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1.
BMC Health Serv Res ; 24(1): 767, 2024 Jun 26.
Artículo en Inglés | MEDLINE | ID: mdl-38926712

RESUMEN

BACKGROUND: As the world population is aging, considerable efforts need to be put towards developing and maintaining evidenced-based care for older adults. Respite services are part of the selection of homecare offered to informal caregivers. Although current best practices around respite are rooted in person centeredness, there is no integrated synthesis of its flexible components. Such a synthesis could offer a better understanding of key characteristics of flexible respite and, as such, support its implementation and use. METHODS: To map the literature around the characteristics of flexible at-home respite for informal caregivers of older adults, a scoping study was conducted. Qualitative data from the review was analyzed using content analysis. The characterization of flexible at-home respite was built on three dimensions: WHO, WHEN and HOW. To triangulate the scoping results, an online questionnaire was distributed to homecare providers and informal caregivers of older adults. RESULTS: A total of 42 documents were included in the review. The questionnaire was completed by 105 participants. The results summarize the characteristics of flexible at-home respite found in the literature. Flexibility in respite can be understood through three dimensions: (1) WHO is tendering it, (2) WHEN it is tendered and (3) HOW it is tendered. Firstly, human resources (WHO) must be compatible with the homecare sector as well as being trained and qualified to offer respite to informal caregivers of older adults. Secondly, flexible respite includes considerations of time, duration, frequency, and predictability (WHEN). Lastly, flexible at-home respite exhibits approachability, appropriateness, affordability, availability, and acceptability (HOW). Overall, flexible at-home respite adjusts to the needs of the informal caregiver and care recipient in terms of WHO, WHEN, and HOW. CONCLUSION: This review is a step towards a more precise definition of flexible at-home respite. Flexibility of homecare, in particular respite, must be considered when designing, implementing and evaluating services.


Asunto(s)
Cuidadores , Cuidados Intermitentes , Humanos , Cuidadores/psicología , Anciano , Servicios de Atención de Salud a Domicilio , Encuestas y Cuestionarios , Investigación Cualitativa , Femenino
2.
Scand J Caring Sci ; 38(1): 104-113, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-37522268

RESUMEN

BACKGROUND: COVID-19 has increased pressures on caregivers, disruptions to health services and increased health concerns during COVID-19. Reports have been made on informal carers' increased workload and limited support services during the pandemic. AIMS: This study aimed to explore how informal caregivers experienced their well-being during COVID-19 through online discussion forums. MATERIALS AND METHODS: A reflexive thematic analysis characterised by theoretical flexibility, organic inductive coding processes and theme development was conducted on online discussion forums. The method highlighted theme reviewing which was done twice to encourage data reflection. The project was conducted on a novel topic which was a new area of research interest. Semantic coding where participants' words were used directly in the interpretation and construction of themes was used. RESULTS: In the theme 'Locked in or locked away' caregivers worried about continuing care at home, due to limited freedom and worries of hiring help during a pandemic. Some expressed worries about visitation rights and grief of not being present with a loved one if they would reside in a care home. The theme 'Nothing left to give' suggested that COVID-19 exasperated caregivers' loneliness, social isolation and increased responsibilities and challenges with other roles. Bitterness, resentment and anger were felt towards lack of social support and workload. Theme 'Celebrating a virtual way of life' described how caregivers used online forums when other support services were disrupted. DISCUSSION: We discuss the role of informal caregiver that was described as all-encompassing during COVID-19. We highlight the importance of advanced planning for care home transitions and the use of online forums as a form of support. We suggest further exploration into informal caregivers' role balancing. CONCLUSION: COVID-19 seemed to affect informal caregivers negatively, but they reframed their situations and sought online support. With COVID-19-related restrictions and increased workload, COVID-19 added an all-or-nothing aspect to care home transition decisions.


