Understanding the spiritual and emotional needs of siblings of children who have a rare disease through the lens of Maslow’s hierarchy of needs

Abstract

ABSTRACT This mixed methods research project with 16 participants focused on the spiritual and emotional needs of 8–16 year olds who had a sibling with a chronic rare disease was undertaken by the Centre for Paediatric Spiritual Care at Birmingham Children’s Hospital. Three research tools were included: Kidscreen 52 Health-related quality of life questionnaire with proxy version, 1–1 semi-structured interviews and focus groups. The data was viewed through the lens of Maslow’s Hierarchy of Needs and Nye’s interpretation of them. Key findings showed that having a sick child impacted the well child in all the areas of Maslow’s hierarchy but particularly esteem and self-actualisation needs. Early interventions are recommended to support the well sibling to seek to ameliorate the impact on spiritual and emotional needs of having a chronically sick sibling. Advocacy and awareness raising is beneficial.