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

Multiple child food hypersensitivity impacts positive adjustment in parents

© 2017, Springer Science+Business Media New York. The physical impacts of food hypersensitivities (e.g. food allergy, food intolerance) encompass wide ranging but individually specific reactions. In contrast, the psychological impact of such illnesses extends beyond the individual who suffers the sensitivity. No Australian studies have examined the psychosocial impact of parenting a child with food hypersensitivities. The aim of this study was to ascertain differences in the psychosocial profile of parents raising a food hypersensitive child. Australian parents were targeted through three national support organisations and answered questions regarding their psychological health. Of a total of 990 respondents, 599 had children. These families comprised 1316 children aged 0–18 (M = 7.63 years) and more than half (n = 393) of these families were managing a child with a food hypersensitivity. Parents showed no differences in measured distress. In contrast, positive adjustment was higher for parents of food intolerant children and children with both food allergy and food intolerance, compared to those with non-food hypersensitive children. Moreover parents of children with combined food hypersensitivities reported a greater degree of positive change. The finding that parents of food hypersensitive children were not reporting higher levels of stress than parents without a food hypersensitive child is in stark contradiction to international studies examining both food hypersensitivity and parents of children with a chronic disease more generally. However, it appears that the complexity of the food hypersensitivity had a positive impact on adjustment with parents of children with multiple types of food hypersensitivity reporting greater positive adjustment outcomes

Exhausted Parents: sociodemographic, child-related, parent-related, parenting and family-functioning correlates of parental burnout

Parental burnout is a specific syndrome resulting from enduring exposure to chronic parenting stress. It encompasses three dimensions: an overwhelming exhaustion related to one’s parental role, an emotional distancing with one’s children and a sense of ineffectiveness in one’s parental role. This study aims to facilitate further identification of antecedents/risk factors for parental burnout in order to inform prevention and intervention practices. In a sample of 1723 french-speaking parents, we examined the relationship between parental burnout and 38 factors belonging to five categories: sociodemographics, particularities of the child, stable traits of the parent, parenting and family-functioning. In 862 parents, we first examined how far these theoretically relevant risk factors correlate with burnout. We then examined their relative weight in predicting burnout and the amount of total explained variance. We kept only the significant factors to draw a preliminary model of risk factors for burnout and tested this model on another sample of 861 parents. The results suggested that parental burnout is a multi-determined syndrome mainly predicted by three sets of factors: parent’s stable traits, parenting and family-functioning