Asunto(s)
COVID-19 , Cuidadores , Humanos , Apoyo Social , Emociones , Transferencia de Pacientes
3.
BMC Nurs ; 23(1): 49, 2024 Jan 17.
Artículo en Inglés | MEDLINE | ID: mdl-38233888

RESUMEN

BACKGROUND: As China's population ages, the demand for care for the disabled elderly is increasing, and family caregivers find it challenging to meet the comprehensive care needs of the disabled elderly. Through home respite services, families of the disabled elderly can receive help and support from specialized nursing professionals to ease the burden on family caregivers and provide high-quality services. This study explores the willingness and influencing factors of Master of Geriatric Nursing Specialist postgraduates in China to volunteer to provide home respite services for disabled elderly individuals. METHODS: A qualitative study based on Grounded Theory used Strauss and Corbin's programmatic version. A purposive sampling method was employed to conduct semi-structured interviews with 12 Master of Geriatric Nursing Specialist postgraduates from a tertiary hospital in Changsha, Hunan Province, China. RESULTS: The willingness of Master of Geriatric Nursing Specialist postgraduates to volunteer to provide home respite services for the disabled elderly was established as a core category, which was influenced by three main categories: personal factors, service object factors, and social factors, and nine categories formed from 39 initial concepts were included under the main category. CONCLUSIONS: Influenced by China's traditional cultural background, Master of Geriatric Nursing Specialist postgraduates in China have shown high motivation in volunteering to provide home respite services for the families of the disabled elderly but have been challenged by several challenges from China's healthcare environment and education system. Relevant departments need to adopt a series of policies and measures to increase volunteers' willingness to participate in respite care and promote its development.

4.
Int J Aging Hum Dev ; 99(2): 247-262, 2024 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-38460958

RESUMEN

The rate of usage of community elderly care services in China is low, and past studies about the effects of these services on caregiver burden domestically are few. This study used a large sample of Beijing census data (n = 55,634) to examine the impact of these services on caregiver burden. Logistic regression and propensity score matching were used to estimate the effects. The results showed that meal assistance, respite care, and spiritual comfort are all significantly associated with a lower likelihood of perceived emotional burden among caregivers, while only respite care is very significantly associated with a lower likelihood of feeling physically burdened. However, the effects of these services on caregiver burden also depend on the activities of daily living performance and location of residence of the care recipients. The practical implications for policy makers are discussed.


Asunto(s)
Carga del Cuidador , Cuidadores , Humanos , Masculino , Femenino , Anciano , Beijing , Persona de Mediana Edad , Cuidadores/psicología , Cuidadores/estadística & datos numéricos , Anciano de 80 o más Años , Carga del Cuidador/psicología , Actividades Cotidianas/psicología , Cuidados Intermitentes/estadística & datos numéricos , Servicios de Salud para Ancianos/estadística & datos numéricos , China , Adulto
5.
Worldviews Evid Based Nurs ; 21(1): 96-103, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-38189600

RESUMEN

BACKGROUND: The cumulative stress toll on nurses increased during the COVID-19 pandemic. An evidence-based practice (EBP) project was conducted to understand what is known about the impacts of cumulative stress within nursing and if there are ways to mitigate stress during a nurse's shift. AIM/IMPLEMENTATION: A project team from three clinical units completed an extensive literature review and identified the need to promote detachment while supporting parasympathetic recovery. Based on this review, leaders from three pediatric clinical units (neonatal intensive care unit, cardiovascular intensive care unit, and acute pulmonary floor) implemented respite rooms. OUTCOMES: Follow-up outcomes showed a statistically significant stress reduction. For all shifts combined, the Wilcoxon Signed-Rank Test revealed that perceived stress scores from an 11-point Likert scale (0 = no stress and 10 = maximum perceived stress) were significantly lower in the post-respite room (Md = 3, n = 68) compared to in the pre-respite room (Md = 6, n = 68), Z = -7.059, p < .001, with a large effect size, r = .605. Nurses and other staff frequently utilized respite rooms during shifts. IMPLICATIONS FOR PRACTICE: Clinical inquiry and evidence-based practice processes can mitigate cumulative stress and support staff wellbeing. Respite rooms within the hospital can promote a healthy work environment among nurses and promote a self-care culture change. Evidence-based strategies to mitigate cumulative stress using respite rooms are a best practice to promote nurse wellbeing and mitigate cumulative stress.


