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JMIR Nursing May 2023Respite care is one of the most frequently requested support services by family caregivers. Yet, too often, respite care services are inaccessible, due in part to... (Review)
Review
BACKGROUND
Respite care is one of the most frequently requested support services by family caregivers. Yet, too often, respite care services are inaccessible, due in part to families' lack of knowledge regarding available services and a lack of service flexibility. Information and communication technologies (ICTs) may help to improve the flexibility of services available and families' knowledge of such services. However, an understanding of the use of ICTs and research in this area is lacking.
OBJECTIVE
The objective of this study was to provide a comprehensive overview of the academic literature on ICTs for supporting the provision of respite care services.
METHODS
A scoping review study was conducted. Six library databases were systematically searched for relevant literature. Key data were extracted into a summary chart. Text and quantitative data were coded using descriptive qualitative content analysis techniques, and the results were collated and summarized into a comprehensive narrative.
RESULTS
A total of 23 papers describing 15 unique ICT programs exploring the potential of ICTs to support respite care services met the inclusion criteria. ICTs supported the provision of respite care by facilitating information-sharing with families and providers, recruiting and training respite care providers, and coordinating services. Key design considerations for developing respite care ICTs were trustworthiness and participatory design methods. Implementation considerations included designing for complementarity with existing services, assessing the appropriate timing for introducing the ICT-based services, and ensuring adequate promotion strategies to raise awareness about the services.
CONCLUSIONS
There is limited but promising research on the potential of ICTs to support the provision of respite care services. Further research should be conducted to advance the results of this review, ultimately aiming to build ICTs that can improve the quality of, and access to, respite care services.
PubMed: 37252760
DOI: 10.2196/44750 -
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 -
International Journal of Environmental... Apr 2020The most common requirement for informal caregivers is to experience a respite or temporary break from their caregiving routine. Some initiatives have been undertaken to...
The most common requirement for informal caregivers is to experience a respite or temporary break from their caregiving routine. Some initiatives have been undertaken to provide respite care through volunteer providers. We report on a qualitative study carried out in Santiago, Chile, to learn about the willingness of potential volunteers to provide respite care for bedridden older persons, as well as their willingness to use information and communication technologies (ICT) to connect to caregivers in a low-income neighbourhood within their own geographic district. A trustworthy institution that mediates the volunteer-caregiver relationship is considered to be important by potential volunteers. Potential volunteers were found to be willing to use ICT to provide respite care, sharing basic information about themselves. However, they were also aware of the digital skill gap that may exist between them and the caregivers and were distrustful of unknown websites that could connect them to care recipients.
Topics: Adult; Aged; Aged, 80 and over; Caregivers; Chile; Communication; Female; Humans; Interpersonal Relations; Male; Middle Aged; Respite Care; Volunteers
PubMed: 32340190
DOI: 10.3390/ijerph17082911 -
Parkinson's Disease 2021In the late stage of Parkinson's disease (PD), there is an increasing disease burden not only for the patients but also for their informal caregivers and the health and...
In the late stage of Parkinson's disease (PD), there is an increasing disease burden not only for the patients but also for their informal caregivers and the health and social services systems. The aim of this study was to explore experiences of late-stage PD patients' and their informal caregivers' satisfaction with care and support, in order to better understand how they perceive the treatment and care they receive. This qualitative substudy was part of the longitudinal European multicentre Care of Late Stage Parkinsonism (CLaSP) project. Individual semistructured interviews were conducted with patients ( = 11) and informal caregivers ( = 9) in Sweden. Data were analysed through the content analysis technique. The final analyses generated one main category: "We are trying to get by both with and without the formal care" and five subcategories: "Availability of health care is important for managing symptoms and everyday life"; "Dependence on others and scheduled days form everyday life"; "There is a wish to get adequate help when it is needed"; "Mixed feelings on future housing and respite care"; and "Family responsibility and loyalty for a functioning everyday life". Having regular contact with PD-specialised health care was perceived as important. Greater access to physiotherapy was wished for. Maintaining autonomy was perceived as important by patients, in both home health care and a future residential care setting. Responsibility and loyalty between spouses and support from children enabled everyday life to carry on at home, indicating a vulnerability for those without an informal caregiver. The results suggest that regular access to PD-specialised health care is important and that a specialised and multidisciplinary approach to the management of PD symptomatology is likely necessary. Non-PD-specialised staff in home health care and residential care facilities should regularly be given opportunities to obtain PD-specific education and information.
PubMed: 33815742
DOI: 10.1155/2021/9475026 -
Neurology Feb 2023In medical school, students learn to view the world through a biomedical lens. While necessary clinically, this lens can be impersonal. For example, the mental status...
