A study of the experiences of parents with 22ql1, of children with 22qll

This study seeks to develop understanding of the experiences of being a parent with
22ql 1, of children with 22ql 1. The participants were from the national clinic for 22ql 1
at a children's hospital in London, and a total of eight families agreed to take part in the
research from a total of 11 approached.
The problems associated with the 22qll syndrome are numerous, however heart
problems, cleft palate difficulties and learning disabilities are the three main features
associated with 22ql 1. Currently, most parents with 22ql 1 learn of their diagnosis as a
result of the birth of an affected child.
There are many factors which may influence the experiences of parents given the hugely
variable nature of the diagnosis, in addition to the added pressure of being a
disempowered population within society due to the prevalence of learning disabilities
within this group.
Given the multiple contexts of these individuals' lives it is considered that a qualitative
approach and method of research would be the most able to place the participant's
accounts in a social context that will give meaning to what they say. There is also no
previous research that has asked parents with 22ql 1 before to describe their experiences
using qualitative research methods, which makes this research novel and exploratory.
Interpretative Phenomenology Analysis (1PA) was used as a way to describe the different "types" and range of experience that participants have as it aims to capture the quality of
the individual experience.
Four main themes emerged from the analysis. The first theme "finding out you have
22q 11" related to how the participants described 22q 11 and how they reacted to the
diagnosis. The second theme "the impact of prejudice and ignorance" represented
negative attitudes the participants had experienced, in particular those associated with
learning disabilities and ignorance regarding the condition of 22ql 1. The third and fourth
themes "the challenges" and "coping with the challenges" described the multiple stresses
and demands of parenting and living with 22qll and the different ways that the
participants used to cope.

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