ORCID Profile
0000-0003-3768-2132
Current Organisations
Brunel University London
,
Royal College of Surgeons in Ireland
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Publisher: MDPI AG
Date: 18-08-2022
DOI: 10.3390/JCM11164847
Publisher: Wiley
Date: 08-04-2022
DOI: 10.1111/DMCN.15233
Abstract: To describe use of health services, unmet needs relating to health services, and identify factors associated with service use among adults with cerebral palsy (CP) in Ireland. Data relating to demographics, secondary diagnoses, current use of health services and assistive devices, and unmet needs for both were obtained on adults with CP from the National Physical and Sensory Disability Database. Logistic regression was used to identify factors associated with service use. A total of 1268 adults with CP were included in this study. Over half were male (56%) and 78% lived with parents, siblings, or other family relatives. Physiotherapy, occupational therapy, and orthotics rosthetic services were the most commonly used services, used by 57%, 48%, and 35% of the s le respectively. Unmet needs were highest for physiotherapy (23%) and occupational therapy services (13%). Age, sex, living arrangements, and wheelchair use were frequently associated with current service use. Adults with CP used a wide range of health services and unmet needs were reported for all services. The findings highlight a need for planning and development of services to meet their needs, regardless of their age, mobility level, or living arrangements. Adults with cerebral palsy (CP) in Ireland used a wide range of therapeutic, respite, personal assistance, and support services. Unmet needs were highest for physiotherapy and occupational therapy services. Adults aged 25 years and above were less likely to use therapy services compared with younger adults. Adults living with parents, siblings, or family relatives were less likely to use personal assistance and physiotherapy services.
Publisher: Wiley
Date: 27-10-2022
DOI: 10.1111/DMCN.15097
Abstract: To determine the proportion of adults with cerebral palsy (CP) using health services and frequency of use, and to explore experiences and perceptions of health services for this population. A mixed‐methods systematic review was conducted using the Joanna Briggs Institute methodology. Five databases were searched to September 2020. Observational and qualitative studies were included. Two reviewers screened titles, abstracts, and full texts extracted data and assessed the quality of included studies. Separate meta‐analyses were used to pool the proportion of adults using each service and frequency of use. A meta‐aggregation approach was used to synthesize qualitative data. Quantitative and qualitative findings were integrated using the Andersen and Newman Model of health care utilization. Fifty‐seven studies (31 quantitative, 26 qualitative) of 14 300 adults with CP were included. The proportion of adults using services ranged from 7% (95% confidence interval [CI]: 2–13%) for urologists to 84% (95% CI: 78–90%) for general practitioners. Incidence of visits ranged from 67 (95% CI: 37–123) hospital admissions to 404 (95% CI: 175–934) general practitioner visits per 100 person‐years. Qualitative themes highlighted issues regarding accessibility, caregivers’ involvement, health workers’ expertise, unmet ageing needs, transition, and health system challenges. Adults with CP used a wide range of health services but faced context‐specific challenges in accessing required care. Appropriate service delivery models for adults with CP are required. This review emphasizes a need to develop an appropriate service model for adults with CP to meet their needs.
Publisher: Informa UK Limited
Date: 04-07-2022
DOI: 10.1080/09638288.2022.2087760
Abstract: The aims of this study were to describe how and why adults with CP living in the UK and Ireland accessed and used physiotherapy services to describe the type of physiotherapy accessed and satisfaction with physiotherapy services and to examine the associations between relevant factors. A cross-sectional semi-structured online survey was employed. Participants were adults with CP aged 18 and above living in the UK and Ireland able to complete an online questionnaire in English independently or with technical or physical assistance. Data were collected from April 2019 to February 2020. Participants ( Adults with CP did not receive the physiotherapy services that they perceived they needed. There is a need to develop physiotherapy services in collaboration with people living with CP.Implications of rehabilitationAdults with cerebral palsy (CP) needed physiotherapy services, but were not receiving the physiotherapy services that they perceive they needed.Adults were not satisfied with the availability or quality of physiotherapy services received.Adults with scoliosis and mobility decline were less likely to report that they received the physiotherapy they needed.There is a need to develop physiotherapy services from a life-span perspective for adults living with CP.
