scholarly journals The specification, acceptability and effectiveness of respite care and short breaks for young adults with complex healthcare needs: protocol for a mixed-methods systematic review

BMJ Open ◽  
2019 ◽  
Vol 9 (6) ◽  
pp. e030470
Author(s):  
Gerlinde Pilkington ◽  
Katherine Knighting ◽  
Lucy Bray ◽  
Julia Downing ◽  
Barbara A Jack ◽  
...  
Keyword(s):  
Systematic Review ◽  
Young Adults ◽  
Mixed Methods ◽  
Respite Care ◽  
Knowledge Map ◽  
Healthcare Needs ◽  
Service Models ◽  
Framework Approach ◽  
Evidence Review

IntroductionThe number of young adults with complex healthcare needs due to life-limiting conditions/complex physical disability has risen significantly as children with complex conditions survive into adulthood. Respite care and short breaks are an essential service, however, needs often go unmet after the transition to adult services, leading to a significant impact on the life expectancy and quality of life for this population. We aim to identify, appraise and synthesise relevant evidence to explore respite care and short breaks provision for this population, and to develop a conceptual framework for understanding service models.Methods and analysisA mixed-methods systematic review conducted in two stages: (1) knowledge map and (2) evidence review. We will comprehensively search multiple electronic databases; use the Citations, Lead authors, Unpublished materials, Google Scholar, Theories, Early examples, and Related projects (CLUSTER) approach, search relevant websites and circulate a ‘call for evidence’. Using the setting, perspective, intervention/phenomenon of interest, comparison and evaluation framework, two reviewers will independently select evidence for inclusion into a knowledge map and subsequent evidence review, extract data relating to study and population characteristics, methods and outcomes; and assess the quality of evidence. A third reviewer will arbitrate where necessary.Evidence will be synthesised using the following approaches: quantitative (narratively/conducting meta-analyses where appropriate); qualitative (framework approach); policy and guidelines (documentary analysis informed approach). An overall, integrated synthesis will be created using a modified framework approach. We will use Grading of Recommendations Assessment, Development and Evaluation (GRADE)/GRADE-Confidence in the Evidence from Reviews of Qualitative Research to assess the strength and confidence of the synthesised evidence. Throughout, we will develop a conceptual framework to articulate how service models work in relation to context and setting.Ethics and disseminationEthical approval is not required as this is a systematic review. We will present our work in academic journals, at appropriate conferences; we will disseminate findings across networks using a range of media. Steering and advisory groups were established to ensure findings are shared widely and in accessible formats.PROSPERO registration numberCRD42018088780.

scholarly journals Respite care and short breaks for young adults aged 18–40 with complex health-care needs: mixed-methods systematic review and conceptual framework development

2021 ◽  
Vol 9 (6) ◽  
pp. 1-268
Author(s):  
Katherine Knighting ◽  
Gerlinde Pilkington ◽  
Jane Noyes ◽  
Brenda Roe ◽  
Michelle Maden ◽  
...  
Keyword(s):  
Health Care ◽  
Young Adults ◽  
Mixed Methods ◽  
Cost Effectiveness ◽  
Conceptual Framework ◽  
Respite Care ◽  
Knowledge Map ◽  
Health Care Needs ◽  
Care Needs ◽  
Adult Services

