The Unheard Voices of Children with Complex Disabilities; Parents’ and Children’s Experiences of Nursing Care in the Acute Setting
| Autor: | Phillips, Clare Kathryn |
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| Rok vydání: | 2023 |
| DOI: | 10.15126/thesis.900653 |
| Popis: | Background: The number of children with disabilities in the UK is increasing. Children with disabilities account for a higher number of acute emergency admissions and they remain as inpatients for longer, compared to children without disability. Literature has examined parents’ and nursing views, however, limited data has been collected from children with complex disabilities. Aim: To explore how children with complex disabilities and their families experience nursing care during emergency and inpatient admissions. Methodology: This thesis used a bespoke child participatory approach to elicit the views of 11 children with complex disabilities and their parents. Findings: There was a lack of a child-centred approach to families’ needs. Children with complex disabilities were subject to discriminatory and at times unsafe practice, with insufficient hospital facilities and equipment for their care. It was participants’ perception that nurses lacked knowledge about disability needs. Children with complex disabilities reported that they wanted to be included in care choices and demonstrated through the interview process that they had valuable and important contributions to make, but often they were not recognised, respected, or given the opportunity to contribute. Parents reported feeling heavily relied upon and identified a lack of negotiation regarding the children’s care needs. Parents and nurses were identified as unintentional gatekeepers to children’s voices. Conclusions: Training for health care professionals specifically focused on caring for children with complex disabilities would expand their knowledge and skills to enable them to safely care for children with complex disabilities and truly involve them in their care. Further utilisation of hospital passports, preparedness for admissions, changes to student nurses’ training programs and increased disability-specific exposure are also warranted. |
| Databáze: | OpenAIRE |
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