Codesigning a social prescribing pathway to address the social determinant of health concerns of children with cerebral palsy and their families in Australia: a protocol for a mixed-methods formative research study.

INTRODUCTION: Social determinants of health (SDH) are contributors to health inequities experienced by some children with cerebral palsy and pose barriers to families engaging with complex and fragmented healthcare systems. There is emerging evidence to support 'social prescribing' interventions that systematically identify SDH concerns and refer patients to non-medical social care support and services to address their needs. To date, social prescribing has not been trialled specifically for children with neurodevelopmental disabilities, including cerebral palsy, in Australia. This study aims to codesign a social prescribing programme to address SDH concerns of children with cerebral palsy and their families who attend one of the three tertiary paediatric rehabilitation services in New South Wales, Australia. METHODS AND ANALYSIS: This is a qualitative multi-site study conducted at the three NSW paediatric hospitals' rehabilitation departments using a codesign approach. Children aged 12-18 years with cerebral palsy, parents/caregivers of children (aged 0-18 years) with cerebral palsy, and clinicians will be involved in all stages to codesign the social prescribing programme. The study will consist of three components: (1) 'what we need', (2) 'creating the pathways' and (3) 'finalising and sign off'. This project is overseen by two advisory groups: one group of young adults with cerebral palsy and one group of parents of young people with cerebral palsy. The study will be guided by the biopsychosocial ecological framework, and analysis will follow Braun and Clark's thematic approach. ETHICS AND DISSEMINATION: The study protocol was approved by the human research ethics committee of the Sydney Children's Hospitals Network. This codesign study will inform a future pilot study of feasibility and acceptability, then if indicated, a pilot clinical trial of efficacy. We will collaborate with all project stakeholders to disseminate findings and undertake further research to build sustainable and scalable models of care. TRIAL REGISTRATION NUMBER: ACTRN12622001459718.

Evaluating clinician experience in value-based health care: the development and validation of the Clinician Experience Measure (CEM).

BACKGROUND: Clinicians' experiences of providing care constitute an important outcome for evaluating care from a value-based healthcare perspective. Yet no currently available instruments have been designed and validated for assessing clinicians' experiences. This research sought to address this important gap by developing and validating a novel instrument in a public health system in Australia. METHODS: A multi-method project was conducted using co-design with 12 clinician leaders from a range of NSW Health Local Health Districts to develop the Clinician Experience Measure (CEM). Validity and reliability analyses were conducted in two stages, first assessing face and content validity with a pool of 25 clinicians and then using psychometric analysis with data from 433 clinicians, including nurses, doctors and allied health and representing all districts within one jurisdiction in Australia. RESULTS: Data gathered from 25 clinicians via the face and content validity process indicated that the initial 31-items were relevant to the range of staff employed in the NSW state health system, with minor edits made to the survey layout and wording within two items. Psychometric analysis led to a rationalised 18-item final instrument, comprising four domains: psychological safety (4-items); quality of care (5-items); clinician engagement (4-items) and interprofessional collaboration (5-items). The 18-item four-factor model produced a good fit to the data and high levels of reliability, with factor loadings ranging from .62 to .94, with Cronbach's alpha (range: .83 to .96) and composite reliability (range: .85 to .97). CONCLUSIONS: The CEM is an instrument to capture clinicians' experiences of providing care across a health system. The CEM provides a useful tool for healthcare leaders and policy makers to benchmark and assess the impact of value-based care initiatives and direct change efforts.

Reported clinical incidents of children with intellectual disability: A qualitative analysis.

AIM: To qualitatively explore reported clinical incidents of children with intellectual disability aged 0 to 18 years. METHOD: A secondary qualitative evaluation using latent content analysis was used on retrospective hospital incident management reporting data (1st January-31st December 2017) on 1367 admissions for 1018 randomly selected patients admitted to two tertiary children's hospitals in New South Wales, Australia. Sex and age at admission in children with and without intellectual disability: 83 (43.7%) versus 507 (43.1%) females and 107 (56.3%) versus 670 (56.9%) males, p=0.875; median age 3 years (0-18y) versus 4 years (0-18y), p=0.122. Of these, 44 patient safety incident reports for children with intellectual disability (sex, SD, and range) and 167 incident reports for children without intellectual disability (sex, SD, and range) were found and analysed. RESULTS: Ten themes were synthesized from the data and represented the groups with and without intellectual disability. Children with intellectual disability had a significantly higher proportion of care issues identified by their parents. They also had higher rates of multiple reported clinical incidents per admission compared to children without intellectual disability. INTERPRETATION: Mechanisms to advocate and raise patient safety issues for children with intellectual disability are needed. Partnerships with parents and training of staff in reporting clinical incidents for this population would enhance the embedding of reasonable adaptations into incident management systems for ongoing monitoring and improvement. WHAT THIS PAPER ADDS: Children with intellectual disability experienced multiple patient safety incidents per admission compared to children without intellectual disability. Children with intellectual disability had significantly increased rates of parent-identified incidents. Issues with medication, communication, delays in diagnosis and treatment, and identification of deterioration were noted.

