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What do patients and family-caregivers value from hospice care? A systematic mixed studies review.

ABSTRACT: BACKGROUND:It is not known which attributes of care are valued the most by those who experience hospice services. Such knowledge is integral to service development as it facilitates opportunities for continuous improvement of hospice care provision. The objectives of this mixed-studies systematic review were to explore patients' and their family carer views and experiences, to determine what they valued about adult hospice care in the UK. METHODS:ASSIA, PubMed, CINAHL and PsycINFO were searched from inception, up until March 2017 to identify qualitative, quantitative, and mixed-methods studies. Four additional searching techniques supplemented the main search and grey literature was included. A three-stage mixed-method systematic review was conducted with a sequential exploratory design. Thematic synthesis was used with qualitative data, followed by a narrative summary of the quantitative data. The qualitative and quantitative syntheses were then juxtaposed within a matrix to produce an overarching synthesis. RESULTS:Thirty-four studies highlighted that what patients and carers valued was generally context specific and stemmed from an amalgamation of hospice service components, which both individually and collectively contributed to improvements in quality of life. When the syntheses of qualitative and quantitative studies were viewed in isolation, the value placed on services remained relatively consistent, with some discrepancies evident in service availability. These were commonly associated with geographical variations, as well as differences in service models and timeframes. Through an overarching synthesis of the qualitative and quantitative evidence, however, notable variations and a more nuanced account of what people valued and why were more prominent, specifically in relation to a lack of social support for carers, disparate access to essential services, the underrepresentation of patients with a non-cancer diagnosis, and the dissatisfaction with the range of services provided. CONCLUSION:Review findings strengthen the existing evidence base and illuminates the underpinning elements of hospice care most valued by patients and their families. With large disparities in the availability of services, however, the underrepresentation of patients with non-malignant diseases and the limited evidence base demonstrating the adequate addressment of the social needs of carers, there continues to be considerable gaps that warrants further research.

SUBMITTER: Hughes NM

PROVIDER: S-EPMC6368799 | biostudies-literature | 2019 Feb

REPOSITORIES: biostudies-literature

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What do patients and family-caregivers value from hospice care? A systematic mixed studies review.

Hughes Nicole Marie NM Noyes Jane J Eckley Lindsay L Pritchard Trystan T

BMC palliative care 20190208 1

<h4>Background</h4>It is not known which attributes of care are valued the most by those who experience hospice services. Such knowledge is integral to service development as it facilitates opportunities for continuous improvement of hospice care provision. The objectives of this mixed-studies systematic review were to explore patients' and their family carer views and experiences, to determine what they valued about adult hospice care in the UK.<h4>Methods</h4>ASSIA, PubMed, CINAHL and PsycINFO ...[more]

PMID: 30736788

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Project description:BackgroundDementia is a chronic and progressive illness characterized by severe impairment and high dependencies. Under the influence of Chinese traditional culture, 80% of patients with dementia are watched over at home by family caregivers as primary caregivers. However, long-term care brings formidable burdens to them and reduces the quality of their life. It is necessary to find out the influencing factors of caregivers' burden.MethodsA scoping search was conducted on eight electronic databases from 1 January 2010 to 14 June 2022: PubMed, Embase, the Cochrane Library, Web of Science, China National Knowledge Infrastructure, China VIP Database, China Biomedical Literature Database, and Wanfang Data Knowledge Service Platform. Research articles included in this review discussed the factors affecting Chinese dementia family caregivers' care burden or stress, and the level of care burden was evaluated by a standardized care burden scale.ResultsA total of 1,888 related articles were found and 23 cross-sectional studies were eventually included. After quality assessment, 12 were of good quality and 11 were of fair quality. A total of 32 factors were identified that were associated with caregiver burden, and the results were grouped into three categories: patient, caregiver, and society. The severity of disease, poor self-care ability, neuropsychiatric symptoms, care time, number of helpers, poor health status, economic stress, poor psychological status, social support, and age were reported in many previous studies.ConclusionIn this review, the factors that affect the caregiver burden for people with dementia were clarified. By identifying these factors, hospitals, decision-makers, and communities can carry out special projects for these populations, provide appropriate assistance, or design corresponding intervention measures to reduce the caregiver burden and improve the quality of care for patients with dementia.Systematic review registration[https://www.crd.york.ac.uk/PROSPERO/], identifier [CRD42022347816].

