Understanding the use of digital technologies to provide disability services remotely during the COVID-19 pandemic; a multiple case study design.

BACKGROUND: Using digital technologies to provide services and supports remotely may improve efficiency and accessibility of healthcare, and support people with disabilities to live independently. This study aimed to explore the experience of using digital technologies to access and provide disability services and supports during the Covid-19 pandemic, from the perspective of people with disabilities, families and service providers. METHODS: Using a multiple case study design, we purposively sampled three cases based on service user characteristics and geographical reach of the service. We conducted semi-structured interviews with 40 service users and service providers. Topic guides and analysis were informed by the Consolidated Framework for Implementation Research (CFIR). Analysis followed a largely deductive approach, using the CFIR constructs as a coding framework. A summary memo was developed for each case. Influence and strength of each construct was rated to identify constructs that influenced implementation of digital technologies. Ratings were compared across services to identify facilitators and barriers to implementation. RESULTS: Service users and providers were positive about using digital technologies to access and provide disability services and supports remotely. Advantages over in-person delivery included reduced travel time, increased opportunity for peer support and peer learning, more choice and opportunity to participate in activities, and an enhanced sense of self while accessing services from the secure environment of their home. The urgency to identify new modes of service delivery to meet the needs of service users during Covid-19 was a strong facilitator but did not necessarily result in successful implementation. Other factors that were strong facilitators were the use of adaptations to enable service users to access the online service, service users' willingness to try the online service, service users' persistence when they encountered challenges, and the significant time and effort that service providers made to support service users to participate in the online service. Barriers to implementation included the complexity of accessing online platforms, poor design quality of online platforms, and organisations prioritising in-person delivery over online services. CONCLUSIONS: These findings may allow service providers to leverage facilitators that support implementation of online disability services and supports.

Prevalence and incidence of chronic conditions among adults with cerebral palsy: A systematic review and meta-analysis.

AIM: To assess the prevalence and incidence of chronic conditions among adults with cerebral palsy (CP) and compare them to the prevalence and incidence among adults without CP. METHOD: We searched MEDLINE and Embase for studies reporting the prevalence or incidence of one or more chronic conditions among adults with CP. Two independent reviewers screened titles, abstracts, and full-text articles. Two independent reviewers extracted data relating to prevalence and incidence and appraised study quality. We performed random-effects meta-analyses to pool prevalence and incidence. RESULTS: We identified 69 studies; 65 reported the prevalence of 53 conditions and 13 reported the incidence of 21 conditions. At least 20% of adults had the following conditions: depression (21%); anxiety (21%); mood affective disorders (23%); asthma (24%); hypertension (26%); epilepsy (28%); urinary incontinence (32%); malnutrition (38%); and scoliosis (46%). Adults with CP were more likely to have type 2 diabetes, anxiety, bipolar disorder, depression, schizophrenia, hypertension, ischaemic heart disease, stroke, cerebrovascular disease, asthma, liver disease, osteoarthritis, osteoporosis, underweight, and chronic kidney disease than adults without CP. INTERPRETATION: These data from 18 countries, which provide an international perspective, may be used to promote awareness, identify targets for intervention, and inform the development of appropriate supports for adults with CP.

Health service use among adults with cerebral palsy: a mixed-methods systematic review.

AIM: 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. METHOD: 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. RESULTS: 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. INTERPRETATION: 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.

Use of health services and unmet needs among adults with cerebral palsy in Ireland.

AIM: 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. METHOD: 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. RESULTS: 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/prosthetic services were the most commonly used services, used by 57%, 48%, and 35% of the sample 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. INTERPRETATION: 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. WHAT THIS PAPER ADDS: 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.

Access, use and satisfaction with physiotherapy services among adults with cerebral palsy living in the United Kingdom and Ireland.

PURPOSE: 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. METHODS: 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. RESULTS: Participants (n = 162) were aged 18-74 years. The majority were female (75%) and lived in the UK (83%). Ninety percent of participants reported a need for physiotherapy but only 35% received physiotherapy services. The most common reason for visiting physiotherapy was mobility decline (62%). Satisfaction with the availability and quality of physiotherapy services were 21% and 27%, respectively. Adults with scoliosis and mobility decline were less likely to report that they received the physiotherapy they needed. CONCLUSION: 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.