Publisher: F1000 Research Ltd
Date: 28-09-2021
DOI: 10.12688/HRBOPENRES.13309.1
Abstract: Background Many adults with childhood-onset neurodisabilities, such as those with intellectual disability or cerebral palsy, report difficulties accessing the healthcare that they require when they are no longer eligible for paediatric services. Compared to the general population, this population is at greater risk of developing many ageing-related diseases and has higher rates of preventable deaths and premature mortality. Addressing unmet healthcare needs is essential to ensuring equitable access in a quality healthcare system. The aim of this systematic review is to synthesise the current available evidence related to unmet healthcare needs in adults with a range of childhood-onset neurodisabilities. Methods A systematic review of quantitative research studies of adults with a range of diagnoses that fall under the neurodisability umbrella and outcomes related to unmet healthcare needs will be undertaken. The Conducting Systematic Reviews and Meta-Analyses of Observational Studies (COSMOS-E) guidelines will be adhered to. Searches of key databases will be undertaken, and a two-phase screening process carried out by pairs of independent reviewers to select studies that meet the inclusion criteria. Data will be extracted using a purposefully designed form. Risk of bias will be assessed using the Joanna Briggs Institute Critical Appraisal Tools. If it is possible to pool prevalence data, a meta-analysis will be undertaken. Where pooling of data is not possible, a structured synthesis approach will be used, and results will be presented in tables and summarised narratively. Conclusions In recent years, there has been increased emphasis placed on promoting positive ageing and improving the healthcare experiences throughout the lifespan for people with neurodisabilities. Findings of this systematic review can inform decision-making related to healthcare for this vulnerable population and has the potential to contribute to reducing preventable deaths and premature mortality and promoting positive and healthy ageing for this group.
Publisher: Wiley
Date: 21-06-2022
DOI: 10.1111/DMCN.15317
Abstract: To assess if young people with cerebral palsy experience and health professionals provide practices that may improve transition from child to adult health services. Seventy‐five young people (31 females, 44 males mean age 18 years 5 months [standard deviation 2 years 2 months]) and/or parents and 108 health professionals completed a questionnaire describing their experience or the provision of nine transition practices. The percentage of young people reporting each practice was: appropriate parent involvement (90%) promotion of health self‐efficacy (37%) named worker who supports the transition process (36%) self‐management support for physical health (36%) self‐management support for mental health (17%) information about the transition process (24%) meeting the adult team (16%) and life skills training (16%). Post‐discharge, 10% of young people reported that their general practitioner (GP) received a discharge letter. The percentage of health professionals reporting each practice was: promotion of health self‐efficacy (73.2%) self‐management support (73.2%) information (69%) consulting the parent and young person about parent involvement (63% and 66%) discharge letter to a GP (55%) life skills training (36%) named worker (35%) meeting the adult team (30%) and senior manager (20%). Many young people did not experience practices that may improve the experience and outcomes of transition. Young people should be involved in the development and delivery of transition to ensure it meets their needs. Many young people with cerebral palsy (CP) do not receive support that may improve the experience of transition. Appropriate protocols and training for health professionals may improve the provision of transition and reduce inconsistency in care between and within organizations. Young people and their families should be involved in service design, delivery, and evaluation related to the transition to ensure it meets their needs.
Publisher: Wiley
Date: 17-10-2023
DOI: 10.1111/DMCN.15778
Publisher: Frontiers Media SA
Date: 17-08-2022
Publisher: F1000 Research Ltd
Date: 04-09-2020
DOI: 10.12688/HRBOPENRES.13095.1
Abstract: Background: The transition from child-centred to adult-oriented healthcare is a challenging time for young people with neurodisability. As the prevalence of neurodisability increases, greater numbers of young people will eventually transfer to the adult healthcare system. While there is a growing recognition of the importance of providing quality, transitional care, little is known about how to manage and optimise this process for young people with neurodisability. The objective of this scoping review is to examine and map existing literature related to the transition from child-centred to adult-oriented healthcare systems for young people with neurodisability. Methods: Systematic literature searches of OVID MEDLINE, EMBASE, PsycINFO, CINAHL, Cochrane Library and Web of Science will be conducted from inception to present. A structured iterative search of grey literature will be conducted. This review will consider all study designs examining the transition from child to adult health services in neurodisability. Two reviewers will independently screen each retrieved title and abstract and assess full-text articles against the inclusion criteria to determine eligibility. Data will be extracted and synthesised quantitatively and qualitatively. The process and reporting will follow PRISMA-ScR guidelines. Conclusion: This review will provide a broad and systematically mapped synthesis of the extent and nature of the available published and unpublished literature on transition from child-centred to adult-oriented healthcare systems in neurodisability. The results will be used to determine gaps in the current evidence base in order to prioritise areas for future research.
