Family Support Research Articles

Menstruation experiences and its association with psychological distress among school-going adolescent girls of Nepal: A cross-sectional study.

This study aimed to assess the relationship between menstruation-related attributes and mental distress in adolescent girls. A cross-sectional study was conducted in Rangeli Municipality, Nepal, among 270 adolescent girls. Data were collected using a self-administered questionnaire. Unadjusted and adjusted odds ratios (aOR) were calculated at a 5% level of significance to identify factors associated with depression, anxiety and stress. Of 270 adolescent girls, 28.9% (95% CI: 23.5%-35.2%) experienced anxiety, 14.4% (95% CI: 10.0%-18.5%) experienced stress and 32.2% (95% CI: 26.6%-37.4%) experienced depression. Low perceived family support during menstruation (aOR: 2.87, 95% CI: 1.03-7.97), low perceived support from friends during menstruation (aOR: 4.09, 95% CI: 1.66-10.07) and experiencing moderate/severe dysmenorrhea (aOR: 2.31, 95% CI: 1.105-5.08) were associated with anxiety. Those with moderate/severe dysmenorrhoea had higher odds (aOR: 5.60, 95% CI: 1.56-20.05) of experiencing stress. Low perceived family support (aOR: 3.07, 95% CI: 1.08-8.67), low perceived support from friends (aOR: 2.77, 95% CI: 1.11-6.89) and experiencing moderate to severe dysmenorrhoea (aOR: 3.56, 95% CI: 1.63-7.79) were associated with depression. The findings underscore the importance of proper management of dysmenorrhoea and need for social support from both family and friends during menstruation as these factors are associated with psychological distress among adolescent girls.

Relationship between mindfulness and meaning in life among university students: roles of social support and the experience of being left behind

University students, particularly those with experiences of being left behind, face difficulties dealing with the many changes that cause psychological problems, and meaning in life plays a protective role in this process. Mindfulness and social support have emerged as potential factors influencing meaning in life. Although previous studies have revealed a link between mindfulness and meaning in life, few studies have examined this relationship from the perspective of the experience of being left behind. A sample comprising 1205 university students was used for the study. Self-report questionnaires were administered to assess the degrees of mindfulness, social support, meaning in life, and the experience of being left behind. We established four moderated mediation models to test the moderation and mediation effects. The results of a moderated mediation analysis revealed that social support and its dimensions mediated the effect of mindfulness on meaning in life. The impact of family support on meaning in life was moderated by the experience of being left behind, and friend support and other types of support had no significant moderating effects. Specifically, the moderating effect of the experience of being left behind significantly attenuated the impact of family support on meaning in life, whereas no significant weakening effect was observed for friend support or other types of support. Therefore, psychological education should emphasize the compensation role of friend support and other social connections in the psychological problems caused by the experience of being left behind, and appropriate mindfulness intervention is suggested.

Factors Affecting Urban Women Empowerment in Bangladesh

This study explored the factors (attributes) affecting women empowerment in Bangladesh focusing 24 specific attributes grouped into six categories. The primary data is collected through a questionnaire survey of 176 urban women selected through convenient sampling. The most agreed attributes are access to education, and the education of people. Next agreed factors are social security, family support, women personality, women rights, legal rights, societal perception about women, vocational training, work mobility, and NGO impact and support, Next in the row are break of study, income, voting rights, savings, dowry, employment length, profession choice, wealth, inheritance. The disagreed factors are public or private education, and sibling status. The analysis of group variables showed that environment is the most important group followed by rights, education, family dynamics, finance, and employment. The important environmental factors include social security, and societal perception about women. NGO impact and support also plays a key role. Regarding rights the significant factors are awareness of women, legal, and voting rights. In the education group, access to education, and level of education of people are the two most crucial factors. Also, vocational education, as well as break of study play important roles. But public or private education have no effect in women empowerment. Regarding family dynamics, family support, and women personality are two important variables. Dowry payment, and marital status also found to carry less weight. But sibling status have no impact on women empowerment. Financial factors playlesser role in women empowerment. In this group income and savings are key factors followed by wealth and inheritance. Employment is the least important group variable. Here work mobility found to help women empowerment followed by length of employment. Parental leave was found to have no impact. Demographically not much difference in opinion is observed.

