Search Results (43)

Background: In line with international aging policies, most people with dementia receive care at home. Community-based respite services aim to relieve, support, or share caregiving responsibilities. More person-centered knowledge based on experiences from this group is needed to increase informed decisions about planning of qualitative respite care. The aim of this study is to describe how people with dementia experience respite care with alternating housing, i.e., living partly at home, partly in residential care, refer to their everyday life and well-being. Methods: A mixed-methods design was used. The qualitative approach focused on variations of dilemmas in interviews with people with dementia who were granted and received respite care (n = 8). Also, a quantitative approach focused on quality of life using behavioral and psychological symptom scores. Results: Everyday life at the respite care accommodation described by people with dementia included morning routines, variation in the environment, activities in the company of roommates, but also a lack of activities. Social belonging was described by people with dementia through living with roommates and through social contact with the healthcare staff. Quality of life and behavioral and psychological ratings varied between individuals and settings, but no consistent pattern was identified. Conclusions: Respite care appears to maintain a high quality of life and a low level of psychological symptoms for most of the people with dementia. Although the sample was small, these results are nevertheless an important contribution to the phenomenon, experiences of respite care by people with dementia, that need further research. Furthermore, these results can give decision-makers guidance for professional care efforts. Full article

Chosen family caregivers assume caregiving roles by choice rather than by blood or legal relation. Chosen family caregivers play a critical yet often invisible role in supporting older adults living with HIV. Unlike traditional family caregivers, many chosen family members are themselves living with HIV or other chronic health conditions, creating unique dynamics of mutual support, resilience, and vulnerability. Older LGBTQ adults are disproportionately reliant on chosen family, often due to stigma, estrangement from biological family, or social marginalization, highlighting distinct challenges in caregiving relationships. Women in chosen family roles frequently experience compounded burdens, balancing emotional, physical, and logistical care responsibilities alongside broader social and structural pressures. Despite their essential contributions, chosen family caregivers remain largely unrecognized within healthcare systems, limiting their access to formal support, respite, and decision-making authority. This commentary synthesizes the existing literature and conceptual perspectives to examine the social, gendered, and health-related dimensions that distinguish chosen family caregiving. It highlights key gaps in recognition and support and outlines implications for policy, research, and practice aimed at strengthening care for older adults living with HIV. Full article

Background: Home care (HC) has expanded globally, offering individualized care and reducing hospital demand, but the role of the family caregiver imposes a significant physical and emotional burden, particularly during health crises like coronavirus disease 2019 (COVID-19). This study aimed to analyze the performance and quality of life perspectives of family caregivers during the pandemic. Methods: A cross-sectional, descriptive and quantitative study was conducted with 101 family caregivers from the Better at Home Program in Santo André, Brazil, between February and March 2021. The World Health Organization Quality of Life-BREF (WHOQOL-BREF) instrument was used to assess quality of life, and the Barthel Index was used to evaluate the degree of patient dependence. Results: The sample showed a predominance of women (mean age 56 years, SD = 12.541; 13.9% aged 20–40 years, 41.4% aged 43–59 years, 44.7% aged 60–84 years) convenience sample, with low education and family income up to two minimum wages. Most caregivers were fully dedicated to patients with high dependence (89.1% in total or severe dependence, mainly due to neurological disorders). Overall quality of life was classified as “needing to improve” or “regular” in 61.4% of cases, with the pandemic intensifying perceived difficulties and negatively impacting all quality of life domains. A high prevalence of untreated chronic diseases and low COVID-19 vaccination rates were concerning findings. Conclusions: Family caregivers represent a vulnerable population requiring public policies and integrated support strategies, including quality of life assessment, psychological support, financial assistance, and respite care to ensure continuity of humanized, quality care. Full article

