ABSTRACT
The survival for children with spina bifida has dramatically increased during the last 30 years. In Sweden today 40-50 adolescents with spina bifida are reaching adulthood each year the next 10 years. Children with spina bifida are from birth to adulthood followed by a multidisciplinary medical and paramedical team within the habilitation organisation. However, from the age of 18 this responsibility is discontinued, often with less readiness in adult medicine to meet the spina bifida adolescents and their special needs. Facing adolescence and adulthood both children and parents need a careful preparation from several points of view for the transition. It is also most important to prepare the adult medical disciplines about the special needs of this group. This process has to start early to reach successful management, including improvement in self-care.
Subject(s)
Meningomyelocele , Spina Bifida Cystica , Adolescent , Adult , Child , Continuity of Patient Care , Humans , Meningomyelocele/mortality , Meningomyelocele/psychology , Meningomyelocele/rehabilitation , Patient Care Planning , Spina Bifida Cystica/mortality , Spina Bifida Cystica/psychology , Spina Bifida Cystica/rehabilitation , Sweden/epidemiologyABSTRACT
Adherence to medical regimens was assessed in 67 pre-adolescents with spina bifida (8- and 9-year-olds; 37 boys, 30 girls), with mother, father, teacher, and health professional report. The Parent-Report of Medical Adherence in Spina Bifida Scale (PROMASB) was developed and includes multidimensional scales for the following tasks: catheterization, bowel care, skin care, medication, and ambulation. With few exceptions, the PROMASB has adequate psychometric properties. However, findings revealed modest to low correlations between respondents. Mothers and fathers reported significantly more noncompliance than teachers and health professionals. For the most part, all informants reported that most children were compliant across all tasks. Additional analyses based on qualitative data suggest that parents attribute compliance difficulties to motivational as well as attentional-memory factors.
Subject(s)
Patient Compliance/psychology , Personality Assessment/statistics & numerical data , Spina Bifida Cystica/psychology , Attention , Child , Humans , Motivation , Observer Variation , Parent-Child Relations , Patient Care Team , Psychometrics , Reproducibility of Results , Self Care , Spina Bifida Cystica/rehabilitationABSTRACT
Looking back over the span of years surveyed, it appears that a sad experience, even many years ago, commonly leaves residual pain. This can be modified by sympathetic support enabling parents and baby to interact, although such interaction is not without painful as well as pleasurable effects. Coming to terms with loss may take longer than was previously thought. This study highlights the need for bereavement care, which aims to leave families with positive rather than negative feelings. Perhaps, for mental health, the eventual feelings about past happenings are more important than the happenings themselves, although we have also shown that a greater insight into the needs of parents at the time modified their long-term feelings for the good, some even indicating that they had been enriched by the whole experience. The interviews suggested that parents who were involved with their baby's care were more able to accept the reality of their loss and to adjust to the experience of pain and grief than was possible for those who had been kept apart from their children. This supports conclusions by other grief counsellors (e.g. Warden 1983).
