The health and socio-emotional problems of parents with children with sex chromosome aneuploidies, in a social-ecological point of view

Abstract

This master thesis consists of two papers: the first is theoretical and the second is empirical. The introduction section presents a theoretical background and an explanation of methodology decisions with rationales, and the thesis concludes with a final summary. A brief description of the two articles: Paper 1: Understanding of disability and coping strategies of parents with children with disabilities, in a social- ecological perspective Perceptions of what constitutes the term “disability” and the description of who are considered disabled will vary from one historical era to another, and also from one community to another within the same era. This paper presents some of the welfare- state developments which as influenced ways of thinking and assessing understandings of “disability” and “impairment”. In light of Antonovsky’s theory of salutogenesis, this paper explores the stress dimensions and factors that parents of children with disabilities are exposed to, and how ‘sense of coherence’ and coping strategies are key strategies in managing difficult life situations. Life situations of parenting a child with a disability may have a negative impact on parents’ sense of coherence. At the same time, different coping strategies may help retain parents’ health, and prevent the occurrence of stress and diminished psychological health. Paper 2: The health and socio- emotional problems of parents with children with sex chromosome aneuploidies The purpose of this empirically-based study is to augment our knowledge about psycho-social health among parents of boys with sex chromosome disorders. Using a quantitative methodological approach, this paper explores and examines some of the challenges parents and children with sex chromosome aneuploidies have. Previous research of boys with sex chromosome aneuploidies (SCA) shows a wide range of problems, both socially, cognitively and psychologically. With the first paper as a theoretical theory foundation, this second paper shows that parenting a child with SCA may affect parents’ sleep quality, and that there is a correlation in poor social and emotional functioning in children as well as diminished mental health in parents. Poor sleep quality is also connected with low personal well-being scores, high scores in health complaints and a high number of days with health complaints. Findings also show that mothers report lower scores regarding health, satisfaction in life and sleep quality than fathers. Mothers of boys with SCA especially are at greater risk in experiencing stress symptoms, reporting less satisfaction of life and lower life quality measures.