A Family-Centered Evaluation of Psychosocial Agendas in Spina Bifida

  • Mehmet Kemal Kuşcu
  • Banu Cankaya


Care patterns and parenting quality have an important effect on the infant-caregiver relationship, as well as on the developmental outcomes of children [1]. High quality care is linked to higher cognitive ability and higher social competence in children [2]. Especially in the case of disability, families and other close networks gain a pivotal role as the main caregivers for the child [3]. Currently, the role and needs of families attract considerable attention due to the growing amount of evidence regarding their participation in the illness process and the attached psychosocial outcomes.


Cerebral Palsy Family Functioning Parenting Style Spina Bifida Psychological Control 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.


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  1. 1.
    Hungerford A, Cox MJ (2006) Family factors in child care research. Eval Rev 30:631–655PubMedCrossRefGoogle Scholar
  2. 2.
    NICHD (2003) Does quality of child care affect child outcomes at age 41?2? Dev Psychol 39:451–469CrossRefGoogle Scholar
  3. 3.
    Jansen LM, Ketelaar M, Vermeer A (2003) Parental experience of participation in physical therapy for children with physical disabilities. Dev Med Child Neurol 45(1):58–70PubMedCrossRefGoogle Scholar
  4. 4.
    Greene SA, Frank M, Zachman M, Prader A (1985) Growth and sexual development in children with meningomyleocoele. Eur J Pediatr 144:146–148PubMedCrossRefGoogle Scholar
  5. 5.
    Holmbeck GN (2002) A developmental perspective on adolescent health and illness: An introduction to the special issues. J Pediatr Psychol 27:409–416PubMedCrossRefGoogle Scholar
  6. 6.
    Holmbeck GN, Westhoven VC, Philips WS et al (2003) A multi-method, multi-informant, and multi-dimensional perspective on psychosocial adjustment in preadolescents with spina bifida. J Consult Clin Psychol 71:782–796PubMedCrossRefGoogle Scholar
  7. 7.
    Fletcher JM, Dennis M, Northrup H (2000) Hydrocephalus. In: Yeates KO, Ris MD, Taylor HG (eds) Pediatric neuropsychology: Research, theory, and practice. Guilford Press, New York, pp 25–46Google Scholar
  8. 8.
    Blum RW, Resnick MD, Nelson R, St Germaine A (1991) Family and peer issues among adolescents with spina bifida and cerebral palsy. Pediatrics 88:280–285PubMedGoogle Scholar
  9. 9.
    Ammerman RT, Kane VR, Slomka GT et al (1998) Psychiatric symptomatology and family functioning in children and adolescents with spina bifida. J Clin Psychol Med Sett 5:449–465CrossRefGoogle Scholar
  10. 10.
    Appleton PL, Minchom PE, Ellis NC et al (1994) The self-concept of young people with spina bifida: A population-based study. Dev Med Clin Neurol 36:198–215Google Scholar
  11. 11.
    Appleton PL, Ellis NC, Minchom PE et al (1997) Depressive symptoms and self-concept in young people with spina bifida. J Pediatr Psychol 22:707–722PubMedCrossRefGoogle Scholar
  12. 12.
    Quittner AL, Opipari LC (1994) Differential treatment of siblings: Interview and diary analyses comparing two family contexts. Child Dev 65:800–814PubMedCrossRefGoogle Scholar
  13. 13.
    Holmbeck GN, Gorey-Ferguson L, Hudson T et al (1997) Maternal, paternal, and marital functioning in families of preadolescents with spina bifida. J Pediatr Psychol 22:167–181PubMedGoogle Scholar
  14. 14.
    Holmbeck GN, Coakley RM, Hommeyer J et al (2002) Observed and perceived dyadic and systemic functioning in families of preadolescents with a physical disability. J Pediatr Psychol 27:177–189PubMedCrossRefGoogle Scholar
  15. 15.
    Hardy DF, Power TG, Jaedicke S (1993) Examining the relation of parenting to children’s coping with everyday stress. Child Dev 64:1829–1841PubMedCrossRefGoogle Scholar
  16. 16.
    McKernon WL, Holmbeck GN, Colder CR et al (2001) Longitudinal study of observed and perceived family influences on problem-focused coping behaviors of preadolescents with spina bifida. J Pediatr Psychol 26(1):41–54PubMedCrossRefGoogle Scholar
  17. 17.
