Life satisfaction of young adults with spina bifida

Abstract

This study concerns life satisfaction and its determinants in Dutch young adults with spina bifida (SB). Data on life satisfaction (Life Satisfaction Questionnaire ) were related to hydrocephalus, lesion level, disabilities, and demographic variables. In total, 179 young adults with SB participated (41% male, age range 16-25y; 79% SB aperta, 67% hydrocephalus [HC], 39% wheelchair-dependent). Most were satisfied with their life as a whole (24% dissatisfied). No difference was found from a population reference group (28% dissatisfied). Highest proportions of dissatisfaction were found for financial situation (44%), partnership relations (49%), and sex life (55%). Least dissatisfaction was found for contact with friends (17%) and families (15%). Young adults with SB and HC were more satisfied with their financial situation and family life but were less satisfied with self-care ability and partnership relations than those without HC and the reference group. However, except for self-care ability, relationships between life satisfaction and having SB were weak. In conclusion, self-care ability and partnership relations were rated least favourable and may need more attention from care providers. Overall, SB does not seem to be an important determinant of life satisfaction.Spina bifida (SB) is a congenital condition that may result in a wide variety of physical and cognitive limitations. 1-7 After the initial hazardous years, the survival rate for a person with SB is near normal, 8,9 although hydrocephalus (HC), bladder management, and kidney-sparing always remain an issue. 7,9 Several authors have proposed that chronic conditions such as SB confront youngsters with additional barriers in the transition from adolescence to adulthood compared with their typically developing peers. 10-12 They may find themselves, for example, disadvantaged with regard to career opportunities or finding a partner. Better insight into the quality of life (QoL) of young adults with SB might identify support needs and might, thereby, provide a basis for improving the support system. Knowledge of the QoL of persons with SB is also relevant with regard to today's policies of aborting pregnancies early in gestation, the use of new operation techniques such as in utero closure of the neural tube, 13 and deciding whether or not to treat early after birth. Such decisions by medical professionals are based on, among other considerations, the expected long-term QoL of the patients involved. However, professionals tend to rate the QoL of their patients much lower than the patients themselves do. 14 Only limited research into the QoL of persons born with SB is available, and the results are equivocal. Some authors 15 found that the healthrelated QoL of their study population was below normal, whereas others concluded that QoL was good 10 and comparable to that of persons without SB. 11,16 QoL is a notion with a rather broad meaning, but it is usually associated with well-being or life satisfaction. 17 Defining life satisfaction as an element of QoL, ra...

Resilience, self-esteem and self-compassion in adults with spina bifida

“…This is consistent with previous research, in that disability severity can cause frustration and distress. 6 The findings that self-esteem and self-compassion correlate with resilience, whereas psychological distress impedes this process, are also consistent with previous research that demonstrates strong associations between these positive psychological variables and life satisfaction. 8,9,11 More specifically, having a salient source of positive self-regard and an ability to be kind to oneself is likely to promote positive adaptation when faced with adversity.…”

“…In combination these resources may help to buffer the physical and emotional impact of their disability. 6 The current findings have important implications for clinicians working with this population. Clinicians should assess psychological constructs such as self-esteem and self-compassion, and target interventions to promote these protective processes and thereby reduce the risk of developing symptoms of distress, including depression.…”

“…Self-esteem has been identified as an important coping trait among adolescent samples with SB. 6,7 However, recent evidence with non-clinical samples suggests that self-esteem can also be dysfunctional, with grandiose or inaccurate self-concept resulting in poor psychological outcomes, including social isolation. 8 Furthermore, self-esteem is often contingent on successful attainment and can therefore fluctuate, depending on one's successes or failures.…”

Expectation of life and unexpected death in open spina bifida: a 40‐year complete, non‐selective, longitudinal cohort study

“…[14][15][16] Improvements in management mean that about 75% of individuals now reach early adulthood, 8,10 and it is likely that future studies will show greater long-term survival. However, our cohort is the first to be followed up to the fifth decade, the first with complete ascertainment, and the first to show continuing high mortality in adulthood and a high rate of unexpected death.…”

“…In three studies, the maximum age of survivors was less than 25 years, [10][11][12] and in one cohort 20% were lost to follow-up. 10 It has been widely suggested that, after the initial hazardous years, survival in spina bifida is near normal, [14][15][16] but there is no empirical evidence to support this. A prognosis for survival that lacks information on the mortality in older individuals may be over-optimistic.…”