PURPOSE: We explored the suitability of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer) against the widely used EQ-5D for evaluating the quality of life (QoL) of Japanese caregivers of patients with Alzheimer’s disease. This research aimed to expand the available preference-based measures for assessing caregiver QoL in health economic evaluations in Japan. METHODS: This was a cross-sectional survey using a web-based questionnaire. The alignment between the ASCOT-Carer and established measures, as well as its construct alignment, were evaluated. These were respectively investigated through Pearson’s correlation analysis with the EQ-5D-5L and factor analysis using the EQ-5D-5L and the eight-item short Japanese version of the Zarit Burden Interview (J_ZBI-8). RESULTS: In total, 705 live-in family caregivers of patients with Alzheimer’s disease completed the main survey. The absolute correlation coefficients were between J_ZBI-8 and EQ-5D-5L scores, + 0.268; between J_ZBI-8 and ASCOT-Carer scores, + 0.472; and between EQ-5D-5L and ASCOT-Carer scores, + 0.463. Factor analysis revealed that the only factors showing moderate/stronger correlations with factors constituted by J_ZBI-8 were those derived from ASCOT-Carer (inter-factor correlation: +0.31 and + 0.50). The ASCOT-Carer was a more important variable relative to the EQ-5D-5L for measuring caregivers’ QoL related to caregiver burden. CONCLUSION: The ASCOT-Carer may be a more suitable tool for evaluating the impact of caregiving burden on caregivers’ QoL. When incorporating QoL based on caregiver burden in health economic evaluations, the ASCOT-Carer may be an appropriate option. Caring for a family member with Alzheimer’s disease can be physically, emotionally, and mentally challenging, affecting a caregiver’s overall well-being and daily life. We looked at two tools—the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer) and the EQ-5D-5L—to see how well they measure the impact of caregiving on a caregiver’s quality of life and to expand the available tools for properly evaluating caregiver quality of life in health economic evaluations in Japan. We also examined how these tools related to caregivers’ feelings of stress and burden using the eight-item short Japanese version of the Zarit Burden Interview. We surveyed 705 family caregivers of people with Alzheimer’s disease through an online questionnaire. Our results showed that both tools provide helpful information but focus on different areas of a caregiver’s quality of life. The EQ-5D-5L mainly looks at general health issues like mobility, self-care, and anxiety, but it doesn’t fully capture the social and emotional challenges of caregiving. Alternatively, the ASCOT-Carer offers a clearer picture of a caregiver’s well-being, especially regarding social connections and emotional health. Moreover, the ASCOT-Carer was better than the EQ-5D-5L at showing the stress and burden that caregivers experience. This highlights that the ASCOT-Carer is more sensitive to the specific challenges that caregivers face. While both tools are helpful, the ASCOT-Carer may be a more suitable tool for evaluating the impact of caregivers’ real-life struggles on their quality of life, making it a valuable resource for health economic evaluations.
BACKGROUND: Since 2005, maternal and newborn deaths have declined in India. Nonetheless, if the current mortality trends continue, India may not achieve the Sustainable Development Goal targets without enhancing the quality of care across the continuum from pregnancy to delivery, particularly in poorly performing states. This study aimed to help the development of an evidence-based contextualized CHAMPION2 trial package of maternal and child health (being implemented in rural villages of Satna district, India) by assessing the quality of, and the factors associated with antenatal care (ANC) provision across four aspects of care and exploring reasons if uptake of care was inadequate. METHODS: We conducted a cross-sectional study in 50 of 196 villages in the CHAMPION2 cluster randomized trial in Satna district, Madhya Pradesh, India before randomization. We interviewed 792 women, who were eligible for the trial and had given birth in the previous two years from the interview date. We assessed the quality of ANC provision across four aspects of care (i.e., skilled care, timeliness (ANC in first trimester), number of ANC visits (at least four), and content of care) and explored women’s reasons if the uptake of care was inadequate. The quality of ANC provision was considered ‘adequate’ if all the four aspects of care were judged sufficient. We conducted logistic regression analyses to determine the socio-demographic factors associated with the adequate quality of ANC provision. RESULTS: Only 21.2% of women received ANC provision of ‘adequate’ quality (skilled care: 98.9%, timeliness: 75.3%, minimum four ANCs: 73.5%, and appropriate content of care: 28.3%). The inadequate quality was primarily due to inappropriate content of care, particularly poor compliance with iron-folate intake for at least 100 days and no counseling by healthcare providers on key ANC issues. The odds of receiving adequate quality ANC were increased when either the woman or husband was educated to at least high school level. CONCLUSIONS: The quality of ANC provision in the study setting was inadequate. The quality of care was emphasized in refresher training for nurses in the CHAMPION2 trial and health promotion, demand generation, and community mobilization activities were locally contextualized.