Unveiling Shadows: Challenges Encountered by Mental Health Nurses and Health Cadres in the Delivery of Care to Persons With Mental Illness in Indonesia.

Mental health nurses and health cadres in Indonesia who provide care to persons with mental illness (PWMI) report encountering several challenges and obstacles to the delivery of quality care. At present, there is a paucity of research on this topic. The objective of this study was to examine the challenges encountered by mental health nurses and health cadres in their interactions with the families of PWMI in the community. This descriptive qualitative study employed focus group discussions, conducted in three Indonesian cities: Banda Aceh, Surabaya and Yogyakarta. Thematic analysis was utilised to analyse the data. The study revealed that the theme of this research is nurses and health cadres experienced challenging family behaviours toward a PWMI. The initial subtheme of family behaviour is 'concealing the PWMI.' This subtheme encompasses instances where families attempted to hide the mental health condition of the PWMI. The second subtheme is 'unsupportive families'. This subtheme is characterised by reluctance to engage in treatment or outright rejection of hospital care. This is often due to factors such as familial busyness. The third subtheme is 'poor parenting styles'. This subtheme highlights how inadequate parenting practices, domestic violence and lack of family support contribute to stress and exacerbation of mental disorders in PWMI. The fourth subtheme is 'hidden motive related to wills and testaments', which reveals how families may attempt to manipulate treatment to remove the inheritance rights of PWMI. The fifth subtheme is 'abandonment by family', which describes scenarios where families completely neglect PWMI, leading to inadequate care and medication adherence. The final subtheme, 'removal of PWMI from family units', describes instances where families sent PWMI to mental health facilities for permanent separation, sometimes even relocating to another city. To address these issues, a comprehensive approach is required that considers both the affected individuals and their families. An understanding of the motivations behind these behaviours is essential for the development of targeted interventions that promote family support, reduce stigma and improve the overall mental health environment in communities.

Centring Race: Unpacking Informality Through the Lens of Black Tax

AbstractTaking a historical and contextual approach to racialization, this study seeks to unpack informality in the development of welfare regimes. By centring race as a conceptual lens, it elicits knowledge hierarchies that exist within the formulation of social policies; particularly concerning the classification of informal/formal practices. It thereby draws on Black Tax as a lived example of family and kinship support in Southern Africa, in the development discourse predominantly understood as informal social protection or informal safety nets. Black Tax, however, is a colloquial term that claims its non-Western origin and struggle to co-exist in a Westernized unequal society. It does so by stressing its racialized nature as a necessary practice in response to racial inequality but also as a form of alienation from its origin, being the African philosophy of Ubuntu. In showing consequences and internal conflicts that arise when living across dominant (Western) and subaltern (African) divides, it challenges colonial dichotomies that continue to dominate the development discourse. In highlighting what the informal/formal dichotomy overlooks, the study seeks to encourage a process of repositioning and expanding informality to better account for its political role in ‘thinking’ and ‘doing’ development.

Understanding Behavioral Drivers of Iron and Folic Acid Supplementation and Vitamin A- and Iron-Rich Food Consumption among Women and Adolescent Girls in Niger.

