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The unmet needs of informal carers of stroke survivors: a protocol for a systematic review of quantitative and qualitative studies.

ABSTRACT: INTRODUCTION:Stroke events deeply affect not only the stroke survivor but also often the quality of life and physical and psychological health of the family and friends who care for them. There is a need for further information about the unmet needs of these informal carers in order to develop support services and interventions. The primary objective of this review is to report and synthesise the research describing the unmet needs of carers of stroke survivors. METHODS AND ANALYSIS:A systematic review of quantitative and qualitative studies that report on the unmet needs of carers will be conducted. The following databases will be searched for relevant articles: MEDLINE, Cumulative Index to Nursing and Allied Health Literature, PsycINFO, EMBASE, Allied and Complementary Medicine Database and Scopus. No publication date constraints will be applied. Studies will be limited to those published in English and conducted among humans. Eligible studies will report on the unmet needs of informal carers of stroke survivors, defined as family members, friends and other unpaid caregivers. Studies which focus on formal, clinical or medical caregivers will be excluded. A narrative synthesis and pooled analysis of the main outcomes will be reported. ETHICS AND DISSEMINATION:This review will be submitted to a peer-reviewed journal. Our findings are expected to provide new insights into the unmet needs of stroke survivors' carers. Knowledge about the unmet needs of carers will inform the development and refinement of interventions and services to address these needs and better support carers of stroke survivors. The findings of this systematic review will be disseminated publicly and in peer-reviewed journals and may be the topic of research presentations. TRIAL REGISTRATION NUMBER:CRD42017067391.

SUBMITTER: Denham AMJ

PROVIDER: S-EPMC5878248 | biostudies-literature | 2018 Jan

REPOSITORIES: biostudies-literature

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The unmet needs of informal carers of stroke survivors: a protocol for a systematic review of quantitative and qualitative studies.

Denham Alexandra M J AMJ Baker Amanda L AL Spratt Neil N Guillaumier Ashleigh A Wynne Olivia O Turner Alyna A Magin Parker P Bonevski Billie B

BMJ open 20180131 1

<h4>Introduction</h4>Stroke events deeply affect not only the stroke survivor but also often the quality of life and physical and psychological health of the family and friends who care for them. There is a need for further information about the unmet needs of these informal carers in order to develop support services and interventions. The primary objective of this review is to report and synthesise the research describing the unmet needs of carers of stroke survivors.<h4>Methods and analysis</ ...[more]

PMID: 29391371

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Project description:IntroductionStroke is a leading cause of disability worldwide. The average hospital length of stay ranges from 3 to 28 days, and after discharge home the stroke survivors will live with physical, cognitive, even psychological disorders for the rest of their lives. It is essential to review the unmet needs of stroke survivors.Methods and analysisA systematic review of previous quantitative and qualitative studies reporting the unmet needs of stroke survivors in their homes will be conducted. The following six databases will be searched from inception to December 2018 for relevant articles: PubMed, EMBASE, CINAHL, PsycINFO, SCOPUS and China Biology Medicine. We will include studies limited to human and published in English or Chinese, and the patients with stroke should discharge home rather than any other professional organisations including nursing homes or community rehabilitation units and so on. Data of quantitative research will be standardised for comparison, thematic analysis will be used for qualitative data and a narrative synthesis and pooled analysis of the main outcomes will be reported.Ethics and disseminationThis review will be submitted to an international professional journal, and the detailed search strategies and analysis flowchart will be openly included as supplements. This study does not require ethical approval as no patient's identifiable data will be used. Our findings will give a new look at the aspect of stroke survivors' unmet needs in their long-term recovery stage, especially the trajectories of unmet needs at different timepoints. What is more, this review will demonstrate the long-term unmet needs of stroke survivors from different countries, will compare any variations between high-income and low-income regions, and the geographical differences of needs will be mapped if necessary. We will endeavour to provide as much information as possible to healthcare professionals and public health policy makers in order to promote further medical reform.Trial registration numberCRD42018112181.