BACKGROUND: Family therapy (FT) is an evidence-based intervention for adolescent mental health issues, yet brief, empirically evaluated FT training programs are scarce in China. This study aims to evaluate the impact of a two-day intensive FT training program on trainees (i.e., psychotherapists with fewer than five exposures to formal psychotherapy training) in terms of their course mastery, attitudes toward psychotherapy, therapeutic self-efficacy and clinical competence, and to explore whether the participants’ attitudes and self-efficacy toward FT are associated with their demographic and professional characteristics. METHODS: A total of 127 trainees participated in the training, which included lectures on the application of family therapy in adolescents, real-case demonstrations, practical exercises, and supervision. 93(73.2%) participants completed an evaluation questionnaire measuring their mastery level of the training content, attitudes toward different psychotherapies, therapeutic competence and self-efficacy at the end of the program. Participants were informed of the purpose of the study, their right to withdraw at any time, and written informed consent was obtained from all participants prior to their participation in the training. Human ethics approval and consent to participate were applicable and adhered to throughout the study. RESULTS: The analysis revealed statistically significant improvements across all six content areas (all p < 0.01). Regarding attitudes toward cognitive-behavioral therapy, there were significant differences among trainees based on gender, prior experience with psychotherapy, and educational level. Also, as the participants’ age increased, their attitudes toward family therapy became more positive. Trainees with prior experience in psychotherapy exhibited significantly higher therapeutic competence and self-efficacy in family therapy compared to those without such experience. CONCLUSION: The results proved the positive effectiveness of the training. Notably, participants with prior relevant experience in psychotherapy scored significantly higher on therapeutic competence and self-efficacy, highlighting the critical role of practical experience in mastering therapeutic skills.
A Queensland Health report points out that Māori and Pacific Island communities in Queensland are vulnerable due to social disadvantage and limited health service access. The researcher applies decolonisation and cultural safety models, emphasising the importance of understanding the historical, political, and socio-contextual determinants of these groups. Ethical considerations as applied in this research must be flexible and culturally safe, focusing on a reflective and respectful approach to data collection. The literature review is based on Charmaz's constructivist contextual framework, which underpins and later reveals that the socio-contextual determinants for Māori and Pacific Island communities in Queensland are multifaceted, with one direct factor being disengagement from child and family health services. To explore this, qualitative research used both decolonisation and cultural safety methodologies, with a focus on ethical considerations and the service user's experience, specifically examining how care is delivered, and not just the type of care provided. Embracing a decolonial perspective, the Talanoa method guided the data collection process. This involved interviewing 29 Māori and Pacific Island families in Townsville and Brisbane, as well as eight child health service providers in these areas. During data analysis, key interpretations were informed by conceptualisations of culturally safe health service delivery, supported by Charmaz's constructivist grounded theory, which aligns with the cultural safety methodology. The data analysis revealed key themes, including power dynamics, positionality, and identity versus cultural differences, the deficit discourse of trans-culturalism, and cultural disconnection in the portrayal of health service delivery to Queensland Māori and Pacific Island families. In this research context, trans-culturalism is associated with a deficit discourse. The application of the theoretical framework of cultural safety and decolonisation was two-fold; it reveals the importance of working in partnership and reveals significant power imbalances, causing a lack of engagement between service users and service providers. Furthermore, it reveals the unexamined privileges of service providers and the inherent marginalisation of service users. Of significance to the research problem statement, the 'lack of uptake of health service delivery', the grounded theoretical and traditional perspectives of cultural safety and decolonisation shift the focus from service users (Māori and Pacific Island communities) to explore the experiences of child health service providers in their interactions with Māori and Pacific Island families. The analysis uncovered misconceptions and a tendency to assume that healthcare delivery using a trans-cultural approach was culturally safe. Unearthing an understanding that challenges the deficit discourse of trans-culturalism to comprehend participants' positionality is essential for resolving and addressing the health issues faced by Queensland Māori and Pacific Island families accessing services. This recognition indicates an ongoing reliance on colonial imposition rather than promoting (a principle of cultural safety) self-determination in access to health service delivery for Queensland Māori and Pacific Island families.
