You Don’t Know Until You Get There”: The Positive and Negative “Lived” Experience of Parenting an Adult Child With 22q11.2 Deletion Syndrome
Yesterday, Jane Goodwin submitted her PhD for examination. The thesis is titled "From general developmental disability to 22q11.2 deletion syndrome: Understanding parental experiences - A mixed methods analysis". It is a great achievement that we would like to celebrate. Jane has written a summary of one of the research papers included in the thesis below. This paper has been accepted for publication in Health Psychology. For a full text of the article, click here.
Parents of children with disabilities are at particular risk of mental health problems and stress compared to family members of healthy children. These challenges continue as the child grows into adulthood. However, positive psychological changes can occur as a result of struggles. Little is known about the experiences of parenting a child with 22q11.2 deletion syndrome (22q11DS), even though it may occur as frequently as 1 in 992 births (Grati et al., 2015). 22q11DS presents challenges for parents because it is a complex genetic syndrome associated with more than 180 features. It is not well-known and thus there is often a delayed diagnosis. Therefore, we aimed to explore the ‘lived’ experience of parents on their journey with 22q11DS.
We interviewed 8 parents who had an adult child with 22q11DS and asked about their experiences, including positive and negative experiences of support; if and how they have changed; and how they expect their future will be influenced by their child and related experiences. The parents had children aged 20 – 29 years. We transcribed all the interviews verbatim, and analysed them using technique known as Interpretative Phenomenological Analysis (IPA). IPA aims to interpret how individuals make sense of their experiences as related to a particular phenomenon. Findings are grouped into “themes” that should give an impression of the people’s lives as related to the subject being studied; in this case, parenting a child with 22q11DS. Overall, we found a theme Losing “I” Finding “self” which overarched six smaller themes:
Prior to the diagnosis, stigma invades the participants’ lives because not knowing leaves them the target of judgement, or victims of indifferent professionals.
“They were very critical as to what I did or what I ate during my pregnancy or what medication I took . . . they make you feel really uncomfortable.”
2. Where is “I”
Participants lose themselves in the management of their child’s health, behaviour, and needs. There is no respite from their caregiving role, and as such, relationships with family and friends change.
“You’ve just got to keep on looking after your family. You do not get time out, you do not get any super answers, or anything like that.”
3. Conflicting loss, grief, and guilt
The participants reflect on the life that could have been without 22q11DS and mourn each milestone that should have passed.
“I think, if you just had these few bits of chromosome, a few bits of DNA, you’d probably be something really extraordinary. And it’s sad.”
4. Angry advocacy
Participants constantly fight the layers of obstruction and lack of awareness of the syndrome to receive the care their child needs.
“There’s a huge range of symptoms . . . so where are we? Dunno . . .What’s the prognosis? Dunno. What causes it? Dunno . . . What do we do now? Dunno. What happens in the long term? Well, a few develop schizophrenia . . . So how can we tell? You cannot. You do not know until you get there.”
5. Pragmatic acceptance
Participants reach an uneasy peace with the ambiguity of their child’s future. They re-evaluate their expectations and learn to celebrate success for their child.
“There’ll be a few more bumps. I’m not too concerned, although I really have no idea what the future brings, so . . . definitely say a lot of Hail Marys . . . it’s got me this far, I’m sure it’ll get me through a few more years.”
6. Finding authenticity and purpose
Participants experience psychological growth; a positive change in psychological functioning, such as finding new meaning. They show empathy, humility, gratitude, and pride as a result of their experiences.
“I’ve had the big transformation. I’m really pleased with that because looking back I do not like the mother I would have been.”
It is important to remember that these findings are not the whole experience, nor are they everyone’s experience. Rather, they give us insight so that we can conduct further research with the aim of improving the experience of parenting a child with 22q11DS. We also hope that our results can enlighten healthcare professionals in buffering against stigma, blame, and self-doubt; and help them to foster psychological well-being in parents who have a child with 22q11DS.
Full citation: “You Don’t Know Until You Get There”: The Positive and Negative “Lived” Experience of Parenting an Adult Child With 22q11.2 Deletion Syndrome. Goodwin, Jane; McCormack, Lynne; Campbell, Linda E.
Health Psychology, Sep 22 , 2016, No Pagination Specified. http://dx.doi.org/10.1037/hea0000415