This study examined drivers and barriers to iron and folic acid (IFA) supplementation and consumption of iron- and vitamin A-rich foods among women of reproductive age (WRA) and adolescent girls in Niger. This was an exploratory qualitative study using focus group discussions and semi-structured interviews. This study was conducted in the rural areas of three districts in Maradi and Zinder regions of southern Niger. The study included a purposive sample of 56 WRA (15-49 years), 34 non-pregnant adolescent girls (10-14 years), 105 family members and community leaders, 32 health workers, and 12 national and regional level stakeholders. Respondents demonstrated widespread knowledge of recommendations for IFA during pregnancy and had positive attitudes toward supplements. However, supply barriers were significant, and adherence was limited by side effects, among other constraints. Despite knowledge about and positive attitudes towards micronutrient source foods, respondents reported that limited food access was an overriding constraint to increasing consumption. WRA were seen as nutritionally vulnerable, however husbands were often not able to provide sufficient nutritious food and there was a cultural expectation that wives serve themselves food last. Adolescent girls were not seen as nutritionally vulnerable and there was little family support for their consumption of nutritious foods. Projects should work with local actors to develop multi-pronged solutions that address supply and access barriers for IFA and micronutrient-rich foods and to improve social support for nutrition.

Commentary: The COVID-19 pandemic and its impact on adolescent development: Embracing a more ecological perspective.

To assess the impact of the COVID-19 pandemic on young people's functioning, relationships, and well-being, four systematic reviews were put together to shed light on school experiences, family and peer relationships, and civic engagement during the pandemic. The reviews presented research findings on the protective role of several personal and contextual resources including intrinsic motivation, self-efficacy, family, school, peer, and community support, as well as the harming effect of risk factors, such as poor mental health, COVID-19-related stressors, and technological challenges, thus highlighting the significant role of both personal and contextual factors in adolescent development and well-being. Equally important, the research findings collectively suggested an ecological perspective of the determining factors, although the focus was largely on factors in immediate contexts (family, school, peers, and local community). Adopting a more holistic approach that also considers factors in other ecological contexts (e.g., partnership between immediate contexts, the influence of cultural values and norms along with educational and developmental transitions) can be crucial in addressing the specific needs of young people across diverse contexts and cultures during a pandemic and in general. In addressing their needs, the ever-growing digital space of young people can be utilized to connect them to services and supportive networks in their contexts including distal ones.

Patient Teaching Plan for Type II Diabetes: Addressing Genetic Predisposition and Hypertension

Type II diabetes, characterized by insulin resistance and eventual beta-cell dysfunction, is a global health crisis exacerbated by genetic predisposition and comorbidities such as hypertension. This review proposes a patient teaching plan aimed at managing Type II diabetes in individuals with genetic risk factors and concurrent hypertension. Recognizing that genetic predisposition significantly heightens the risk of developing Type II diabetes, the review underscores the necessity of incorporating genetic insights into patient education and care strategies. Hypertension, prevalent among those with Type II diabetes, complicates disease management and increases the risk of severe complications, necessitating a dual focus on both conditions. The review outlines a comprehensive teaching plan that includes education on the genetic aspects of diabetes, lifestyle modifications, and strategies for managing hypertension. It emphasizes the importance of a balanced diet, regular physical activity, weight management, stress reduction, and medication adherence. The plan also highlights the role of continuous monitoring through tools such as blood glucose logs and blood pressure measurements to track progress and adjust treatment as needed. Family involvement and support systems are identified as critical components of the teaching plan, providing emotional support and reinforcing healthy behaviors. By integrating personalized education, lifestyle changes, and ongoing support, the plan aims to improve patient outcomes, enhance quality of life, and effectively manage the combined challenges of Type II diabetes and hypertension. Keywords: Patient Teaching Plan, Type II Diabetes, Genetic Predisposition, Hypertension.

Relationship quality and educational attainment links to development of cardiometabolic morbidity and multimorbidity across middle adulthood.