Oral health is an important part of general wellbeing, but in the United Kingdom there are substantive inequalities, especially based on ethnic minority and ageing. There is a poor quality of life, a lack of awareness and preventive measures, and periodontal disease contributes to loss of teeth, poor nutrition, and poor quality of life. Ageing adults among Indians in Luton are an under-studied group whose experiences could inform the interface of cultural, structural, and psychosocial determinants of oral health. The research aimed to understand the lived experiences of ageing Indian adults in Luton with respect to periodontal health, dental service provider access, and the impacts of cultural, familial, and emotional factors on oral health behaviours. A qualitative research design was adopted where semi-structured interviews of 10 ageing Indian adults living in Luton were conducted. Data were analyzed in terms of their themes using theoretical frameworks of the Health Belief Model, the Social Cognitive Theory, and Intersectionality to identify patterns and meaning in participant stories. The results showed that the level of knowledge about periodontal disease was low; and most of the participants believed that the gum issues were not a big problem and that everyone got gum problems with ageing. The obstacles to care access were that the NHS was too expensive, too long, and too complicated; the quality of care in the private sector was too high, and it was unaffordable. Fear, mistrust, shame (psychology) also discouraged the use of dental services. This study finds that the interaction of culture beliefs, systemic barriers, and psychosocial variables affects the oral health of older Indian adults in Luton. Periodontal treatment tends to be reactive and symptomatic with little preventive treatment. This research suggests that the main issues will be culturally sensitive oral healthcare education, family- and community-intervention, affordability, access and cultural competence of NHS dental care. It contributes new qualitative evidence on the need for culturally competent, family-engaged, and accessible dental care for ethnic minority older adult in the UK.
Intellectual disability (ID) refers to significant limitations in intellectual and adaptive functioning beginning in childhood. Globally, ID affects 1-3% of the population-over 200 million people. Family carers of individuals with ID experience high levels of stress, poor health, and reduced quality of life due to ongoing caregiving demands. These pressures intensified during the COVID-19 pandemic, prompting the development of Carers-ID, an online intervention designed to support carers' mental health. To assess the feasibility of delivering the Carers-ID programme to family carers of people with ID. A parallel randomised controlled trial was conducted to evaluate recruitment and retention rates, feasibility of data collection, and potential effect sizes. Carers were recruited via UK-based voluntary organisations and NHS learning disability teams and randomly assigned to either the Carers-ID intervention (n = 51) or waitlist control (n = 48). Randomisation was conducted by an independent third party. The intervention spanned two weeks with assessments at baseline, post-intervention, and three-month follow-up. Outcomes included measures of well-being, resilience, social connectedness, depression, anxiety, and stress. The trial followed CONSORT reporting guidelines. Of 150 carers screened, 99 met inclusion criteria, and 84 completed the baseline assessment (85%). Retention was 55% post-intervention and 41% at three-month follow-up. Adjusted mean differences between-groups at T2 (2 weeks from baseline) across the four measures were as follows: 3.42 (SE = 2.84, p = 0.23) for wellbeing, 12.20 (SE = 5.83, p = 0.04) for resilience, 5.09 (SE = 5.12, p = 0.32) for social connectedness, 0.98 (SE = 1.40, p = 0.49) for depression, 0.42 (SE = 1.26, p = 0.74) for stress, and 1.06 (SE = 1.32, p = 0.43) for anxiety. Family carers face time and resource pressures which may exclude them from clinical trials. Challenges in retaining carers highlight the need for flexible intervention formats. Despite retention issues, results suggest feasibility in delivering the Carers-ID intervention. Future effectiveness trials should address barriers to participation and tailor interventions for this underserved population. Trial registration ClinicalTrials.gov: NCT05737823.
There is growing interest in customising patient-reported outcome measures (PROMs). This involves selecting specific domains (i.e., subscales) that focus on key health-related quality of life (HRQoL) issues most relevant to a particular study's context, referred to as the modular approach. Despite available recommendations from international stakeholders and PROM developers, the modular approach has not been widely adopted in cancer clinical trials. This qualitative study explored the acceptability of the modular approach to administering PROMs from the perspectives of cancer consumers. Consumers (patients, family members and/or caregivers) who have experience with cancer were recruited through cancer clinical trial networks in Australian and New Zealand. Data were collected through online focus groups. Interview probes and analysis were guided by Sekhon et al.'s Theoretical Framework of Acceptability. Ten consumers, all with prior experience in clinical trial design, participated across four focus groups. The acceptability of the modular approach was discussed in reference to four themes: (1) minimising respondent burden is not simply about shortening PROMs; (2) competing priorities of reducing burden, preserving PROM measurement properties and assessing breadth versus depth of issues; (3) new strategies are needed to improve PROM relevance; and (4) who should select the domains, and how? Acceptable features of the modular approach included its potential to increase the relevance of questions, minimise duplication, and allow for more in-depth assessment of priority HRQoL issues. Participants also believed that involving consumer representatives in domain selection could alleviate the burden on researchers during trial design and were supportive of giving individual clinical trial patients the option to self-select domains that are personally meaningful. Consumers were generally supportive of using the modular approach in administering PROMs in clinical trials, while also identifying ways to strengthen its acceptability. These included the need for clearer consensus and guidance on what constitutes a well-justified selection of domains and further personalisation of PROM domains (e.g., through branching questions). These insights can help inform regulatory agencies and other stakeholders about consumer needs and highlight the support needed if there is to be a paradigm shift in trial design towards tailored PROM administration.