Dementia caregiving represents a major public health challenge, with spousal caregivers assuming the greatest burden. Spouses, themselves typically older adults, provide high intensity, long-term, and largely unpaid care across all stages of cognitive decline. Despite their central role in dementia care, the health consequences experienced by spousal caregivers remain insufficiently characterized in the literature and inadequately addressed in clinical and public health practice. This structured narrative review synthesizes current evidence on the multidimensional impact of dementia caregiving on the physical, psychological, cognitive, social, and financial health of spousal caregivers. It further contextualizes these consequences within the trajectory of dementia progression, and identifies interventions, support systems, and policy considerations necessary to mitigate caregiver burden. Spousal caregivers experience disproportionate burden due to continuous, escalating responsibilities that often mirror the progressive deterioration of their partners. Emotional burdens, including uncertainty during pre-diagnostic stages, role strain, conflict, loss of intimacy, and anticipatory grief. Physically, spouses endure musculoskeletal strain, sleep disruption, poor nutrition, and heightened frailty risk. Psychologically, spousal caregivers exhibit elevated rates of depression, anxiety, loneliness, and stress-related disorders. Socially, caregivers experience substantial isolation, stigma, and erosion of social networks. Financial hardship, including early retirement, reduced employment, and uncompensated care hours, further exacerbate stress. Evidence suggests that chronic caregiving stress contributes to biological changes such as immune dysregulation, inflammation, acceleration, aging, and potential cognitive decline in caregivers themselves. Caregiver burden influences patient outcomes as evidenced by increased emergency department use, falls, and earlier institutionalization in persons with dementia whose caregiver is subjected to a high burden. Current care models rarely include routine, caregiver assessment or structured guidance following diagnosis, resulting in substantial unmet needs. Effective mitigation requires integrated, stage-sensitive interventions, including psychosocial support, caregiver education, respite services, culturally tailored programs, and digital health tools, alongside broader policy reforms to reduce financial and structural barriers. Full article

Background/Objectives: Palliative care (PC) has traditionally focused on patients with cancer and their families. However, individuals living with advanced non-malignant chronic diseases and their caregivers face comparable challenges that significantly affect their quality of life. This study aimed to explore the PC needs of patients with advanced non-malignant chronic conditions through the lived experiences of both patients and their informal caregivers. Methods: Semi-structured interviews were conducted with eight patients and nine caregivers recruited via the Municipality of Katerini “Help at Home” program (Jan–Mar 2025). Interviews were audio-recorded, transcribed verbatim (in Greek), and analyzed inductively using reflexive thematic analysis. Ethical approval was obtained from the International Hellenic University (Ref. No. 18/22.12.2022), and official consent was gained from the Municipality of Katerini (Approval Ref. No. 7803-/30/01/2025). Results: Five themes emerged: (1) basic daily care and physical support; (2) psychosomatic and emotional impact; (3) social withdrawal and role change; (4) support systems and coping resources; and (5) experience with the healthcare system and organized care. Participants highlighted urgent needs for home-based physiotherapy/nursing, caregiver respite, and psychological support. Coping and resilience-related resources—expressed through family support, familiarity of the home environment, and spirituality—were described as essential mechanisms that helped dyads sustain home care and shaped how needs were experienced across multiple domains, particularly amid service gaps. Conclusions: These findings document complex, interlinked needs among patients with advanced non-malignant chronic conditions and their caregivers and support the development of community-based, integrated PC services. Larger, multicenter studies and the development/validation of a needs-assessment tool are recommended. 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

Background: International policy increasingly recognises the importance of inclusive, community-based support for people living with dementia. Football, as a culturally significant sport, has the potential to reach older adults and communities disproportionately affected by health inequalities. The objectives of this review were to collate evidence on football-based dementia initiatives, including intervention format, delivery approaches, and reported outcomes. Methods: Seven databases (Sportdiscus, MEDLINE, Embase, Scopus, PsycINFO, CINAHL, and Web of Science) were searched for relevant peer-reviewed and grey literature from their inception to June 2025. The PICO framework was used to define eligibility criteria. Eligible studies described community-based football-themed or football-based programmes involving people living with dementia. Data were extracted on participant sample, intervention characteristics, and reported outcomes, and iteratively charted. Results: In total, 11 of the 1059 identified articles were included within this review. Initiatives were often delivered through professional football clubs and charitable foundations, with formats ranging from reminiscence therapy sessions to walking football. Common outcomes for participants included increased sociability, improved mood, enhanced communication, and a strengthened sense of identity and belonging. Some interventions also reported physical benefits, such as improved mobility. Carers highlighted respite opportunities, peer support, and enjoyment from seeing relatives more engaged. Despite positive reports, outcome measurement was inconsistent, and most studies were small-scale or descriptive pilot projects. Conclusions: Football-based dementia initiatives provide meaningful, culturally grounded opportunities for social inclusion and support. Their delivery through community clubs/organisations positions them well to address inequities in dementia care, particularly in areas of disadvantage. However, stronger evaluation methods are required to build a robust evidence base and guide sustainable implementation at scale. Full article