'Smiles and laughter and all those really great things': Nurses' perceptions of good experiences of care for inpatient children and young people with intellectual disability.

AIM: To understand what constitutes a good experience of care for inpatient children and young people with intellectual disability as perceived by nursing staff. DESIGN: Interpretive qualitative study. METHODS: Focus groups with clinical nursing staff from speciality neurological/neurosurgical and adolescent medicine wards across two specialist tertiary children's hospitals in Australia were conducted between March and May 2021. Data analysis followed interpretative analysis methods to develop themes and codes which were mapped to a conceptual model of safe care. RESULTS: Six focus groups with 29 nurses of varying experience levels were conducted over 3 months. Themes and codes were mapped to the six themes of the conceptual model: use rapport, know the child, negotiate roles, shared learning, build trust and relationships, and past experiences. The analysis revealed two new themes that extended the conceptual model to include; the unique role of a paediatric nurse, and joy and job satisfaction, with a third contextual theme, impacts of COVID-19 pandemic restrictions. With the perspectives of paediatric nurses incorporated into the model we have enhanced our model of safe care specifically for inpatient paediatric nursing care of children and young people with intellectual disability. CONCLUSION: Including perceptions of paediatric nurses confirmed the position of the child with intellectual disability being at the centre of safe care, where care is delivered as a partnership between nursing staff, child or young person and their parents/family and the hospital systems and processes. IMPACT: The enhanced model offers a specialized framework for clinical staff and health managers to optimize the delivery of safe care for children and young people with intellectual disability in hospital.

Unscheduled healthcare for children with intellectual disabilities: A systematic scoping review.

BACKGROUND: The provision of unscheduled healthcare for children with intellectual disability is less researched than that focused on hospital settings or for adult services. The aim of the scoping review was to map the evidence base in this area and identify areas for future study. METHOD: A five-stage scoping review framework was adopted. CINAHL, PubMed, SCOPUS, PsycINFO, Embase, ProQuest Dissertation & Theses and Google Scholar were searched. Studies published in English after 1/1/2000 were considered eligible for inclusion. RESULTS: A total of 3158 titles and abstracts were screened, 137 full-text articles were reviewed, and 25 papers met the inclusion criteria. Descriptive themes focused on inequities, needs and experiences of families', poor GP training, and limitations of existing evidence. CONCLUSION: Describing trends in healthcare utilisation by this population is valuable for monitoring quality of healthcare, however, addressing observed inequities will require approaches that recognise specific issues within the health system that result in inequities.

Inequities in quality and safety outcomes for hospitalized children with intellectual disability.

AIM: To investigate if there are inequities in quality and safety outcomes for children with intellectual disability admitted to two tertiary paediatric hospitals. METHOD: A cross-sectional study of 1367 admissions for 1018 randomly selected patients admitted for more than 23 hours to one of two tertiary children's hospitals in Sydney, Australia (1st January-31st December 2017). Electronic medical records were manually interrogated to identify children with intellectual disability (including developmental delay). Data extracted included patient demographics, length of stay, number of admissions, and reported clinical incidents. RESULTS: In total, 12.3% (n=125) of children admitted during the study period had intellectual disability, which represented 13.9% (n=190) of admissions. Sex and age at admission in children with and without intellectual disability were similar: 83 (43.7%) vs 507 (43.1%) females and 107 (56.3%) vs 670 (56.9%) males, p=0.875; median age 3 years (0-18y) vs 4 years (0-18y), p=0.122. Children with intellectual disability had significantly greater median length of stay (100.5h vs 79h, p<0.001) and cost of admission (A$11 596.38 vs A$8497.96) than their peers (p=0.001). Children with intellectual disability had more admissions with at least one incident compared to children without intellectual disability (14.7% vs 9.7%); this was not statistically significant (p=0.06). INTERPRETATION: Children with intellectual disability experience inequitable quality and safety outcomes in hospital. Engaging children and families in clinical incident reporting may enhance understanding of safety risks for children with intellectual disability in hospital.