Project description:Background and objectiveUntrained family caregivers struggle with complicated medical management regimens for hospice patients. An intervention was tested to improve caregiver's perception of pain management and patient's pain.Design, setting, and participantsThe intervention was tested with a 2-group (usual care vs intervention) randomized controlled trial using parallel mixed-methods analysis of 446 caregivers in 3 Midwestern hospice programs representing rural and urban settings.InterventionWeb conferencing or telephones were used to connect caregivers with the hospice care team during care plan meetings.MeasurementsCaregiver's perceptions of pain management were the primary outcome. Secondary outcomes included caregiver quality of life, patient's pain, and anxiety. Video recordings, field notes, and caregiver and staff interviews provided qualitative data.ResultsThe overall perception of pain management was not changed by the participation in hospice team meetings. Perceptions of fatalism improved for intervention participants, and the intervention participants perceived their patients' pain was better controlled than those in the control group. The intervention was found to be feasible to deliver in rural areas. Caregiver's anxiety and patient's pain were correlated ( r = .18; P = .003), and subanalysis indicated that caregivers of patients with cancer may benefit more from the intervention than other hospice caregivers. Qualitative analyses provided understanding of caregiver's perceptions of pain, cost, and facilitators and barriers to routine involvement of family in care plan meetings. Limitations and Conclusion: The hospice philosophy is supportive of caregiver involvement in care planning, and technology makes this feasible; the intervention needs modification to become translational as well as additional measurement to assess effectiveness. Caregiver education and emotional support should occur outside the meeting, and a strong leader should facilitate the meeting to control efficiency. Finally, the intervention may benefit caregivers of patients with cancer more than others.

Project description:IntroductionPatients with complex care needs (PCCNs) often suffer from combinations of multiple chronic conditions, mental health problems, drug interactions and social vulnerability, which can lead to healthcare services overuse, underuse or misuse. Typically, PCCNs face interactional issues and unmet decisional needs regarding possible options in a cascade of interrelated decisions involving different stakeholders (themselves, their families, their caregivers, their healthcare practitioners). Gaps in knowledge, values clarification and social support in situations where options need to be deliberated hamper effective decision support interventions. This review aims to (1) assess decisional needs of PCCNs from the perspective of stakeholders, (2) build a taxonomy of these decisional needs and (3) prioritise decisional needs with knowledge users (clinicians, patients and managers).Methods and analysisThis review will be based on the interprofessional shared decision making (IP-SDM) model and the Ottawa Decision Support Framework. Applying a participatory research approach, we will identify potentially relevant studies through a comprehensive literature search; select relevant ones using eligibility criteria inspired from our previous scoping review on PCCNs; appraise quality using the Mixed Methods Appraisal Tool; conduct a three-step synthesis (sequential exploratory mixed methods design) to build taxonomy of key decisional needs; and integrate these results with those of a parallel PCCNs' qualitative decisional need assessment (semistructured interviews and focus group with stakeholders).Ethics and disseminationThis systematic review, together with the qualitative study (approved by the Centre Intégré Universitaire de Santé et Service Sociaux du Saguenay-Lac-Saint-Jean ethical committee), will produce a working taxonomy of key decisional needs (ontological contribution), to inform the subsequent user-centred design of a support tool for addressing PCCNs' decisional needs (practical contribution). We will adapt the IP-SDM model, normally dealing with a single decision, for PCCNs who experience cascade of decisions involving different stakeholders (theoretical contribution). Knowledge users will facilitate dissemination of the results in the Canadian primary care network.Prospero registration numberCRD42015020558.

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What do patients and family-caregivers value from hospice care? A systematic mixed studies review.

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What do patients and family-caregivers value from hospice care? A systematic mixed studies review.

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