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Frizzell Y1, Zaman G2, Ullah S1, Saleem F1, Khan S1, Khan N1, Javed F1, Khan A1, Khan S1, Mukarram A1, Husain SA1, Zia H1, Ahmad S1, Raza M1, Habib H1
1Akbar Kare Institute (AKi), Peshawar, Pakistan, 2International Committee of the Red Cross (ICRC), Peshawar, Pakistan
Background: International guidelines for children with developmental disabilities is Early Intervention (EI). Experiences that are rich in variability with opportunities to learn allows for optimal development of the brain in the first two years of life. Disability and poverty mean these experiences may be lacking. Akbar Kare is a Family Centred Rehabilitation Service in Peshawar, Pakistan. Data collected from 10,500 children indicates less than 13% are 2 years or less on their first visit. There is lack of epidemiological data in low-and-middle-income countries (LAMIC) on the experiences of families and children with developmental disabilities. We need to understand why EI is not considered either valuable, or possible.
Purpose: To identify and understand why barriers exist preventing access to EI for children with developmental disabilities. Enable better understanding and communication between care users and care givers.
Methods: A multicentre mixed-method exploratory study investigated context-specific understanding of the perceptions of barriers to early intervention among healthcare providers and primary caregivers of Children with Disabilities (CwD) in Peshawar.
Stage One:
Interview data was collected from ten focus groups. Care for gender and peer neutrality was optimised. Groups were recruited from care-givers and varied paediatric medical professions. This enabled us to generate unbiased statements using commonly understood vocabulary.
Stage two:
A validated cross-sectional, descriptive survey was administered to 378 healthcare providers from five category A hospitals (>500 beds) and three physiotherapy clinics in Peshawar. 200 primary caregivers of CwDs were recruited selected through consecutive sampling at three paediatric rehabilitation clinics. Descriptive statistics were performed to compare perceived barriers to EI by healthcare providers and caregivers.
Results: Four major themes emerged from semi-structured focus group discussions, these were: knowledge, beliefs, finance and infrastructure.
More than a quarter 98 (26%) of healthcare professionals and four-fifths 160 (80%) of care-givers did not know what appropriate Early Intervention was. 120 (60%) caregivers were fearful of the cost of medical services and the majority of healthcare providers (65%) and caregivers (55%) said that families with CwD should be exempt from payment. Yet around half 245 (44%) recognised getting a CwD registered for exemption was difficult. Over Two-thirds 250 (69%) of healthcare providers considered the Basic Health Units important but only one-third 61 (32%) of caregivers did. More than three-quarters 449 (78%) of all respondents consider tertiary hospitals should be the initial point of contact. Almost half 164 (45%) of healthcare providers stated that disability occurred through some fault of the mothers and one-third 111 (31%) was due to parents' wrongdoing.
Conclusion(s): This study highlights significant problems indicating that barriers to EI are varied and complex in nature.
Implications: The study describes multiple factors that deny children with disabilities EI. Many of these issues are common in other regions where CwD need better and earlier intervention. We need to understand why they are not being provided. One barrier is limited resources, but understanding 'why EI?' and 'what is EI?' is also lacking. This study forms the basis for communication between families and leaders in the medical and social care agencies and policy makers, to effect change.
Keywords: Childhood disability, Early Intervention, Barriers
Funding acknowledgements: This research was funded by Akbar Kare, Peshawar, Pakistan
Purpose: To identify and understand why barriers exist preventing access to EI for children with developmental disabilities. Enable better understanding and communication between care users and care givers.
Methods: A multicentre mixed-method exploratory study investigated context-specific understanding of the perceptions of barriers to early intervention among healthcare providers and primary caregivers of Children with Disabilities (CwD) in Peshawar.
Stage One:
Interview data was collected from ten focus groups. Care for gender and peer neutrality was optimised. Groups were recruited from care-givers and varied paediatric medical professions. This enabled us to generate unbiased statements using commonly understood vocabulary.
Stage two:
A validated cross-sectional, descriptive survey was administered to 378 healthcare providers from five category A hospitals (>500 beds) and three physiotherapy clinics in Peshawar. 200 primary caregivers of CwDs were recruited selected through consecutive sampling at three paediatric rehabilitation clinics. Descriptive statistics were performed to compare perceived barriers to EI by healthcare providers and caregivers.
Results: Four major themes emerged from semi-structured focus group discussions, these were: knowledge, beliefs, finance and infrastructure.
More than a quarter 98 (26%) of healthcare professionals and four-fifths 160 (80%) of care-givers did not know what appropriate Early Intervention was. 120 (60%) caregivers were fearful of the cost of medical services and the majority of healthcare providers (65%) and caregivers (55%) said that families with CwD should be exempt from payment. Yet around half 245 (44%) recognised getting a CwD registered for exemption was difficult. Over Two-thirds 250 (69%) of healthcare providers considered the Basic Health Units important but only one-third 61 (32%) of caregivers did. More than three-quarters 449 (78%) of all respondents consider tertiary hospitals should be the initial point of contact. Almost half 164 (45%) of healthcare providers stated that disability occurred through some fault of the mothers and one-third 111 (31%) was due to parents' wrongdoing.
Conclusion(s): This study highlights significant problems indicating that barriers to EI are varied and complex in nature.
Implications: The study describes multiple factors that deny children with disabilities EI. Many of these issues are common in other regions where CwD need better and earlier intervention. We need to understand why they are not being provided. One barrier is limited resources, but understanding 'why EI?' and 'what is EI?' is also lacking. This study forms the basis for communication between families and leaders in the medical and social care agencies and policy makers, to effect change.
Keywords: Childhood disability, Early Intervention, Barriers
Funding acknowledgements: This research was funded by Akbar Kare, Peshawar, Pakistan
Topic: Disability & rehabilitation
Ethics approval required: No
Institution: N/A
Ethics committee: N/A
Reason not required: This was a low risk non-interventional study. Prior to data collection, written permission was sought from the management (hospital directors, CEOs, managing directors) as well as from all Department Heads of facilities selected for the study. Informed consent was obtained from study participants after they were explained the study’s objectives. Gathered data was anonymized and coded. The study was conducted in accordance with the Helsinki Declaration.
All authors, affiliations and abstracts have been published as submitted.
