Skip to main content

Advertisement

SpringerLink
Log in

Understanding Utilization of Outpatient Clinics for Children with Special Health Care Needs in Southern Israel

  • Published:
Maternal and Child Health Journal Aims and scope Submit manuscript

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Palfrey, J. S., Sofis, L. A., Davidson, E. J., et al. (2004). The pediatric alliance for coordinated care: Evaluation of a medical home model. Pediatrics, 113(5 Suppl), 1507–1516.

    PubMed  Google Scholar 

  2. Sutton, D., Stanley, P., Babl, F. E., & Phillips, F. (2008). Preventing or accelerating emergency care for children with complex healthcare needs. Archives of Disease in Childhood, 93(1), 17–22.

    Article  PubMed  Google Scholar 

  3. McIntosh, J., & Runciman, P. (2008). Exploring the role of partnership in the home care of children with special health needs: Qualitative findings from two service evaluations. International Journal of Nursing Studies, 45(5), 714–726.

    Article  PubMed  Google Scholar 

  4. Gray, D., Woodward, L. J., Spencer, C., Inder, T. E., & Austin, N. C. (2006). Health service utilisation of a regional cohort of very preterm infants over the first 2 years of life. Journal of Paediatrics and Child Health, 42(6), 377–383.

    Article  PubMed  Google Scholar 

  5. Spittle, A. J., Ferretti, C., Anderson, P. J., et al. (2009). Improving the outcome of infants born at <30 weeks’ gestation—a randomized controlled trial of preventative care at home. BMC Pediatrics, 9, 73.

    Article  PubMed  PubMed Central  Google Scholar 

  6. Spittle, A. J., Anderson, P. J., Lee, K. J., et al. (2010). Preventive care at home for very preterm infants improves infant and caregiver outcomes at 2 years. Pediatrics, 126(1), e171–e178.

    Article  PubMed  Google Scholar 

  7. Kuo, D. Z., Bird, T. M., & Tilford, J. M. (2011). Associations of family-centered care with health care outcomes for children with special health care needs. Maternal and Child Health Journal, 15(6), 794–805.

    Article  PubMed  Google Scholar 

  8. Gorman, B. K. (1999). Racial and ethnic variation in low birthweight in the United States: Individual and contextual determinants. Health Place, 5(3), 195–207.

    Article  PubMed  CAS  Google Scholar 

  9. Conley, D., & Bennett, N. G. (2001). Birth weight and income: Interactions across generations. Journal of Health and Social Behavior, 42(4), 450–465.

    Article  PubMed  CAS  Google Scholar 

  10. Garcia Coll, C. T. (1990). Developmental outcome of minority infants: A process-oriented look into our beginnings. Child Development, 61(2), 270–289.

    Article  PubMed  CAS  Google Scholar 

  11. Hintz, S. R., Kendrick, D. E., Vohr, B. R., Poole, W. K., & Higgins, R. D. (2008). National Institute of Child Health and Human Development (NICHD) Neonatal Research Network. Community supports after surviving extremely low-birth-weight, extremely preterm birth: Special outpatient services in early childhood. Archives of Pediatrics and Adolescent Medicine, 162(8), 748–755.

    Article  PubMed  PubMed Central  Google Scholar 

  12. Reichman, N. E., Teitler, J. O., & Hamilton, E. R. (2009). Effects of neighborhood racial composition on birthweight. Health Place, 15(3), 784–791.

    Article  PubMed  PubMed Central  Google Scholar 

  13. Rosenthal, L., & Lobel, M. (2011). Explaining racial disparities in adverse birth outcomes: Unique sources of stress for Black American women. Social Science and Medicine, 72(6), 977–983.

    Article  PubMed  Google Scholar 

  14. Averill, J. B. (2006). Getting started: Initiating critical ethnography and community-based action research in a program of rural health studies. The International Journal of Qualitative Methods, 5(2). http://search.proquest.com.ezproxy.ash-college.ac.il/docview/61644221?accountid=40472.

  15. Laditka, J. N., Laditka, S. B., & Probst, J. C. (2009). Health care access in rural areas: Evidence that hospitalization for ambulatory care-sensitive conditions in the United States may increase with the level of rurality. Health Place, 15(3), 731–740.

    Article  PubMed  Google Scholar 

  16. Galil, A., Bachner, Y. G., Merrick, J., et al. (2006). Physician-parent communication as predictor of parent satisfaction with child development services. Research in Developmental Disabilities, 27(3), 233–242.

    Article  PubMed  Google Scholar 

  17. Broyles, R. S., Tyson, J. E., Heyne, E. T., et al. (2000). Comprehensive follow-up care and life-threatening illnesses among high-risk infants: A randomized controlled trial. Journal of American Medical Association, 284(16), 2070–2076.