The prevalence of cardiometabolic morbidity (e.g., high blood pressure, heart attack, stroke, type 2 diabetes) and multimorbidity development (2 or more cardiometabolic morbidities) are rapidly growing in the US. Cardiometabolic morbidity and multimorbidity are linked to poor well-being outcomes, high healthcare costs, and mortality. There is little known about cardiometabolic multimorbidity health disparities, particularly regarding mutable factors that might be targeted in future health interventions. In the present study, using a biopsychosocial framework (Biobehavioral Family Model), we examine whether cardiometabolic morbidity and multimorbidity development are linked to premorbid family and marital relationships and if it differs depending on socioeconomic status (i.e., educational attainment) using three waves of Midlife in the US (N = 4951). We assessed cardiometabolic development with three conceptualizations: number of cardiometabolic morbidities (i.e., count variable), individual cardiometabolic morbidities (i.e., diabetes, high blood pressure, stroke, heart attack), and severity of cardiometabolic multimorbidity (e.g., 3+ vs. zero morbidities). Family strain increased the number of cardiometabolic morbidities (OR = 1.17) and the severity of multimorbidity (e.g., 3+ morbidities: OR = 1.38). People with a high school education experienced family support as a buffer to the negative health impact of education level. Generally, marital quality appeared less impactful on cardiometabolic morbidity and multimorbidity development compared to family strain. Positive and negative family characteristics appear to function differently across educational attainment. These findings indicate that adults' non-intimate family relationships predict important outcomes such as diabetes, heart attack, stroke, and cardiometabolic multimorbidity and should be considered targets for preventative health interventions.

A corpus-assisted discourse study of parental concerns regarding multilingual child-rearing

ABSTRACT Many parents have concerns about raising their children with multiple languages. However, there is a paucity of previous research regarding parental concerns about multilingual child-rearing, particularly in multilingual societies. We address this gap with a corpus-assisted discourse study of parental concerns regarding multilingual child-rearing in Quebec, Canada. We created two corpora comprising 641 parents’ responses to an open-ended survey question regarding their main concerns about raising multilingual infants/toddlers (English corpus: 12,502 words, French corpus: 9,360 words). We examined frequencies, collocations, concordance lines, and longer segments to investigate the nature and strength of different concerns. Our results revealed that two previously-attested concern types – cognition concerns and exposure-fluency concerns – were most prominent. The results also provided more nuanced insights into the nature of these concerns. Moreover, the results revealed two additional concern types: concerns regarding trilingual/heritage language transmission and concerns about the effect of multilingualism on children’s identity and social/emotional well-being. These had not previously been attested. Our research makes a theoretical contribution by advancing knowledge about parental concerns and how they can contribute to the study of family language policies. Additionally, our findings may serve as the basis for improving support for multilingual families.

Construction of a nomogram risk prediction model for depressive symptoms in elderly breast cancer patients

The primary objective of this study was to identify the factors associated with the development of depressive symptoms in elderly breast cancer (BC) patients and to construct a nomogram model for predicting these symptoms. We recruited 409 patients undergoing BC treatment in the breast departments of two tertiary-level hospitals in Jiangsu Province from November 2023 to April 2024 as our study cohort. Participants were categorized into depressed and non-depressed groups based on their clinical outcomes. Univariate and multivariate logistic regression analyses were employed to identify independent risk factors for depression among BC patients. Multivariate analysis revealed that monthly income, pain score, family support score, and physical activity score significantly influenced the onset of depression in older BC patients (P < 0.05).The risk prediction model, constructed using these identified factors, demonstrated excellent discriminatory power, as evidenced by an area under the ROC curve (AUC) of 0.824. The maximum Youden index was 0.627, with a sensitivity of 90.60%, specificity of 72.10%, and a diagnostic threshold value of 1.501. The results of the Hosmer-Lemeshow goodness-of-fit test (χ² = 3.181, P = 0.923) indicated that the model fit the data well. The calibration curve for the model closely followed the ideal curve, suggesting a strong fit and high predictive accuracy. Our nomogram model exhibited superior predictive performance, enabling healthcare professionals to identify high-risk patients early and implement preventative measures to mitigate the development of depressive symptoms. This study is a cross-sectional study that lacks longitudinal data and has a small sample size. Future research could involve larger samples, multicenter studies, and prospective designs to build better clinical predictive models.

Mediating Effect of Emotional Symptoms on the Association Between Alexithymia and Substance Dependence in Patients with Substance Use Disorder: The Protective Role of Family Support and Self-Efficacy.

