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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 -
Rehabilitation Nursing : the Official... 2020Adjustment to disability following a stroke may involve coming to terms with a variety of losses. The purpose of this exploratory, cross-sectional survey was to describe...
Adjustment to disability following a stroke may involve coming to terms with a variety of losses. The purpose of this exploratory, cross-sectional survey was to describe losses experienced following a stroke as perceived by patients and their spouses. The data were derived from interviews with 60 middle-aged and older couples in which one person had suffered a stroke. Content analysis of the responses to open-ended questions about perceived losses yielded three major categories of loss: 1. activities, 2. abilities and characteristics, and 3. independence. The loss most often mentioned by patients was mobility; by spouses, traveling. When responses were examined by sex, the loss mentioned most frequently by both male and female spouses identified traveling as what they missed most after the stroke. Examination of losses in relation to length of time since the stroke revealed independence as a prominently mentioned loss for most groups. Comparison by cerebral hemisphere damaged revealed that patients with right-brain damage missed their independence while patients with left-brain damage missed mobility. The findings of this study support two major aspects of rehabilitation nursing practice: facilitation of patient independence, and consideration of spouse or caregiver's need for support or respite care on a long-term basis.
Topics: Activities of Daily Living; Adaptation, Psychological; Adult; Aged; Aged, 80 and over; Cross-Sectional Studies; Female; Humans; Male; Middle Aged; Perception; Physical Functional Performance; Quality of Life; Stroke; Surveys and Questionnaires; Time
PubMed: 32358318
DOI: 10.1097/rnj.0000000000000262 -
Journal of Developmental and Behavioral... Apr 2022The objective of this study was to estimate time-specific, population-based prevalence of 14 specific barriers to respite services, as reported by parents of children...
OBJECTIVE
The objective of this study was to estimate time-specific, population-based prevalence of 14 specific barriers to respite services, as reported by parents of children with special health care needs (CSHCN) with and without emotional, behavioral, or developmental problems (EBDPs), and to identify individual, family, and environmental characteristics associated with the most common barriers to respite care for families of CSHCN.
METHODS
Descriptive, bivariate, and multivariable logistic regression analyses were used to examine data from the National Survey of Children with Special Health Care Needs for 2005/2006 and 2009/2010.
RESULTS
Among families reporting unmet need for respite care services, service availability or transportation barriers (23.8%) and cost barriers (19.8%) were the most commonly reported obstacles among all CSHCN, followed by lack of knowledge about where to obtain respite services (12.1%) and inconvenient service times (11.3%). Reports of location or availability barriers decreased significantly from 2005 to 2009, but service time barriers increased simultaneously. All types of barriers to respite services were reported significantly more frequently by CSHCN with EBDPs than those without, even when other demographic factors were controlled for. CSHCN conditional severity and discontinuity in insurance were positively associated with cost barriers, whereas CSHCN public health coverage was associated with reduced rates of reported cost and information barriers to respite care.
CONCLUSION
Increased understanding of parent-reported barriers to respite care for families of CSHCN is critical to creating structural and practice-oriented solutions that address obstacles and increase access to respite care for these vulnerable families.
Topics: Child; Delivery of Health Care; Disabled Children; Health Care Surveys; Health Services Accessibility; Health Services Needs and Demand; Humans; Parents; Respite Care; United States
PubMed: 34310466
DOI: 10.1097/DBP.0000000000000992 -
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 -
Intellectual and Developmental... Feb 2022Aging family caregivers of adults with intellectual and developmental disabilities (IDD) have unique circumstances setting them apart from the general caregiving...
Aging family caregivers of adults with intellectual and developmental disabilities (IDD) have unique circumstances setting them apart from the general caregiving population. Such differences include the extensive duration of the caregiving, and health concerns that manifest in the caregiver and individuals with IDD over time. Because of increasing longevity, family caregivers are likely to become compound caregivers (i.e., individuals caregiving for multiple people). Almost 70% of family caregivers of individuals with IDD experience compound caregiving, yet we know very little about compound caregiving. In this article, we highlight the importance of supporting compound caregivers by identifying research issues that address current challenges and future directions. Implications for research are noted, including the need for multidimensional outcome measures and longitudinal studies.
Topics: Adult; Aging; Caregivers; Humans; Intellectual Disability
PubMed: 35104349
DOI: 10.1352/1934-9556-60.1.66 -
Journal of Hospice and Palliative... Aug 2022Families of children receiving palliative care depict lack of respite services as a top unmet need. Although the benefits of access to respite services are notable,... (Review)
Review
Families of children receiving palliative care depict lack of respite services as a top unmet need. Although the benefits of access to respite services are notable, little is known on a state-by-state basis about respite provision or funding. The study objective was to conduct a national evaluation of pediatric respite care programs to identify and describe how states provide and fund respite care for children. The study approach adhered to the Scale for the Assessment of Narrative Review Articles quality standards using multiple data sources including engagement with the existing literature, content analyses of public-facing websites, and conversations with 40 stakeholders from 15 states. States offered respite services in a variety of ways: Medicaid waivers used to fund respite care, state-funded programs that provide respite, and philanthropy-based respite facilities. This narrative review revealed the creativity involved in different settings to improve respite access, staffing, and reimbursement. Suggestions to address the unmet respite needs of families included establishing a respite home, improving Medicaid reimbursement, expanding Medicaid waiver eligibility, providing a respite benefit through Medicaid, implementing nursing workforce initiatives, and centralizing staffing databases.
