Children with a rare congenital genetic disorder: a systematic review of parent experiences

ABSTRACT:

Background

Caring for a child with a chronic disease may be demanding and stressful. When a child has a rare condition, the impact of care on parents is amplified due to the rarity of the diagnosis. In order to address the lack of generalized and synthesized knowledge regarding parents’ experiences of having a child with a rare genetic disorder, and give a holistic picture of these experiences, a systematic review of the available qualitative research was conducted.

Methods

We performed a systematic review, including qualitative studies on parents of children with rare genetic disorders, published between 2000 and 2020.

Results

The review included 33 qualitative studies. Findings were synthesized and categorized according to three main themes: Parents’ experience

SUBMITTER: von der Lippe C 

PROVIDER: S-EPMC9575260 | biostudies-literature | 2022 Jan

REPOSITORIES: biostudies-literature