Occupational therapy plays a vital role in enhancing engagement and quality of life for people living in nursing homes. However, in Australia, funding for occupational therapy in nursing homes is limited, and its scope is restricted. The Enhancing Allied Health for Older People (EAHOP) trial aimed to assess the feasibility and impact of embedding a multidisciplinary allied health model, including occupational therapy, in a nursing home. This paper describes the occupational therapy implementation and outcomes of the EAHOP trial. A convergent mixed-evaluation was conducted. Twenty-seven residents at an Australian nursing home received occupational therapy by occupational therapists and occupational therapy students. The Canadian Occupational Performance Measure (COPM) was used to set goals and evaluate changes in occupational performance. Data included median therapy minutes per resident and service occasions. Qualitative data were gathered using semi-structured and unstructured interviews and analysed using content analysis. The EAHOP trial included a Stakeholder Committee that included residents of the nursing home who were participants in the trial. This group advised the research team on all aspects of the intervention throughout the trial. Residents received a median of 895 minutes of occupational therapy and 203 minutes from allied health assistants for a 1-to-36-week programme where the intervention period varied according to individual need. This equated to a median of 3.9 minutes/resident/day. COPM scores showed clinically meaningful improvements in performance and satisfaction. Interventions addressed diverse occupational performance issues across self-care, productivity, and leisure. Qualitative findings supported these outcomes, highlighting the benefits of the service and identifying barriers and implementation challenges. Embedding a comprehensive occupational therapy service within a multidisciplinary team model is both feasible and beneficial in a nursing home. The improvements in occupational performance and satisfaction, along with the diversity of interventions required, highlight the important contribution of occupational therapy in a nursing home. Occupational therapy may help older people in nursing homes manage daily tasks more easily and safely. In Australia, occupational therapy currently has only a small role in these homes. Researchers from the University of Canberra ran a study called Enhancing Allied Health for Older People to see if a team of health workers in a nursing home would help. The study was held in a nursing home in Australia, with 27 residents receiving occupational therapy to do activities that were important to them. Each person's progress was measured by listing key activities and rating how well they could do them before and after support. Each resident got 895 minutes of occupational therapy and 203 minutes of help from allied health assistants based on their need and wishes. Researchers also talked to family members, staff and students to understand if occupational therapy support was useful and to know of any challenges. The study showed that occupational therapy in a nursing home can make it easier for people to engage in occupations and improve their quality of life.
Respectful patient care is a fundamental pillar of quality healthcare and is integral to the well-being and satisfaction of patients. However, there is a growing recognition of the disrespect and abusiveness of patients seeking care. Studies have reported that women's experiences of disrespectful and abusive care during childbirth significantly impacted their utilization of these services. This systematic review aims to provide a comprehensive evaluation of the practices of respectful and dignified maternity care in West Africa. The review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement checklist and was registered in PROSPERO. Research articles were systematically retrieved from four databases: PubMed, Scopus, EMBASE, and PsycINFO, and through manual searches of reference lists. A two-stage screening process was employed, followed by quality assessment using the Joanna Briggs Institute (JBI) critical appraisal checklist for cross-sectional studies. The review included 17 studies predominantly from Ghana and Nigeria, with one study spanning multiple countries. Most studies utilized qualitative methods and focused on women of reproductive age, practising midwives, and midwifery students. Findings revealed high levels of mistreatment during childbirth, including physical and verbal abuse, non-consented care, and dignity violations. Midwives showed varying levels of awareness and practice regarding respectful maternity care, with structural barriers within healthcare systems exacerbating mistreatment. Women reported experiencing disrespect and abuse, influenced by factors like age, marital status, and facility type. Midwifery students also identified issues of mistreatment and highlighted discrepancies between understanding the importance of respectful care and actual practice. We, however, did not find any literature addressing interprofessional respectful and dignified maternity care. The review reveals widespread mistreatment and disrespect during childbirth, including physical and verbal abuse, non-consented care, and dignity violations. Systemic barriers like staffing shortages and inadequate supplies exacerbate these issues, underscoring the pressing need for structural reforms in healthcare systems.
