Carer and Provider Perspectives about Pediatric Neuro-Oncology Rehabilitation in The Pakistan

CARER AND PROVIDER PERSPECTIVES ABOUT PEDIATRIC TUMOR REHAB

Abstract

Study’s Purpose:  This study aims to find out the pediatric neuro-oncology rehabilitation services are available in Pakistan and needs of their patients and families are fulfilled.

Method: The Qualitative study was conducted using a convenience sampling technique. The sample size was 30 patients' carers and providers. The data was collected from the University of Child Health Sciences and Children Hospital, Lahore. The patient was included with age of  25 years or above and excluded with severe hearing and visual loss or depression, bipolar disorder, schizophrenia and other psychoses, dementia, and developmental disorders It was obtained through questionnaires given to the respondents in Survey 1. Parents of pediatric neuro-oncology patients are involved in Survey 2. A self-structured questionnaire is used to collect data. In this study, two separate survey questionnaires were used. The quantitative data and the narrative content were reported by Descriptive statistics which summarized the open-ended responses. SPSS version 21 was used to analyze the data. Each healthcare professional assessed that inpatient rehabilitation services were more accessible and available than outpatient rehabilitation services. Patients and carers of children having CNS tumor identified their experience with pediatric neuro-oncology rehabilitation.

Findings: Each healthcare professional assessed that inpatient rehabilitation services were more accessible and available than outpatient rehabilitation services. Patient and carers of children having CNS tumors identified their experience with pediatric neuro-oncology rehabilitation.

 Conclusion:  Particularly for outpatients, the services were frequently unmet for teenagers, young adults and pediatric neuro-oncology so, they need urgent services for their rehabilitation. Action needs to be taken to make sure equal appropriate access is available, where services were not provided for the pediatrics and youngsters. Due to the unmeet of services, the major disadvantage is the undiagnosed CNS tumor cases in current guidelines