Background The number of young adults with complex health-care needs due to life-limiting conditions/complex physical disability has risen significantly over the last 15 years, as more children now survive into adulthood. The transition from children to adult services may disrupt provision of essential respite/short break care for this vulnerable population, but the impact on young adults, families and providers is unclear. Aim To review the evidence on respite care provision for young adults (aged 18–40 years) with complex health-care needs, provide an evidence gap analysis and develop a conceptual framework for respite care. Design A two-stage mixed-methods systematic review, including a knowledge map of respite care and an evidence review of policy, effectiveness, cost-effectiveness and experience. Data sources Electronic databases and grey/unpublished literature were searched from 2002 to September 2019. The databases searched included Cumulative Index to Nursing and Allied Health Literature, MEDLINE, EMBASE, PsycINFO, Applied Social Sciences Index and Abstracts, Health Management Information Consortium, PROSPERO, Turning Research into Practice, COnNECT+, British Nursing Index, Web of Science, Social Care Online, the National Institute for Health Research Journals Library, Cochrane Effective Practice and Organisation of Care specialist register, databases on The Cochrane Library and international clinical trials registers. Additional sources were searched using the CLUSTER (Citations, Lead authors, Unpublished materials, Scholar search, Theories, Early examples, Related projects) approach and an international ‘call for evidence’. Methods and analysis Multiple independent reviewers used the SPICE (Setting, Perspective, Intervention/phenomenon of interest, Comparison, Evaluation) framework to select and extract evidence for each stage, verified by a third reviewer. Study/source characteristics and outcomes were extracted. Study quality was assessed using relevant tools. Qualitative evidence was synthesised using a framework approach and UK policy was synthesised using documentary content analysis. GRADE-CERQual (Grading of Recommendations Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative Research) was used to assess confidence in the evidence. Logic models developed for each type of respite care constituted the conceptual framework. Results We identified 69 sources (78 records) from 126,267 records. The knowledge map comprised the following types of respite care: residential, home based, day care, community, leisure/social provision, funded holidays and emergency. Seven policy intentions included early transition planning and prioritising respite care according to need. No evidence was found on effectiveness and cost-effectiveness. Qualitative evidence focused largely on residential respite care. Facilitators of accessible/acceptable services included trusted and valued relationships, independence and empowerment of young adults, peer social interaction, developmental/age-appropriate services and high standards of care. Barriers included transition to adult services, paperwork, referral/provision delay and travelling distance. Young adults from black, Asian and minority ethnic populations were under-represented. Poor transition, such as loss of or inappropriate services, was contrary to statutory expectations. Potential harms included stress and anxiety related to safe care, frustration and distress arising from unmet needs, parental exhaustion, and a lack of opportunities to socialise and develop independence. Limitations No quantitative or mixed-methods evidence was found on effectiveness or cost-effectiveness of respite care. There was limited evidence on planned and emergency respite care except residential. Conclusions Policy intentions are more comprehensively met for young people aged < 18 years who are accessing children’s services. Young adults with complex needs often ‘fall off a cliff’ following service withdrawal and this imbalance needs addressing. Future work Research to quantify the effectiveness and cost-effectiveness of respite care to support service development and commissioning. Development of a core set of outcomes measures to support future collation of evidence. Study registration This study is registered as PROSPERO CRD42018088780. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 6. See the NIHR Journals Library website for further project information.

scholarly journals Psychosocial influences on help-seeking behaviour for cancer in low-income and lower middle-income countries: a mixed-methods systematic review

2021 ◽  
Vol 6 (2) ◽  
pp. e004213
Author(s):  
Grace McCutchan ◽  
Bahr Weiss ◽  
Harriet Quinn-Scoggins ◽  
Anh Dao ◽  
Tom Downs ◽  
...  
Keyword(s):  
Systematic Review ◽  
Mixed Methods ◽  
Cancer Treatment ◽  
Help Seeking ◽  
Middle Income ◽  
Cancer Symptoms ◽  
Middle Income Countries ◽  
Help Seeking Behaviour ◽  
Psychosocial Influences

