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Archives of Public Health = Archives... 2018Due to the increase in the number of people with dementia, relatives often provide in-home care. This care constitutes a cornerstone of the healthcare system, and... (Review)
Review
BACKGROUND
Due to the increase in the number of people with dementia, relatives often provide in-home care. This care constitutes a cornerstone of the healthcare system, and maintaining these caregivers' well-being is therefore of paramount importance. Although respite interventions are generally considered an effective support system, they tend to be underutilized. The aim of this integrative literature review is to highlight the factors that promote and impede the use of respite interventions.
METHODS
Searches were conducted on the PubMed and CINAHL databases for studies of respite interventions from 1980 to 2016, and they yielded 51 articles of relevance.
RESULTS
Analysis of these articles revealed modifiable and immutable factors that influence the use of respite. The most cited topic categories in the literature were attributes of respite services and workload managed by caregivers, which is characterized by the onset of burden.
CONCLUSION
The factors promoting or impeding the use of respite interventions identified by our analysis highlight the need to adapt respite service attributes and use caregivers' skills to foster the partnership between healthcare teams and caregivers and to ensure the accompanying dyad's quality and safety.
PubMed: 30479766
DOI: 10.1186/s13690-018-0316-y -
Journal of the American Geriatrics... Feb 2021To characterize current practices, barriers, and facilitators to assessing and addressing family caregivers' needs and risks in primary care.
OBJECTIVES
To characterize current practices, barriers, and facilitators to assessing and addressing family caregivers' needs and risks in primary care.
DESIGN
Cross-sectional, national mail-based survey.
SETTING
American Medical Association Masterfile database.
PARTICIPANTS
U.S. primary care physicians (N = 106), including general internists (n = 44) and geriatricians (n = 62).
MEASUREMENTS
Approaches to assessing and addressing family caregivers' needs and risks; barriers and facilitators to conducting caregiver assessments.
RESULTS
Few respondents reported conducting a formal caregiver assessment using a standardized instrument in the past year (10.5%). Informal, unstructured discussions about caregivers' needs and risks were common and encompassed a range of issues, most frequently caregivers' management of patients' safety (41.0%), ability to provide assistance (40.0%), and need for support (40.0%). To address caregiver needs, most respondents endorsed referring patients to services (e.g., adult day care, home care) (69.8%), assessing the appropriateness of the patient's living situation (67.9%), and referring caregivers to community agencies (63.2%). Lack of time was the most frequently cited barrier to assessing caregivers' needs (81.1%). The most commonly endorsed facilitators were access to better referral options (67.0%) and easier referral mechanisms (65.1%). Practice patterns, barriers, and facilitators to caregiver assessment did not differ by physician type.
CONCLUSIONS
Primary care physicians use informal, unstructured discussions rather than standardized instruments to assess caregivers' needs and risks. There is heterogeneity in the topics discussed and types of referrals made. Findings indicate the lack of translation of caregiver assessment tools from research to practice.
Topics: Aged; Caregivers; Cross-Sectional Studies; Female; Humans; Male; Mental Health; Middle Aged; Needs Assessment; Patient Care; Primary Health Care; Referral and Consultation; Respite Care; Risk Assessment; Sleep Wake Disorders; Social Conditions; Social Support; Stress, Psychological; United States
PubMed: 33217776
DOI: 10.1111/jgs.16945 -
Health & Social Care in the Community Sep 2022Young carers (YCs) are children and adolescents who provide meaningful, regular support to a relative with a health problem. In France, only one programme exists to...
Young carers (YCs) are children and adolescents who provide meaningful, regular support to a relative with a health problem. In France, only one programme exists to support them: the arts and respite care programme of the national association JADE. The aim of this study is to describe the profiles of YCs who had participated in this programme and to evaluate their expectations, opinions, and the evolution of their quality of life over the course of the programme. All YCs enrolled in the programme between 2017 and 2020 were invited to participate in the study. Upon arrival, the youths completed a self-report questionnaire addressing their sociodemographic and family situations, their caregiving activities, their quality of life, and their expectations for the programme. At the end of each week, a questionnaire evaluating their opinion of the programme and their quality of life was completed. A hundred and seventeen children participated (average age: 12; 71.8% girls). Most YCs provided support to a parent or sibling with a chronic somatic disease. The support mainly concerned doing domestic tasks and providing emotional support for the relative and was significantly higher among adolescents. Their expectations were mainly about getting respite and meeting other young people. Their levels of satisfaction were high and aligned with their expectations. Their quality of life increased significantly. French YCs in this programme had characteristics comparable to those observed internationally. The results underline the importance of respite and the benefits such a programme can bring to YCs.
