Parents’ experiences of caring for a young person with neurofibromatosis type 1 (NF1): a qualitative study

Neurofibromatosis type 1 (NF1) is a variable and unpredictable genetic condition that can lead to changes to an individual’s appearance. Research has started to explore children’s and young people’s experiences of living with the condition; however, there is a lack of research with parents. This exploratory qualitative study set out to examine parents’ experiences of caring for a young person with NF1. Seven parents took part in semi structured interviews which were subjected to a thematic analysis. Three key themes were identified which related to managing the uncertainty of the condition, the impact of an altered appearance, and others’ awareness and understanding of NF1. Parents felt that understanding NF1 themselves in order to support their child was beneficial whilst a perceived lack of understanding by others was cited as a significant challenge. Parents require trustworthy information and also more widely call for greater understanding and awareness of the condition

The invisible child: sibling experiences of growing up with a brother with severe haemophilia - an interpretative phenomenological analysis.

Introduction: Haemophilia is an inherited chronic condition that causes bleeding in the joints and soft tissue. Healthy siblings growing up in the family of a person with haemophilia can be affected socially and psychologically. Aim: To explore qualitatively the experiences of healthy siblings who grew up with a brother with severe haemophilia. Methods: 11 healthy siblings (10 female, 1 male) who grew up with a brother with severe haemophilia A were recruited via the Haemophilia Society UK. The verbatim transcripts of individual semi-structured interviews were analysed using interpretative phenomenological analysis (IPA). Results: Three themes were identified: lack of parental attention, negative social emotions, and carrier anxiety. Participants described having engaged in attention seeking behaviours because they felt they lacked parental attention. They also described the resentment, anger and frustration they felt about the effect their brothers’ haemophilia had on their lives. Female participants described the impact their carrier status or lack of it had on their lives. Conclusion: These findings could be translated into better advocacy and support for siblings through haemophilia centres. More research is also needed on how healthy siblings are affected by haemophilia, including studies guided by family systems theory.N/

Parents' psychological adjustment in families of children with Spina Bifida: a meta-analysis

BACKGROUND: Spina Bifida (SB) is the second most common birth defect worldwide. Since the chances of survival in children with severe SB-forms have increased, medical care has shifted its emphasis from life-saving interventions to fostering the quality of life for these children and their families. Little is known, however, about the impact of SB on family adjustment. Reviewers have struggled to synthesize the few contradictory studies available. In this systematic review a new attempt was made to summarize the findings by using meta-analysis and by delimiting the scope of review to one concept of family adjustment: Parents' psychological adjustment. The questions addressed were: (a) do parents of children with SB have more psychological distress than controls? (b) do mothers and fathers differ? and (c) which factors correlate with variations in psychological adjustment? METHODS: PsycInfo, Medline, and reference lists were scanned. Thirty-three relevant studies were identified of which 15 were eligible for meta-analysis. RESULTS: SB had a negative medium-large effect on parents' psychological adjustment. The effect was more heterogeneous for mothers than for fathers. In the reviewed studies child factors (age, conduct problems, emotional problems, and mental retardation), parent factors (SES, hope, appraised stress, coping, and parenting competence), family factors (family income, partner relationship, and family climate), and environmental factors (social support) were found to be associated with variations in parents' psychological adjustment. CONCLUSION: Meta-analysis proved to be helpful in organizing studies. Clinical implications indicate a need to be especially alert to psychological suffering in mothers of children with SB. Future research should increase sample sizes through multi-center collaborations

The quality of primary relationships in families of children with spina bifida

Contains fulltext : 55720.pdf ( ) (Open Access)1 p

De prevalentie van middelengebruik bij jongeren met een licht verstandelijke beperking en ernstige gedragsproblemen in een orthopedagogisch behandelcentrum

Contains fulltext : 158055.pdf (publisher's version ) (Open Access)13 p