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Understanding the factors that influence the quality of paid disability support for adults with acquired neurological disability and complex needs: a scoping review protocol.

ABSTRACT: INTRODUCTION:Adults with disability as the result of an acquired neurological disorder often have varying and complex support needs. Consequently, adults with complex needs often require paid support to enable them to exercise choice and control and participate fully and effectively in society. Given support is so critical for this population, this scoping review aims to further understand the factors that influence the quality of paid disability support for adults with acquired neurological disability and complex needs. METHODS AND ANALYSIS:The methodology proposed by Arksey and O'Malley, with the modifications recommended by Levac and O'Brien and the Preferred Reporting Items for Systematic Reviews and Meta-Analysis: extension for Scoping Reviews will be used. Systematic and comprehensive electronic database searches will be conducted in MEDLINE, CINAHL, PsycINFO, Scopus and Embase. The review will follow a six-stage framework including (1) identifying the research question/s, (2) identifying the relevant studies, with (3) study selection and (4) charting of data by two independent coders, (5) collating, summarising and reporting data and (6) expert consultation which will be sought from people with lived experience, as well as clinical and academic experts. Work on this scoping review began in June 2019 and will be completed by June 2020. ETHICS AND DISSEMINATION:Ethical approval will not be required to conduct the scoping review. However, the consultation with people with lived experience will be conducted via codesign workshops. The codesign workshops have received ethical approval from La Trobe University Ethics Committee (reference number: HEC19232). It is intended that review findings will be made available to relevant stakeholders through a peer-reviewed publication, conference presentations and workshops.

SUBMITTER: Topping M

PROVIDER: S-EPMC6936997 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BACKGROUND:The number of older people with unmet care and support needs is increasing substantially due to the challenges facing the formal and informal care system in the United Kingdom. Addressing these unmet needs is becoming one of the urgent public health priorities. In order to develop effective solutions to address some of these needs, it is important first to understand the care and support needs of older people. METHODS:A scoping review was conducted, using the Arksey and O'Malley original and enhanced framework, to understand the care and support needs of older people, focusing on those living at home with chronic conditions in the UK. The search was conducted using five electronic data bases, grey literature and reference list checks. The WHO International Classification of Functioning, Disability and Health (ICF) framework was used to analyse and categorise the literature findings. RESULTS:Forty studies were included in the final analysis- 32 from academic literature and 8 from grey literature. The review highlighted that older adults faced a range of physical, social and psychological challenges due to living with chronic conditions and required care and support in three main areas: 1) social activities and relationships; 2) psychological health; and 3) activities related to mobility, self-care and domestic life. The review also highlighted that many older people demonstrated a desire to cope with their illness and maintain independence, however, environmental factors interfered with these efforts including: 1) lack of professional advice on self-care strategies; 2) poor communication and coordination of services; and 3) lack of information on services such as care pathways. A gap in the knowledge was also identified about the care and support needs of two groups within the older population: 1) older workers; and 2) older carers. CONCLUSIONS:The review highlighted that older people living with chronic conditions have unmet care needs related to their physical and psychological health, social life, as well as the environment in which they live and interact. Findings of this review also emphasized the importance of developing care models and support services based around the needs of older people.

Project description:ObjectiveThis scoping review explores the characteristics of a meaningful life appraised by adults living with an acquired neurological impairment.IntroductionLimitations in function, activity or participation following a neurological injury or disease imposes comprehensive changes on the every-day life of the affected person and close relatives. Including patients' perception of a meaningful life is pivotal to facilitate motivation and individualize rehabilitation efforts to address the patients' wishes, hopes, needs, and preferences. Surprisingly, only little research has been devoted to illuminating what a meaningful life is from the impaired person's perspective. Hence, a scoping review of existing knowledge is needed to facilitate person-centered high-quality rehabilitation and research initiatives.Inclusion criteriaAll studies, published in English or Scandinavian languages describing a meaningful life as experienced by adult persons with neurological impairment were included. No search date range filter was selected.MethodsThis review followed the Joanna Briggs Institute (JBI) methodology for scoping reviews according to a published protocol. A three-step search strategy was conducted in the databases PubMed, Cinahl, PsycINFO and Embase. At least two independent researchers conducted inclusions and exclusions, data extraction, and analyses. Covidence software was used to manage the information.FindingsWe identified 307 studies. Of these, 20 were included and quality assessed. Findings are reported in accordance with the PRISMA- SCR checklist and descriptively presented mapped in three main domains and 10 ten sub-domains.ConclusionCurrent literature conveys no clear definition or perception of what a meaningful life is. However, across the 20 included studies, the following main characteristics were stepped forward as particularly significant for adults living with an acquired neurological impairment in regard to achieving a meaningful life: i) to be part of meaningful relationships and meaningful activities; ii) to become confident with one's perceived identity.

