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BMJ Supportive & Palliative Care Jun 2022Paediatric palliative care provides supportive care to children with life-threatening or life-limiting illnesses throughout the disease trajectory. Up to 42% of children...
BACKGROUND
Paediatric palliative care provides supportive care to children with life-threatening or life-limiting illnesses throughout the disease trajectory. Up to 42% of children receiving palliative care in Canada will die within a freestanding paediatric hospice or designated end-of-life care bed. Few studies have assessed families' experiences of this care within freestanding paediatric hospices.
OBJECTIVES
To find and describe literature relating to family experiences in paediatric hospice palliative care throughout the end-of-life care journey including grief and bereavement.
CRITERIA
Inclusion criteria: Children antepartum to 18 years or older if on paediatric palliative care service. Research conducted in freestanding paediatric hospices that focused on families' experiences and perceptions of end-of-life and grief and bereavement care. Full-text articles available in English.
EXCLUSION CRITERIA
Adult palliative and end-of-life care, respite care, palliative care provided in acute or community settings, professional perspectives, unexpected or sudden child death, pregnancy after loss.
SOURCES OF EVIDENCE
Academic Search Complete, CINAHL, Cochrane Database of Systematic Reviews, Embase, PsycINFO, PubMed and Web of Science databases were searched from database inception until the present. Grey literature was also searched for relevant results.
CHARTING METHODS
The scoping review was guided by recommendations from Arksey and O'Malley and Levac .
RESULTS
A total of 4250 papers were retrieved, of which 10 met the scoping review criteria. The majority of studies were conducted in the UK. Three major themes emerged: more supportive care for families including grief and bereavement support, the hospice experience itself and future research areas.
CONCLUSIONS
There is little literature that focuses specifically on the needs of families within freestanding paediatric hospices. Further examination of the themes identified above provides an opportunity for future research.
PubMed: 35649715
DOI: 10.1136/bmjspcare-2021-003457 -
World Journal For Pediatric &... Jul 2022Infants born with single ventricle heart disease require in-home medicalized care during the interstage period (time between the first and second staged heart surgery)....
Infants born with single ventricle heart disease require in-home medicalized care during the interstage period (time between the first and second staged heart surgery). These caregivers rely on extended family, friends, and hired caretakers to provide respite time. However, the coronavirus pandemic removed these families' options due to stay-at-home and social distancing directives. We explored the caregivers' experiences during the interstage period, including impacts on their lifestyle, as they managed their infants' critical needs during the coronavirus disease 2019 pandemic. In-person or telephonic interviews of 14 caregivers interviewed once or twice were conducted between November 2019 and July 2020. Constructivist Grounded Theory methodology guided both data collection and analysis for the inductive and abductive exploration of caregivers' experiences. Data analysis led to the development of 2 concepts: and . Refinement of the relationship between the 2 concepts led to the development of a theory grounded in the words and experiences of the participants called: . Our findings increase understanding of caregivers' experiences related to psychosocial and lifestyle impacts and the need for additional support during the interstage period.
Topics: COVID-19; Home Care Services; Humans; Hypoplastic Left Heart Syndrome; Infant; Pandemics; Treatment Outcome
PubMed: 35585726
DOI: 10.1177/21501351221099945 -
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 -
Patient Education and Counseling Dec 2021Upsurge in life expectancy, filial responsibility of caring, and healthcare advances have increased the older adult population in Asia. The last decade has witnessed... (Review)
Review
INTRODUCTION
Upsurge in life expectancy, filial responsibility of caring, and healthcare advances have increased the older adult population in Asia. The last decade has witnessed nuclear families' proliferation in Asia, leaving family caregivers with more accountability and responsibility. This review explores the pattern of caregiver burden among caregivers of older adults with chronic illness in Asia.
METHODS
PRISMA guidelines serves as the framework for this systematic review. Studies from selected databases assessed caregivers' physical state, psychological dysfunction, and or burden as an outcome measure. The Newcastle - Ottawa Quality Assessment Scale appraised the quality of the selected studies.
RESULTS
The review included 12 research articles. Caregivers consistently report mild to a moderate burden. Care recipient with functional dependency, comorbidities, memory, and sleep impairments, escalate caregiver burden. Caregiver variables intensifying burden were advancing age, male gender, spouse as a care recipient, longer care provision duration, and no assistance.
CONCLUSION
Optimal levels of emotional well-being, significant family/social support, and self-preparedness among caregivers are grounds for their empowerment.
PRACTICAL IMPLICATIONS
A paradigm shift from 'caregiver burden' to 'caregiver resilience' is advocated. Routine screening, preventive measures (skill-building and psychosocial empowerment), and restorative services (respite care and problem-based home visiting) for caregivers are forecasted.
Topics: Adaptation, Psychological; Aged; Caregiver Burden; Caregivers; Chronic Disease; Cost of Illness; Humans; Male; Social Support
PubMed: 33958255
DOI: 10.1016/j.pec.2021.04.021 -
JBI Evidence Synthesis Feb 2022The objective of this scoping review was to map and describe the available evidence reporting out-of-pocket expenses related to aging in place for older people with... (Review)
Review
OBJECTIVE
The objective of this scoping review was to map and describe the available evidence reporting out-of-pocket expenses related to aging in place for older people with frailty and their caregivers.
