Mapping health services for adults with cerebral palsy in Ireland: a pilot study [version 2; peer review: 1 approved, 2 approved with reservations]
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 meth...
| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
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F1000 Research Ltd
2022-12-01
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| Series: | HRB Open Research |
| Subjects: | |
| Online Access: | https://hrbopenresearch.org/articles/5-61/v2 |
| _version_ | 1797648597665185792 |
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| author | Fiona Weldon Shalini Jagdeo Rory O'Sullivan Claire Kerr Sarah Harrington Jennifer M Ryan Manjula Manikandan Jennifer Fortune |
| author_facet | Fiona Weldon Shalini Jagdeo Rory O'Sullivan Claire Kerr Sarah Harrington Jennifer M Ryan Manjula Manikandan Jennifer Fortune |
| author_sort | Fiona Weldon |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-03-11T15:34:16Z |
| format | Article |
| id | doaj.art-995713bee4c64c8babec3b257381f47b |
| institution | Directory Open Access Journal |
| issn | 2515-4826 |
| language | English |
| last_indexed | 2024-03-11T15:34:16Z |
| publishDate | 2022-12-01 |
| publisher | F1000 Research Ltd |
| record_format | Article |
| series | HRB Open Research |
| spelling | doaj.art-995713bee4c64c8babec3b257381f47b2023-10-27T00:00:00ZengF1000 Research LtdHRB Open Research2515-48262022-12-01514943Mapping health services for adults with cerebral palsy in Ireland: a pilot study [version 2; peer review: 1 approved, 2 approved with reservations]Fiona Weldon0Shalini Jagdeo1Rory O'Sullivan2https://orcid.org/0000-0001-8669-2658Claire Kerr3https://orcid.org/0000-0003-2067-5091Sarah Harrington4Jennifer M Ryan5https://orcid.org/0000-0003-3768-2132Manjula Manikandan6https://orcid.org/0000-0003-2631-8482Jennifer Fortune7https://orcid.org/0000-0001-8971-1236Public and Patient Involvement contributor, Meath, IrelandDepartment of Public Health and Epidemiology, Royal College of Surgeons in Ireland University of Medicine and Health Sciences, Dublin, IrelandCentral Remedial Clinic, Dublin, IrelandSchool of Nursing and Midwifery, Queen's University Belfast, Belfast, UKPublic and Patient Involvement contributor, Cork, IrelandDepartment of Public Health and Epidemiology, Royal College of Surgeons in Ireland University of Medicine and Health Sciences, Dublin, IrelandDepartment of Public Health and Epidemiology, Royal College of Surgeons in Ireland University of Medicine and Health Sciences, Dublin, IrelandDepartment of Public Health and Epidemiology, Royal College of Surgeons in Ireland University of Medicine and Health Sciences, Dublin, IrelandBackground: 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.https://hrbopenresearch.org/articles/5-61/v2Cerebral palsy health services adults mapping survey.eng |
| spellingShingle | Fiona Weldon Shalini Jagdeo Rory O'Sullivan Claire Kerr Sarah Harrington Jennifer M Ryan Manjula Manikandan Jennifer Fortune Mapping health services for adults with cerebral palsy in Ireland: a pilot study [version 2; peer review: 1 approved, 2 approved with reservations] HRB Open Research Cerebral palsy health services adults mapping survey. eng |
| title | Mapping health services for adults with cerebral palsy in Ireland: a pilot study [version 2; peer review: 1 approved, 2 approved with reservations] |
| title_full | Mapping health services for adults with cerebral palsy in Ireland: a pilot study [version 2; peer review: 1 approved, 2 approved with reservations] |
| title_fullStr | Mapping health services for adults with cerebral palsy in Ireland: a pilot study [version 2; peer review: 1 approved, 2 approved with reservations] |
| title_full_unstemmed | Mapping health services for adults with cerebral palsy in Ireland: a pilot study [version 2; peer review: 1 approved, 2 approved with reservations] |
| title_short | Mapping health services for adults with cerebral palsy in Ireland: a pilot study [version 2; peer review: 1 approved, 2 approved with reservations] |
| title_sort | mapping health services for adults with cerebral palsy in ireland a pilot study version 2 peer review 1 approved 2 approved with reservations |
| topic | Cerebral palsy health services adults mapping survey. eng |
| url | https://hrbopenresearch.org/articles/5-61/v2 |
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