Dataset Information

Mapping staff perspectives towards the delivery of hospital care for children and young people with and without learning disabilities in England: a mixed methods national study.

ABSTRACT: Children and young people (CYP) with learning disabilities (LD) are a vulnerable population with increased risk of abuse and accidental injury and whose parents have reported concerns about the quality, safety and accessibility of their hospital care. The Care Quality Commission's (CQC) view of best practice for this group of patients includes: access to senior LD nurse provision; a clearly visible flagging system for identifying them; the use of hospital passports; and defined communication strategies (Glasper, Comp Child Adolesc Nurs 40:63-67, 2017). What remains unclear is whether these recommendations are being applied and if so, what difference they are making. Furthermore, what we do not know is whether parental concerns of CYP with LD differ from parents of other children with long-term conditions. The aims of this study were to 1) describe the organisational context for healthcare delivery to CYP with LD and their families and 2) compare staff perceptions of their ability to identify the needs of CYP with and without LD and their families and provide high quality care to effectively meet these needs.Individual interviews (n?=?65) and anonymised online survey (n?=?2261) were conducted with hospital staff working with CYP in 15 children's and 9 non-children's hospitals in England. The majority of interviews were conducted over the telephone and recorded and transcribed verbatim. Health Research Authority was obtained and verbal or written consent for data collection was obtained from all interview participants.The nature and extent of organisational policies, systems and practices in place within hospitals to support the care of CYP with LD differs across England and some uncertainty exists within and across hospitals as to what is currently available and accessed. Staff perceived that those with LD were included less, valued less, and less safe than CYP without LD. They also reported having less confidence, capability and capacity to meet the needs of this population compared to those without LD.Findings indicate inequality with regards the provision of high quality hospital care to children and young people with LD that meets their needs. There is a pressing need to understand the impact this has on them and their families.The study has been registered on the NIHR CRN portfolio 20461 (Phase 1), 31336 (Phases 2-4).

SUBMITTER: Oulton K

PROVIDER: S-EPMC5865304 | biostudies-other | 2018 Mar

REPOSITORIES: biostudies-other

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Mapping staff perspectives towards the delivery of hospital care for children and young people with and without learning disabilities in England: a mixed methods national study.

Oulton Kate K Gibson Faith F Carr Lucinda L Hassiotis Angela A Jewitt Carey C Kenten Charlotte C Russell Jessica J Whiting Mark M Tuffrey-Wijne Irene I Wray Jo J

BMC health services research 20180323 1

<h4>Background</h4>Children and young people (CYP) with learning disabilities (LD) are a vulnerable population with increased risk of abuse and accidental injury and whose parents have reported concerns about the quality, safety and accessibility of their hospital care. The Care Quality Commission's (CQC) view of best practice for this group of patients includes: access to senior LD nurse provision; a clearly visible flagging system for identifying them; the use of hospital passports; and define ...[more]

PMID: 29566681

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Project description:ObjectivesTo explore stakeholders' and national organisational perspectives on companionship for women/birthing people using antenatal and intrapartum care in England during COVID-19, as part of the Achieving Safe and Personalised maternity care In Response to Epidemics (ASPIRE) COVID-19 UK study.SettingMaternity care provision in England.ParticipantsInterviews were held with 26 national governmental, professional and service-user organisation leads (July-December 2020). Other data included public-facing outputs logged from 25 maternity Trusts (September/October 2020) and data extracted from 78 documents from eight key governmental, professional and service-user organisations that informed national maternity care guidance and policy (February-December 2020).ResultsSix themes emerged: 'Postcode lottery of care' highlights variations in companionship and visiting practices between trusts/locations, 'Confusion and stress around 'rules'' relates to a lack of and variable information concerning companionship/visiting, 'Unintended consequences' concerns the negative impacts of restricted companionship or visiting on women/birthing people and staff, 'Need for flexibility' highlights concerns about applying companionship and visiting policies irrespective of need, ''Acceptable' time for support' highlights variations in when and if companionship was 'allowed' antenatally and intrapartum and 'Loss of human rights for gain in infection control' emphasises how a predominant focus on infection control was at a cost to psychological safety and human rights.ConclusionsPolicies concerning companionship and visiting have been inconsistently applied within English maternity services during the COVID-19 pandemic. In some cases, policies were not justified by the level of risk, and were applied indiscriminately regardless of need. There is an urgent need to determine how to sensitively and flexibly balance risks and benefits and optimise outcomes during the current and future crisis situations.

Project description:Many patients are admitted to hospital and are already malnourished. Gaps in practice have identified that care processes for these patients can be improved. Hospital staff, including management, needs to work towards optimizing nutrition care in hospitals to improve the prevention, detection and treatment of malnutrition. The objective of this study was to understand how staff members perceived and described the necessary ingredients to support change efforts required to improve nutrition care in their hospital.A qualitative study was conducted using purposive sampling techniques to recruit participants for focus groups (FG) (n = 11) and key informant interviews (n = 40) with a variety of hospital staff and management. Discussions based on a semi-structured schedule were conducted at five diverse hospitals from four provinces in Canada as part of the More-2-Eat implementation project. One researcher conducted 2-day site visits over a two-month period to complete all interviews and FGs. Interviews were transcribed verbatim while key points and quotes were taken from FGs. Transcripts were coded line-by-line with initial thematic analysis completed by the primary author. Other authors (n = 3) confirmed the themes by reviewing a subset of transcripts and the draft themes. Themes were then refined and further detailed. Member checking of site summaries was completed with site champions.Participants (n = 133) included nurses, physicians, food service workers, dietitians, and hospital management, among others. Discussion regarding ways to improve nutrition care in each specific site facilitated the thought process during FG and interviews. Five main themes were identified: building a reason to change; involving relevant people in the change process; embedding change into current practice; accounting for climate; and building strong relationships within the hospital team.Hospital staff need a reason to change their nutrition care practices and a significant change driver is perceived and experienced benefit to the patient. Participants described key ingredients to support successful change and specifically engaging the interdisciplinary team to effect sustainable improvements in nutrition care.Retrospectively registered ClinicalTrials.gov Identifier: NCT02800304 , June 7, 2016.

Dataset Information

Mapping staff perspectives towards the delivery of hospital care for children and young people with and without learning disabilities in England: a mixed methods national study.

Publications

Mapping staff perspectives towards the delivery of hospital care for children and young people with and without learning disabilities in England: a mixed methods national study.

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