IntroductionStarting cancer treatment early can improve outcomes. Psychosocial factors influencing patients’ medical help-seeking decisions may be particularly important in low and lower middle-income countries (LMIC) where cancer outcomes are poor. Comprehensive review evidence is needed to understand the psychosocial influences on medical help-seeking for cancer symptoms, attendance for diagnosis and starting cancer treatment.MethodsMixed-methods systematic review registered on PROSPERO (CRD42018099057). Peer-reviewed databases were searched until April 2020 for studies assessing patient-related barriers and facilitators to medical help-seeking for cancer symptoms, diagnosis and treatment in adults (18+ years) living in LMICs. Quality of included studies was assessed using the Critical Appraisal Skills Programme tool. Data were synthesised using meta-analytic techniques, meta-ethnography or narrative synthesis as appropriate.ResultsOf 3963 studies identified, 64 were included. In quantitative studies, use of traditional, complementary and alternative medicine (TCAM) was associated with 3.60 higher odds of prolonged medical help-seeking (95% CI 2.06 to 5.14). Qualitative studies suggested that use of TCAM was a key barrier to medical help-seeking in LMICs, and was influenced by causal beliefs, cultural norms and a preference to avoid biomedical treatment. Women face particular barriers, such as needing family permission for help-seeking, and higher stigma for cancer treatment. Additional psychosocial barriers included: shame and stigma associated with cancer such as fear of social rejection (eg, divorce/disownment); limited knowledge of cancer and associated symptoms; and financial and access barriers associated with travel and appointments.ConclusionDue to variable quality of studies, future evaluations would benefit from using validated measures and robust study designs. The use of TCAM and gender influences appear to be important barriers to help-seeking in LMIC. Cancer awareness campaigns developed with LMIC communities need to address cultural influences on medical help-seeking behaviour.

Quality of life in adolescents and young adults with CHD is not reduced: a systematic review and meta-analysis

2015 ◽  
Vol 26 (3) ◽  
pp. 415-425 ◽  
Author(s):  
Morten Schrøder ◽  
Kirsten A. Boisen ◽  
Jesper Reimers ◽  
Grete Teilmann ◽  
Jesper Brok
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Young Adults ◽  
Meta Analysis ◽  
Adolescents And Young Adults ◽  
Analysis Model ◽  
Significant Difference ◽  
Newcastle Ottawa Scale ◽  
First Time

AbstractPurposeWe performed a systematic review and meta-analysis of observational studies assessing quality of life in adolescents and young adults born with CHD compared with age-matched controls.MethodsWe carried out a systematic search of the literature published in Medline, Embase, PsychINFO, and the Cochrane Library’s Database (1990–2013); two authors independently extracted data from the included studies. We used the Newcastle–Ottawa scale for quality assessment of studies. A random effects meta-analysis model was used. Heterogeneity was assessed using the I2-test.ResultsWe included 18 studies with 1786 patients. The studies were of acceptable-to-good quality. The meta-analysis of six studies on quality of life showed no significant difference – mean difference: −1.31; 95% confidence intervals: −6.51 to +3.89, I2=90.9% – between adolescents and young adults with CHD and controls. Similar results were found in 10 studies not eligible for the meta-analysis. In subdomains, it seems that patients had reduced physical quality of life; however, social functioning was comparable or better compared with controls.ConclusionFor the first time in a meta-analysis, we have shown that quality of life in adolescents and young adults with CHD is not reduced when compared with age-matched controls.

scholarly journals P077 What matters to Ulcerative Colitis patients when they make treatment decisions? A systematic review

2021 ◽  
Vol 15 (Supplement_1) ◽  
pp. S180-S180
Author(s):  
A M Folan ◽  
G Jones ◽  
D Baker ◽  
S Brown ◽  
M Lee ◽  
...  
Keyword(s):  
Systematic Review ◽  
Ulcerative Colitis ◽  
Decision Making ◽  
Mixed Methods ◽  
Elective Surgery ◽  
Treatment Decisions ◽  
Physical Symptoms ◽  
Adherence To Medication ◽  
What Matters

