Development And Psychometric Properties Of A Quality Of Life Questionnaire For Siblings Of Children With Cancer: A Mixed-Method Study

Abstract

Background: Family members of children with cancer experience stressful and unpredictable conditions in their lives. This condition can impact on family members’ roles, communications, and values and disrupt the family’s quality of life (QoL), especially the QoL of the healthy siblings of the sick child. The purpose of the study was to develop a QoL Questionnaire for siblings of children with cancer and to evaluate of its psychometric properties.

Methods: This is a mixed-method study with an exploratory sequential design. In the qualitative phase, the concept of QoL in siblings of children with cancer and its dimensions were explored by interviewing 17 adolescents, four mothers and four oncology nurses. Subsequently, the phase of integrative review for access to similar questionnaires was conducted. In the next phase, the results of integrating review and the qualitative phase was integrated. In the quantitative phase of the study, the face, content, and construct validity, reliability, and feasibility of the questionnaire were evaluated.

Results: From the qualitative phase, five themes were extracted. After integrating the results of two first phases, an item-scale pool with 145 items was created. Following exploratory factor analysis (EFA), 46 items remained in the questionnaire and six factors were extracted: “adaptation to condition”, “psycho-emotional functioning”, “individual functioning”, “illness burden on the family”, “daily life  challenges” and “spiritual adjustment.”

Conclusions: The Iranian version of the QoL questionnaire for siblings of children with cancer was developed. It showed to be a valid and reliable questionnaire. It can measure the QoL of adolescent siblings of children with cancer in our context. It is suggested that in the future research, further development was done in various age groups of children, and in different societies.