The etiology of the association between alexithymia and substance use is complex, and there is an urgent need to explore the related factors. The aims of this study were to develop a conceptual model to verify the mediating effect of emotional symptoms and moderating effect of family support and self-efficacy on the association between alexithymia and substance dependence. A total of 117 participants (103 males and 14 females; age at 35.29 ± 8.72 years) with substance use disorder were analyzed. Outcome measures included demographic characteristics, severity of dependence, symptoms of alexithymia, emotional symptoms (depression, anxiety, and somatic symptoms), level of family support, and self-efficacy. The PROCESS macro in SPSS was used to estimate path coefficients and adequacy of the moderated mediation model, which was adjusted for demographic characteristics. Most of the participants had amphetamine use disorder (n = 42, 35.9%). After controlling for the effects of demographic characteristics, the moderated mediation model showed that the association between alexithymia and substance dependence was mediated by emotional symptoms and moderated by family support and self-efficacy. A higher level of family support reduced the effect of alexithymia on emotional symptoms, and a higher level of self-efficacy reduced the effect of emotional symptoms on substance dependence. Family support and self-efficacy have a protective effect on the association between alexithymia and substance dependence in patients with substance use disorder. Early interventions to enhance these protective factors may be beneficial.

Nova Scotia's Deemed Consent for Deceased Organ Donation: Family Member Perspectives and Experiences in the ICU Setting.

The purpose of this study was to explore the experience of family members of potential organ donors in the intensive care unit following the change to deemed consent legislation in Nova Scotia. This was a qualitative study with semistructured, in-depth interviews with 17 family members who were asked to make an organ donation decision on behalf of patients admitted to the intensive care unit in Nova Scotia. We analyzed themes using a descriptive approach. Participants were recruited from the organ donation organization in Nova Scotia, Canada. Participant awareness and knowledge of the Human Organ and Tissue Donation Act legislation varied from individuals having no awareness and knowledge of the bill to those who had awareness and optimism that the legislation would be beneficial for increasing organ donation rates in the province. Other themes emerging from the interviews included (1) COVID context, (2) quality of healthcare professional care, (3) family support, and (4) barriers to donation (waiting, consent questionnaire, and patient transfers). The Human Organ and Tissue Donation Act legislation included enhanced support, which was viewed positively by family members. There is a need for continued evaluation as most participants felt it was too early to see the tangible impacts of the newly implemented legislation.

Gambaran Pengasuhan Orang Tua di Suku Nias

Parents are the primary and first educators of children within a family. In the process of emotional adjustment for children, this cannot be separated from family support. Communication is the key to relationships within a family. The parenting style of the Nias ethnic group has its own uniqueness influenced by local culture and values. According to Vinden (2001), there are two parenting styles: authoritarian and authoritative. This study aims to describe the parenting practices of the Nias ethnic group. The research employs a quantitative method using descriptive statistical analysis. The population for this study consists of parents in the Nias ethnic group, with a total of 60 subjects. The sampling technique used is purposive sampling. This study utilizes the parenting style scale developed by Vinden, which has been modified by O'Reily and Peterson (2014) and adapted into Indonesian by Hasanah and Rusli (2020). Based on the research results, the mean for authoritarian parenting style is 18.9 with a standard deviation of 1.50, while the mean for authoritative parenting style is 10.3 with a standard deviation of 1.84. This indicates that the authoritarian parenting style among parents in the Nias ethnic group is higher.

Predictors of self-care in kidney transplant patients according to preoperative dialysis: A comparative study

