Difficulties Experienced by Turkish Parents and Their Coping Strategies: Children With Mucopolysaccharidosis.

PURPOSE: The purpose of this study is to determine the parents' lived experiences whose children have Mucopolysaccharidosis (MPS) by using Husserl's phenomenology.

DESIGN AND

METHODS

A phenomenology method was used as a qualitative research design in the study. The study included parents of 10 children who received weekly enzyme replacement therapy at a university hospital's paediatric endocrinology clinic. The data were collected using an in-depth interview method including an introductory information form and a semi-structured interview form. The interviews were recorded on a voice recorder and converted into written documents after the interview.

RESULTS

The average age of the children was 8.8 ± 1.8; the average age of the mothers was 32.6 ± 3.6; and the average age of the fathers was 36.0 ± 3.5. The data analysis identified the following three main themes: (1) difficulties, (2) concerns, and (3) coping.

CONCLUSIONS

This study determined that parents of children with an MPS diagnosis had many difficulties related to multi-systemic problems (orthopaedic problems, vision and hearing problems, speech disorders, cardiac problems) caused by the disease.

PRACTICE IMPLICATIONS: Parents should receive support from healthcare professionals to develop coping strategies that are appropriate for the physical and psychological difficulties experienced and to comply with the disease.