Mapping health services for adults with cerebral palsy in Ireland: a pilot study.

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.

Public and Patient Involvement in Doctoral Research During the COVID-19 Pandemic: Reflections on the Process, Challenges, Impact and Experiences From the Perspectives of Adults With Cerebral Palsy and the Doctoral Researcher.

Introduction: Cerebral palsy (CP) is a lifelong condition, where people may experience complications as they age. Including the views of people with CP through Public and Patient Involvement (PPI) ensures that research into the condition is relevant and meaningful in addressing their concerns. However, there is a lack of evidence on incorporating the voices of adults with CP in the doctoral research process. Therefore, this paper aims to provide an overview of how adults with CP were involved in a doctoral research process during the pandemic. Methods: This paper describes the PPI process and its impact at various stages of the doctoral research process and reflects on the experiences from the perspective of the doctoral researcher and adults with CP using the INVOLVE Values and Principles framework. Five adults with CP were consulted throughout the doctoral research programme. The data for this paper is a combination of reflection notes, email exchanges, meeting minutes and informal discussions with the PPI team on their experiences of being involved in the PPI process. The content of this paper is informed by GRIPP 2 checklist. Results: The doctoral researcher and adult reflections highlighted the value of collaboration and the positive impact on research at each stage of the doctoral research process. Although meetings were adapted due to the pandemic, the values of PPI were adhered to throughout the doctoral research. Conclusion: Involving adults with CP positively impacted the doctoral research process. It is recommended to consider individual access needs to ensure meetings and information are accessible for disabled adults. Our reflective findings and recommendations may help other researchers who plan to involve adults with CP in doctoral research.

Co-designing resources to support the transition from child to adult health services for young people with cerebral palsy: A design thinking approach.

Introduction: Design thinking is a human-centred process that aims to identify the needs of end-users and iteratively develop solutions. Involving end-users in the development and design of solutions may enhance effectiveness by increasing focus on the needs of the target population. This paper describes the process of co-designing resources to support the transition from child-centred to adult-orientated health services using a design thinking approach. Methods: Five co-design workshops were conducted remotely with a young person advisory group and parent advisory group. A design thinking process guided by the Stanford D.School approach was used to understand the transition needs of young people and their parents and iteratively develop solutions to improve end-user experience. Results: Eight resource prototypes were generated: (1) designated transition coordinator, (2) digital stories of transition experience (3) written informational support (4) transition website, (5) transition checklists and worksheets (6) transition app, (7) transition programme or course and (8) educational programme for health professionals. Conclusion: Design thinking is a feasible approach to identify, characterise and prioritise resources collaboratively with end-user partners.

Unmet healthcare needs in adults with childhood-onset neurodisabilities: a protocol for a systematic review.

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.

The 2019 neuro-rehabilitation implementation framework in Ireland: Challenges for implementation and the implications for people with brain injuries.

In 2019, eight years after the publication of Ireland's first neuro-rehabilitation strategy, an implementation framework was published. This paper describes and assesses the Irish health policy journey to the publication of the 2019 Implementation Framework with a particular focus on tracking the rehabilitation needs of people with acquired brain injury (ABI). Internationally, rehabilitation services are a low priority for governments, with policy makers having limited knowledge and understanding of rehabilitation. This low political priority and policy understanding contributes to under-developed and poorly co-ordinated services for people who need neuro-rehabilitation services, including people with Acquired Brain Injury (ABI). Despite the publication of the 2019 neuro-rehabilitation implementation framework, key challenges remain for people with ABI in Ireland, including the absence of services across the 'pathway', the under-resourcing of specialist rehabilitation services, the impact on the lives of people with brain injury of poor or no access to services, and the lack of good data on this population. The paper concludes with recommendations on how increased political priority of the rehabilitation needs of people with ABI could enhance implementation of the neuro-rehabilitation implementation framework.

Health service use among adults with cerebral palsy: a mixed methods systematic review protocol.

INTRODUCTION: 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. METHODS AND ANALYSIS: 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. ETHICS AND DISSEMINATION: Ethical approval is not required for this review. The findings will be disseminated through a peer-reviewed journal and conferences. PROSPERO REGISTRATION NUMBER: CRD42020155 380.