Understanding the spiritual and emotional needs of siblings of children who have a rare disease through the lens of Maslow's hierarchy of needs. Issue 3 (3rd July 2021)

• Record Type: Journal Article
• Authors: Nash, Sally; Nash, Paul; Bryson, Laura; Gray, Susannah
• Is Part Of: International journal of children's spirituality. Volume 26:Issue 3(2021)
• Page Start: 158
• Page End: 172
• Publication Date: 2021-07-03
• Subjects: Maslow -- rare diseases -- siblings -- spiritual needs -- emotional needs; Moral education -- Periodicals; Religious education -- Periodicals; Spirituality -- Periodicals; Children -- Religious life -- Periodicals; 155.25
• DOI: 10.1080/1364436X.2021.1919061
• Languages: English
• ISSNs: 1364-436X

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.