Family environments play a critical role in shaping children's lifestyle behaviours that influence obesity risk. However, culturally validated instruments to assess these behaviours are lacking in Portuguese primary care. This study aims to translate and culturally adapt the Family Nutrition and Physical Activity (FNPA) screening tool for use in Portugal (FNPA-PT) and to evaluate its face and content validity through cognitive interviews with parents attending well-child visits. An exploratory, descriptive study followed internationally endorsed guidelines (Beaton; MAPI) for translation and cross-cultural adaptation. The process comprised seven stages: forward translations, synthesis, back translations, comparisons of back translations, expert committee review, cognitive debriefing and final proofreading. Ten parents of five-year-old children attending a public primary care centre in Lisbon completed the FNPA-PT while participating in individual cognitive interviews. Data were analysed using Content Analysis, guided by Tourangeau's four-stage response model. Semantic equivalence between forward and back translations was high (85% of items with satisfactory or perfect equivalence). Minor linguistic and cultural adaptations were introduced to improve clarity and contextual relevance. Cognitive interviews indicated that the FNPA-PT was well understood, acceptable to parents, and feasible to complete during well-child visits. Parents valued the questionnaire's comprehensiveness and its potential to enhance awareness and stimulate discussion about family health behaviours. Minor revisions addressed comprehension issues in three items related to milk consumption, screen time and sleep. The FNPA-PT demonstrated strong face and content validity and high acceptability among Portuguese parents. It provides a culturally appropriate, family-centred tool for health professionals to support early identification of obesogenic environments and to guide preventive counselling in primary care. The study also offers a transparent methodological pathway for translating and adapting behavioural measures across languages and settings.
BACKGROUND: This paper addresses the critical knowledge gap of describing and examining the Health-Related Quality of Life (HRQoL) of older adults living in social housing, highlighting their unique health challenges often overlooked in broader Canadian norms. METHODS: This study conducted a cross-sectional analysis of data from participants in the Community Paramedicine at Clinic (CP@clinic) Program from 2019 to 2024. HRQoL was assessed using the EuroQol five-dimension five-level (EQ-5D-5L) instrument. Descriptive statistics summarized EQ-5D-5L measures (dimensions, utility scores, EQ-VAS) across age groups and sex. Bivariate tests were conducted to examine the association between demographic factors and HRQoL outcomes. RESULTS: A total of 2286 participants were included, with 86.6% reporting problems in at least one EQ-5D-5L dimension. The mean EQ-5D-5L utility score was 0.771 (SD = 0.176), while the mean EQ-VAS score was 69.58 (SD = 20.577). Utility scores were highest among participants aged 75 and older (0.781) and lowest in the 55–64 age group (0.723). Participants with at least a high school diploma, those living with others, and those with a partner had significantly higher utility scores. CONCLUSIONS: This study provides important insights into the HRQoL of low-income older adults in social housing, a group that remains underrepresented in existing research. The findings can help inform policies and interventions aimed at improving overall well-being and quality of life in this setting. Older adults living in social housing often face a combination of issues, including low income, ongoing health problems, and limited access to healthcare. These factors can have a significant impact on both their physical and mental well-being. Despite this, there is little research focused on their quality of life. Our study aimed to better understand the unique health-related challenges faced by older adults in this setting. Using the EQ-5D-5L tool, we assessed the health-related quality of life of older adults in social housing and compared it to Canadian population norms. We found that the health-related quality of life scores for older adults in social housing were notably lower, with the lowest scores seen in those aged 55 to 64. These results highlight a critical need for targeted health services and community supports. Addressing the broader social determinants of health, such as income and housing, is necessary to address the needs of this population.
Polypharmacy is often managed at home by older people and those involved in their day-to-day care. Home care workers are well placed to play a crucial role, but there is little research in this setting. This study aimed to explore experiences and perceptions of polypharmacy amongst providers of home care. We conducted qualitative interviews with 15 home care staff from five for-profit home care providers in three regions of England. Data were analysed thematically. We identified three overarching themes: (1) managing medications within a fragmented care system, (2) decision-making and autonomy and (3) client and family expectations and emotional burden of home care work. People providing home care services were striving to support older people with medications with limited training, communication or authority. The emotional toll on the home care workers was considerable. Home care supports an ageing population to live and be cared for, close to home. There are potential benefits to the management of polypharmacy, of better integrating home care into the broader health and care system. Clarity over roles, appropriate channels of communication and enhanced training are required. Individuals with lived experience of home care services contributed meaningfully throughout the study. They advised on the development of the topic guide to ensure that interview questions were relevant, acceptable and reflective of real-world home care experiences. At the mid-point of data collection, public contributors reviewed insights and provided feedback on whether additional issues or perspectives should be explored in subsequent interviews. Following completion of data collection, they were also involved in discussing the preliminary findings and ensuring that the interpretation accurately reflected the experiences of those using and or accessing the service.