    Hollahan CJ, Valentiler DP, Moos RH (1995) Parental support, coping strategies, and psychological adjustment: An integrative model with late adolescents. J Youth Adolesc 24:633–648CrossRefGoogle Scholar
  18. 18.
    Kliewer W, Lewis H (1995) Family influences on coping processes in children and adolescents with sickle cell disease. J Pediatr Psychol 20:511–525PubMedCrossRefGoogle Scholar
  19. 19.
    Holmbeck GN, Greenley EN, Coakley RM et al (2006) Family functioning in children and adolescents with spina bifida: An evidence-based review of research and evidence. J Dev Behav Pediatr 27(3):249–277PubMedCrossRefGoogle Scholar
  20. 20.
    Anderson BJ, Coyne JC (1993) Family context and compliance behavior in chronically ill children. In: Krasnegor NA, Epstein L, Johnson SB, Yaffe SJ (eds) Developmental aspects of health compliance behavior. Lawrence Erlbaum Associates, Hillside, pp 77–89Google Scholar
  21. 21.
    Holmbeck GN, Johnson SZ, Wills K et al (2002) Observed and perceived parental overprotection in relation to psychosocial adjustment in pre-adolescents with a physical disability: The mediational role of behavioral autonomy. J Consult Clin Psychol 70:96–110PubMedCrossRefGoogle Scholar
  22. 22.
    Wiegner S, Donders J (2000) Predictors of parental distress after congenital disabilities. J Dev Behav Pediatr 21:271–277PubMedCrossRefGoogle Scholar
  23. 23.
    Epstein NB, Baldwin LM, Bishop DS (2000) Family Assessment Device (FAD). In: Handbook of psychiatric measures. American Psychiatric Association, Washington, DCGoogle Scholar
  24. 24.
    Loebig M (1990) Mothers’ assessments of the impact of children with spina bifida on the family. MCN Am J Mat Child Nurs 19:251–265Google Scholar
  25. 25.
    Spaulding BR, Morgan SB (1986) Spina bifida children and their parents: A population prone to family dysfunction? J Pediatr Psychol 11:359–374PubMedCrossRefGoogle Scholar
  26. 26.
    McCormick MC, Charney EB, Stemmler MM (1986) Assessing the impact of a child with spina bifida on the family. Dev Med Child Neurol 28:53–61PubMedGoogle Scholar
  27. 27.
    Havermans T, Eiser C (1991) Mothers’ perceptions of parenting a child with spina bifida. Child Care Health Dev 17:259–273PubMedCrossRefGoogle Scholar
  28. 28.
    Bier JB, Liebling JA (1996) Parents’ and pediatricians’ views of individuals with meningomyelocele. Clin Pediatr 35:113–118CrossRefGoogle Scholar
  29. 29.
    Holmbeck GN, Faier-Routman J (1995) Spinal lesion level, shunt status, family relationships, and psychosocial adjustment in children and adolescents with spina bifida myelomeningocele. J Pediatr Psychol 20:515–529CrossRefGoogle Scholar
  30. 30.
    Coakley RM, Holmbeck GN, Friedman D et al (2002) A longitudinal study of pubertal timing, parent-child conflict, and cohesion in families of young adolescents with spina bifida. J Pediatr Psychol 27:461–473PubMedCrossRefGoogle Scholar
  31. 31.
    Costigan CL, Floyd FJ, Harter KSM, McClintock JC (1997) Family process and adaptation to children with mental retardation: Disruption and resilience in problem-solving interactions. J Fam Psychol 11:515–529CrossRefGoogle Scholar
  32. 32.
    Seiffge-Krenke I (1998) The highly structured climate in families of adolescents with Diabetes: Functional or dysfunctional for metabolic control? J Pediatr Psychol 23:313–322PubMedCrossRefGoogle Scholar
  33. 33.
    Lemanek KL, Jones ML, Lieberman B (2000) Mothers of children with spina bifida: Adaptational and stress processing. Child Health Care 29:19–35CrossRefGoogle Scholar
  34. 34.
    Fagan J, Schor D (1993) Mothers of children with spina bifida: Factors related to maternal psychosocial functioning. Am J Orthopsychiatry 63:146–152PubMedCrossRefGoogle Scholar
  35. 35.
    Macias MM, Clifford SC, Saylor CF, Kreh SM (2001) Predictors of parenting stress in families of children with spina bifida. Child Health Care 30(1):57–65CrossRefGoogle Scholar
  36. 36.
    Cappelli M, McGrath PJ, Daniels T et al (1994) Marital quality of parents of children with spina bifida: A case-comparison study. J Dev Behav Pediatr 15:320–326PubMedCrossRefGoogle Scholar
  37. 37.
