Is it possible to separate the quality of life of the infant and the quality of life of the parents?
One of the main questions I had when starting this process was whether it was even possible to specifically assess the infant’s quality of life (QoL). There are questionnaires that are targeted to the infant toddler quality of life such as the Infant Toddler QoL, Eczema QoL, Asthma QoL questionnaires, etc.
There was interesting discussion in our focus group of health care providers on whether and how it was possible to separate the two. The general opinion expressed was one of skepticism and of challenges to accurately assessing the quality of life.
With this in mind, there were a few codes that I developed related to participant comments. After my first pass, my codes were longer phrases summarizing participant quotes. The initial codes I used were skepticism about separating quality of life, quality of life separation is possible as child grows older, quality of life as a family unit, quality of life assessment is subjective.
Eventually I felt that it was better to create an overarching category of quality of life with codes falling into that category. The primary code for this topic was “parent vs infant quality of life.” The final subcodes were “interlinked”, “separation over time”, “subjectivity.” I chose to integrate the skepticism about separating QoL and QoL as a family unit code into the “interlinked” subcode.
My definitions of the codes and subcodes are as below:
Parent vs infant quality of life: Participants identified both features of quality of the parent’s quality of life (time, financial stress, achieving personal goals) and the infant’s quality of life (relationship with parents, communication, frustration). However they expressed varying opinions about how these two QoLs interacted with each other.
Interlinked: Participants felt that the child’s quality of life was highly dependent on the parent’s quality of life.
Examples include “Your quality of life, you know might as well be attached.”
“I think that’s rare.”
“when I think of quality of life I think it starts in the family"
Separation over time: Although participants felt that the two QoLs were tightly linked, they allowed that they grow distinct over time.
Example: “the quality of life for the child […] doesn't really manifest until they're a little bit older in that 1-2 age.”
“Yea but I think up to a certain degree maybe 1, maybe 2, you can't separate”
Subjectivity: Another participant suggested that the metric of quality of life is inherently subjective based on which person is conducting the assessment.
Example: “It's really hard to separate because we're going to be automatically applying what's important to us, just as the parents are going to be applying what's important to them in gauging quality of life.”
Memo
This group expressed a great deal of skepticism about separating QoL of the infant and the parent. In reflecting on the focus group conversation, I realized that many of the comments were actually made by one participant who felt strongly about this issue. This highlighted a potential weakness of focus groups where one person’s strong opinion can dominate the conversation and cut off avenues for exploration.
When we open coded the transcript in class, one person brought up that the provider comment of “we see families” is telling of the healthcare provider perspective. Specifically, healthcare providers see patients as a family unit in clinic – they would rarely if ever see the infant alone away from the parents. This makes it difficult for this group to have a perspective on just the infant’s experience and what factors can be used to evaluate that experience.
In a later focus group conducted with teachers and administrators in a deaf/HoH school that has early start programs for kids under 3, the concept of a child specific quality life was readily embraced. These participants had worked with children who are away from their parents during the day. I have not formally coded this transcript, but my recollection of the conversation is that there was a much deeper understanding of infant toddler communication and behaviors such that each child’s well being could be assessed at least somewhat independently of their caregiver’s situation.
As a final note, I was recently speaking with a pediatrician who works with a number of children with disabilities. She mentioned that frequently the infants she sees are totally happy and oblivious to their condition while the parents are stressed out and concerned. This is may be an example worth exploring in the future – parents and other family members may have a poor quality of life while their toddler has relatively preserved QoL.