    Article  CAS  Google Scholar 

  18. Benedict, R. E. (2008). Quality medical homes: Meeting children’s needs for therapeutic and supportive services. Pediatrics, 121(1), e127–e134.

    Article  PubMed  Google Scholar 

  19. Veugelers, P. J., & Yip, A. M. (2003). Socioeconomic disparities in health care use: Does universal coverage reduce inequalities in health? Journal of Epidemiology and Community Health, 57(6), 424–428.

    Article  PubMed  CAS  PubMed Central  Google Scholar 

  20. McPherson, M. L., Lairson, D. R., Smith, E. O., Brody, B. A., & Jefferson, L. S. (2002). Noncompliance with medical follow-up after pediatric intensive care. Pediatrics, 109(6), e94.

    Article  PubMed  Google Scholar 

  21. Biering-Sorensen, S., Sondergaard, G., Vitting Andersen, K., Andersen, A. M., & Mortensen, L. H. (2012). Time trends in socio-economic factors and risk of hospitalisation with infectious diseases in pre-school children 1985–2004: A danish register-based study. Paediatric and Perinatal Epidemiology, 26(3), 226–235.

    Article  PubMed  Google Scholar 

  22. American Academy of Pediatrics Medical Home Initiatives for Children with Special Needs Project Advisory Committee. (2004). Policy statement: Organizational principles to guide and define the child health care system and/or improve the health of all children. Pediatrics, 113(5 Suppl), 1545–1547.

    Google Scholar 

  23. Horne, R. (2006). Compliance, adherence, and concordance: Implications for asthma treatment. Chest, 130(1 Suppl), 65S–72S.

    Article  PubMed  Google Scholar 

  24. Bissell, P., May, C. R., & Noyce, P. R. (2004). From compliance to concordance: Barriers to accomplishing a re-framed model of health care interactions. Social Science and Medicine, 58(4), 851–862.

    Article  PubMed  Google Scholar 

  25. Sandman, L., Granger, B. B., Ekman, I., & Munthe, C. (2012). Adherence, shared decision-making and patient autonomy. Medicine, Health Care and Philosophy, 15(2), 115–127.

    Article  Google Scholar 

  26. Fraser, S. (2010). Concordance, compliance, preference or adherence. Patient Prefer Adherence., 4, 95–96.

    Article  PubMed  PubMed Central  Google Scholar 

  27. CBS. (2009). Statistical yearbook of Israel. Jerusalem.

  28. Marx, E. (1967). Bedouin of the Negev Manchester. England: Manchester University Press.

    Google Scholar 

  29. Swirski, S. Transparent citizens: Israeli government policy toward the Negev Bedouins1. Hagar, 8(2):25–45. http://search.proquest.com/docview/214417689?accountid=40472.

  30. Swirski, S., & Hasson, Y. (2006). Invisible citizens: Israeli government policy toward the Negev Bedouin. Adva Center for Information on Equality and Social Justice. www.adva.org.

  31. Daoud, N., O’Campo, P., Anderson, K., Agbaria, A. K., & Shoham-Vardi, I. (2012). The social ecology of maternal infant care in socially and economically marginalized community in southern Israel. Health Education Research, 27(6), 1018–1030.

    Google Scholar 

  32. Abu-Bader, S. (Ed.). (2011). The Negev Bedouin statistical data book  No 3. The Robert H. Arnow Center for Bedouin Studies and Development, Negev Center for regional Development. Be’er Sheva: BGU Print.

  33. Weitzman, D. (2003). Consanguinity and utilization of prenatal tests to detect fetal malformations and hereditary diseases among the settled Bedouins of the Negev: Evaluation of community interventions among pregnant women. Ben-Gurion University in the Negev, Beersheba.

  34. Bittles, A. H., & Black, M. L. (2010). The impact of consanguinity on neonatal and infant health. Early Human Development, 86(11), 737–741.

    Article  PubMed  CAS  Google Scholar 

  35. Hamamy, H. (2012). Consanguineous marriages: Preconception consultation in primary health care settings. Journal of Community Genetics, 3(3), 185–192.

    Article  PubMed  PubMed Central  Google Scholar 

  36. Harlap, S., Kleinhaus, K., Perrin, M. C., et al. (2008). Consanguinity and birth defects in the Jerusalem perinatal study cohort. Human Heredity, 66(3), 180–189.

    Article  PubMed  CAS  PubMed Central  Google Scholar 

  37. Pedersen, J. (2002). The influence of consanguineous marriage on infant and child mortality among Palestinians in the west bank and Gaza, Jordan, Lebanon and Syria. Community Genetics, 5(3), 178–181.

    Article  PubMed  CAS  Google Scholar 

  38. Al-Krenawi, A., & Lightman, E. S. (2000). Learning achievement, social adjustment, and family conflict among Bedouin-Arab children from polygamous and monogamous families. Journal of Social Psychology, 140(3), 345–355.