Background/Objectives: Neurological diseases are a major cause of long-term disability and dependence. In Poland, as in many countries, informal caregivers provide most long-term care for individuals with chronic and progressive neurological conditions. Although essential, this role is associated with substantial physical, psychological, and social burden. This study aimed to assess the scope and nature of support provided by caregivers to people with neurological diseases and to identify factors associated with differences in support and caregiver burden. Methods: A cross-sectional quantitative study was conducted using a CAWI survey. The sample included 104 informal caregivers of adults with various neurological conditions. An author-designed questionnaire and the “Actually Provided Support” subscale of the Berlin Social Support Scales (BSSS) were used. Nonparametric statistical tests were applied (p < 0.05). Results: Caregivers provided a high level of support, particularly emotional and instrumental support, while informational support was less intensive. Women more frequently reported high emotional and instrumental support. Higher buffering–protective support was more common among caregivers aged over 45 years. The most frequently reported difficulties were psychological fatigue (70.9%) and physical fatigue (60.2%), indicating a substantial caregiving burden. Key barriers included limited access to reimbursed healthcare services and the lack of temporary replacement in caregiving. Caregivers most often indicated the need for respite care and better access to information and education. Conclusions: Informal caregivers play a crucial role in the daily functioning of people with neurological diseases, despite high burden and insufficient systemic support. Expanding respite care, improving access to information, and better coordination of healthcare services are urgently needed. Full article

Background: Children and adolescents are pivotal in the transmission of influenza, and vaccination remains the most effective preventive measure. Cell-based influenza vaccines offer advantages over traditional egg-based vaccines by reducing egg-adapted mutations and improving antigenic match. SKYCellflu^® quadrivalent influenza vaccine (QIV; SK bioscience, Korea), the first cell-based QIV licensed in Korea for individuals aged 6 months and older, offers potential advantages; however, its real-world effectiveness in the Korean pediatric population remains limited. Objective: This study aimed to estimate the real-world effectiveness of SKYCellflu^® QIV, a cell-based QIV, in preventing laboratory-confirmed influenza among children and adolescents aged 6 months to 18 years in Korea during the 2024–2025 influenza season. Methods: A multicenter, prospective, test-negative case–control study was conducted from October 2024 to May 2025 across 25 institutions in Korea. Children and adolescents aged 6 months to 18 years who presented within 7 days of the onset of influenza-like illness (fever ≥ 38 °C and at least one respiratory symptom) were enrolled. Influenza infection was confirmed using rapid antigen tests or polymerase chain reaction; participants who tested positive were classified as cases, and those who tested negative for influenza served as controls. All participants were further categorized as vaccinated or unvaccinated based on receipt of SKYCellflu^® QIV. Those who received other influenza vaccines during the season were excluded. Vaccination status was verified through medical records and the national immunization registry. Results: A total of 1476 participants were included (751 cases, 725 controls). The overall adjusted vaccine effectiveness (aVE) was 45.57% (95% CI, 29.38–58.04). The vaccine demonstrated the highest effectiveness in children aged 6–35 months (aVE: 88.55%; 95% CI, 60.39–96.11). Effectiveness was higher against influenza B (aVE: 61.28%; 95% CI, 35.76–76.30) than influenza A (aVE: 41.63%; 95% CI, 22.55–56.01). The vaccine’s effectiveness in adolescents was not statistically significant due to the small sample size in this age group. Conclusions: This multicenter test-negative study provides the first real-world effectiveness of SKYCellflu^® QIV in a Korean pediatric population. The results suggest substantial protection in younger children, particularly against influenza B, and support the continued use of annual influenza vaccination in this population. Further studies with larger adolescent cohorts are needed to confirm these findings in older age groups. Full article