Asunto(s)
Enfermeras Pediátricas , Personal de Enfermería en Hospital , Recién Nacido , Humanos , Niño , Pandemias , Práctica Clínica Basada en la Evidencia , Unidades de Cuidado Intensivo Neonatal
6.
Health Expect ; 2023 Sep 13.
Artículo en Inglés | MEDLINE | ID: mdl-37705308

RESUMEN

INTRODUCTION: Caring for children and youth with special health care needs (CYSHCN) is a significant undertaking for families. While respite care is intended to address this burden, demand continues to exceed supply. Exploring the perspectives of respite service providers (SPs) and stakeholders (SKs) provides unique insight into families' needs and respite care systems. METHODS: We conducted semistructured interviews with 41 respite care SPs and SKs across four Canadian provinces to ascertain perspectives on current and ideal respite care for families of CYSHCN. The analysis included delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes. The second-level analysis involved applying themes and subthemes to cross-functional process maps. FINDINGS: Participants noted the critical, but sometimes absent role of Community Service Workers, who have the ability to support families accessing and navigating respite care systems. SPs and SKs identified current respite systems as operating in crisis mode. New findings suggest an ideal respite care system would incorporate advocacy for families, empower families and value CYSHCN, their families and respite workers. CONCLUSION: The evidence of unmet respite care needs of families of CYSHCN across Canada has long been available. Our findings identifying respite system challenges and solutions can be used by funders and policymakers for planning and enhancing resources, and by healthcare professionals, respite care providers and SKs to understand barriers and take action to improve respite outcomes to meet the respite needs of all families and CYSHCN. PATIENT OR PUBLIC CONTRIBUTION: The research team is composed of patients, researchers, clinicians and decision-makers along with our Family Advisory Committee (FAC) composed of members of families of CYSHNC. The FAC was formed and met regularly with research team members, knowledge users and collaborators throughout the study to provide input on design, review themes and ensure findings are translated and disseminated in a meaningful way.

7.
Pediatr Int ; 65(1): e15703, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-38088499

RESUMEN

BACKGROUND: The number of children with medical complexity (CMC) is increasing worldwide. For these children and their families, various forms of support are legislated; among them, short-stay respite care has a great unmet need. We examined such children's parents' preferences for respite care and their willingness to pay. METHODS: We used discrete choice experiments (DCEs) to estimate the parents' preferences and willingness to pay. Parents whose children used overnight short-stay respite services answered a questionnaire to compare two hypothetical facilities of respite care having seven attributes and three levels. The DCE data was analyzed using the conditional logit model. The willingness to pay was calculated based on DCE estimates. RESULTS: A total of 70 parents participated in this study and mean age of their children was 7.8 years (standard deviation [SD] 4.3). Among those children, 67 (96%) had the severest certification of disability, and 27 (38%) used a ventilator at home. We found that the parents' highest preferences was the best level of medical care level that can manage ventilators (coefficient 1.61, 95% confidence interval [CI]: 1.32-1.90). The better and best level of medical care, daily care, education/nursing, and emergency care were preferred over basic quality services. Willingness to pay for the best level of medical care was approximately 75,367 JPY per night. CONCLUSION: This study shows a need for respite care that can deliver high-level medical care, especially for the management of ventilators, to CMC. This finding can serve as a basis for promoting respite care services.


Asunto(s)
Servicios de Atención de Salud a Domicilio , Cuidados Intermitentes , Niño , Humanos , Padres , Encuestas y Cuestionarios , Modelos Logísticos
8.
Aging Ment Health ; 27(10): 1946-1955, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37010982

RESUMEN

OBJECTIVES: Residential respite (RR) provides a valuable break for family carers, but little known about its offer, take-up or experiences of carers of people living with dementia. This paper aims to further understandings of factors influencing RR use. DESIGN: RR stakeholder workshop and qualitative interviews. SETTING: Stakeholder or living in the community in own home. PARTICIPANTS: RR stakeholders (13); family carers with experience of RR, or had declined it, or were planning to use it for the first time (n = 36). METHODS: Stakeholders participated in a workshop to discuss provision, models and funding of RR. Family carer interviews focused on expectations, experiences and outcomes of use of RR. Data were analysed thematically and mapped against Andersen's model of health service use. RESULTS: Identifying need for RR does not necessarily transpire into use. Planning and ease of booking were crucial for carers, but many felt there was little support with this. Systemic factors concerning funding, planning and booking RR act as barriers to its use. CONCLUSION: Findings highlight how systemic factors influence RR use. Discussing respite need in routine care planning or reviews may support carers and people living with dementia to consider RR, but system changes are needed to address barriers.