BackgroundPreemptive kidney transplantation (PKT) is associated with reduced dialysis-related morbidity and improved graft survival, which has led to an increase in the prevalence of PKT. The distinct clinical pathways of PKT and non-preemptive kidney transplantation (NPKT) patients may affect their ability to perform self-care, a key factor in post-transplant recovery. However, there is ongoing controversy regarding which group demonstrates better self-care abilities, highlighting the need to explore the factors influencing self-care in each group. ObjectivesThis study aims to identify and compare predictors of self-care in PKT and NPKT groups. MethodsWe collected data from 209 KT recipients, consisting of 101 PKT and 108 NPKT patients, using self-administered questionnaires. These questionnaires assessed general and disease-specific characteristics, stress, social support, and self-care behaviors. Data were analyzed using descriptive statistics, t-tests, ANOVA, and multiple regression analysis. ResultsThe study identified significant predictors of self-care among both PKT and NPKT patients. For PKT patients, marital status (β =.19, p=.033) and family support (β =.28, p=.006) are key predictors of self-care, with those having spousal support and strong family networks reporting better self-care levels. Conversely, in NPKT patients, significant predictors of self-care included marital status (β =.31, p=.001), employment status (β =.29, p=.007), post-transplantation duration (less than 36 month) (β =.-.22, p=.015), post-transplantation duration (36-72 month) (β =.-.33, p=.001), and stress levels (β =-.20, p=.028). ConclusionsThe study provides valuable insights into the predictors of self-care based on preoperative dialysis status, illustrating distinct predictors between the growing population of PKT and NPKT patients. These findings emphasize the need for personalized nursing strategies to enhance post-transplant self-care, tailored to individual patient characteristics.

Health Literacy in Non-dialyzed Chronic Kidney Disease Patients: A Cross-Sectional Study

Objective: To explore the current status and influencing factors of health literacy in non-dialyzed chronic kidney disease (CKD) patients, and to provide a basis for developing more comprehensive and effective interventions. Methods: 206 CKD patients hospitalized or followed up in outpatient clinics in the Department of Nephrology of a tertiary hospital in Baoding City were conveniently selected from June to August 2024. General information questionnaire, Health Literacy Scale for Chronic Disease Patients, Perceived Social Support Scale, and Positive Psychological Questionnaire were used to conduct the survey. Results: The health literacy score of non-dialyzed CKD patients was (91.04±15.17); The results of multiple linear regression analysis showed that the number of comorbidities, education level, per capita monthly household income, family support, and optimism were the influencing factors of health literacy in CKD patients. Conclusion: The health literacy of non-dialyzed CKD patients is low, and healthcare professionals should develop scientific and reasonable intervention programs based on their influencing factors in order to enhance the health literacy and delay disease progression.

Impact of perceived social support on family resilience in patients with ischemic stroke: A mediation model analysis

BackgroundIschemic stroke events impose a substantial burden on both families and society, underscoring the critical importance of early intervention and prevention strategies. The dearth of familial and societal support significantly impacts coping styles and family resilience, with negative coping styles potentially linked to diminished levels of family resilience. However, empirical evidence supporting these associations remains lacking. ObjectiveThe aim of this study was to examine the association between simplified coping style, perceived social support and family resilience in patients with ischemic stroke, while also investigating the potential mediating role of simplified coping style in the relationship between perceived social support and family resilience. MethodsConvenience sampling was employed to select patients with ischemic stroke from three tertiary hospitals in Hunan Province between May and November 2021. A comprehensive investigation was conducted using a General data questionnaire, Simplified Coping Style Questionnaire, Perceived Social Support Scale and Family Resilience Rating Scale. The mediating effect was analyzed using PROCESS macros in SPSS, while the significance was tested through the Bootstrap method. ResultsA total of 310 questionnaires were distributed, with 7 identified as containing errors, omissions, or losses. Of these, 303 valid questionnaires were collected, yielding an effective response rate of 97.74 %. The scores for family resilience among ischemic stroke patients showed significant positive correlations with simple coping style (r = 0.59, P < 0.01) and perceived social support (r = 0.69, P < 0.01). Additionally, there was a positive correlation between perceived social support and simple coping style (r = 0.56, P < 0.01). Furthermore, the simple coping style played a crucial mediating role in the relationship between perceived social support and family resilience by accounting for approximately 20.70 % of the effect size. ConclusionThe findings suggest that enhancing positive coping styles and effective social support can enhance the level of family resilience in patients with ischemic stroke. Therefore, medical professionals should focus on improving social support while targeting coping styles as an intervention strategy to actively adjust the coping modes, ultimately elevating the level of family resilience in patients with ischemic stroke.