Project description:Introduction and backgroundSurvival following critical illness is associated with a significant burden of physical, emotional and psychosocial morbidity. Recovery can be protracted and incomplete, with important and sustained effects upon everyday life, including family life, social participation and return to work. In stark contrast with other critically ill patient groups (eg, those following cardiothoracic surgery), there are comparatively few interventional studies of rehabilitation among the general intensive care unit patient population. This paper outlines the protocol for a sub study of the RECOVER study: a randomised controlled trial evaluating a complex intervention of enhanced ward-based rehabilitation for patients following discharge from intensive care.Methods and analysisThe RELINQUISH study is a nested longitudinal, qualitative study of family support and perceived healthcare needs among RECOVER participants at key stages of the recovery process and at up to 1 year following hospital discharge. Its central premise is that recovery is a dynamic process wherein patients' needs evolve over time. RELINQUISH is novel in that we will incorporate two parallel strategies into our data analysis: (1) a pragmatic health services-oriented approach, using an a priori analytical construct, the 'Timing it Right' framework and (2) a constructivist grounded theory approach which allows the emergence of new themes and theoretical understandings from the data. We will subsequently use Qualitative Health Needs Assessment methodology to inform the development of timely and responsive healthcare interventions throughout the recovery process.Ethics and disseminationThe protocol has been approved by the Lothian Research Ethics Committee (protocol number HSRU011). The study has been added to the UK Clinical Research Network Database (study ID. 9986). The authors will disseminate the findings in peer reviewed publications and to relevant critical care stakeholder groups.

Project description:Few data on services for people with severe multiple sclerosis (MS) are available. The Palliative Network for Severely Affected Adults with MS in Italy (PeNSAMI) developed a home palliative care program for MS patients and carers, preceded by a literature review and qualitative study (here reported).To identify unmet needs of people with severe MS living at home by qualitative research involving key stakeholders, and theorize broad areas of intervention to meet those needs.Data were collected from: at least 10 personal interviews with adults with severe MS (primary/secondary progressive, EDSS?8.0); three focus group meetings (FGs) of carers of people with severe MS; and two FGs of health professionals (HPs). Grounded theory guided the analysis of interview and FG transcripts, from which the areas of intervention were theorized.Between October 2012 and May 2013, 22 MS patients, 30 carers and 18 HPs participated. Forty-eight needs themes were identified, grouped into 14 categories and four domains. Seven, highly interdependent intervention areas were theorized. Patients had difficulties expressing needs; experiences of burden and loneliness were prominent, chiefly in dysfunctional, less affluent families, and among parent carers. Needs differed across Italy with requirements for information and access to services highest in the South. All participants voiced a strong need for qualified personnel and care coordination in day-to-day home care. Personal hygiene emerged as crucial, as did the need for a supportive network and preservation of patient/carer roles within family and community.Unmet needs transcended medical issues and embraced organizational and psychosocial themes, as well as health policies. The high interdependence of the seven intervention areas theorized is in line with the multifaceted approach of palliative care. At variance with typical palliative contexts, coping with disability rather than end-of-life was a major concern of patients and carers.

Project description:BACKGROUND:Some sub-types of haematological cancers are acute and require intensive treatment soon after diagnosis. Other sub-types are chronic, relapse over many years and require life-long cycles of monitoring interspersed with bouts of treatment. This often results in significant uncertainty about the future, high levels of depression and anxiety, and reduced quality of life. Little is known about how to improve care for haematological cancer survivors. This study explored qualitatively, in a sample of haematological cancer survivors, (i) their unmet needs experienced as a result of their disease and treatment; and (ii) strategies that may help address these needs. METHODS:Semi-structured interviews were conducted with 17 adult haematological cancer survivors. Data was analysed using qualitative content analysis. The Supportive Care Framework guided data collection and analysis. RESULTS:Participants had a mean age of 57?years (SD 13). Most were male (n?=?10, 59%). Five themes emerged from the data: (i) changes in unmet needs across the care trajectory (with greatest unmet needs experienced soon after diagnosis, at discharge from hospital and with cancer recurrence); (ii) informational unmet needs requiring improved patient-centred communication; (iii) uncertainty about treatment and the future; (iv) coordinated, tailored and documented post-treatment care planning as a strategy for optimal care delivery; and (v) ongoing support services to meet psychosocial and practical unmet needs by involving peer support, less bureaucratic transport services and flexible work arrangements. CONCLUSIONS:To our knowledge, this is the first qualitative investigation using the Supportive Care Framework to explore unmet needs of haematological cancer survivors. Our findings offer fresh insights into this important area of study. Written, take-home care plans which provide simple but tailored guidance on where to seek additional support may help decrease uncertainty and feelings of vulnerability post-treatment for adult haematological cancer survivors. Future research should further develop and test strategies aimed at addressing unmet needs of haematological cancer survivors identified in this study.

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The unmet needs of informal carers of stroke survivors: a protocol for a systematic review of quantitative and qualitative studies.

Publications

The unmet needs of informal carers of stroke survivors: a protocol for a systematic review of quantitative and qualitative studies.

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