Background/Objectives: Family members are the principal providers of home-based care for migrant older adults. Linguistic, cultural, and structural barriers within health systems exacerbate the caregiver burden across emotional, physical and financial domains. Although home healthcare services may alleviate this burden, variability in access, cultural safety, and care coordination can also intensify it. This scoping review maps the evidence on the burden experienced by family caregivers who deliver home-based healthcare to migrant older adults and examines how these arrangements affect caregivers’ health and well-being. It synthesizes the literature on facilitators and barriers—including access, cultural-linguistic fit, coordination with formal services, and legal/immigration constraints—and distills implications for policy and practice to strengthen equitable, culturally responsive home care. Method: The Joanna Briggs Institute (JBI) scoping review framework was used to conduct the review. A comprehensive search was performed across six databases (CINAHL, Scopus, Web of Science, PsycINFO, MEDLINE and Sociological Abstracts) for articles published between 2000 and 2025. Studies were selected based on predefined inclusion criteria focusing on the family caregiver burden in providing home healthcare for migrant older adults. Data extraction and thematic analysis were conducted to identify key themes. Results: The review identified 20 studies across various geographical regions, highlighting four key themes: (1) Multidimensional Caregiver Burden, (2) The Influence of Gender, Family Hierarchy, and Migratory Trajectories on Caregiving, (3) Limited Access to Formal and Culturally Appropriate Support, and (4) Health Outcomes, Coping, and the Need for Community-Based Solutions. Conclusions: System-level reforms are required to advance equity in home healthcare for aging migrants. Priorities include establishing accountable cultural-safety training for providers; expanding multilingual access across intake, assessment, and follow-up; and formally recognizing and resourcing family caregivers (e.g., navigation support, respite, training, and financial relief). Investment in community-driven programs, frameworks and targeted outreach—co-designed with migrant communities—can mitigate isolation and improve uptake. While home healthcare is pivotal, structural inequities and cultural barriers continue to constrain equitable access. Addressing these gaps demands coordinated policy action, enhanced provider preparation, and culturally responsive care models. Future research should evaluate innovative frameworks that integrate community partnerships and culturally responsive practices to reduce the caregiver burden and improve outcomes for migrant families. Full article

Background and Objectives: Paediatric palliative care in Romania is underdeveloped and unevenly distributed, which creates major difficulties in accessing services for children with life-limiting illnesses and their families. The lack of a dedicated national strategy, the shortage of specialised staff, and socio-economic barriers exacerbate the vulnerability of these groups. This study aimed to explore parents’ and caregivers’ experiences, to analyse the perspectives of public institutions and NGOs involved in supporting these children, and to identify the main barriers and facilitators in accessing paediatric palliative care. Materials and Methods: Given that all data were collected exclusively through focus group discussions, this study employed a qualitative design based on three focus groups guided by a semi-structured interview guide. The analysis was conducted using MAXQDA software, which enabled the coding and synthesis of emerging themes. Participants were parents/caregivers of children with life-limiting illnesses, representatives of public institutions, and members of relevant NGOs in Bacău County, Romania. Purposive sampling was used to capture diverse and experience-based perspectives, resulting in a total of 24 participants across three focus groups—parents and caregivers (n = 11), public institution representatives (n = 7), and NGO representatives (n = 6). No individual semi-structured interviews were conducted. Results: The analysis highlighted a complex typology of medical, emotional, social, educational, and spiritual needs of children and their families. Parents reported experiences of abandonment in the curative system, emphasising the importance of pain control, safety, and community support. Public institutions acknowledged the lack of skills and inter-sectoral coordination, while NGOs pointed to structural barriers and the low visibility of these children. Major needs include access to specialised care, psychological support, respite services for carers, financial and administrative assistance, education, and spiritual counselling. A significant obstacle is the lack of up-to-date statistical data needed to inform public policy. Conclusions: Paediatric palliative care should be considered a national priority through the development of a dedicated strategy, the expansion of specialised services, and the strengthening of partnerships between the public and non-governmental sectors. An integrated, child- and family-centred approach addressing the medical, social, emotional, and spiritual dimensions of care is essential. The results highlight the need for continuous staff training, information campaigns, and community support mechanisms to reduce inequalities and improve the quality of life of children with life-limiting illnesses. Full article