What Are the Psycho-Social and Information Needs of Adolescents and Young Adults Cancer Care Consumers with Intellectual Disability? A Systematic Review of Evidence with Recommendations for Future Research and Practice.

People with intellectual disability have unmet health needs and experience health inequalities. There is limited literature regarding cancer care for children, adolescents, and young adults (AYA) with intellectual disability despite rising cancer incidence rates in this population. This systematic review aimed to identify the psycho-social and information support needs of AYA cancer care consumers with intellectual disability to generate recommendations for future research and cancer care service delivery enhancement. We searched eight databases yielding 798 articles. Following abstract and full-text review, we identified 12 articles meeting our inclusion criteria. Our three themes related to communication and accessible information; supports and system navigation, cancer service provider training, and reasonable adjustments. There was a lack of user-friendly, accessible information about cancer and screening programs available. Both paid and family carers are critical in accessing cancer supports, services, and screening programs for AYA with intellectual disability. Ongoing training should be provided to healthcare professionals regarding the importance of care screening for AYAs with intellectual disability. This review recommends that AYA with intellectual disability and their family carers be involved in developing tailored cancer services. This should focus on enabling inclusive screening programs, accessible consent, and challenging the enduring paternalism of support services via training and appropriate communication tools.

Codesigning patient experience measures for and with children and young people with intellectual disability: a study protocol.

INTRODUCTION: Children and young people with intellectual disability represent one of the most vulnerable groups in healthcare, yet they remain under-represented in projects to design, develop and/or improve healthcare service delivery. Increasingly, healthcare services are using various codesign and coproduction methodologies to engage children and young people in service delivery improvements. METHODS AND ANALYSIS: This study employs an inclusive approach to the study design and execution, including two co-researchers who are young people with intellectual disability on the project team. We will follow an adapted experience-based co-design methodology to enable children and young people with intellectual disability to participate fully in the co-design of a prototype tool for eliciting patient experience data from children and young people with intellectual disability in hospital. ETHICS AND DISSEMINATION: This study was granted ethical approval on 1 February 2021 by the Sydney Children's Hospitals Network Human Research Ethics Committee, reference number 2020/ETH02898. Dissemination plan includes publications, doctoral thesis chapter, educational videos. A summary of findings will be shared with all participants and presented at the organisation quality and safety committee.

Clinicians' experience of providing care: a rapid review.

BACKGROUND: Health care services internationally are refocussing care delivery towards patient centred, integrated care that utilises effective, efficient and innovative models of care to optimise patient outcomes and system sustainability. Whilst significant efforts have been made to examine and enhance patient experience, to date little has progressed in relation to provider experience. This review aims to explore this knowledge gap by capturing evidence of clinician experience, and how this experience is defined and measured in the context of health system change and innovation. METHODS: A rapid review of published and grey literature review was conducted utilising a rapid evidence assessment methodology. Seventy-nine studies retrieved from the literature were included in the review. Fourteen articles were identified from the grey literature search and one article obtained via hand searching. In total, 94 articles were included in the review. This study was commissioned by and co-designed with the New South Wales, Ministry of Health. RESULTS: Clinician experience of delivering health care is inconsistently defined in the literature, with identified articles lacking clarity regarding distinctions between experience, engagement and work-related outcomes such as job satisfaction. Clinician experience was commonly explored using qualitative research that focused on experiences of discrete health care activities or events in which a change was occurring. Such research enabled exploration of complex experiences. In these contexts, clinician experience was captured in terms of self-reported information that clinicians provided about the health care activity or event, their perceptions of its value, the lived impacts they experienced, and the specific behaviours they displayed in relation to the activity or event. Moreover, clinician's experience has been identified to have a paucity of measurement tools. CONCLUSION: Literature to date has not examined clinician experience in a holistic sense. In order to achieve the goals identified in relation to value-based care, further work is needed to conceptualise clinician experience and understand the nature of measurement tools required to assess this. In health system application, a broader 'clinician pulse' style assessment may be valuable to understand the experience of clinical work on a continuum rather than in the context of episodes of change/care.