Publisher: BMJ
Date: 12-2020
DOI: 10.1136/BMJOPEN-2020-041425
Abstract: The transition from child to adult health services is a challenging and complex process for young people with cerebral palsy (CP). Poorly managed transition is associated with deterioration in health, increased hospitalisations and reduced quality of life. While international research identifies key practices that can improve the experience and outcomes of transition, there is a paucity of data in the Irish context. This research study aims to gain an insight into the experience of transition for young people with CP in Ireland. A convergent parallel mixed-methods design will be used to collect, analyse and interpret quantitative and qualitative data. Participants will be young people aged 16–22 years with CP, their parent(s)/carer(s) and service providers. Quantitative and qualitative data will be collected through questionnaires and interviews, respectively. Quantitative data will be reported using descriptive statistics. Where sufficient data are collected, we will examine associations between the experience of transition practices and sociodemographic and CP-related factors, respectively, using appropriate regression models. Associations between service provider characteristics and provision of key transition practices may also be explored using appropriate regression models. Qualitative data will be analysed using the Framework Method. A coding matrix based on key transitional practices identified from the literature will be used to identify convergence and ergence across study components at the integration stage. The study has been approved by the RCSI University of Medicine and Health Sciences Research Ethics Committee (REC201911010). Results will be presented to non-academic stakeholders through a variety of knowledge translation activities. Results will be published in open access, peer-reviewed journals and presented at national and international scientific conferences.
Publisher: F1000 Research Ltd
Date: 31-07-2023
DOI: 10.12688/HRBOPENRES.13741.1
Abstract: Young people with physical disability experience challenges to being physically active. To attain the health benefits of physical activity (PA) and sustain engagement, it is essential that participation is meaningful and enjoyable. This study aims to understand “what really matters” for participating in PA, from the perspectives of adolescents with physical disability. A parallel convergent mixed methods study will be undertaken, comprising a national cross-sectional quantitative assessment of PA participation (“Participation Snapshot”) and Delphi consensus study (“Delphi”). Young people (n=100) aged 13-17 years with a primary physical disability diagnosis will be invited to take part. The Participation Snapshot primary outcome is the Children’s Assessment of Participation and Enjoyment (CAPE). Contextual factors including disability diagnosis, demographics, mobility (Functional Mobility Scale), hand function (Manual Ability Classification System) and health related quality of life (Child Health Utility 9D) will also be collected. The Delphi will comprise two to four survey rounds, until consensus is reached. Round 1 (“Your Experience”) consists of a bespoke survey, designed and piloted with a public and patient involvement (PPI) panel, with open-ended questions and Likert scales inviting contributions from young people on their prior experience, barriers and facilitators, and ideas on participation in PA. Responses will be analysed using reflexive thematic analysis to construct the key themes, conceptualized under the “F-words” framework of the International Classification of Functioning, Disability and Health (ICF). These themes will be presented back to participants in subsequent rounds for selection and ranking, until consensus is achieved on the “top 10 priorities”. The project team and PPI panel will then co-design dissemination material and identify targets for dissemination to relevant stakeholder or policy groups. The findings will provide a basis for developing interventions aiming to empower, encourage and sustain future physical activity participation in a meaningful way by young people with physical disability.
