The experiences and support needs of siblings of people with mucopolysaccharidosis.

Abstract

The mucopolysaccharidoses (MPS) are a group of rare genetic disorders characterized by progressive multisystem disease. We sought to identify the perceptions and support needs of siblings, who often have lifelong relationships and assume important roles for their brothers and sisters with MPS. We designed an online survey to ask siblings about their experiences through a series of Likert statements and open-ended questions. A mixed methods approach was used to analyze the results. We analyzed eligible responses from 97 participants, ages 18.1-61.2 years, who have brothers and sisters with MPS I, II, III, IV, and VI. Participants reported serving as caregivers for their siblings with MPS, at all ages. While over 62% of siblings often felt sad because they have a brother or sister with MPS, over 90% of siblings reported that they like their brothers and sisters and expressed feelings of pride. Siblings wanted information about MPS, guidance for caregiving activities, genetic counseling, and opportunities to connect with other siblings. Families and professionals should acknowledge the unique experiences and needs of siblings, include siblings in medical conversations and care plans when appropriate, and connect siblings to resources for informational and emotional support.