    Kronenberger WG, Thompson RJ (1992) Dimensions of family functioning in families with chronically-ill children: A higher order factor analysis of the Family Environment Scale. J Clin Child Psychol 19:380–388Google Scholar
  38. 38.
    Kazak AE, Clark MW (1986) Stress in families of children with myelomeningcele. Dev Med Child Neurol 28:220–228PubMedCrossRefGoogle Scholar
  39. 39.
    Seefeldt T, Holmbeck GN, Belvedere MC et al (1997) Socioeconomic status and democratic parenting in families of preadolescents with spina bifida. Psi Chi J Undergrad Res 2:5–12Google Scholar
  40. 40.
    Holmbeck GN, Shapera WE, Hommeyer JS (2002) Observed and perceived parenting behaviors and psychosocial adjustment in preadolescents with Spina Bifida. In: Barber BK (ed) Intrusive parenting: How psychological control affects children and adolescents. APA, Washington, pp 191–234CrossRefGoogle Scholar
  41. 41.
    Kronenberger WG, Thompson RJ (1992) Medical stress, appraised stress, and the psychological adjustment of mothers of children with myelomeningocele. J Dev Behav Pediatr 13:405–411PubMedCrossRefGoogle Scholar
  42. 42.
    Horton TV, Wallander JL (2001) Hope and social support as resilience factors against psychological distress of mothers who care for children with chronic physical conditions. Rehabil Psychol 46:382–399CrossRefGoogle Scholar
  43. 43.
    Kazak AE (1989) Families of chronically ill children: A systems and social ecological model of adaptation and challenge. J Consult Clin Psychol 57:25–30PubMedCrossRefGoogle Scholar
  44. 44.
    Barakat LP, Linney JA (1995) Optimism, appraisals, and coping in the adjustment of mothers and their children with spina bifida. J Child Fam Stud 4:303–320CrossRefGoogle Scholar
  45. 45.
    Bowers AM, Hayes A (1998) Mothering in families with and without a child with disability. Int J Disabil Dev Educ 45:313–322CrossRefGoogle Scholar
  46. 46.
    Edwards-Beckett J (1995) Parental expectations and child’s self-concept in spina bifida. Child Health Care 24:257–267CrossRefGoogle Scholar
  47. 47.
    King G, King S, Rosenbaum P, Goffin R (1999) Family centered caregiving and well-being of parents of children with disabilities: Linking process with outcome. J Pediatr Psychol 24:41–53CrossRefGoogle Scholar
  48. 48.
    Williams PD, Williams AR, Graff JC et al (2002) Interrelationships among variables affecting well siblings and mothers in families of children with a chronic illness or disability. J Behav Med 25:411–424PubMedCrossRefGoogle Scholar
  49. 49.
    Williams PD, Williams AR, Hanson S et al (1999) Maternal mood, family functioning, and perceptions of social support, self-esteem, and mood among siblings of chronically ill children. Child Health Care 28:297–310CrossRefGoogle Scholar
  50. 50.
    Anderson B, Ho J, Brackett J et al (1997) Parent involvement in diabetes management tasks: Relationships to blood glucose monitoring adherence and metabolic control in young adolescents with insulin dependent diabetes mellitus. J Pediatr 130:257–265PubMedCrossRefGoogle Scholar
  51. 51.
    Gavin L, Wysocki T (2005) Associations of paternal involvement in disease management with maternal and family outcomes in families with children with chronic illness. J Pediatr Psychol 31(5):481–489PubMedCrossRefGoogle Scholar
  52. 52.
    King S, Rosenbaum P, King G (1996) The Measure of Processes of Care (MPOC): A means to assess family-centered behaviors of health care providers. Hamilton, Ontario, Canada: McMaster University and Chedoke-McMaster Hospitals, Neurodevelopmental Clinical Research UnitGoogle Scholar
  53. 53.
    Rosenbaum P, King S, Law M et al (1998) Familycentered service: A conceptual framework and research review. Phys Occup Ther Pediatr 18:1–20CrossRefGoogle Scholar

Copyright information

© Springer-Verlag Italia 2008

Authors and Affiliations

  • Mehmet Kemal Kuşcu
    • 1
  • Banu Cankaya
    • 2
  1. 1.Department of Psychiatry Family and Community Mental Health UnitMarmara University Medical CenterIstanbulTurkey
  2. 2.Department of PsychiatryUniversity of Rochester Medical CenterRochesterUSA

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