Creating equitable healthcare quality and safety for children with intellectual disability in hospital.

Children with intellectual disability are susceptible to poor experiences of care and treatment outcomes, and this may compound existing health inequities. Evidence to date indicates three priority areas that must be addressed in order to reduce these inequities in the safety and quality of care for children with intellectual disability. Firstly, we need reliable methods to identify children with intellectual disability so that healthcare organizations understand their needs. Secondly, we need to develop quality metrics that can assess care quality and unwarranted care variation for children with intellectual disability in hospital. Finally, for a comprehensive understanding of the safety and quality of care for these children, and how to improve, it is critical that healthcare organizations partner with parents/carers and enable children with intellectual disability to voice their experiences of care. Children with intellectual disability have higher healthcare utilization than their peers; yet, their voice is rarely sought to optimize the safety and quality of their healthcare experience. Patient experience narratives enhance our understanding of the genesis of adverse events. By addressing these priorities, children with intellectual disability will be identified, and health services will measure and understand the problematic and beneficial variations in care delivery and can then effectively partner with children and their parents/carers to address the inequities in care quality and create safer healthcare.

Partnerships for safe care: A meta-narrative of the experience for the parent of a child with Intellectual Disability in hospital.

OBJECTIVE: To systematically identify and synthesize peer-reviewed qualitative evidence of the parental experience of hospitalization with a child with Intellectual Disability. SEARCH STRATEGY: Key words, synonyms and MeSH subject headings that related to the three key concepts of parental experience, children with Intellectual Disability and hospital settings were applied to six electronic databases: Medline, CINAHL, Embase, PsycINFO, Scopus and Web of Science. Titles and abstracts of publications between January 2000 and February 2019 were screened for relevance. INCLUSION CRITERIA: Empirical qualitative research involved participants aged 0-18 years, involved children with Intellectual Disability, involved participants hospitalized as an in-patient and involved participants focused on parent perspective. DATA EXTRACTION AND SYNTHESIS: Data were extracted and synthesized using a meta-narrative approach. RESULTS: Eleven publications met the inclusion criteria. Data synthesis revealed three research traditions contributing to this meta-narrative: Paediatric Nursing Practice, Intellectual Disability Healthcare and Patient Experience. A total of five themes were identified: (a) being more than a parent, (b) importance of role negotiation, (c) building trust and relationships, (d) the cumulative effect of previous experiences of hospitalization and (e) knowing the child as an individual. DISCUSSION AND CONCLUSION: This review presents a working model for professional-parent partnership for the safe care of children with Intellectual Disability in hospital. Shifting paediatric healthcare to whole of hospital/multidisciplinary models of care that centre on the child will necessitate partnerships with the parent to identify and manage the needs of the child with Intellectual Disability, in order to achieve safe and equitable care for these children.

Patient safety vulnerabilities for children with intellectual disability in hospital: a systematic review and narrative synthesis.

PURPOSE: Adults and children with intellectual disability (ID) are vulnerable to preventable morbidity and mortality due to poor quality healthcare. While poor quality care has been commonly identified among children with ID, evidence of the patient safety outcomes for this group is lacking and therefore explored in this review. DATA SOURCES: Systematic searches of six electronic bibliographic research databases were undertaken from January 2000 to October 2017, in addition to hand searching. STUDY SELECTION: Keywords, subject headings and MeSH terms relating to the experience of iatrogenic harm during hospitalisation for children with ID were used. Potentially relevant articles were screened against the eligibility criteria. Non-English language papers were excluded. DATA EXTRACTION: Data regarding: author(s), publication year, country, sample, health service setting, study design, primary focus and main findings related to measures of quality and safety performance were extracted. RESULTS OF DATA SYNTHESIS: Sixteen studies met the inclusion criteria, with three themes emerging: the impact of the assumptions of healthcare workers (HCWs) about the child with ID on care quality and associated safety outcomes; reliance on parental presence during hospitalisation as a protective factor; and the need for HCWs to possess comprehensive understanding of the IDs experienced by children in their care, to scientifically deduce how hospitalisation may compromise their safety, care quality and treatment outcomes. CONCLUSION: When HCWs understand and are responsive to children's individual needs and their ID, they are better placed to adjust care delivery processes to improve care quality and safety during hospitalisation for children with ID.