Project description:Although essential for providing optimal adolescent patient support, knowledge of the impact of Marfan syndrome in adolescence is limited. To explore adolescents' perceived impact of Marfan syndrome on (physical) functioning (activities, participation), disability (limitations, restrictions), contextual factors and support needs, we interviewed 19 adolescents with Marfan syndrome. Audio-recordings were transcribed, coded and analysed using thematic analysis. Identified themes were "difficulties in keeping up with peers" and "being and feeling different from peers". Furthermore, an adolescent Marfan syndrome-specific International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) model derived from the data describing the adolescent perceived impact of Marfan syndrome on functioning, disability and its contextual factors. Adolescents perceived problems in keeping up with peers in school, sports, leisure and friendships/relationships, and they could not meet work requirements. Moreover, participants perceived to differ from peers due to their appearance and disability. Contextual factors: coping with Marfan syndrome, self-esteem/image, knowledge about Marfan syndrome, support from family/friends/teachers, ability to express needs and peer-group acceptation acted individually as barrier or facilitator for identified themes.Conclusion: Adolescents with Marfan syndrome perceived limitations and restrictions in (physical) functioning. They perceived problems in keeping up with peers and perceived to differ from peers due to their appearance and disability. This warrants awareness and tailored physical, psychosocial, educational and environmental support programmes to improve (physical) functioning and empowerment of adolescents with Marfan syndrome.What is known:• Marfan syndrome is a hereditary connective tissue disorder.• Marfan syndrome affects multiple systems.What is new:• Adolescents with Marfan syndrome perceive (1) problems in keeping up with peers in school, sports, leisure, friendships/relationships and work (2) to differ from peers due to their appearance and disability.• An adolescent Marfan syndrome-specific International Classification of Functioning, Disability and Health for Children and Youth model derived from the data describing the adolescent perceived impact of Marfan syndrome on functioning, disability and contextual factors.

Project description:BackgroundIntensive care survivors suffer chronic and potentially life-changing physical, psychosocial and cognitive sequelae, and supporting recovery is an international priority. As survivors' transition from the intensive care unit to home, their support needs develop and change.MethodsIn this scoping review, we categorised patients' support needs using House's Social Support Needs framework (informational, emotional, instrumental, appraisal) and mapped these against the Timing it Right framework reflecting the patient's transition from intensive care (event/diagnosis) to ward (stabilisation/preparation) and discharge home (implementation/adaptation). We searched electronic databases from 2000 to 2017 for qualitative research studies reporting adult critical care survivors' experiences of care. Two reviewers independently screened, extracted and coded data. Data were analysed using a thematic framework approach.ResultsFrom 3035 references, we included 32 studies involving 702 patients. Studies were conducted in UK and Europe (n = 17, 53%), Canada and the USA (n = 6, 19%), Australasia (n = 6, 19%), Hong Kong (n = 1, 3%), Jordan (n = 1, 3%) and multi-country (n = 1, 3%). Across the recovery trajectory, informational, emotional, instrumental, appraisal and spiritual support needs were evident, and the nature and intensity of need differed when mapped against the Timing it Right framework. Informational needs changed from needing basic facts about admission, to detail about progress and treatments and coping with long-term sequelae. The nature of emotional needs changed from needing to cope with confusion, anxiety and comfort, to a need for security and family presence, coping with flashbacks, and needing counselling and community support. Early instrumental needs ranged from managing sleep, fatigue, pain and needing nursing care and transitioned to needing physical and cognitive ability support, strength training and personal hygiene; and at home, regaining independence, strength and return to work. Appraisal needs related to obtaining feedback on progress, and after discharge, needing reassurance from others who had been through the ICU experience.ConclusionsThis review is the first to identify the change in social support needs among intensive care survivors as they transition from intensive care to the home environment. An understanding of needs at different transition periods would help inform health service provision and support for survivors.