Abstract Background The decision for ulcerative colitis (UC) patients to opt for elective surgery or continue medical treatment is dependent on patient preferences taking into account a range of factors. In addition to choosing between medical and surgical treatment, patients undergoing elective surgery are presented with a further decision regarding which operation to choose. The aim of this systematic review is to identify and understand what matters to UC patients when they are making these decisions. Methods Five electronic databases (PubMed, Scopus, CINAHL, Medline, and Embase) were searched for relevant literature up to 15 October 2020. Qualitative, quantitative and mixed-methods studies were included in this review. Studies reporting on what was important to UC patients (over 16 years of age) when they make treatment decisions were included. The Mixed Methods Appraisal Tool was used to assess the quality of the papers. Thematic analysis was used to analyse the data. Results The searches identified 6,917 papers and a final 19 (eight quantitative, seven qualitative, four mixed methods) papers were included. All studies were published since 2007 and included a total of 3,328 participants from nine countries. Five overarching themes (and their associated 20 sub-themes) were generated to describe the factors reported as important to UC patients in making treatment decisions. These were: 1. Information provision (information content, knowledge about their illness, quality of information); 2. Impact of the treatment upon daily life (controlling physical symptoms, quality of life); 3. Levels of risk (trade-off, high risk, concern and worry); 4. Burden of treatment (the need to see benefits of medication, route and size of medication, side effects, dosing frequency, costs, effort of being the patient, adherence to medication, surgery concerns, timing of surgery); and 5. Patient-clinician relationship (shared decision-making, communication, mismatch between what clinicians and patients consider to be important). Conclusion Communication between patients and their IBD teams should take into account the range of factors that influence their treatment decision making. Decision support interventions that incorporate such factors may better support the patient-clinician relationship and improve knowledge of treatment options and how these impact on what matters to them. Future studies are needed to determine which factors identified in this review are dominant.

scholarly journals Housing with support for older people: a mixed-methods systematic review protocol

2020 ◽  
Vol 3 ◽  
pp. 64
Author(s):  
Camille Coyle ◽  
Sarah Buggy ◽  
Olivia Cagney ◽  
Louise Farragher ◽  
Caitriona Lee ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Mixed Methods ◽  
Older People ◽  
Grey Literature ◽  
Qualitative And Quantitative ◽  
Ovid Medline ◽  
The Impact ◽  
People’S Perceptions

Background: The implementation of housing with support is rapidly expanding, particularly as life expectancy is increasing throughout the world. This expansion is likely to intensify in the context of coronavirus disease 2019 (COVID-19), which has revealed the risks of relying primarily on nursing homes. This mixed-methods systematic review aims to: 1) explore older people’s perceptions and experiences of housing with support and 2) examine the impact of providing housing with support for older people on their quality of life. Methods: The databases Ovid Medline, Ovid Social Policy & Practice, EBSCO CINAHL, and EBSCO SOCIndex will be searched, and grey literature will also be identified. Quality assessment will be carried out using Joanna Briggs Institute’s Critical Appraisal Checklist for Qualitative Research as well as a tool from the National Institutes of Health for observational cohort studies. This review will employ convergent parallel design; as such, qualitative and quantitative findings will be synthesised separately in the initial stage of analysis. The results from the qualitative and quantitative syntheses will then be integrated in the final stage of the analysis. Conclusion: This systematic review will synthesise the evidence regarding older people’s perceptions and experiences of housing with support and the impact of providing housing with support for older people on their quality of life.

scholarly journals Weight Management in Young Adults: Systematic Review of Electronic Health Intervention Components and Outcomes (Preprint)

2018 ◽  
Author(s):  
Taylor Jade Willmott ◽  
Bo Pang ◽  
Sharyn Rundle-Thiele ◽  
Abi Badejo
Keyword(s):  
Systematic Review ◽  
Young Adults ◽  
Weight Management ◽  
Assessment Tool ◽  
Narrative Synthesis ◽  
Quality Assessment Tool ◽  
Management Interventions ◽  
What Works ◽  
Ehealth Intervention