Global Research Trends on Factors Affecting Tuberculosis (TB) Adherence and Dropout: A Bibliometric Study

ABSTRACT Tuberculosis (TB) remains one of the significant global health challenges, especially in resource-limited countries. Adherence to TB treatment is key to successful therapy and preventing the emergence of drug resistance. However, dropout rates or discontinuation of treatment before completion remains a major problem that needs to be addressed. This study aims to analyze global trends in research focusing on factors affecting TB treatment adherence and dropout through a bibliometric approach. Using the Publish or Perish application, relevant scientific articles with keywords such as treatment adherence, tuberculosis, treatment dropout, and influencing factors were searched from 2017 to 2024. A total of 50 articles from Google Scholar were further analyzed to identify by publication year, country, publisher, citation, and article type. The data was then processed using VOSviewer to visualize the relationship between keywords and research trends through Network Visualization, Overlay Visualization, and Density Visualization. The results of the analysis showed that Indonesia is the country with the highest number of publications, demonstrating a great commitment in addressing the TB challenge. Articles published in reputable journals, especially those adopting systematic and meta-analysis approaches, show great impact with a high number of citations. Bibliometric visualizations reveal that the focus of research lies on factors such as treatment, adherence, health workers, and access. In addition, family and community support was also found to be an important element in ensuring treatment adherence. In conclusion, this study emphasizes the need for a comprehensive and collaborative approach in improving TB treatment adherence and preventing dropouts. Further research in this area is needed to address existing gaps and develop more effective strategies in the fight against TB. Keywords: Treatment Adherence, Tuberculosis, Dropout, Influencing Factors, Health Worker

Healthcare Professionals' Perspective on Supporting Patients and Family Caregivers in End-Of-Life Care Decision-Making: A Qualitative Study in Specialist Palliative Care.

Healthcare professionals in specialist palliative care have a key role in conducting end-of-life care discussions with patients and their family caregivers. We aimed to identify key barriers and facilitators for healthcare professionals in specialist palliative care to support patients and their family caregivers in decision-making for patient end-of-life care. Twenty-two healthcare professionals from different healthcare professions were recruited from a large regional specialist palliative care service in Ireland comprising 2 hospice sites. Five focus groups were conducted with participants. Data were member checked and analyzed using thematic analysis. Open communication and trusting relationships with patients and family caregivers combined with sufficient time for early and phased exploration of the patient's preferences for end-of-life care, were key facilitators for participants. Family caregivers keeping information from the patient, family misunderstanding about who is responsible for decision-making, and a lack of involvement of other specialties in end-of-life care discussions were perceived by participants as key barriers. Although participants indicated they had sufficient expertise to support patients in end-of-life care decision-making, they felt that end-of-life care discussions were not solely the responsibility of specialist palliative care services. Open communication with patients in end-of-life care decision-making can be of central importance for healthcare professionals in specialist palliative care. Further research is needed to understand the role of healthcare professionals outside of specialist palliative care in end-of-life care discussions and decision-making.

“What is the point of being able to enter a building if the service or activity is not adapted?”: Leisure opportunities for people with severe disabilities’

Leisure and relationships are crucial for human development, especially in the youth stage, and are recognised rights. Notwithstanding, young people with disabilities encounter many barriers to access these activities, especially those with severe disabilities. We aim to analyse their experiences and those of their families in this area. We conducted a reflexive thematic analysis of 25 interviews held with young people with severe disabilities and/or their guardians from different areas of *anonymised* (Spain). We detected difficulties, such as access to resources, and the relevance of family support and its impact. Aggravating factors, such as being institutionalised, being a migrant or having multidisability were assessed. After discussing participants’ proposals with current research, we proposed measures to improve social inclusion in the leisure of young people with severe disabilities, such as recognising the leisure assistant figure, the training for and more professionals, or the incorporation of the intersectional perspective into specialised social services.