Asunto(s)
Cuidadores , Demencia , Humanos , Cuidados Intermitentes , Demencia/terapia , Investigación Cualitativa , Servicios de Salud
9.
Aging Ment Health ; 27(7): 1282-1290, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-35848206

RESUMEN

OBJECTIVES: Short breaks support the wellbeing of people living with dementia (PLWD) and their unpaid carers. However, little is known about the benefits of community-based short breaks. The objective of this study was to conduct interviews with stakeholders of a Shared Lives (SL) day support service to explore mechanisms and outcomes for the service. The aim of the study was to refine a logic model for a SL day support service for PLWD, their unpaid carers, and paid carers. This logic model shall form the basis for a Social Return on Investment evaluation to identify the social value contributed by the service. METHODS: Thirteen interviews were conducted with service stakeholders including PLWD, unpaid carers and paid carers. Framework analysis assisted in the synthesis of the findings into a logic model. RESULTS: The logic model refined through the interviews, detailed service mechanisms (inputs, activities, outputs) and outcomes. An overarching theme from the interviews concerned the importance of triadic caring relationships, which conferred benefits for those involved in the service. CONCLUSION: SL day support fosters triadic caring relationships, and interview data suggests that these relationships are associated with meaningful outcomes for PLWD, their unpaid carers, and paid carers. We highlight the implications for policy, practice, and future research.

10.
Int J Health Plann Manage ; 38(2): 507-526, 2023 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-36495284

RESUMEN

BACKGROUND: Age-appropriate communication and interaction are essential when meeting young carers, requiring in-depth knowledge and experience. Volunteer programmes may enhance undergraduate students' competencies in this regard. This pilot study evaluated undergraduate students' perceptions of volunteering on the Buddies for Children and Youngsters (BCY) programme by assessing the extent to which students experienced an improvement in their relational and communication competencies and/or felt better equipped for their future work. METHODS: The researchers conducted a mixed methods study with a parallel design, focussing on undergraduate students from the University College of Northern Denmark within the field of nursing, teaching, pedagogy, physiotherapy, and occupational therapy. The students participated in the programme for at least 4 months. RESULTS: Forty-two students responded to a questionnaire, and 17 students were selected to participate in four focus groups. The results showed that participation in the programme improved the students' communication and relational competencies to some degree. The programme provided the students with experience of age-related communication on both informal and difficult topics, and of building relationships and solving relational challenges. Also, the programme generally equipped students for future work with young carers and children. CONCLUSION: In conclusion, the BCY programme is a relevant supplement to regular educational activities. Decision makers within politics of health, health planning and management, should therefore consider implementation of such programmes in relevant educational areas.


Asunto(s)
Cuidadores , Estudiantes de Enfermería , Estados Unidos , Niño , Humanos , Proyectos Piloto , Estudiantes , Grupos Focales , Dinamarca
11.
J Pediatr Nurs ; 72: e114-e121, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37414622

RESUMEN

BACKGROUND: Parents of children and youth with special healthcare needs (PCHN) are under particular pressure that can lead to physical, emotional, and social difficulties. Respite care services provide temporary relief for PCHNs from their caregiving responsibilities. Several studies have examined why PCHNs do not make greater use of these potentially supportive services, but existing studies do not focus on the psychological or subjective aspects of this process. OBJECTIVES: The present study aims to understand the reasons why PCHNs, mothers in particular, (do not) use these services, with the underlying goal of understanding what parents' needs and expectations are regarding these services. METHODS: The present study is based on a qualitative thematic analysis of the experience of respite services of 14 Belgian mothers PCHN. RESULTS: The results showed that PCHNs regularly exceed their limits and are often on the verge of physical and emotional exhaustion and that respite services could be a way to meet their needs. However, issues of availability and accessibility impede equal access to these services. CONCLUSIONS: These findings highlight the need for a comprehensive approach to respite care, by including PCHNs in the process as early as possible, not normalizing exhaustion as the trigger, and not focusing solely on the needs of children when the need arises. IMPLICATIONS FOR PRACTICES: Increasing the flexibility of the services, providing a reassuring environment, facilitating administrative procedures, and providing information about these services as early as possible appear to be priorities for facilitating the use of respite care services.


