eHealth/mHealth platforms. Conclusions: Despite the underutilisation of eHealth/mHealth platforms, carers expressed a keen interest in using them if they are functional and capable of reducing their care burden. The findings from this study can contribute to developing content and features for eHealth/mHealth interventions aimed at lightening carers' burden in their day-to-day caring routine. [ABSTRACT FROM AUTHOR]

This small-scale qualitative study, involving commissioners of carers' services, contextualized in academic and other literature, adds to an understanding of groupwork for carers within the context of an English legal framework. Five commissioners, from different parts of England, participated in an online focus group. The dataset was analyzed thematically using a reflexive Thematic Analysis approach. Three themes were developed from the data. One theme indicated that differing understandings of the purpose of group activities for carers co-existed in each area and another that system-wide blocks meant that the choice of provider depends on factors like ability to risk-manage the contract value rather than skills needed to serve whole populations. This led to a third theme of commissioners attempting to "engineer" the development of successful groupwork. The findings suggest that Community Social Work is likely to be successful in working with carers but may face challenges within a quasi-market approach. [ABSTRACT FROM AUTHOR]

Background: Caring for a young person with anorexia nervosa (AN) has been associated with psychological distress and found to be a traumatic experience. This can have an impact on patient and family outcomes. Objective: This study aimed to investigate whether self‐blame cognitions contribute to post‐traumatic stress disorder (PTSD) symptoms in parents of young people with AN. Methods: A cross‐sectional design was used. One hundred and twenty‐three parents of young people with AN completed a range of questionnaires assessing self‐blame cognitions and PTSD symptoms. Results: Overall, levels of self‐blame cognitions were significantly higher in those experiencing higher levels of PTSD symptoms compared to low levels. Additionally, levels of self‐blame cognitions significantly predicted PTSD symptoms over and above demographic factors and illness severity, accounting for 22% of unique variance in PTSD symptoms. Conclusions: The findings suggest that negative appraisals regarding self‐blame for their child's eating disorder contributed to the potential maintenance of PTSD symptoms. Parents presenting with thoughts of self‐blame would benefit from further support to reduce these feelings and, subsequently, reduce carer distress. Highlights: Self‐blame cognitions and post‐traumatic stress disorder (PTSD) symptoms were prevalent in parents of young people with Anorexia Nervosa.Self‐blame cognitions were more prevalent in parents experiencing high PTSD symptoms compared to those who do not. This relationship remained after controlling for subjective and objective threat of death and parental history of trauma, indicating the significant, independent role of self‐blame in the maintenance on PTSD symptoms.Self‐blame predicted 22% of PTSD symptoms, over and above demographic factors associated with PTSD, parental trauma history, and objective and subjective threat of death. [ABSTRACT FROM AUTHOR]

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Introduction: Older carers or 'care partners' of older people experiencing care needs often provide essential support, at times while neglecting their own health and well‐being. This is an increasingly frequent scenario due to both demographic changes and policy shifts towards ageing in place. Multiple community stakeholders within the care and support ecosystem hold valuable expertise about the needs of older care partners, and the programme and policy responses that may better support their health and well‐being. The aim of this study was to identify the perspectives of stakeholders obtained through the codesign phase of a multicomponent research project investigating new models of care and support for older care partners suitable for the Australian context. Methods: Principles of codesign were used to engage a purposeful sample of older care partners, health professionals, researchers, policy makers and health service administrators. Participants took part in a series of three codesign workshops conducted remotely via video conferencing. The workshops were supported with briefing material and generated consensus‐based summaries, arriving at a preferred service model. Findings: This paper reports the research design and structure of the codesign panels, the range of findings identified as important to support the health and well‐being of older carers of older people, and the resulting service model principles. The codesigned and preferred model of care is currently being prepared for implementation and evaluation in Australia. Public Contribution: This study was conducted using codesign methodology, whereby stakeholders including older care partners and others involved in supporting older carers, were integrally involved with design, development, results and conclusions. [ABSTRACT FROM AUTHOR]

