Search Results (221)

Background/Objectives: Family-Centered Care (FCC) is an established standard in pediatric rehabilitation, but it has been studied almost entirely inside health services; whether its principles survive the move into community settings is largely unknown. This paper describes how caregivers perceive the family-centeredness of a community-based adapted sport program and characterizes child quality of life and caregiver well-being. Methods: Cross-sectional study within the “Skill-In” program (University of Messina). Nineteen caregivers of children with neurodevelopmental disabilities completed the MPOC-20, the KIDSCREEN-52 proxy version and the CarerQoL, analyzed with Spearman correlations and bootstrap confidence intervals. Results: The overall MPOC-20 mean item score was 5.43/7 (SD 0.83), concealing a wide spread from Respectful and Supportive Care (6.25) to Providing General Information (3.78). “Not applicable” responses (14.2%) clustered in items presupposing a clinical provider. KIDSCREEN-52 raw sums were converted to Rasch-based T-values (norm: mean 50, SD 10). Eight of ten dimensions fell within half a standard deviation of the norm, including Social Acceptance (47.65); two did not, Social Support and Peers (34.58) and Autonomy (39.42), each over one standard deviation below. Caregivers reported favorable well-being (CarerQoL-VAS 7.32/10), though six of nineteen reported no support. Associations between care processes and family outcomes were weak. Conclusions: A sport organization with no clinical mandate delivered the relational core of family-centered care comparably to rehabilitation services, while falling short on structured information. The children’s quality-of-life profile was normal on most dimensions but selectively low on peer support and autonomy. Acceptance, on this evidence, is not connection: social participation must be designed for, not assumed. Full article

Effective motor neurone disease (MND) management depends on patient and carer involvement in decisions about interventions and future care. Communication and cognitive impairments are common in MND and have under-recognised consequences for shared decision making and autonomy. This narrative conceptual review draws on empirical qualitative research with people living with MND and unpaid family carers and the literature specifically concerning shared decision making and communication in MND. Themes relating to communication, information use, and decision making styles were mapped onto an ALS/MND multidisciplinary decision making model. Enhancements to the model include expanding the decision making context beyond in clinical activity, embedding communication and cognitive skills and accommodations across stages, and acknowledging risks to collaborative decision making. Practical strategies for clinicians, healthcare services, people living with MND, and family carers are proposed to ensure that communication is foregrounded in-person-centred MND care. Observational and implementation research is required to evaluate and refine the proposed approaches. Full article

The research aimed to understand the different cultural needs relating to death and dying of migrant populations in Western Sydney, Australia, and how end-of-life care can be provided in culturally safe ways which can, in turn, inform the policies that shape palliative care and bereavement service delivery. The mixed methods design for this study used an online quantitative survey using the Death Literacy Index, key informant qualitative interviews, culture-based community focus groups, and individual Photovoice interviews with carers. In all, 266 participants across the three largest migrant communities and local area health services took part in the research. The results revealed the importance of cultural practices and rituals for people at end of life and that providing space for these is crucial to cultural safety in service contexts, in addition to relational trust and the need for community input to improve the services that affect them. There is also a need for greater knowledge and understanding in the end-of-life space through two-way exchanges between communities and service providers. Finally, there are important ways that the existing services can facilitate cultural safety and ways of increasing the availability of culturally appropriate end-of-life and bereavement services for the community. Full article

Background/Objectives: Given the limited evidence internationally, this qualitative study employed discovery interviews to explore the lived experience of patients who developed Hospital-Acquired Malnutrition (HAM) and that of their carers. Methods: Seven (two patients [(n = 1 female] and five carers [n = 3 female]) completed discovery interviews with an experienced independent interviewer. Carers were either spouses or parents. Responses were thematically analyzed using a constant comparative approach. Results: A key theme was ‘It’s not about the food, it’s the hospital system’ with the needs of the system dominating, including when patients were feeling at their worst. Subthemes were ‘integration of care’ and ‘patient acuity’, including symptoms that impacted food intake. Another theme was ‘Who is looking out for the patient?’, exploring ‘reliance on carer advocacy’, and ‘variation in staff involvement’. One carer said, “… the girl that delivered the meal tray was the only one in our hospital stay who actually said to [the patient], ‘I’m so glad you’re sitting up. I was worried about you because you hadn’t eaten for so long?” A persistent but comparatively less strong theme was ‘When it is about the food’ which explored ‘the quality of the food’ and ‘receiving information on eating and drinking’. Conclusions: The three key themes identified from carers and patients were hospital system impacts, care co-ordination and, less strongly, experiences with food quality and information. The key opportunities to prevent, or better support the nutritional care of patients with, HAM may be through improving systems and care co-ordination. Full article