BackgroundConcordance, or alignment of care with patients' preferences, is a key component of high-quality decision making. Some patients may not have a clear preference, and others may not receive care aligned with their preference-both situations indicating a lack of concordance. The reasons behind these situations remain poorly understood. This study explores the reasons for lack of concordance in colorectal cancer screening among older adults.MethodsInterviews were conducted with 160 older adults from the Promoting Informed Decisions About Colorectal Cancer Screening in Older Adults trial (NCT03959696) who did not meet the criteria for concordance. A thematic analysis of 152 analyzable interviews was performed to explore reasons for lack of concordance.ResultsFour themes summarize the different reasons for the lack of concordance: 1) provider discussion and the need for more guidance (e.g., patients reported very limited discussion and desire for more information), 2) age-related considerations (e.g., patients acknowledge that at their age, screening may no longer be needed), 3) changes in health condition (e.g., patients report other health issues that take priority over screening), and 4) the impact of COVID-19 and practical barriers (e.g., patients report a desire to avoid hospitals and procedures).ConclusionsThe lack of concordance stemming from limited discussion, guidance, or lack of clear preference signal low decision quality, whereas the lack of concordance from changing patient preferences over time has implications for timing of measurement. To improve concordance, patients need support to clarify their preferences as well as support to implement their preferred approach.HighlightsLimited provider discussion, age-related factors, changing health priorities, and COVID-19-related or practical challenges were identified as key contributors to lack of concordance.Achieving high concordance will require helping patients clarify their preferences, strengthening shared decision making, and providing implementation support.Researchers also need to be aware of evolving preferences and implications for timing of preference measurements.
Juvenile hypermobility syndrome can cause various symptoms in children, including widespread musculoskeletal pain, digestive issues, tingling sensations, urinary problems, sleep disturbances, fatigue, and anxiety. This study aimed to investigate how juvenile hypermobility syndrome and its associated symptoms affect the quality of life of children. The study involved 152 patients between the ages of 6 and 18 who experienced joint pain. The diagnosis of joint hypermobility syndrome was based on the Beighton criteria, and the quality of life was assessed using the Pediatric Quality of Life Inventory 4.0 (PedsQL). Our study included 152 patients, of whom 96 (63.2%) were female. The average age of the patients was 11.2 ± 3.6 years. The knee was the most commonly affected area, with 92 patients (60.5%). The average Beighton score was 6.9 ± 1.3. Accompanying findings were observed in 146 patients; the most common finding was myalgia, which was observed in 32 patients (21.1%). The median PedsQL score reported by the children was 74 (17.7-95.8), with physical health at 78.1 (9.4-100), emotional functionality at 70 (0-100), social functionality at 79.2 (8.3-83.3), and school functionality at 70 (10-100). Similarly, the median PedsQL score reported by the parents for their child was 77.1 (8.3-95.8), with physical health at 75 (3.1-100), emotional functionality at 75 (0-100), social functionality at 83.3 (83.3-83.3), and school functionality at 80 (20-100). Many children diagnosed with juvenile hypermobility syndrome experience additional symptoms that affect not only their physical functionality, but also their school and social lives, which can impact their emotional well-being. This can cause concern for parents, and both the child and the family require appropriate support, especially in terms of emotional and social functionality. It is important to ensure that both the child and their family receive necessary support to deal with juvenile hypermobility syndrome. • Many children diagnosed with juvenile hypermobility syndrome experience additional symptoms that affect not only their physical functionality, but also their school and social lives, which can impact their emotional well-being. • This can cause concern for parents, and both the child and the family require appropriate support, especially in terms of emotional and social functionality. It is important to ensure that both the child and their family receive necessary support to deal with juvenile hypermobility syndrome.
General practitioners (GPs) frequently serve as the first or only point of contact for patients with mental health disorders, playing crucial roles in detection, prevention, and management. Despite this, many GPs feel poorly prepared to address mental health issues, often citing the barriers of limited time, heavy workloads, and insufficient training. The present study's main objective was to make an in-depth exploration of the potential difficulties encountered by GPs as they manage and follow up with patients with mental health problems. Our qualitative approach involved semi-structured individual interviews with 17 GPs from French-speaking Switzerland. Interviews were transcribed and analysed using reflexive thematic analysis within an inductive theoretical framework. Once the most important themes and subthemes had emerged, we externally and internally validated them. Four principal themes emerged. GPs reported that: (i) they enjoyed caring for patients with mental health issues, valuing their unique position in providing comprehensive, long-term support; (ii) they faced significant systemic barriers, including frustration with limitations related to Switzerland's health assurance scheme; (iii) collaboration with psychiatrists was lacking and resources were insufficient; and (iv) they required help and new ideas to improve the quality of their care. GPs' experiences revealed a mixed reality: their dedication to patient care existed alongside their frustration with systemic constraints, highlighting the complexity of mental health management in primary care. Sustainable improvements would require addressing gaps in caregivers' training, greater interprofessional collaboration, and more public health initiatives to mainstream mental health care into society.