BACKGROUND Young adulthood is a vulnerable period for unhealthy lifestyle adoption and excess weight gain. Scant attention has been focused on developing and evaluating effective weight gain prevention strategies for this age group. Electronic health (eHealth) offers potential as a cost-effective means of delivering convenient, individually-tailored, and contextually-meaningful interventions at scale. OBJECTIVE The primary aim of this systematic review was to locate and synthesize the evidence on eHealth weight management interventions targeting young adults, with a particular focus on (eHealth) intervention components and outcomes. METHODS A systematic review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. The search strategy was executed across the following electronic databases: Cumulative Index to Nursing and Allied Health Literature, Cochrane Library, EBSCO, EMBASE, Emerald, Education Resources Information Center, Medical Literature Analysis and Retrieval System Online, Ovid, ProQuest, PsycINFO, PubMed, Science Direct, Scopus, and Web of Science. Furthermore, 2 reviewers independently assessed records for eligibility: peer-reviewed, published in English, and report evaluations of eHealth weight management interventions targeting healthy young adults (aged 18-35 years). Data were then extracted from studies that met the criteria for inclusion. The methodological quality of studies was independently assessed by 2 reviewers using the Effective Public Health Practice Project’s (EPHPP) quality assessment tool. A comprehensive narrative evidence synthesis was then completed. RESULTS Out of the 1301 studies assessed for eligibility, 24 met the criteria for inclusion. According to the EPHPP quality assessment tool, overall, 19 studies were as rated weak, 5 as moderate, and none as strong. The narrative synthesis of intervention outcomes found 8 studies reported positive weight-related outcomes, 4 reported mixed outcomes, and 12 did not report any significant changes in weight-related outcomes. The narrative synthesis of (eHealth) intervention components led to 3 levels of classification. A total of 14 studies were classified as Web-based, 3 as mobile-based, and 7 as multicomponent interventions. Following the narrative synthesis, 5 key strategies were thematically identified: self-regulation (goal setting and self-monitoring), tailored or personalized feedback, contact with an interventionist, social support, and behavioral prompts (nudges and reminders) and booster messages. CONCLUSIONS Findings highlight the limited evidence base for eHealth weight management interventions targeting young adults. The complex nature of weight management presents an ongoing challenge for interventionists to identify what works, for whom, how, and when. The quality of the evidence in this review was generally assessed as weak; however, assessment tools such as the EPHPP are principally concerned with what should be and this is seldom equivalent to what works. Thus, while sampling, study design and retention rates will remain key determining factors of reliability and validity, further research attention directed toward the development of guiding tools for community trials is warranted.

scholarly journals DANCE AND MOVEMENT THERAPY: A MIXED-METHODS SYSTEMATIC REVIEW

2020 ◽  
Vol 7 ◽  
pp. 215
Author(s):  
Marta Zande ◽  
Sanita Šuriņa
Keyword(s):  
Systematic Review ◽  
Mixed Methods ◽  
Social Interactions ◽  
Methodological Quality ◽  
Meta Analysis ◽  
Movement Therapy ◽  
Control Group ◽  
Emotional Component ◽  
Therapy Sessions

Changes caused by aging manifest themselves in physical, cognitive, emotional and social areas. Dance and movement therapy ensures that it is possible to work with a client in all four areas – promote physical activity, stimulate cognitive functions, activate emotional component and encourage social interactions. The aim of this research was to create a mixed methods systematic review on dance and movement therapy (DMT) for seniors, to assess the methodological quality of included studies, analyse structural and content indicators of applied DMT interventions, their effect and experience of seniors gained during dance and movement therapy sessions. Findings suggest that the methodological quality of studies varies from high to low. Data acquired by meta-analysis indicates a statistically significant reduction of depression scores for research (DMT) group in comparison to control group (95% CI: -3.74 to -2.52, total effect Z = 10.05 (P < 0.00001)). Qualitative data shows changes in all four areas as well as provides dance and movement therapists with a framework for different client groups such as individuals with depression, Parkinson’s disease, etc. Further research on seniors’ experiences is needed.  

Sign in / Sign up

Export Citation Format

Share Document