INTRODUCTION
As the global population ages, there has been increasing attention on supporting older people to live at home in the community as they experience health and functional changes. Older people with frailty often require a variety of supports and services to live in the community, yet the out-of-pockets costs associated with these resources are often not accounted for in health and social care literature.
INCLUSION CRITERIA
Sources that reported on the financial expenses incurred by older people (60 years or older) with frailty living in the community, or on the expenses incurred by their family and friend caregivers, were eligible for inclusion in the review.
METHODS
We searched for published and unpublished (ie, policy papers, theses, and dissertations) studies written in English or French between 2001 and 2019. The following databases were searched: CINAHL, MEDLINE, Scopus, Embase, PsycINFO, Sociological Abstracts, and Public Affairs Index. We also searched for gray literature in a selection of websites and digital repositories. JBI scoping review methodology was used, and we consulted with a patient and family advisory group to support the relevance of the review.
RESULTS
A total of 42 sources were included in the review, including two policy papers and 40 research papers. The majority of the papers were from the United States (n = 18), with others from Canada (n = 6), the United Kingdom (n = 3), Japan (n = 2), and one each from Australia, Brazil, China, Denmark, Israel, Italy, The Netherlands, Poland, Portugal, Singapore, South Korea, Taiwan, and Turkey. The included research studies used various research designs, including cross-sectional (n = 18), qualitative (n = 15), randomized controlled trials (n = 2), longitudinal (n = 2), cost effectiveness (n = 1), quasi-experimental (n = 1), and mixed methods (n = 1). The included sources used the term "frailty" inconsistently and used various methods to demonstrate frailty. Categories of out-of-pocket expenses found in the literature included home care, medication, cleaning and laundry, food, transportation, medical equipment, respite, assistive devices, home modifications, and insurance. Five sources reported on out-of-pocket expenses associated with people who were frail and had dementia, and seven reported on the out-of-pocket expenses for caregivers of people with frailty. While seven articles reported on specific programs, there was very little consistency in how out-of-pocket expenses were used as outcome measures. Several studies used measures of combined out-of-pocket expenses, but there was no standard approach to reporting aggregate out-of-pocket expenses.
CONCLUSIONS
Contextual factors are important to the experiences of out-of-pocket spending for older people with frailty. There is a need to develop a standardized approach to measuring out-of-pocket expenses in order to support further synthesis of the literature. We suggest a measure of out-of-pocket spending as a percentage of family income. The review supports education for health care providers to assess the out-of-pocket spending of community-dwelling older people with frailty and their caregivers. Health care providers should also be aware of the local policies and resources that are available to help older people with frailty address their out-of-pocket spending.
Topics: Aged; Caregivers; Cross-Sectional Studies; Frail Elderly; Health Expenditures; Humans; Independent Living
PubMed: 34738979
DOI: 10.11124/JBIES-20-00413 -
The Gerontologist Aug 2021Though exercise for care recipients receives considerable emphasis, few dyadic studies focus on caregivers. This systematic review identified dyadic exercise... (Review)
Review
BACKGROUND AND OBJECTIVES
Though exercise for care recipients receives considerable emphasis, few dyadic studies focus on caregivers. This systematic review identified dyadic exercise interventions, which measured outcomes for older adult caregivers. Studies that met inclusion criteria were examined to better understand whether caregivers derived greater benefit from exercising with care recipients, or not exercising at all.
RESEARCH DESIGN AND METHODS
PRISMA guidelines were followed to identify quantitative studies of dyadic exercise interventions in which caregivers enrolled with care recipients, and either coparticipated in exercise; or while their care recipients exercised independently, caregivers received a separate, nonexercise intervention or usual care (UC). To be included, studies had to measure physical or psychosocial outcomes for caregivers. Study quality was assessed via the Downs and Black checklist.
RESULTS
Eleven studies met inclusion criteria. In six, the dyad exercised; in five, care recipients exercised while caregivers received a separate program, or UC. Results suggest that caregivers may improve both psychosocial and physical health when exercising together with care recipients. Caregivers who did not exercise but received a separate, nonexercise intervention, such as support, education, or respite, showed psychosocial benefits. Those who received UC were less likely to derive physical or psychosocial benefits. Included studies were fair to good quality with moderate to high risk of bias.
DISCUSSION AND IMPLICATIONS
Often examined secondarily, caregivers are overlooked for participation in interventions with care recipients. This analysis suggests that caregivers may benefit from dyadic interventions in which they either exercise together with their care recipients or receive a separate nonexercise intervention or respite.
Topics: Aged; Caregivers; Humans; Quality of Life
PubMed: 32614050
DOI: 10.1093/geront/gnaa043 -
Journal of Aging & Social Policy Jul 2024Caregivers play a crucial role in providing health and social supports to their family and friends. Older adults who take on caregiving roles are themselves uniquely...