Primary healthcare practitioners play a pivotal role in postpartum care. Many countries encourage women to attend a postnatal check after birth, providing an ideal opportunity for contraceptive care. However, contraception is often not discussed, increasing the risk of unintended pregnancy and short interpregnancy intervals. To explore primary healthcare practitioners' views and experiences of providing postpartum contraceptive counselling and care to better understand the gaps, needs, and opportunities. A rapid review was conducted of English language peer-reviewed primary research studies from high-income countries focussing on primary healthcare practitioners' views and experiences of providing postpartum contraceptive counselling and care. Studies were retrieved from five databases, supplemented by Google Scholar and citation searching. Key characteristics were extracted, and thematic analysis identified key themes. Altogether, 2255 references were identified, with eight studies included. Four themes were constructed: (1) varied knowledge and attitudes regarding postpartum contraception, including views on of long-acting reversible contraception (LARC), safety concerns, and optimal counselling timing; (2) structural and logistical barriers to contraception provision in primary healthcare, including lack of LARC availability, time constraints, and funding issues; (3) limited contraception education and training for practitioners in LARC provision, with practitioners lacking skills or motivation to upskill; and (4) gaps in postpartum contraception resources and guidelines needed to promote postpartum contraceptive care. Improving postpartum contraceptive counselling requires embedding comprehensive contraceptive training in healthcare education, developing standardized guidelines for postpartum appointments, and addressing barriers such as time constraints, lack of resources and funding to support effective contraception care for postpartum women. All pregnant and postpartum women should have access to information and services to help them plan if and when they want to become pregnant again. Primary healthcare practitioners are often the first point of contact for women after childbirth, including for the 6-to-8-week postnatal check. This appointment is an ideal time to discuss contraception, but this does not always occur. Many women are unaware of how quickly fertility returns or their full range of contraceptive options, increasing the risk of unplanned pregnancies and short gaps between births. Our review looked at how primary healthcare practitioners view and experience providing contraception care after birth. We found eight studies from high-income countries highlighting four main challenges relating postpartum contraception: practitioners have varied knowledge and attitudes about postpartum contraception, especially long-acting methods; structural and logistical barriers, such as limited time during appointments and funding for practitioners impact care; many practitioners have insufficient education and training to provide contraception effectively; and clear resources for postpartum contraception and guidelines for postnatal checks are not available. Addressing these challenges would help primary healthcare practitioners provide consistent, high-quality contraception counselling during pregnancy and after birth to support women to make informed choices about their reproductive health.
Breast cancer rates are increasing globally amongst premenopausal women, who often face aggressive subtypes with poorer outcomes than postmenopausal women. In the United Kingdom, current guidelines for risk assessment amongst women under age 50 years focus on family history or genetic predisposition, a strategy that fails to identify most women that go on to develop breast cancer. The Breast CANcer Risk Assessment in Younger women (BCAN-RAY) study is evaluating the feasibility and acceptability of a novel risk assessment strategy for women aged 30-39 years, without a strong family history, incorporating a risk factor questionnaire, polygenic risk score and breast density assessment to identify those at increased risk and support early screening and preventive health measures. This study aimed to investigate the acceptability of the BCAN-RAY approach to assessing risk by exploring women's views of the invitation, risk assessment and feedback processes used, to identify any changes required. A cross-sectional qualitative design was used. Twenty-two women from the BCAN-RAY study identified as being either at population average (n = 11) or at increased risk (n = 11) of developing breast cancer completed semi-structured interviews shortly after receiving risk feedback. Data were analysed thematically. Participants generally found the BCAN-RAY approach acceptable, with no evidence of significant anxiety during or after participation. Positive experiences were largely attributed to personalised staff interactions and the availability of tailored opportunities to manage risk. However, some participants reported confusion regarding risk information provided, for example, struggling with technical language. Practical barriers, including logistical challenges and limitations of existing referral pathways, were also identified. Breast cancer risk assessment amongst younger women was generally acceptable with results allowing participants to be proactive about their health. Issues related to risk communication, training of staff who will conduct risk assessment and streamlining the delivery of risk assessment need to be considered for routine implementation.
