title: Understanding utilization of outpatient clinics for children with special health care needs in southern Israel.
abstract: To understand the pattern of utilization of ambulatory care by parents of children with special health care needs (CSHCN) and to explore parental challenges in coping with health maintenance of their infants after discharge from a neonatal intensive care unit (NICU). CSHCN require frequent utilization of outpatient ambulatory clinics especially in their first years of life. Multiple barriers are faced by families in disadvantaged populations which might affect adherence to medical referrals. Our study attempts to go beyond quantitative assessment of adherence rates, and capture the influence of parental agency as a critical factor ensuring optimal utilization of healthcare for CSHCN. A prospective, mixed-methods, cohort study followed 158 Jewish and Bedouin-Arab infants in the first year post discharge from NICU in southern Israel. Rates of utilization of ambulatory clinics were obtained from medical records, and quantitative assessment of factors affecting it was based on structured interviews with parents at baseline. Qualitative analysis was based on home visits or telephone in-depth interviews conducted about 1 year post-discharge, to obtain a rich, multilayered, experiential perspectives and explained perceptions by parents. Adherence to post-discharge referrals was generally good, but environmental, cultural, and financial obstacles to healthcare, magnified by communication barriers, forced parents with limited resources to make difficult choices affecting utilization of healthcare services. Improving concordance between primary caregivers and health care providers is crucial, and further development of supportive healthcare for CSHCN in concordance with parental limitations and preferences is needed.
authors.affiliation: Department of Anthropology and Sociology, Ashkelon Academic College, 12 Ben-Zvi Ave, 78211, Ashkelon, Israel, hperes@post.bgu.ac.il.
authors.forename: Hagit
authors.initials: H
authors.lastname: Peres
authors.forename: Yael
authors.initials: Y
authors.lastname: Glazer
authors.forename: Daniella
authors.initials: D
authors.lastname: Landau
authors.forename: Kyla
authors.initials: K
authors.lastname: Marks
authors.forename: Hana'a
authors.initials: H
authors.lastname: Abokaf
authors.forename: Ilana
authors.initials: I
authors.lastname: Belmaker
authors.forename: Arnon
authors.initials: A
authors.lastname: Cohen
authors.forename: Ilana
authors.initials: I
authors.lastname: Shoham-Vardi
mesh_terms: D018912:Arabs / Q000706:statistics & numerical data; D015331:Cohort Studies; D019988:Children with Disabilities / Q000523:psychology; D005260:Female; D006785:Hospitals, University; D006801:Humans; D007223:Infant; D007230:Infant, Low Birth Weight; D007363:Intensive Care Units, Neonatal; D007407:Interviews as Topic; D007557:Israel; D007585:Jews / Q000706:statistics & numerical data; D008297:Male; D010044:Outpatient Clinics, Hospital / Q000706:statistics & numerical data*; D010290:Parents / Q000523:psychology*; D010349:Patient Compliance / Q000208:ethnology / Q000523:psychology / Q000706:statistics & numerical data; D012044:Regression Analysis; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires