The Lived Experiences of Siblings of Children With Complex Medical Needs: An Interpretative Phenomenological Analysis

Children with complex medical needs (CMN) denotes the most medically fragile children and young people with the greatest intensive health care needs. Following advances in healthcare, child mortality has been in decline since the 1980s leading to an increase in the number of children with life-limiting and life-threatening conditions. Their siblings experience certain challenges as a result of having a brother or sister with CMN. While some voluntary organizations offer support, there is a current lack of understanding and guidance as to how schools and Educational Psychologists can help meet their needs.

The current study sought to explore the experiences of siblings using interpretative phenomenological analysis to understand the impact of having a sibling with CMN on family and school life. A sample of 6 well siblings aged 11 to 15 years old participated in individual online semi-structured interviews. Five master themes were identified from the data: ‘My Family Life’, ‘My Growth and Development’, ‘The Importance of Relationships at School’, ‘Aspects of School That Help and Hinder’ and ‘Time for Change’.

The findings broadly reflected existing research: well siblings undertook caring responsibilities associated with their brother or sister with CMN; they had close, loving relationships with their family; they experienced disrupted sleep and worried about their sibling when they were ill; and they felt that friends and teachers did not understand their challenges. Novel findings included that carers in the home could provide respite to the whole family, school rules and policies could both help and hinder their school experience, and diversity and inclusion were important aspects of well siblings’ ideal school.

The findings were contextualized using Bronfenbrenner’s ecological systems theory as a framework, with links to attachment theory and post-traumatic growth. Implications for schools included recommendations around homework deadlines, consequences for being late and providing sibling support groups; it was recommended that Educational Psychologists work systemically with schools to support teachers’ understanding of the needs of siblings of children with CMN, to gain the views of well siblings and to signpost schools and families to further sources of support.