Background: While sedentary behaviour has been shown to be associated with adverse health outcomes for people with asthma, limited research has been done on how to improve sedentary behaviour in this population. We aimed to obtain key stakeholders’ perspectives on what is important to reduce sedentary time in people with severe asthma. Methods: Adults with severe asthma and their carers were invited to participate in a nominal group technique session. Participants volunteered strategies they considered important for optimising sedentary behaviour (reducing sedentary time and/or breaking up prolonged sedentary bouts). Following this, participants were instructed to identify the 10 most important strategies and rank these from most (10 points) to least (1 point) important. The 10 strategies that scored the highest proportion of the total possible score across all nominal group technique sessions were reported, and two independent researchers identified and deductively coded behaviour change techniques (BCTs) within these strategies. Results: Twenty participants attended one of five nominal group technique sessions. Severe asthma participants (n = 17) had a mean age (SD) of 69.9 (8.7) years, and self-reported spending a mean (SD) 7(3) hours per day sedentary. Carers (n = 3) had a mean (SD) age of 57.3 (21.0) years and self-reported a mean (SD) of 5 (2) hours of sedentary time per day. A total of 116 individual strategies were volunteered. With a weighted score of 8.3 (out of 10), “have a reminder or timer to minimise sedentary behaviour” was the highest weighted scored strategy. A total of 13 BCTs were coded to the list of the 10 highest weighted scored strategies. Conclusions: This study identified strategies important to people living with severe asthma and their carers for reducing time spent in sedentary behaviour. These strategies were coded to BCTs and can inform the design of future interventions to optimise sedentary behaviour. Future research should evaluate the effectiveness and feasibility of implementing these strategies. Full article

Inclusive education is a cornerstone of the South African educational policy; however, effectively supporting learners with specific learning disorders remains a significant challenge, particularly within specialized school settings. This study explored the strategies and experiences of teacher-carers in promoting social support for learners with Developmental Coordination Disorder (DCD/Dyspraxia) in Johannesburg. Guided by an interpretivist paradigm, the researcher employed a qualitative study design, conducting semi-structured interviews with twelve teachers. Thematic analysis revealed that educators fostered inclusivity and social competence through individualized, learner-centred approaches, peer-mediated activities, and the creation of structured social learning opportunities. However, the findings also identified significant barriers, including a profound lack of teacher knowledge about Dyspraxia, insufficient training, and an absence of systemic support and awareness campaigns. These issues often led to misdiagnosis, feelings of teacher inadequacy, and ad hoc support strategies. The findings highlight that adequate support for learners with Dyspraxia depends not only on individual teacher dedication but also on structured professional development and institutional backing. The study recommends implementing continuous teacher training, adapting the curriculum, and launching nationwide awareness initiatives to better equip educators and foster inclusive learning environments. This study offers context-specific insights that can inform inclusive education practices in similar resource-constrained environments. Full article

Whilst advance care planning (ACP) is important to ensure person-centred end of life care, there is sparse evidence about factors contributing towards engagement for people from Mandarin and Cantonese speaking backgrounds (MCSB) affected by cancer. This study aimed to establish barriers and facilitators for quality ACP among people from MCSB with cancer and carers. A qualitative study utilising semi-structured interviews and focus groups was conducted. Participants included adult community members from MCSB in New South Wales who had accessed cancer care services in Australia as a support person or a patient in the last five years with recruitment done purposefully. Data collected from eligible consenting participants were audio/video recorded, transcribed verbatim and analysed using the Framework Method applying the Theoretical Domains Framework. Eighteen people participated (11 in two focus groups, seven individual interviews). Key barriers to engagement with ACP were unclear understanding of process and conduct, poor quality communication by healthcare staff, resource constraints and cultural misalignment of ACP concepts. The main facilitators were openness of participants to discussions, culturally informed community resources and dedicated ACP services. Co-design provides a useful approach to address varied identified factors. At the system and service level, co-design with these communities and healthcare providers could potentially develop resources to assist these communities in engaging with ACP, including preparing for ACP communication. Understanding and acknowledging cultural factors that impact ACP and integrating this knowledge in ACP communication may enhance engagement. Full article