Asunto(s)
Personas con Discapacidad , Cuidados Intermitentes , Femenino , Adolescente , Niño , Humanos , Padres/psicología , Investigación Cualitativa , Necesidades y Demandas de Servicios de Salud , Cuidadores/psicología
12.
Geriatr Nurs ; 54: 178-183, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37797545

RESUMEN

Respite care provides alternative care for persons living with dementia (PLWD) and is intended to alleviate the burden of caregiving. However, the evaluation of respite programs is limited. Time Out Weekly Smile (TOWS) is a virtual intergenerational respite care program designed to meet the needs of PLWD and their care partners and provide allied health students opportunities to serve as respite volunteers. This multi-method pilot study aimed to evaluate the experience of TOWS participation for all (i.e., care partners, PLWD, students) and identify outcomes of interest for future efficacy studies. Semi-structured interviews with all participants after experiencing TOWS were analyzed using conventional content analysis methods and student surveys of dementia attitudes were summarized. Results demonstrated lasting mutual benefits for all participants including social connection and creating meaning. Our findings suggest that including all respite care participants in future efficacy studies will elucidate the wide impact of respite care programs.


Asunto(s)
Cuidadores , Demencia , Humanos , Proyectos Piloto
13.
Health Promot J Austr ; 34(1): 193-201, 2023 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-36053853

RESUMEN

ISSUE ADDRESSED: Day-respite care opportunities for people with dementia help prevent informal carer burnout and enable ageing in place. Care workers in these settings are an under-researched workforce who play a pivotal role in providing an engaging and supportive environment for clients with dementia. This study aimed to understand their experiences of providing care for people with dementia. METHODS: An interpretive phenomenological analysis explored the factors that challenge and enable day-respite centre workers of the sole facility in one regional Australian town to provide, what they perceive to be high-quality, person-centred care for people with dementia. Thematic analysis revealed four themes relating to the experience of providing care to people with dementia in this day-respite centre. RESULTS: Care challenges associated with the symptoms of dementia were recognised by participants; however, these issues were mitigated by the powerful enabling factors, including a strong focus on dementia-friendly care, operating within the centre. Thematic analysis yielded four themes of a person-centred workplace culture and strategy, embedded communication practices, provision of a safe and engaging environment and positive staff attributes. These themes were perceived to make participants' jobs more enjoyable, as well as improve their clients' and carers' quality of life. CONCLUSIONS: Day-respite centres offer a valuable resource for people with dementia and their carers, and their success depends on several key environmental and workforce factors. Accordingly, other facilities targeted at caring for this population should assess the feasibility of adopting similar strategies, including selecting and training specialised care staff, adapting the care environment to suit clients' physical and behavioural needs. and establishing routine multi-channel communication methods that effectively connect staff with other care providers, their clients, and their clients' carers. SO WHAT?: The lessons learned in this research could be implemented throughout the wider web of dementia care. Strategies might include the careful selection and training of staff; the provision of dedicated, safe dementia-friendly wards; and routine communication key stakeholders to ensure met-needs care. While there would be a need to scale such care to suit different individual care providers, even seemingly simple strategies would likely have positive effects in optimising care for people diagnosed with this debilitating neurocognitive disease.


Asunto(s)
Demencia , Cuidados Intermitentes , Humanos , Anciano , Cuidados Intermitentes/psicología , Calidad de Vida , Demencia/psicología , Australia , Vida Independiente , Cuidadores/psicología
14.
Artículo en Inglés | MEDLINE | ID: mdl-35064684

RESUMEN

OBJECTIVES: The Covid-19 pandemic has taken a heavy toll on many people living with dementia and carers. Caring for a person living with dementia at home with limited avenues for support and a break challenged many carers. Care homes in England closed to visitors, with very few offering opportunities for a short-stay. We investigated impact of Covid-19 on views and expectations of carers of people living with dementia about residential respite. METHODS/DESIGN: Qualitative interviews with 35 carers were conducted March-December 2020: 30 women and 5 men, with ages ranging 30-83 years. Interviews explored experiences, views of residential respite, and expectations post-Covid. Data were thematically analysed and salient concepts were drawn out and discussed within the research team and study advisers. RESULTS: Three themes were identified in transcripts, relating to impact of Covid-19 on views and expectations of respite: (1) Carers described regularly negotiating risks and stresses of Covid, weighing up how to prevent infection and changing family arrangements to facilitate caring; (2) Carers were balancing different needs, prioritising needs of their relatives while bearing the impact of cumulative caregiving responsibilities. (3) Uncertainty about future residential respite continued, in terms of availability, ongoing restrictions and trustworthy information sources. CONCLUSIONS: Residential respite is a positive, acceptable option for some carers to get a break from caring. Covid-19 may have heighted some of caregiving stressors and there may be an increased need for a break. Views of care homes developed during the pandemic suggest that individual confidence to use respite may need to be rebuilt.