    Article  PubMed  CAS  Google Scholar 

  39. Morse, Janice, & Niehaus, Linda. (2009). Mixed method design: Principles and procedures (p. 193). CA, USA: Walnut Creek.

    Google Scholar 

  40. Wisdom, J. P., Cavaleri, M. A., Onwuegbuzie, A. J., & Green, C. A. (2012). Methodological reporting in qualitative, quantitative, and mixed methods health services research articles. Health Services Research, 47(2), 721–745.

    Article  PubMed  PubMed Central  Google Scholar 

  41. Pope, C., Ziebland, S., & Mays, N. (2000). Qualitative research in health care. Analyzing qualitative data. British Medical Journal, 320(7227), 114–116.

    Article  PubMed  CAS  PubMed Central  Google Scholar 

  42. Calderón Gómez, C. (2009). Assessing the quality of qualitative health research: Criteria, process and writing. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research, 10(2). http://www.qualitative-research.net/index.php/fqs/article/view/1294.

  43. Mayer, M. L., Skinner, A. C., Slifkin, R. T., & National Survey of Children with Special Health Care Needs. (2004). Unmet need for routine and specialty care: Data from the national survey of children with special health care needs. Pediatrics, 113(2), e109–e115.

    Article  PubMed  Google Scholar 

  44. Nehra, V., Pici, M., Visintainer, P., & Kase, J. S. (2009). Indicators of compliance for developmental follow-up of infants discharged from a regional NICU. Journal of Perinatal Medicine, 37(6), 677–681.

    Article  PubMed  Google Scholar 

  45. Kitzman, H. J., Olds, D. L., Cole, R. E., et al. (2010). Enduring effects of prenatal and infancy home visiting by nurses on children: Follow-up of a randomized trial among children at age 12 years. Archives of Pediatrics and Adolescent Medicine, 164(5), 412–418.

    Article  PubMed  Google Scholar 

  46. Berman, S., Rannie, M., Moore, L., Elias, E., Dryer, L. J., & Jones, M. D, Jr. (2005). Utilization and costs for children who have special health care needs and are enrolled in a hospital-based comprehensive primary care clinic. Pediatrics, 115(6), e637–e642.

    Article  PubMed  Google Scholar 

  47. Homer, C. J., Klatka, K., Romm, D., et al. (2008). A review of the evidence for the medical home for children with special health care needs. Pediatrics, 122(4), e922–e937.

    Article  PubMed  Google Scholar 

  48. Hamilton, L. J., Lerner, C. F., Presson, A. P., & Klitzner, T. S. (2013). Effects of a medical home program for children with special health care needs on parental perceptions of care in an ethnically diverse patient population. Maternal and Child Health Journal, 17(3), 463–469.

    Article  PubMed  Google Scholar 

  49. Wood, D. L., McCaskill, Q. E., Winterbauer, N., et al. (2009). A multi-method assessment of satisfaction with services in the medical home by parents of children and youth with special health care needs (CYSHCN). Maternal and Child Health Journal, 13(1), 5–17.

    Article  PubMed  Google Scholar 

  50. Strickland, B. B., van Dyck, P. C., Kogan, M. D., et al. (2011). Assessing and ensuring a comprehensive system of services for children with special health care needs: A public health approach. American Journal of Public Health, 101(2), 224–231.

    Article  PubMed  PubMed Central  Google Scholar 

  51. Amitai, Y., Haklai, Z., Tarabeia, J., et al. (2005). Infant mortality in Israel during 1950–2000: Rates, causes, demographic characteristics and trends. Paediatric and Perinatal Epidemiology, 19(2), 145–151.

    Article  PubMed  Google Scholar 

  52. Melamed, Y., Bashiri, A., Shoham-Vardi, I., Furman, B., Hackmon-Ram, R., & Mazor, M. (2000). Differences in preterm delivery rates and outcomes in jews and bedouins in southern israel. European Journal of Obstetrics, Gynecology, and Reproductive Biology, 93(1), 41–46.

    Article  PubMed  CAS  Google Scholar 

  53. Chernichovsky, D., & Anson, J. (2005). The jewish-arab divide in life expectancy in israel. Economics & Human Biology, 3(1), 123–137.

    Article  Google Scholar 

  54. Lubetzky, H., Shvarts, S., Merrick, J., Vardi, G., & Galil, A. (2004). The use of developmental rehabilitation services. Comparison between Bedouins and Jews in the South of Israel. Scientific World Journal, 4, 186–192.

    Article  PubMed  Google Scholar 

  55. Al-Krenawi, A., & Graham, J. R. (2006). A comparative study of family functioning, health, and mental health awareness and utilization among female Bedouin-Arabs from recognized and unrecognized villages in the Negev. Health Care for Women International, 27(2), 182–196.

