Abstract
Background and aims: This study aimed to identify problems as experienced by Dutch children and adolescents with a mitochondrial disease, their parents and siblings. We chose to describe these problems from the patients' perspective as we thought this would give optimal input for care improvement.
Methods: A qualitative design using the grounded theory approach, involving single individual open interviews with 9 children/adolescents with a mitochondrial disease, 16 mothers, 11 fathers and 7 siblings.
Results: Respondents mentioned lack of energy as the most basic problem in having a mitochondrial disease, leading to multiple varied problems in all areas of daily life, intertwining the physical, psychological, social and spiritual human domain.
And where one problem often led to other problems.
For children we determined the themes: ‘lack of energy’, ‘crossing boundaries and frsutrations’, ‘vulnerability and social participation’ and ‘stress and coping’.
For parents we determined:‘parenting and caring’, ‘continuing stress’, ‘loss of social participation’, ‘loss of dreams and future’, ‘stress and coping’ and ‘lack of health care’.
For their family we determined: ‘familystress’ and ‘familycoping’.
Conclusions: In this first study on this theme we conlude that Dutch children/ adolesecents with a mitochondrial disease experience a variety of problems in the physical, psychological, social and spiritual human domain and in the field of health care, as wel as their parents and siblings. The results can be used as a challenge and guide for improving health care, education and research and might result in an improved quality of life.
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Noorda, G., Van Achterberg, T., Smeitink, J. et al. 73 Problems of Children and Adolescents with a Mitochondrial Disease, Their Parents and Siblings. The Patients Perspective.. Pediatr Res 68 (Suppl 1), 40 (2010). https://doi.org/10.1203/00006450-201011001-00073
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DOI: https://doi.org/10.1203/00006450-201011001-00073