Project description:IntroductionMāori (the Indigenous peoples of New Zealand) are disproportionately represented in cardiovascular disease (CVD) prevalence, morbidity and mortality rates, and are less likely to receive evidence-based CVD healthcare. Rural Māori experience additional barriers to treatment access, poorer health outcomes and a more significant burden of CVD risk factors compared with non-Māori and Māori living in urban areas. Importantly, these inequities are similarly experienced by Indigenous peoples in other nations impacted by colonisation. Given the scarcity of available literature, we are conducting a scoping review of literature exploring barriers and facilitators in accessing quality CVD healthcare for rural Māori and other Indigenous peoples in nations impacted by colonisation.Methods and analysisA scoping review will be conducted to identify and map the extent of research available and identify any gaps in the literature. This review will be underpinned by Kaupapa Māori Research methodology and will be conducted using Arksey and O'Malley's (2005) methodological framework. A database search of MEDLINE (OVID), PubMed, Embase, SCOPUS, CINAHL Plus, Australia/New Zealand Reference Centre and NZResearch.org will be used to explore empirical research literature. A grey literature search will also be conducted. Two authors will independently review and screen search results in an iterative manner. The New Zealand Ministry of Health Te Tiriti o Waitangi (Treaty of Waitangi) Framework principles will be used as a framework to summarise and construct a narrative of existing literature. Existing literature will also be appraised using the CONSolIDated critERia for strengthening the reporting of health research involving Indigenous Peoples (CONSIDER) statement.Ethics and disseminationEthical approval has not been sought for this review as we are using publicly available data. We will publish this protocol and the findings of our review in an open-access peer-reviewed journal. This protocol has been registered on Open Science Framework (DOI:10.17605/osf.io/xruhy).

Project description:To provide a brief overview of the Needs and Provision Complexity Scale (NPCS) and report its first application to describe the level of 'met' and 'unmet' health/social care needs, and to estimate their costs in community-based patients with complex neurological disability.A multicentre prospective cohort analysis.Consecutive discharges to the community from the nine tertiary specialist inpatient neurorehabilitation units in London over 12 months (2010/2011).Patients responding at follow-up (n=211). Mean age 50.2(SD14) years, males:females 127/84. Diagnosis 157(74%) brain injury, 27(13%) spinal cord injury/peripheral neuropathy; 27(13%) other.The NPCS is a brief, pragmatic, directly costable instrument for measuring both an individual's needs for rehabilitation and support (NPCS-Needs) and the levels of service provided (NPCS-Gets) within a given period.The 'NPCS-Needs' was completed by the treating clinical team at discharge. Patients and/or their carers self-reported 'NPCS-Gets' after 6 months by a postal/online questionnaire supported by a follow-up telephone interview.Needs for medical/nursing care and accommodation were generally well met. Significant shortfalls in provision were identified in the subscales of Rehabilitation (paired t test: t -9.7, p<0.001, effect size (ES)=-0.85), Social support (t -5.8, p<0.001, ES=-0.48) and Equipment (t -5.6, p<0.001, ES=-0.44). Item-level analysis demonstrated that the frequency of Personal care received exceeded predicted needs (Wilcoxon z=-3.3, p<0.001). In 80% of cases, this care was provided/paid for by families. Translated into mean costs/patient/year, the estimated underspends on Rehabilitation (-£2320) and Social support (-£1790) were exceeded >3.5-fold by excess costs of Personal care (£10 313) and Accommodation (£4296).The results identify underprovision of community-based rehabilitation and support services compared with needs, which may contribute directly to excess care burden and costs to family carers. The NPCS requires further evaluation but has potential use as a simple, directly costable tool to inform both clinical decision-making and population-based service planning and delivery.

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Understanding the factors that influence the quality of paid disability support for adults with acquired neurological disability and complex needs: a scoping review protocol.

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