Caregivers play a crucial role in providing health and social supports to their family and friends. Older adults who take on caregiving roles are themselves uniquely vulnerable to negative health and financial effects due to their age and underlying health risks. Many caregivers do not receive adequate support - either formally or informally - exacerbating the strains of providing care. Racial and ethnic minority caregivers may be less likely to report receiving support in their role and face additional challenges. We describe these caregivers over 65 and the burdens they face. We recommend community health workers, direct compensation, and normalization of respite care to support these essential care workers in their role and as they age.
Topics: Aged; Aged, 80 and over; Female; Humans; Male; Caregivers; Social Support; Minority Groups
PubMed: 35290168
DOI: 10.1080/08959420.2022.2051683 -
Journal of Health Care For the Poor and... 2022People experiencing homelessness (PEH) have a high prevalence of mental illness and substance use disorder (SUD) and substantial acute and chronic disease burden....
People experiencing homelessness (PEH) have a high prevalence of mental illness and substance use disorder (SUD) and substantial acute and chronic disease burden. Transitional care and medical respite programs facilitate a safe transfer for PEH from the acute care to community setting. Many medical respite programs practice harm reduction strategies that can increase the opportunity for positive program outcomes for PEH with SUD. This transitional care and medical respite program evaluation explored program outcomes, health care utilization patterns, and comorbid conditions of persons with and without SUD. People experiencing homelessness with SUD had similar program outcomes and both groups had decreased acute care utilization after program engagement. A high prevalence of trimorbidity, which is associated with early mortality, was noted. Opportunities for harm reduction strategies to promote both social and clinical outcomes are offered.
Topics: Ill-Housed Persons; Humans; Patient Acceptance of Health Care; Respite Care; Substance-Related Disorders; Transitional Care
PubMed: 36245167
DOI: 10.1353/hpu.2022.0116 -
BMC Palliative Care Jan 2021Palliative care day services provide a safe environment for people with palliative care needs, enabling them to access a range of services while acting as a respite...
BACKGROUND
Palliative care day services provide a safe environment for people with palliative care needs, enabling them to access a range of services while acting as a respite services for family caregivers. Viewed as marginal services, they are often under resourced and under researched. The aim of this study was to understand how palliative day care services contribute to client care from the perspective of management and hospice multidisciplinary teams.
METHODS
A descriptive qualitative study, using six focus groups conducted with staff at three United Kingdom hospices in England, Scotland and Northern Ireland. Thirty-five participants were recruited, including management and staff. Discussions were transcribed and analysed thematically.
RESULTS
Four key themes emerged: (1) variations of care, beyond heterogeneity of patients; (2) unclear referrals and inconsistent patient population; (3) recognising strengths and challenges and (4) an uncertain future. A major focus of group discussions was the model of care and the benefits of the service, however the importance of demonstrating services' effectiveness and value for money was highlighted.
CONCLUSIONS
Management and hospice staff believed day-services to be a helpful introduction to palliative care, providing both social and medical support. Economic pressures and patient demand were influencing them to move from a social model to a hybrid model. Further research is needed to understand the effectiveness of the service.
Topics: Allied Health Personnel; Caregivers; Day Care, Medical; Delivery of Health Care; Focus Groups; Health Personnel; Health Services Accessibility; Hospices; Humans; Nurse Administrators; Nurses; Palliative Care; Qualitative Research; Referral and Consultation; Respite Care; United Kingdom
PubMed: 33435954
DOI: 10.1186/s12904-020-00699-7 -
Health & Social Care in the Community Nov 2022The vast majority of older adults who are chronically ill rely on informal caregivers for support. Caregivers often require additional support to facilitate their role.... (Review)
Review
The vast majority of older adults who are chronically ill rely on informal caregivers for support. Caregivers often require additional support to facilitate their role. To the best of our knowledge, there has yet to be a collation of caregiver-identified priorities for support. Using existing research, this scoping review provides a comprehensive picture of what caregivers have indicated as priorities for support. Arksey and O'Malley's scoping review framework guides this review. We searched MEDLINE, CINAHL and PsycINFO databases on July 2, 2021. We selected databases based on their relevance to nursing, health and social science. Inclusion criteria were peer-reviewed research of any design, a sample population of caregivers to older adults (>55 years), manuscripts published in English and the priorities for caregiver support identified by caregivers themselves. We screened a total of 3591 records, and 33 articles met the inclusion criteria. These studies were from geographic settings across the globe and used various quantitative, qualitative and mixed-method study designs. In our synthesis, we quantified the identified priorities within the studies using coding and content analysis. We present the following list of caregiver-identified priorities: (1) orientation to the caregiving role; (2) self-care and respite; (3) adapting healthcare; (4) improved supports; (5) information needs; (6) access to resources; (7) financial assistance. Policymakers, healthcare professionals and non-profit organisations can use evidence from this review to guide decisions when developing support services and interventions for caregivers.
Topics: Humans; Aged; Caregivers; Chronic Disease; Health Personnel; Research Design; Delivery of Health Care
PubMed: 36251430
DOI: 10.1111/hsc.14071