Asunto(s)
COVID-19 , Demencia , Anciano , Anciano de 80 o más Años , Cuidadores , Demencia/epidemiología , Femenino , Humanos , Masculino , Motivación , Pandemias , SARS-CoV-2
15.
Gerontology ; 68(2): 146-150, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-33915539

RESUMEN

With the lack of respite care, caregivers will often suffer from physical, mental, and financial hardships. In the Middle East and North African countries, religion and cultural considerations may pull in opposite directions as a vast majority of families in the region care for their loved ones at home. Moreover, the sense of responsibility and obligations toward caring for an older family member also influences caregivers' decision-making, even though such considerations may deprive them of even a short vacation or break. It is important for policymakers and stakeholders, in close participation with families and older adults receiving care, to take into account how various factors related to social, cultural, and religious matters affect quality of care and the well-being of care recipients and caregivers. Official policies could have an essential role in opening new avenues for temporary respite care, but authorities should be aware of the importance of cultural and religious principles while setting up such policies. Therefore, policymakers should engage with the relevant organizations, such as municipalities, nongovernmental organizations, charities, and religious institutions, to help the health system in establishing respite care facilities. In this article, we discuss a number of key issues and provide suggestions as to how this goal might be achieved. The availability of respite services could have a positive influence on the physical and mental health of both older adults in need of care and informal caregivers. In conclusion, those receiving care, caregivers, and the public health-care system will gain from the development of a range of respite care services.


Asunto(s)
Cuidadores , Cuidados Intermitentes , África del Norte , Anciano , Cuidadores/psicología , Recolección de Datos , Familia , Humanos , Cuidados Intermitentes/psicología
16.
BMC Palliat Care ; 21(1): 26, 2022 Feb 28.
Artículo en Inglés | MEDLINE | ID: mdl-35227242

RESUMEN

BACKGROUND: Respite care provides caregiving support to people with amyotrophic lateral sclerosis (ALS) and their care partners by providing the care partner with temporary relief from their caregiving duties. The aim of this study was to explore the impact of respite care through the perspectives and lived experiences of people with ALS and their care partners. METHODS: Thirty-one dyads (62 participants) of people with ALS and their care partners were assigned to either the control group or the respite care intervention. Respite care was provided in the form of home-based services. Semi-structured interviews were conducted with participants at baseline and after a six-month period to gather perspectives on ALS caregiving, perceptions of respite care, and the respite care experience. Interviews were transcribed and subjected to thematic analysis. RESULTS: Caregiving challenges specific to the care partner and the patient-care partnership relationship were identified. Overall, people with ALS and care partners responded positively to in-home respite care and reported improved relationship quality, more time for the care partner to pursue personal commitments or take a break, and improved emotional well-being for both the person with ALS and the care partner. Barriers and concerns were raised surrounding privacy and staff consistency. CONCLUSION: This study highlights respite care as a critical tool to alleviate caregiving challenges and support the needs of people with ALS and their care partners. Engagement with the ALS community and formal evaluations of respite care services should be prioritized in order to minimize barriers and best meet the needs of people with ALS and their care partners.


Asunto(s)
Esclerosis Amiotrófica Lateral , Cuidados Intermitentes , Esclerosis Amiotrófica Lateral/psicología , Esclerosis Amiotrófica Lateral/terapia , Cuidadores/psicología , Emociones , Humanos , Investigación Cualitativa
17.
Aging Ment Health ; 26(8): 1604-1612, 2022 08.
Artículo en Inglés | MEDLINE | ID: mdl-34114901

RESUMEN

OBJECTIVES: The purpose of this study was to examine the prevalence of formal and informal support between non-co-resident and co-resident family caregivers of persons with dementia and to investigate the impact of receiving formal or informal assistance on family caregivers' residential status and their perceived emotional stress. METHOD: We used secondary data from the 2018 National Survey of Older American Act conducted by the Administration for Community Living. We selected 751 primary family caregivers of persons with dementia and conducted regression analyses to explore our research questions. RESULTS: Non-co-resident caregivers of persons with dementia were younger, racially and ethnically diverse, employed, and had higher income than co-resident caregivers. They were less likely to utilize formal support, such as caregiver training or education (p = .005) and respite care (p = .019) but more likely to rely on informal support in their social networks (p = .002), compared to co-resident caregivers. Non-co-resident caregivers who had better informal support systems showed less emotional stress than co-resident caregivers (p = .024). CONCLUSION: Findings from our study suggest the importance of engaging informal networks to alleviate emotional stress of non-co-resident caregivers of persons with dementia. Furthermore, it is critical to help them utilize adequate caregiver training and education as well as respite care before their loved ones experience dramatic functional and health declines.