Background/Objectives: The increasing use of home mechanical ventilation in Poland highlights the need for reliable and culturally appropriate tools to assess caregiver quality of life. This study aimed to translate, culturally adapt, and evaluate the initial psychometric properties of the Polish version of the Adult Carer Quality of Life Questionnaire (AC-QoL) among informal caregivers of adults receiving home mechanical ventilation. Methods: A total of 203 informal caregivers participated. The cross-cultural adaptation followed standard procedures. Confirmatory Factor Analysis was conducted to assess the factor structure. Reliability and validity were assessed using Cronbach’s alpha, McDonald’s omega, Composite Reliability, Average Variance Extracted, and correlations with caregiver burden, perceived stress, and life satisfaction. Results: Confirmatory Factor Analysis supported the original eight-factor structure, demonstrating good model fit (CFI = 0.954; TLI = 0.950; RMSEA = 0.069; SRMR = 0.078), with factor loadings ranging from 0.64 to 0.96. The Polish version of the AC-QoL demonstrated high internal consistency (Cronbach’s α = 0.95). Convergent validity was confirmed by significant correlations with caregiver burden, perceived stress, and life satisfaction. Conclusions: The Polish version of the AC-QoL demonstrates promising psychometric properties and may support clinical assessment and research in home-based long-term care. Full article

Estimates suggest that approximately 400 million dogs are kept as pets worldwide. Despite their popularity, around 10% to 30% are surrendered to rescue shelters each year. Shelter workers play a pivotal role in the success of dog adoptions and provide ongoing support to help owners keep these dogs in their homes. However, research that captures their perspectives and experiences regarding the dog adoption process remains limited. Royal Society for the Prevention of Cruelty to Animals Queensland shelter teams participated in six focus group discussions to share their perspectives and experiences of the dog adoption process in their shelters. Reflexive thematic analysis of the gathered data generated three themes: 1. “Doing great adoptions” starts with an inclusive, well-resourced application process and a skilled team. 2. Finding the right fit involves navigating the duality of carer and advocate through honest, informative interactions with the whole family. 3. Successful outcomes involve supporting and educating the public to care for and keep their dog. This grounded understanding of the challenges facing shelters in their work could provide valuable feedback to help shelter leaders and staff develop policies and practices that support positive adoption outcomes, tailor programmes to local needs, and reduce return rates. Full article

Suicidality is a significant and persistent public health concern, and people who are suicidal report negative experiences with clinical services. Peer-based interventions are a rapidly growing component of mental health care and suicide prevention. This scoping review’s aim is to identify, summarise and synthesise the design, features and evidence for peer-led models and interventions for people experiencing emotional distress or suicidal crisis. This study followed the Joanna Briggs Institute scoping review guidelines. Online databases were searched in May 2022 and in October 2024. A total of 59 papers were identified. The scoping review provides an overview of key components of service models and interventions. In general, peer-led programs were widely accepted, with participants reporting positive improvements to mood, social connectedness, communication and coping skills. Despite the importance of training and supervision, a review of training content revealed a discordance between training and peer work principles in some cases. A concentration on facilitation of the service model or intervention rather than on the peer model itself meant there was limited information on the empirical and ethical arguments that supported the model of care. Future research is needed on peer-led models and how involvement and engagement of peers, consumers and carers can positively influence the planning, design, implementation and evaluation of new service models and interventions. Full article

Autistic people experience lower rates of employment, education, and participation, and the identification of autistic people is growing rapidly with improved early identification, increased community awareness, and improved identification in previously under-diagnosed populations. Although inclusive education policies and practices present an opportunity to bolster the transition into adulthood for autistic young people, there is little mandate around these processes and supports. This qualitative study gathered the perspectives of people with direct experience of mainstream school transition supports through 46 interviews with autistic young people, educators, and parents/carers. The participants’ narratives were interpreted through the lens of self-determination theory to understand how inclusive schools can best fulfil autistic young peoples’ needs for competence, autonomy, and relatedness. The findings enable recommendations for inclusive school practice and supports, informed by the stories of those who have experience with the phenomenon. Full article

To address the needs of an increasingly ageing population, the World Health Organisation (WHO) has established the Age-Friendly Cities and Communities network. This initiative aims to support interested municipalities in promoting active ageing by improving environments and services from a municipal perspective. A notable example is the city of Jaén (Spain), a municipality in southern Spain with just over 100,000 inhabitants that is working to join this network. As part of this process, an assessment was carried out to identify the specific needs and demands of older people. The methodology used follows the recommendations of the WHO, using the guidelines of the Vancouver Protocol, which is based on a participatory approach and shared diagnosis. The study involved 132 informants, including older people, service providers, and carers of older people. Based on the Age-Friendly Cities (AFC), this study analyses the needs and demands of older people across its eight domains. While particular attention is given to social relationships and participation, the findings also highlight significant challenges related to the physical and built environment, especially public spaces and transportation. In terms of social relations, older people in Jaén show a strong sense of belonging, valuing the closeness of their social environment, especially their neighbourhood and family members. However, there are differences between districts, as well as some concern that this closeness may weaken in the future. In terms of participation in leisure activities, there is a demand for more attractive and accessible options. With regard to participation in associations or politics, the former is more common, although older people still consider it to be insufficient. Full article