Topics: Adolescent; Caregivers; Child; Chronic Disease; Female; Humans; Male; Quality of Life; Respite Care; Surveys and Questionnaires
PubMed: 35199897
DOI: 10.1111/hsc.13769 -
Journal of Substance Abuse Treatment Nov 2020In response to the novel coronavirus 2019 (Covid-19) pandemic, many people experiencing homelessness and substance use disorders entered respite and recuperation...
In response to the novel coronavirus 2019 (Covid-19) pandemic, many people experiencing homelessness and substance use disorders entered respite and recuperation facilities for care and to isolate and prevent subsequent SARS-CoV-2 transmission. However, because drug use was officially prohibited in these facilities, we observed people who use substances leaving isolation temporarily or prematurely. The initial Covid-19 surge magnified the need for harm reduction access for those who use substances to ensure their safety and well-being and that of their local communities. In this commentary, we argue that expanding harm reduction access is crucial for subsequent waves of SARS-CoV-2 infection and also for patients who use substances and are hospitalized for other reasons.
Topics: COVID-19; Coronavirus Infections; Harm Reduction; Ill-Housed Persons; Humans; Pandemics; Pneumonia, Viral; Social Isolation; Substance Abuse Treatment Centers; Substance-Related Disorders
PubMed: 32972644
DOI: 10.1016/j.jsat.2020.108103 -
Nursing Open May 2022To identify and synthesize the evidence base regarding children and adolescents' preferences for support when living with a dying parent. (Review)
Review
AIM
To identify and synthesize the evidence base regarding children and adolescents' preferences for support when living with a dying parent.
DESIGN
Integrative literature review study.
METHODS
Searches were conducted in PubMed, CINAHL, PsycINFO, the Cochrane Library, Sociological Abstracts and Scopus, between 1 October 2019 and May 2021. Data were analysed and synthesized using integrative thematic analysis according to the analysis stages specified by Whittermore and Knafl.
RESULTS
Twenty-two articles were identified. Children and adolescents' preferences for support were described through one overarching theme, Striving to achieve control and balance, together with six subthemes; "Involvement in the sick parent's care and treatment"; "Wanting to be with the sick parent but needing respite"; "Information must be continuous and individually adapted"; "emotional and communicative support from parents and family members"; "professional, compassionate and informative support"; and "support in friendships and opportunities to maintain normality."
Topics: Adolescent; Child; Communication; Humans; Parents
PubMed: 35156340
DOI: 10.1002/nop2.1187 -
BMJ (Clinical Research Ed.) Oct 1996The aim of community care is to enable people with various types of disability to live in their own homes, rather than in institutions. This involves the provision of... (Review)
Review
The aim of community care is to enable people with various types of disability to live in their own homes, rather than in institutions. This involves the provision of support and services at home by various agencies. After a critical report in 1986 identified problems with coordination and flexibility of community care services, the white paper Caring for People (1989) stated the government's aim to provide a "needs led," responsive range of services, promoting maximum independence of those wishing to live at home rather than enter institutional care. New arrangements were introduced in 1993, involving a formal assessment procedure and the production of a personalized care plan for each individual, incorporating services provided by private and voluntary agencies as well as by social services departments. This article describes the components of community care services supplied by local social services authorities, including housing adaptations, equipment, telephones and alarms, home care, meals, and respite care.
Topics: Aged; Community Health Services; Disabled Persons; Emergency Medical Services; Health Services for the Aged; Home Care Services; Homes for the Aged; Housing; Humans; Respite Care; Social Security; Social Work; Telephone; United Kingdom
PubMed: 8870580
DOI: 10.1136/bmj.313.7061.869 -
Health & Social Care in the Community Sep 2022The COVID-19 pandemic has significantly limited access to health and social care support systems for people with dementia and their carers, compounding the severe social...