In medical school, students learn to view the world through a biomedical lens. While necessary clinically, this lens can be impersonal. For example, the mental status examination (MSE) evaluates cognitive function through a brief assessment of alertness and orientation to person, place, time, and situation. While clinically useful, the MSE often neglects to capture a person's individuality. Visiting my grandmother who has Alzheimer disease highlighted this tension. I juxtaposed the impersonality of our MSE orientation scale with my grandmother's lived experiences. My grandmother is identified using a pseudonym. Informed consent was obtained from her health care power of attorney and family.Birds twitter and chirp as they flit into the shade,the covered patio a respite from the morning's heat.I sit with Joanna and show her a painting:an apple, red peppers, a garlic clove, and a grapefruitrest on a white napkin.Produce so vibrant the napkin is stainedwith their vivid reflections.The wrinkles around her eyes deepen as she squints at the picture.She always liked to see my artwork.Bright colors illuminate the lines of confusion on her face.Where did you get all this food?We're rationing for the war to stop Hitler.I have evaluated dementia:limited treatment options, behavioral interventions.Cognitive changes alterorientation to self,place, time, situation.Joanna and I sit on the memory care patio.The birdfeeder dances in the humid summer air.I've shared my artwork with Grandma Jofrom crayons' waxy scrawlto crisp acrylic colors.Today a t-shirt replaces my white coat.The war is over, grandma.The produce is from a grocery store.I redirect with another painting.This is a bridge in a park-She smiles: it's New York City, I miss going there.In the middle of Central Park,a cement bridge in a grassy parkspans a wide, still pond.Today, the colors of the bridge,reflected on the water,spark a glimmer of my grandmother.This time she knows the memory is in the past,as she tells me about New York in the Forties.With the beating of sparrow wings,the moment of clarity endsas past and present are blended again.When the sun sinks, my visit will fade.I clutch what happenedoutside, away from the clinical setting.What we cannot quantifywith A&O x1: oriented to self.
Topics: Humans; Female; Alzheimer Disease; Emotions; Brain; New York City
PubMed: 36443014
DOI: 10.1212/WNL.0000000000201602 -
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 -
Nursing Mar 2023Nurses provide care in various settings and advocate for vulnerable populations. Recognizing the need for follow-up care after hospitalization and mobilizing necessary...
Nurses provide care in various settings and advocate for vulnerable populations. Recognizing the need for follow-up care after hospitalization and mobilizing necessary resources are part of caring for patients, including those experiencing homelessness. This article discusses how one community coalition assessed gaps in care that might be met by establishing medical respite in the community.
Topics: Humans; Adult; Respite Care; Hospitalization; Ill-Housed Persons
PubMed: 36820696
DOI: 10.1097/01.NURSE.0000918524.41501.98 -
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 Palliative Care Apr 2022Palliative care encompasses supportive health care for patients at any stage of illness aimed at relieving symptoms, controlling pain, managing stress, offering respite... (Review)
Review
Palliative care encompasses supportive health care for patients at any stage of illness aimed at relieving symptoms, controlling pain, managing stress, offering respite for caregivers, and optimizing the quality of life. To explore strategies for increasing access to palliative care among individuals living in remote/rural communities, a rapid review was conducted on studies that explored the use of telehealth applications with this population. From December 2019 to February 2020, the PRISMA methodology was used to gather peer-reviewed studies published in the English language. MedLine, Google Scholar, and EBSCO were searched; no date limitations were set. Given the diversity of study methodologies and outcomes, the findings were synthesized narratively. The Cochrane Collaboration's tool for assessing the risk of bias was also employed. Lastly, the studies were mapped to clinical guidelines for the various aspects of quality palliative care. The 18 studies found, published between 2004 and 2019, were conducted in seven countries and on five continents. Aims included evaluating feasibility, efficacy, and user satisfaction. Insights draw from a combined pool of 3,313 patients and 250 providers. Most studies involved oncology patients and employed videoconferencing or a web platform/online software with videoconferencing. Three themes emerged: delivery of care, symptom management and quality of life, and patient/caregiver/provider satisfaction levels. Telehealth proved effective for patient and medication monitoring, provider and specialist appointments, and palliative care consultations. Operational benefits included clinician time saved, shorter appointment wait times, and reduced no show rates; implementation challenges also emerged. Statistical improvements in quality of life and symptom management were reported. Nearly two-thirds of the studies reported positive experiences among patients, caregivers, and providers; about half included an interprofessional team. The studies primarily focused on the structure/process and physical aspects of quality palliative care, there was a paucity of insights on the spiritual, cultural, end of life, and ethical/legal aspects of care. Two-thirds (12/18) of the studies employed a descriptive design. Risk for selection, performance, detection, and reporting biases emerged for all the studies; for example, only four of the studies included control groups and less than 20% (3/18) reported on attrition of study participants. Additional limitations include the rapid review methodology which relied heavily on the lead author's decisions and the restriction of studies published only in the English language. More rigorous research is required to confirm the viability of clinical care delivery and establish best practices for quality, virtual palliative care to remote/rural areas.
Topics: Caregivers; Hospice and Palliative Care Nursing; Humans; Palliative Care; Quality of Life; Telemedicine
PubMed: 33730904
DOI: 10.1177/08258597211001184 -
The Canadian Geographer. Geographe... 2022Eldercare and places of eldercare have been radicalized with the advent of COVID-19. Growing concerns about the safety of long-term care homes, coupled with the...
Eldercare and places of eldercare have been radicalized with the advent of COVID-19. Growing concerns about the safety of long-term care homes, coupled with the continuation of stay-at-home orders, mean that carers are reconstructing new meanings and places of care provision. Increasingly for many Canadians, the home is rapidly becoming the nexus of one's domestic, work, and caregiving world. By interviewing working carers (n = 5) living throughout Canada, this study investigates the changing meanings of home as a place for care during the COVID-19 pandemic. Drawing upon lived experiences of informal carers engaged in the workforce, we observe a blurring of spatial and temporal boundaries between places of work and places of care. Specifically, we note that the integration of carescapes and workscapes into a single domain presents both benefits and tensions to carers, such as increased schedule flexibility and disruptions at work, respectively. Parallel to this, we also explore how previous places of safety and respite, such as independent senior residences and long-term care homes, are perceived as sites of danger and anxiety due to the vulnerability of seniors to COVID-19. This dynamic is likely to continue well into the future, as long-term care homes fall out of favour and carers adopt a more integrated approach to caregiving within their daily lives.
PubMed: 35909794
DOI: 10.1111/cag.12740