    Article  PubMed  Google Scholar 

  56. Galil, A., Carmel, S., Lubetzky, H., Vered, S., & Heiman, N. (2001). Compliance with home rehabilitation therapy by parents of children with disabilities in Jews and bedouin in israel. Developmental Medicine and Child Neurology, 43(4), 261–268.

    Article  PubMed  CAS  Google Scholar 

  57. Bachner, Y. G., Carmel, S., Lubetzky, H., Heiman, N., & Galil, A. (2006). Parent-therapist communication and satisfaction with the services of a child development center: A comparison between Israeli parents-Jews and Bedouins. Health Communication, 19(3), 221–229.

    Article  PubMed  Google Scholar 

  58. Kushnir, T., Bachner, Y. G., Carmel, S., Flusser, H., & Galil, A. (2008). Pediatricians’ communication styles as correlates of global trust among Jewish and Bedouin parents of disabled children. Journal of Developmental and Behavioral Pediatrics, 29(1), 18–25.

    PubMed  Google Scholar 

  59. Coreil, J. (1991). Maternal time allocation in relation to kind and domain of primary health care. Medical Anthropology Quarterly, 5(3, Contemporary Issues of Anthropology in International Health), 221–235. http://www.jstor.org.ezproxy.ash-college.ac.il/stable/648674.

  60. Van Herk, K. A., & Smith, D. (2012). Tedford Gold S. Safe care spaces and places: Exploring urban aboriginal families’ access to preventive care. Health Place., 18(3), 649–656.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

The study was funded by the National Institute for Health Services and Health Policy (NIHP) of Israel [Grant Nos. R23/2005, and R9/56]. Editing was funded by Ashkelon Academic College, Ashkelon, Israel.

Author information

Authors and Affiliations

  1. Department of Anthropology and Sociology, Ashkelon Academic College, 12 Ben-Zvi Ave, 78211, Ashkelon, Israel

    Hagit Peres

  2. Department of Public Health, Faculty of Health Sciences, Ben-Gurion University of the Negev, POB 563, 84100, Be’er Sheva, Israel

    Hagit Peres, Yael Glazer, Daniella Landau, Hana’a Abokaf & Ilana Shoham-Vardi

  3. Neonatal Intensive Care Unit (NICU), Soroka University Medical Centre, Be’er Sheva, Israel

    Daniella Landau & Kyla Marks

  4. Faculty of Health Sciences, Ben-Gurion University of the Negev, Be’er Sheva, Israel

    Kyla Marks & Ilana Belmaker

  5. Department of Quality Measures and Research, Chief Physician Office, General Management, Clalit Health Services, Tel Aviv, Israel

    Arnon Cohen

  6. Siaal Research Center for Family Medicine and Primary Care, Faculty of Health Sciences, Ben-Gurion University of the Negev, Be’er Sheva, Israel

    Arnon Cohen

Authors
  1. Hagit Peres
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Yael Glazer
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Daniella Landau
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Kyla Marks
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Hana’a Abokaf
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Ilana Belmaker
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Arnon Cohen
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Ilana Shoham-Vardi
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Hagit Peres.

Appendix: Criteria for Defining Health Risk (Daniela Landau and Kyla Marks)

Appendix: Criteria for Defining Health Risk (Daniela Landau and Kyla Marks)

All infants at HR of morbidity, according to definition of the cohort (C). However within the cohort we defined further risk groups according to diagnoses at discharge. The groups were defined according to:

  1. 1.

    HR for severe neurodevelopmental impairment (A)

Intraventricular hemorrhage grade 3-4, Periventricular leukomalacia, asphyxia (hypoxic ischemic encephalopathy grade 2-3), congenital malformations of the nervous system, severe physical malformations (spina bifida, arthrogryphosis, congenital hypotonia), bacterial meningitis

  1. 2.

    HR for chronic health problems (B)

Oxygen dependency at hospital discharge (severe bronchopulmonary dysplasia - PBD), severe congenital heart disease, chronic renal failure, inborn errors of metabolism, ileostomy at discharge

  1. 3.

    Low risk within the cohort (C)

Preterm, Small for Gestational Age, Mild congenital malformations, bronchopulmonary dysplasia (BPD) without home oxygen therapy after discharge, risk of mild-moderate neurodevelopmental impairment (other abnormalities on head US, extremely low birth weight).

Rights and permissions

Reprints and permissions

About this article

Cite this article

Peres, H., Glazer, Y., Landau, D. et al. Understanding Utilization of Outpatient Clinics for Children with Special Health Care Needs in Southern Israel. Matern Child Health J 18, 1831–1845 (2014). https://doi.org/10.1007/s10995-013-1427-2

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10995-013-1427-2

Keywords

Search

Navigation