Asunto(s)
Demencia , Distrés Psicológico , Cuidadores/psicología , Demencia/psicología , Humanos , Cuidados Intermitentes/psicología
18.
Home Health Care Serv Q ; 41(4): 291-309, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35098900

RESUMEN

Caregiving is an increasingly prevalent experience that can negatively impact health and well-being. Volunteerism, long associated with positive benefits for older adults, is one potential strategy that can be used to counteract caregiver stress. A national cohort of existing older adult volunteers was engaged to explore the intersection of volunteering and caregiving through qualitative analysis of respondent comments using the lens of role theory. Survey responses from 533 older volunteers were analyzed. Role conflict and role enhancement themes were examined, with time constraints and reduced energy emerging as the perceived causes of conflict between the caregiver and volunteer roles. Caregivers discussed benefits to their caregiving role, including respite, learning, access to information and resources relevant to caregiving, increased socialization and improved physical and cognitive health. Findings indicate that volunteering can be framed as a health and well-being intervention for caregivers.


Asunto(s)
Cuidadores , Voluntarios , Humanos , Anciano , Cuidadores/psicología , Voluntarios/psicología , Encuestas y Cuestionarios
19.
Home Health Care Serv Q ; 41(4): 310-329, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35815533

RESUMEN

Caring for a person living with dementia (PLWD) can be challenging, making support services like respite important. Of the types of respite, research on paid professional in-home care specific to family caregivers of PLWD is limited. This study aimed to identify characteristics of dementia caregivers using paid in-home respite. A self-administered online survey (N = 98) examined use of in-home respite. Measures assessed depressive symptoms, burden, and self-rated health. Analyses included descriptive statistics and qualitative coding. Most respondents utilized weekly schedules of in-home respite with a moderate correlation between dependency and hours of respite. Caregivers' self-reported average health, depressive symptoms, and mild-to-moderate burden. The majority of users had lowered perceived stress, were satisfied with services, and indicated the importance of in-home respite during a pandemic. Future research should assess changes in use of paid in-home respite services and overall landscape of respite options for dementia caregivers.


Asunto(s)
Demencia , Cuidados Intermitentes , Humanos , Cuidadores , Demencia/terapia , Encuestas y Cuestionarios , Salarios y Beneficios
20.
J Pediatr Nurs ; 67: e215-e223, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35902354

RESUMEN

PURPOSE: This study examined the impact of respite care received by children with medical complexity (CMC) on their health-related quality of life (HRQOL). We hypothesized that out-of-home respite care would increase both opportunities to engage in activities and participation with non-family members and help with acquiring autonomy and social skills. DESIGN AND METHODS: This cross-sectional study of CMC aged between 8 and 18 years living at home used a web-based questionnaire survey that parents living with the target CMC answered for proxy evaluation of CMC's HRQOL (KIDSCREEN-27). We asked 3142 parents to participate in the study through 237 special-needs schools throughout Japan. Path analysis was used to estimate the variation in each aspect of HRQOL with respite care time of in-home care services, day care services, short-stay services, and school time. RESULTS: We analyzed the responses from 618 parents of CMC. The results showed that respite care by day care services and special-needs schools increased "physical well-being," "psychological well-being," and "peers and social support," which are components of the HRQOL. Furthermore, respite care at schools had an impact on "school environment." CONCLUSIONS: Respite care provided by special-needs schools and day care services has implications not only in terms of relief for caregivers but also in improving the HRQOL of CMC. PRACTICE IMPLICATIONS: Nurses can provide respite care that does not require parental accompaniment at school or day care facilities, which can lead to CMC's involvement in fostering autonomy and social skills. (249/250 words).


Asunto(s)
Calidad de Vida , Cuidados Intermitentes , Niño , Humanos , Adolescente , Estudios Transversales , Padres/psicología , Cuidadores/psicología
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