Psychosocial and family functioning in spina bifida

Abstract

A developmentally-oriented bio-neuropsychosocial model is introduced to explain variation in family functioning and psychosocial adjustment in youth and young adults with spina bifida (SB). Research on the family functioning and psychosocial adjustment of individuals with SB is reviewed. The findings of past research on families of youth with SB support a resiliencedisruption view of family functioning. That is, the presence of a child with SB disrupts normative family functioning, but many families adapt to such disruption and exhibit considerable resilience in the face of adversity. Parents of youth with SB, and particularly those from lower SES homes, are at-risk for psychosocial difficulties. Individuals with SB are at-risk for developing internalizing symptoms, attention problems, educational difficulties, social maladjustment, and delays in the development of independent functioning. Emerging adults are often delayed in achieving milestones related to this stage of development (e.g., vocational and educational achievements). Methodologically-sound, longitudinal, and theory-driven studies of family and psychosocial functioning are needed, as are randomized family-based intervention trials, to promote adaptive functioning and better psychosocial outcomes in families of individuals with SB. Keywords spina bifida; psychosocial adjustment; family; children; adolescents; emerging adults Psychosocial and Family Functioning in Spina BifidaSpina bifida (SB) is a relatively common congenital birth defect that has a pervasive multisystemic impact on the physical, neurocognitive, psychological, and social functioning of affected individuals. Historically, most of the research on SB has focused on the physical and neurocognitive domains, with less attention paid to the psychological and social domains of functioning. However, it is well known that the clinical symptoms of SB place considerable physical, psychological, and social demands on the individuals and families involved Holmbeck et al., 2003;Kelly et al., 2008;Singh 2003]. Specifically, all of the following SB-related stressors likely have a significant and cumulative impact on individual and family functioning: (1) the cognitive and neurological features of SB, particularly the most common type of spinal lesion, myelomeningocele (e.g., executive functioning deficits, attention problems, learning difficulties; see Dennis and Barnes, in press), (2) the effects of SB on physical development [e.g., precocious puberty, short stature, and obesity are all more common in this population than in the general population; Dosa et al., 2009], (3) the multiple surgical procedures experienced by most individuals in this population (e.g., shunt revisions, orthopedic surgeries), (4) the difficulties with bowel and bladder management as well as ambulation challenges, (5) the characteristic

Interrelationships of sex, level of lesion, and transition outcomes among young adults with myelomeningocele

“…Research on transition outcomes among young adults with myelomeningocele in the USA is particularly restricted in scope. Guided by the bio-neuropsychosocial model of psychosocial adjustment in emerging adults with myelomeningocele, 29 this study aims to advance understanding of the interrelationships of sex, LOL, and transition outcomes in young adults with myelomeningocele. Our intent was to evaluate central variables that fall under the 'activities and participation' domain of the World Health Organization's International Classification of Functioning, Disability and Health framework 30 (e.g.…”

Family of People With Spina Bifida: Goals and Strategies

“…A possible reason for this result is that spina bifida imposes a condition that limits the ability of a person to be autonomous and participate actively in their development process. Therefore, parental strategies of action have possibly been interfered by the disability condition, such as delay in the acquisition of skills related to autonomy highlighted by Holmbeck and Devine (2010).…”

“…For example, Daves et al (2006) demonstrated that young people with myelomeningocele have a delay from two to five years on the achievements of autonomy when compared to people of the same age. In addition, parents of pre-teen with spina bifida claim that the sons and daughters have difficulty with their self-care, motivational factors and memory (Holmbeck & Devine, 2010).…”

Providing a Primary Care Medical Home for Children and Youth With Spina Bifida

“…57 Adolescence often increases family stress. 58 Spina bifida affects not only the patient but also his or her siblings, who are subject to stress and feelings of loss, guilt, frustration, and anger. These feelings have consequences for the sibling, for his or her relationship with the child with spina bifida, and for the entire family.…”