While the health benefits of physical activity (PA) and reduced sedentary behaviour (SB) are well established, informal carers remain an under-researched group. Despite being known to face many barriers to PA, informal carers’ activity levels remain unclear due to mixed findings from previous research. Specifically, objective PA and SB levels of informal carers in Great Britain are currently unknown. The aim of this study was to examine PA and SB among informal carers using accelerometer data from the ‘Age 46’ Survey of the 1970 British Cohort Study (BCS70). Analyses of Covariance and Logistic Regressions were performed to: (i) compare carers’ and non-carers’ PA and SB, (ii) examine the impact of caring hours on PA and SB, and (iii) identify predictors of adherence to the UK Chief Medical Officers’ PA guidelines. After adjusting for covariates, (i) no differences were observed in PA or SB outcomes between carers and non-carers (p > 0.05) (e.g., mean daily step count 9316.06 vs. 9554.11 and mean sitting time 1.09 h/day vs. 1.19 h/day, respectively). (ii) Caring hours were not associated with differences in PA or SB (p > 0.05). (iii) Logistic regressions revealed very low adherence to PA guidelines among carers: 2% met the moderate-to-vigorous PA guideline, 26% met the muscle-strengthening guideline, and only 1% met the combined recommendations. Demographic and health variables did not explain adherence to these guidelines. This study found no significant differences in objectively measured PA and SB between informal carers and non-carers or caring hours. However, adherence to the UK CMOs’ PA guidelines among carers was extremely low. These findings provide the first objective benchmark of carers’ PA and SB patterns in Great Britain and highlight guideline adherence as a key area for future interventions. Future research should consider the wider context of caring in order to develop flexible, tailored interventions that can support carers in achieving an active lifestyle whilst managing responsibilities. Full article

Background/Objectives: Stroke survivors require life-long secondary prevention to reduce recurrence, but they also often face long-term impairments that may limit medication adherence (MA) including cognitive, physical, and psychological effects. This updated qualitative meta-synthesis aims to descriptively explore and synthesise the experiences and perspectives of stroke/TIA survivors, informal and formal carers of stroke survivors, and healthcare professionals involved in post-stroke/TIA care, with a focus on factors influencing and hindering MA. Methods: A qualitative meta-synthesis was conducted in accordance with PRISMA guidance. Searches were undertaken across MEDLINE, CINAHL, Embase, PsycINFO, Scopus and Web of Science for studies published from 1 January 2018. Study quality was assessed using the Joanna Briggs Institute checklist and data synthesised using Thomas and Harden’s method. Results: Of 5463 titles and abstracts screened, 212 underwent full-text review with 13 papers meeting inclusion criteria from eight countries with a total of 435 participants. Seven key themes were identified: knowledge and understanding, beliefs and attitudes, practical barriers, social support, healthcare system, psychological factors and medication characteristics. Survivors showed a varied understanding of their condition and prescribed medicines, with unclear communication often contributing to confusion. Beliefs and attitudes shaped adherence, ranging from confidence in treatment to scepticism. Practical barriers included financial costs, physical impairments, and limited access to services. Social support from family, friends, and healthcare professionals was also important. Psychological wellbeing, coping strategies, and medication side effects further influenced adherence, highlighting the challenges faced by this patient group. Conclusions: Medication adherence post-stroke/TIA is shaped by multiple complex factors including knowledge, beliefs, attitudes, and lived experience. As a descriptive synthesis of qualitative evidence, these findings do not permit conclusions regarding causality or intervention effectiveness but provide insight into perceived barriers and facilitators that may inform future intervention development and clinical questioning. Full article

The choice to age in a familiar home environment within the community without relying on residential services can prolong independence, provided care services are customised to the specific needs of the household. However, this model of care provision frequently conceals the hidden costs for women who are often the spousal carer. The navigation of care needs of a spouse when aged 65 and above often contains challenges linked to accessing quality community care and respite. These challenges are further compounded by the impact of personal health realities that come with ageing. To explore the support needs of older adults choosing to remain in their own homes, qualitative semi-structured interviews took place with 26 individuals aged 65 plus. This article concentrates on a specific subset of research using constructivist grounded theory to examine the caregiving realities of six women and one man. A significant finding was that these predominantly female carers often felt unsupported, fatigued, and time-poor, largely attributable to the scale of care needed. Formal care support was particularly valued when it prioritised relationships over task-oriented care. A key recommendation to enable couples to remain living at home and avoid residential care is that more support for spousal (informal) carers is required. Full article