Publisher: Frontiers Media SA
Date: 03-06-2022
Publisher: F1000 Research Ltd
Date: 20-09-2022
DOI: 10.12688/HRBOPENRES.13609.1
Abstract: Background : Cerebral palsy (CP) is a common cause of physical disability in childhood. The majority of children with CP survive to adulthood. Once discharged from children’s services, adults with CP find it challenging to navigate health services. The aim of this study was to pilot and refine a methodology to map services for adults with CP in Ireland. Methods: We used a multi-informant mapping methodology consisting of: 1. Defining health services 2. Identifying informants 3. Designing a survey 4. Collecting data 5. Data checking and analysis. We collected data on services from service users and service providers using an online survey. We verified data against information available online and by asking organisations to provide details about the service. Results: Fifteen service users and nine service providers completed the online survey. Data on 265 unique services at 32 organisations were provided. The most commonly provided services were physiotherapy (12%) and occupational therapy (11%). We confirmed the name of 89 services (34%) against online information. We received further details from eight organisations about 27 services. Specifically, we received details about the organisation name for 27 of the 265 services (10%), service name for 25 services (9%), service type for 25 services (9%), a website for 19 services (7%), and data on eligibility criteria and types of supports provided for between 25 or 26 services (9% or 10%). Conclusion : This pilot study highlighted the complexity of mapping services for adults with CP in Ireland. Prior to conducting a future study, the scope of the map of services should be considered, and attempts should be made to improve the accuracy of information provided by informants and to engage organisations in verifying service details.
Publisher: F1000 Research Ltd
Date: 15-12-2022
DOI: 10.12688/HRBOPENRES.13609.2
Abstract: Background : Cerebral palsy (CP) is a common cause of physical disability in childhood. The majority of children with CP survive to adulthood. Once discharged from children’s services, adults with CP find it challenging to navigate health services. The aim of this study was to pilot and refine a methodology to map services for adults with CP in Ireland. Methods: We used a multi-informant mapping methodology consisting of: 1. Defining health services 2. Identifying informants 3. Designing a survey 4. Collecting data 5. Data checking and analysis. We collected data on services from service users and service providers using an online survey. We verified data against information available online and by asking organisations to provide details about the service. Results: Fifteen service users and nine service providers completed the online survey. Data on 265 unique services at 32 organisations were provided. The most commonly provided services were physiotherapy (12%) and occupational therapy (11%). We confirmed the name of 89 services (34%) against online information. We received further details from eight organisations about 27 services. Specifically, we received details about the organisation name for 27 of the 265 services (10%), service name for 25 services (9%), service type for 25 services (9%), a website for 19 services (7%), and data on eligibility criteria and types of supports provided for between 25 or 26 services (9% or 10%). Conclusion : This pilot study highlighted the complexity of mapping services for adults with CP in Ireland. We recommend that an alternative methodology should be used to map services for adults with CP in Ireland.
Publisher: BMJ
Date: 08-2020
DOI: 10.1136/BMJOPEN-2019-035892
Abstract: Cerebral palsy (CP) is a neurodisability that primarily results in motor impairments and activity limitations, but is often associated with epilepsy and disturbances of sensation, perception, cognition, behaviour and speech. Most children with CP survive well into adulthood. Adults with CP experience increased risk of age-related chronic conditions such as arthritis, stroke, cardiorespiratory and mental health conditions in addition to the ongoing disabilities experienced from childhood. Therefore, adults with CP often require extensive health services. However, health service use among adults with CP has not been well documented. This mixed method review aims to identify, appraise and synthesise quantitative and qualitative literature examining health service use among adults with CP. The mixed method systematic review will be conducted in accordance with the Joanna Briggs Institute (JBI) methodology. A systematic search of MEDLINE (Ovid), CINAHL, Embase, PsycINFO and Cochrane Library from inception to March 2020 will be conducted. Quantitative observational studies, qualitative studies and mixed method studies examining health service use among adults with CP (≥18 years) will be included. Outcomes of interest are the proportion of adults using health services frequency of use and experiences of health services from the perspectives of adults with CP, caregivers and health service providers. Two reviewers will independently screen titles, abstracts and full-texts, extract data and assess the quality of included studies using JBI instruments. Where possible a pooled analysis and aggregation of findings will be performed for quantitative and qualitative data, respectively, and Grading of Recommendations Assessment, Development and Evaluation (GRADE)/GRADE-CERQual (Confidence in Evidence from Reviews of Qualitative research) employed. Quantitative and qualitative findings will be integrated using a triangulation approach at the synthesis stage. A narrative synthesis will be carried out where this is not possible. Ethical approval is not required for this review. The findings will be disseminated through a peer-reviewed journal and conferences. CRD42020155 380.
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
No related grants have been discovered for Jennifer Ryan.