Significant others—family members, friends, and informal carers—play a vital yet underrecognised role in supporting people with disability in Australia. This study aimed to explore their lived experiences and identify systemic barriers impacting their well-being and caregiving capacity. A total of 188 significant others participated in a statewide survey, co-designed using inclusive research principles. Quantitative and qualitative data were collected and analysed collaboratively, using an a priori coding framework adapted to new themes. Four key findings were described: the joy and meaning found in caregiving; the overwhelming burden of navigating fragmented systems; the erosion of carer well-being due to financial, physical and emotional strain; and the urgent need for systemic support including respite and equitable access to services. Participants emphasised that caregiving itself was not inherently burdensome, rather, the lack of formal support and recognition creates unsustainable conditions. These findings highlight the critical role significant others play in sustaining Australia’s care economy and underscore the need for disability-inclusive policy reform. Strengthening support systems and embedding lived experience into reform and policy design are essential to ensuring the long-term sustainability of informal care and the rights and well-being of both carers and people with disability. Full article

Background/Objectives: Living with a disabled family member has extensive implications for the whole family involved in their care, and there is dependency on healthcare support for maintaining quality of life. This qualitative study, conducted in Northern Ireland, investigated the support needs of different family members living with a severely impaired individual across the lifespan. A key objective was to identify support needs for intervention. Methods: In-depth semi-structured interviews were conducted to obtain data from eight mothers, fathers, sisters and brothers of a profoundly disabled child or sibling. Data was analyzed using Interpretive Phenomenological Analysis, allowing for the application of double hermeneutic in which the researchers derived meaning from the lived experiences of participants. Results: The analysis yielded five themes in total. Three themes were related to gaps in healthcare systems: Support Needs in Childhood, Support in Transition into Adult Services, and Worry for the Future; and two themes were linked with support needs: Associative Disability in Family Members; and Stigma. All family members had caregiving roles, and these had similarities and differences according to the relationship with the care-receiver. Participants recognized their families were survivors, however maintained a family tragedy rather than positive change outlook. Conclusions: Recommendations derived from the findings to alleviate the stressors of the situation for family members include increasing community support and age-related respite facilities. Additionally, improving and enhancing education of disabilities in schools, and immersing and further integrating individuals with disability into society, will alleviate the alienation, isolation and loneliness experienced by family members. Full article

This study focuses on the current service/care difficulties and challenges that social institutions in Hungary are facing during their daily operations; how they can react to them utilizing their internal resources, mechanisms, and capacities; and what concrete, tangible needs and demands are emerging in terms of methodological professional support, potential forms, interventions, and direction for professional development. A total of 24 general and 55 specific service and operational problems were identified and assessed in eight different service areas (family and child welfare services, family and child welfare centers, respite care for children, care for the homeless, addiction intervention, care for people with disabilities, care for psychiatric patients, specialized care for the elderly, and basic services for the elderly). The empirical base of the study uses a database of 201 online questionnaires completed by a professional target group working for social service providers in two counties (Győr-Moson-Sopron and Veszprém), representing 166 social service providers. The questionnaires were completed between November and December of 2022. The findings will be used to develop a professional support and development problem map. Social institutions face complex and serious service/care difficulties and challenges in their daily operations. Three distinctive basic problems clearly stand out in both severity and significance from the complex set of factors assessed. The biggest problem in the social care system is clearly the complex challenge of low wages, followed by the administrative burdens in the ranking of operational difficulties, and the third key factor was the psycho-mental workload of staff. Full article

Maternal primary caregivers in rural low-income contexts who care for children with cerebral palsy (CP) experience significant barriers related to their caregiving responsibilities that have a profound impact on all aspects of their lives. This paper reports on a study that aimed to explore barriers related to caring for a child living with CP in the rural province of Limpopo, South Africa. An exploratory qualitative research design was employed. Purposive, convenience, and snowball sampling was used to recruit 10 primary maternal caregivers of children living with CP between the ages of 3 and 18 years. A semi-structured interview was used to collect data. The data were analyzed using a thematic analysis. This study found six barriers related to caring for a child living with CP in rural areas, which included physical, financial, social, emotional, spiritual, and health barriers. The primary maternal caregivers of children living with CP in rural areas experience a significant burden of care. Consequently, they need support and respite care to ease these challenges. Full article