The COVID-19 pandemic has significantly limited access to health and social care support systems for people with dementia and their carers, compounding the severe social restrictions. The aim of this study was to investigate the experiences of COVID-19 among community-dwelling people with dementia and their informal carers in Italy. Specifically, we focused on access to community-based services and adopted solutions to provide support and care during exceptional times. Informal carers, caring for someone with dementia and attending community-based services in Italy, participated in remote semi-structured interviews between October and November 2020. Participants were asked about the effects of social isolation and closure of in-person services on their daily lives as well as the challenges of dementia care. Transcripts were analysed using inductive thematic analysis. 22 informal carers were interviewed. Three themes emerged: (1) Disruptions to people with dementia's lives and health; (2) COVID-19 as an additional stressor for carers; and (3) New ways of caring for people with dementia during COVID-19. Face-to-face social care and social support services were suddenly interrupted and restrictions on social distancing were introduced, thus leading to people with dementia's impaired health and increased behavioural and psychological symptoms. Not only the amount but also the intensity of care increased, with no chance of respite for informal carers. Overall remote activities provided participants with emotional and social benefits, while allowing the continuity of relationships with services staff and users and of care. However, according to carers, a combination of virtual and face-to-face activities could better counterbalance the multiple adverse outcomes of COVID-19. Public health measures should be designed carefully to consider the safety needs and the physical, psychological and social needs of people with dementia. Within a holistic care approach, social care services need to be enabled better to guarantee high-quality care even during pandemic times.
Topics: COVID-19; Caregivers; Community Health Services; Dementia; Humans; Pandemics
PubMed: 35188317
DOI: 10.1111/hsc.13758 -
BMJ Open Jun 2023Respite for families of children and youth with special healthcare needs (CYSHCN) is essential for sustaining a family care environment. Lacking is an understanding of...
Respite care: qualitative arts-based findings on the perspectives and experiences of families of children and youth with special healthcare needs residing in Manitoba, Canada.
OBJECTIVES
Respite for families of children and youth with special healthcare needs (CYSHCN) is essential for sustaining a family care environment. Lacking is an understanding of families' respite experiences who reside in Canada. We sought to understand experiences of the use of respite services by families with CYSHCN with the aim to help improve respite services. This paper reports on the qualitative arts-based findings.
DESIGN
Qualitative methods including open-ended interviews combined with the arts-based methods of ecomaps and the photovoice process were used. Analysis involved delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes.Manitoba, a western Canadian province.
PARTICIPANTS
Thirty-two families (including 38 parents and 13 siblings) of CYSHCN.
RESULTS
We identified six themes surrounding challenges experienced by families' in their journeys accessing, acquiring and navigating the respite care system, and sustainment of respite care for their families, leading to familial burn-out and breakdown, financial stress, unemployment and unaddressed mental health struggles. Families provided multipronged recommendations to address these challenges.
CONCLUSIONS
Through the lens of Canadian families of children with a range of complex care needs, the qualitative arts-based portion of the study underscores the challenges with accessing, navigating and sustaining respite care, which has implications for CYSHCN, their clinicians and the potential for long-term costs for government and society. This study identifies the state of the current Manitoba respite care system as an issue, presenting actionable recommendations from families that can assist policymakers and clinicians in advocating for and implementing a collaborative, responsive, family-centred system of respite care.
Topics: Adolescent; Child; Humans; Manitoba; Canada; Respite Care; Burnout, Psychological; Cluster Analysis
PubMed: 37385743
DOI: 10.1136/bmjopen-2023-073391 -
Journal of Autism and Developmental... Nov 2023Parenting an autistic child can affect a family's well-being. Finding resources is critical. This pilot study looked at respite's impact on parental stress, anxiety, and...
OBJECTIVE
Parenting an autistic child can affect a family's well-being. Finding resources is critical. This pilot study looked at respite's impact on parental stress, anxiety, and depression in military families and demographic factors associated with presence of respite care.
METHOD
Participants completed three surveys on anonymous basis, including two standardized surveys measuring parental stress and anxiety/depression. Data analysis used Chi-square test and regression analysis.
RESULTS
Parents receiving respite reported less stress and anxiety/depression. Respite utilization was associated with absence of comorbid conditions in child and other variables. Predictor variables for parental stress and anxiety/depression included presence of comorbid conditions in child.
CONCLUSION
Respite care may be linked to lower parental stress, anxiety, and depression, but more study is needed.
Topics: Child; Humans; Autistic Disorder; Depression; Military Personnel; Respite Care; Pilot Projects; Autism Spectrum Disorder; Parents; Anxiety
PubMed: 36030352
DOI: 10.1007/s10803-022-05704-x