An aging society and a growing shortage of healthcare professionals pose increasing challenges for nursing homes in Germany. Enhanced collaboration between nursing home staff and General Practitioners is essential to ensure quality care. Understanding nurses' perspectives is crucial to identifying current issues and suitable solutions. To explore nursing home staff's perspectives on communication and current channels with General Practitioners and evaluate specifically their attitudes towards digital communication options. This qualitative study involved semi-structured interviews with 13 nursing home employees from seven German nursing homes, conducted between January 2020 and April 2022. Data were transcribed verbatim and analysed thematically. Reporting adhered to COREQ guidelines. We used paradox theory from management studies to interpret communication tensions and solution strategies. We identified three key themes: (1) Interprofessional communication problems between nurses and general practitioners, including limited direct contact, technical barriers, and time-related inefficiencies; (2) Perceived ability of digital options to reduce communication problems; and (3) Suggestions to improve communication, with a focus on digital options. Participants expressed a strong openness to digital communication tools, highlighting their potential to alleviate current tensions. Digital tools were viewed as opportunities to streamline communication, enhance efficiency, and ultimately improve collaboration and patient care. This study provides insights into tensions in healthcare collaboration in nursing homes and possible solution strategies. Participants see digital tools as promising pathways to resolve current inefficiencies and support better interprofessional collaboration. These insights are essential for guiding the development of practical, sustainable solutions to improve care delivery in nursing homes.
Despite numerous public health initiatives, rates of exclusive breastfeeding in Australia do not meet recommendations. Currently 35% of maternity services provide some form of continuity of care, with superior results in key outcomes. This pilot study was undertaken to determine feasibility of a lactation consultant led continuity of care model for breastfeeding support. Randomisation occurred at 36-weeks gestation. Usual care followed NSW Health guidelines, the new model provided support by a board-certified lactation consultant, with up to 14 postnatal appointments available until six months postpartum. The primary outcome was study feasibility, measured by recruitment and retention, and protocol adherence. Secondary outcomes were breastfeeding rates at discharge, 4-months and 6-months postpartum. Recruitment uptake was high, over 95% of women approached enrolled in the study, with 90.1% completing the study protocol. Attrition was < 10% and rates of monthly data collection completion varied between 45% and 88%. The intervention utilised 225 service hours. End point data at 6-months was available for 88.9% (intervention) and 84.8% (usual care) of participants. Despite higher rates of breastfeeding issues, women in the intervention group had similar rates of breastfeeding at 4- and 6-months and reduced hospital readmissions for breastfeeding related issues. Women indicated a preference for text and phone support once breastfeeding was established, however this preference may need to be balanced with more in-person support to ensure maximum benefits. Outcomes indicate a larger RCT using this protocol would be feasible, with an economic evaluation recommended.
As improvements in anti-cancer treatments have extended survival, patients with advanced cancer and their family caregivers face existential tension between engaging in life and coping with uncertainty about illness trajectory and the course of treatment. For a subgroup, this tension is associated with overwhelming fear and existential distress. Such adjustment difficulties may increase the risk of mental disorders, poor quality of life, and suicidality, and impair prognostic awareness and patient-clinician communication. Despite growing interest in open conversations about end-of-life issues, systematic evidence on effective psychotherapies to best support psychological adaptation in patients with high levels of existential distress is still scarce. We aim to evaluate the effectiveness of a short-term psychodynamic therapy (ORPHYS) to mitigate existential distress compared to usual psycho-oncological treatment (TAU). We conduct a two-arm parallel randomized controlled trial with an active control group. ORPHYS is a manualized individual face-to-face psychotherapy focusing on emotional and relational conflicts specific to cancer patients' illness situation. Treatment lasts between 5 and 11 months with 15 to 31 weekly sessions (50 min). TAU includes at least one individual session provided by physicians or psychologists with experience in psycho-oncological care. Patients will be assessed pre-intervention and 3, 6, 9, and 12 months after baseline. Target sample size is 160 randomized participants. We recruit patients with stage III/IV solid tumors or advanced hematological cancer and clinically significant existential distress from psycho-oncology clinics and referring oncologists at Hamburg, Düsseldorf, and Würzburg Comprehensive Cancer Centers, Germany. The primary outcome is demoralization (Demoralization Scale-II). Secondary outcomes include diagnoses of affective, anxiety and stress-related disorders, death anxiety, dignity-related distress, and quality of life. Outcome assessments are conducted via self-report questionnaires and diagnostic interviews. Linear mixed models examine outcome differences between trial arms. A confirmatory test of the group contrast at 6-month follow-up after baseline is conducted. Due to an aging population and prolonged survival, there is a growing demand to help patients deal with existential challenges undergoing palliative cancer care. The study will contribute to knowledge about how clinicians can best help patients with advanced cancer who substantially struggle with uncertainty at the end of life. German Clinical Trials Registry, DRKS00038173. Registered October 20th, 2025, https://drks.de/search/en/trial/DRKS00038173 . gov, NCT07312760. Registered December 30, 2025, https://clinicaltrials.gov/study/NCT07312760 .