Perceptions about illness often don’t line up between children with spinal muscular atrophy (SMA) and their parents, with mothers and fathers often perceiving disease severity as worse than their children do, according to a recent study.
Importantly, children’s perceptions of their disease are closely associated with their quality of life, the study found. That highlights the importance of discussing children’s perceptions about their illness when providing healthcare to them.
The study, “Illness Perceptions in Pediatric Spinal Muscular Atrophy: Agreement between Children and their Parents, and its Association with Quality of Life,” was published in the Journal of Developmental and Physical Disabilities.
Illness perception broadly refers to how a person conceptualizes a disease — from the associated physical symptoms to the emotional toll and its curability. Generally, for people with health conditions, perceptions of their own illness can have a substantial impact on their quality of life, previous research has shown.
A person’s community can play a large role in shaping illness perceptions. For children with SMA who live at home, parents often serve as primary caregivers and also are major sources of information. Previous research in other diseases has indicated that patients tend to have a better sense of well-being when their own illness perceptions line up with those of their caregivers.
Now, researchers sought to learn more about the effects of illness perceptions in SMA. The team’s goal was to explore illness perception among children with SMA and among their parents, and examine how these perceptions impacted quality of life.
“With parents serving as primary caregivers of children with SMA, it is relevant to investigate to what degree children’s and parents’ illness perceptions are in agreement, and to explore how the level of child-parent agreement is related to children’s well-being,” the researchers wrote.
The team recruited 26 children with SMA and their parents. The majority (18) had SMA type 2, which is marked by symptoms that usually appear between 7 and 18 months of age. There was one child with SMA type 1, who exhibit symptoms at birth or by the age of 6 months, and seven with SMA type 3, which has a later onset. The average age of the children was 12.8 years, and 62% were male. Most (73%) children were enrolled in regular education.
Among the parents, the average age was 44.3 years and 77% were female. Most (81%) had completed some form of tertiary education.
Parents and children both filled out versions of the Brief Illness Perception Questionnaire (BIPQ). This assessment measures perceptions about an illness (in this case, SMA) on a 0-10 scale along eight dimensions, including concern regarding the illness and feeling in control of the illness or its treatment. Higher scores indicate a more severe perception of the disease.
The children also completed the Kidscreen-52, a questionnaire designed to assess quality of life in children. In Kidscreen-52, higher scores indicate better quality of life.
In general, there was not a lot of agreement between parents’ and children’s BIPQ scores. Overall, parents tended to have a more severe perception of SMA. For example, parents had significantly higher scores on questions related to the extent to which SMA symptoms are experienced (6.6 vs. 5.1) and how much SMA affects the child emotionally (4.1 vs. 2.9).
“Our study suggested that parents in general had more negative illness perceptions about SMA than their children, especially with regard to the physical symptoms and the emotional impact of the disease,” the researchers concluded.
The researchers speculated that this could be because parents tend to attribute negative experiences and emotions to SMA, when that may not necessarily be the case.
“For instance,” they wrote, “symptoms of fatigue, irritability or listlessness may be caused by SMA, just as they may arise from events experienced at school, in interaction with peers or after a lost game of wheelchair sports.”
Children’s quality of life scores were closely associated with their BIPQ scores, specifically with BIPQ domains related to symptoms, emotions, and overall impact of SMA on life.
“We found high associations between children’s QoL [quality of life] and their perceptions of illness consequences, severity of symptoms and emotional representations,” the researchers wrote.
“In light of the strong association of children’s illness perceptions with their QoL clinicians should openly assess, discuss and if necessary modify the child’s perceptions,” they added.
Conflicting results were found when the researchers analyzed whether parents and children having more similar BIPQ scores was associated with better quality of life. For some parent-child pairs, more similar BIPQ scores were indeed associated with higher scores on quality of life. However, for other parent-child pairs, the opposite pattern was observed.
“This makes the relation between parent-child agreement in illness perceptions and the child’s QoL difficult to interpret,” the researchers wrote.
The team noted that this study is the first to assess illness perceptions in children with SMA and their parents.
“The absence of similar studies for comparison, the modest sample size and cross-sectional study design limit the interpretation and generalizability of our findings,” they wrote, adding, “To increase generalizability of these findings, follow-up studies with larger samples are called for.”
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