Background: Chronic conditions can lead to physical, cognitive and social decline; thus, increasing an individual's dependence on family who assist with activities of daily living. Interprofessional collaborative practice (IPCP), involving two or more health professionals working with the patient and their family, is one model of care for the high‐quality management of individuals with chronic conditions in primary care. Nevertheless, family carers have reported a disconnect between themselves and healthcare providers in previous research. This study aimed to explore the experiences and perspectives of family carers for individuals with chronic conditions, regarding their involvement in IPCP. Methods: Aspects of constructivist grounded theory methodology were used. Family carers of individuals with chronic conditions were invited to participate in a one‐on‐one, semistructured interview about their experiences with IPCP in the care of their loved one. Interview transcripts were analysed using Charmaz's four‐step iterative process: (1) line‐by‐line coding, (2) focused coding, (3) categorisation of codes and (4) potential theme and subtheme development with memo writing to support each phase of analysis. The research team collaborated on reflexivity exercises, the conceptualisation of categories and the development of themes. Results: Constructivist data analysis of interviews (average 40 min) with 10 family carers resulted in two themes. (1) Stepping in for my loved one represents the notion that carers take on external roles on behalf of their loved ones (subthemes: working with interprofessional teams, supporting independence and learning as I go). (2) Taking on the carer role, represents the internal factors that influence the external roles described in theme 1 (subthemes: feeling obligated to be involved and changing relationship dynamics). Conclusion: This study outlines the external actions and internal influences on family carer involvement in an interprofessional team. The required knowledge and support to care for their loved ones is currently learned in an ad hoc manner, and carers' resources should be better promoted by health professionals. Additionally, the relationship dynamics between a carer and their loved one change as the carer becomes more involved in IPCP and influences how and the extent health professionals involve family carers. Patient or Public Contribution: Carers were the study population involved in this qualitative study. Patient advocates who have chronic conditions, and are informal family carers, were involved in the creation and design of this study, including a review of the research question, participant information sheet and the interview guide. [ABSTRACT FROM AUTHOR]

This exploratory qualitative study aimed to find out more about how the children’s social work system interacts with non-binary parents. It highlights the specific detriment that can be faced by non-binary people hoping to adopt or foster in the United Kingdom. Three key themes emerged: (1) Barriers for non-binary carers, (2) Prejudice in adoption and fostering matching processes and (3) Intersectional disadvantage. The study found that non-binary people experience specific detriment when endeavouring to start or grow their families, examining how cisgenderism operates to privilege some identities over others. Multiple barriers affect the way non-binary people try and navigate how their family lives in a society that is organised around binary gender identities. Cisgenderism can subtly and pervasively exert a devaluing of identities that sit outside of entrenched binary gender norms, influencing how people can understand and express their gender identities within society.

Abstract Background Cross-sectional evidence indicates that certain personality traits may influence how well people with dementia and their caregivers are able to live alongside the condition. However, no studies to date have explored these associations longitudinally. The present study aimed to explore whether each of the Five-Factor personality traits were associated with change over two years in perceptions of ‘living well’ for people with dementia and their caregivers. ‘Living well’ was conceptualized as a composite of quality of life, satisfaction with life, and subjective well-being. Methods Data were analyzed from 1487 people with dementia and 1234 caregivers who took part in the IDEAL cohort. Participants were categorized into low, medium, and high groups for each trait using stanine scores. Latent growth curve models investigated associations between these groups and ‘living well’ scores for each trait at baseline and at 12 and 24 months. Covariates included cognition in people with dementia and stress in caregivers. A Reliable Change Index was calculated against which to evaluate changes in ‘living well’ scores over time. Results At baseline, neuroticism was negatively associated with ‘living well’ scores for people with dementia, while conscientiousness, extraversion, openness, and agreeableness were positively associated. For caregivers, neuroticism was negatively associated with ‘living well’ scores at baseline while conscientiousness and extraversion were positively associated. ‘Living well’ scores were mostly stable over time with no influence of personality traits on observed changes. Conclusions Findings suggest that personality traits, particularly neuroticism, have a meaningful impact on how people with dementia and caregivers rate their capability to ‘live well’ at baseline. Over time ‘living well’ scores for each personality trait group were largely stable. Studies utilizing longer follow-up periods and more appropriate measures of personality are needed to corroborate and extend the findings of the present study.