Topics: Child; Eligibility Determination; Humans; Medicaid; Respite Care; United States
PubMed: 35470307
DOI: 10.1097/NJH.0000000000000867 -
Comprehensive Child and Adolescent... Feb 2021Children with complex care needs form a diverse population with a variety of health and social care requisites in the presence of a range of complex symptoms and...
Children with complex care needs form a diverse population with a variety of health and social care requisites in the presence of a range of complex symptoms and diagnoses. An exploratory literature review with a systematic search of the current qualitative literature was undertaken to explore parents' perceptions and evaluation of respite care services for children with complex needs. A systematic search was undertaken using a pre-defined search strategy in six databases; CINAHL, EMBASE, PsycINFO, Applied Social Sciences Index & abstracts and Web of Science. Studies were screened using inclusion criteria and eight studies were included in the review. These were analyzed using thematic analysis based on Braun and Clarke framework. Findings identified that there was a limited availability of respite care services for children with complex needs. Parents' perceived that respite was beneficial for themselves, their child and other siblings in the family. Barriers to accessing respite were also identified. It is recommended that respite services should be flexible and appropriate to the family's needs. A combination of in home and out of home services that are responsive to families' needs and are flexible would be optimal. Qualitative research is considered most suitable to obtain the views of parents of children with complex needs. Further research is recommended in this area, particularly in determining how services may improve and what the views of children using the respite services and their siblings are regarding respite.
PubMed: 33620262
DOI: 10.1080/24694193.2021.1885523 -
Journal of Family Medicine and Primary... Sep 2022The rising trend in the ageing population alongside social, cultural, and economic changes poses a major threat to the health care system in the country. Elderly...
The rising trend in the ageing population alongside social, cultural, and economic changes poses a major threat to the health care system in the country. Elderly population have dynamic and complex health care needs, are debilitated by the progressive chronic life-threatening diseases, and live a compromised quality of life. Palliative care, with its multifaceted approach, can provide respite to the elderly population. A decentralized approach in which palliative care is provided by the local community will ensure seamless continuity of care and care at an affordable cost. General practitioners or family physicians play a vital role in delivering primary palliative care to the elderly population in the community. An integrating primary palliative-geriatric care model will ensure that care is provided in alignment with the patients' and their families' wishes along the trajectory of the life-threatening illness and at the patients' preferred place. However, delivering primary palliative care in the community can be riddled with challenges at various levels, such as identification of patients in need of palliative care, interpersonal communication, addressing patients' and caregivers' needs, clarity in roles and responsibilities between general practitioner and family physicians and specialist palliative care teams, coordination of services with specialists, and lack of standard guidelines for palliative care referral. Various geriatric-palliative care models have been tested over the years, such as delivering palliative and end-of-life care for disease-specific conditions at specified care settings (home or hospice) and provision of care by different specialist palliative care teams and general practitioners or family physicians. Akin to the aforementioned models, the National Health Program in the country envisages to strengthen the integration of geriatric and palliative care. The integrated geriatric-palliative care model will ensure continuity of care, equitable distribution of service, impeccable inter-sectoral collaboration and care at an affordable cost.
PubMed: 36505579
DOI: 10.4103/jfmpc.jfmpc_399_22 -
Journal of Pain and Symptom Management Jul 2022Given workforce and funding constraints, pediatric hospice and palliative care clinicians often find challenges providing services for seriously ill children and...
CONTEXT
Given workforce and funding constraints, pediatric hospice and palliative care clinicians often find challenges providing services for seriously ill children and families, particularly in low resource and rural/remote areas.
OBJECTIVES
To describe the services, training, and education needs of pediatric hospice and palliative care programs across the Northwest United States as part of the formation of a new regional coalition.
METHODS
Electronic surveys were sent to pediatric hospice and palliative care clinicians through state organizations as part of an email invitation to join the Northwest Pediatric Palliative Care Coalition. Data were analyzed descriptively using univariate analysis.
RESULTS
Sixty-four participants representing 37 unique programs responded from seven states, including Washington (41%, n=27), Oregon (38%, n=25), Idaho (11%, n=7), Alaska (5%, n=3), Montana (3%, n=2), Colorado (2%, n=1), and Nevada (2%, n=1). Programs provided pediatric hospice care (42%, n=33/78) and palliative care services (30%, n=26/86). Although 26% (n=15/58) had been providing pediatric hospice and palliative care for >20 years, 40% (n=21/53) reported only serving <5 pediatric patients per year. Specific services provided included pediatric bereavement support (16%, n=37/231), telehealth (14%, n=33/231), and respite (10%, n=23/231). Barriers occurring always, often, or sometimes included lack of trained staff (84%), financial support (59%), and access to home infusions (48%). From the coalition, participants prioritized education on parent/caregiver psychosocial support (40%, n=19/48), goals of care communication (44%, n=21/48), and symptom management (45%, n=21/47).
CONCLUSIONS
Pediatric hospice and palliative care clinicians face numerous barriers and may benefit from a coalition that provides networking and tailored education.
Topics: Child; Hospice Care; Hospice and Palliative Care Nursing; Hospices; Humans; Palliative Care; Terminal Care; United States
PubMed: 35192876
DOI: 10.1016/j.jpainsymman.2022.02.015 -
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