Primary and Secondary Caregiver Reports of Quality of Life in Pediatric Asthma: Are they Comparable?

Abstract

Purpose This study aimed to compare primary and secondary caregiver QOL within families of children with asthma and determine the potential importance of including secondary caregiver QOL in clinical and research settings. Methods Participants included 118 families of children with asthma that had primary and secondary caregivers. Families completed measures in a single research session. Caregivers reported on QOL, psychological functioning, and family burden; children completed a measure of QOL. Child lung function was determined from objective spirometry. Adherence to prescribed controller medication was measured for 6 weeks following the research visit. Results Primary caregiver QOL was significantly lower than secondary caregiver QOL (Mean overall QOL of 5.85 versus 6.17, p < .05). Better medication adherence was associated with higher primary caregiver QOL (ρ = .22, p = .02); secondary caregiver QOL, not primary caregiver QOL, was positively associated with child QOL (ρ = .20, p = .03). Families with discrepant QOL scores between caregivers (difference in scores of at least .50) were characterized by more family burden and primary caregiver psychological symptoms. Conclusions Differences in QOL scores between caregivers may be a reflection of primary caregivers’ greater investment in daily asthma management. In families reporting low burden and few psychological difficulties in the primary caregiver, QOL assessments from either caregiver may may be informative and representative of how parents are adapting to child asthma. In families experiencing high levels of burden or more primary caregiver psychological difficulties, QOL reports from secondary caregivers may not be as clinically meaningful.

Children with an Autism Spectrum Disorder and Their Caregivers: Capturing Health-Related and Care-Related Quality of Life

“…Although we have to be careful drawing firm conclusions, also given the small sample size, this finding in itself could be clinically relevant, stressing the differences in time investment, perceptions, experiences, and perspectives of the caring situation between primary versus secondary caregivers that might give rise to problems in family functioning. Everhart et al (2018), for instance, found that differences in QoL scores between both caregivers in families of children with pediatric asthma were associated with more family burden and psychological problems in the primary caregivers.…”

Caregiving and Union Instability in Middle and Later Life

“…Furthermore, some research evidence suggests that parents of children with long-term illnesses and disabilities often face an increased risk of union dissolution compared to parents of children without such disabilities and that this continues into the child's adulthood (e.g., Hartley et al, 2010). As well, the few studies that have compared caregiving outcomes among primary and secondary caregivers report greater burden and stress among primary than secondary caregivers (Bédard et al, 2001;Everhart, Greenlee, Winter, & Fiese, 2018). Yet the presence of secondary caregivers as well as of other supportive resources including formal in-home and other care services may serve to reduce the burden and thus, stress experienced by primary caregivers (Verbakel, Metzelthin, & Kempen, 2018).…”

Effect of parental depression on asthmatic children’s problem behavior and academic performance: using actor and partner interdependence model of parental variables

“…In addition, the results of the hypothesis test according to household incomes showed that the influence of maternal depression on fathers' marital conflict was found to be large in the group that earns less than the average income. The reason is that since asthma is a disease that requires repetitive and long-term treatment, and the financial burden of parents raising children with asthma is relatively greater than that of parents raising normal children [3], the level of depression of mothers in families of lower income is high due to financial burden related to the treatment process of children and it also influences fathers who are responsible for financial activities of the family. Accordingly, it is necessary for the government to prepare a financial support system for families raising asthmatic children.…”

“…Authors' information 1 Nursing Science, Jinju Health College, 51, Uibyeong-ro, Jinju-si, Gyongsangnam-do 2 Department of Nursing, Changwon National University, 20 Changwondaehak-ro, Uichang-gu, Changwon, Gyeongsangnam-do, Korea 3 College of Nursing Science, Kyung Hee University, 24 Kyungheedae-ro,…”

“…In many cases, asthma begins in early-childhood (43.2% of asthmatic patients are below the age of 12) and continues to adulthood [2]. The health issues of children with asthma is emerging to be a social problem because in many cases it is a disease that requires repetitive and long-term treatment, and the financial burden of parents raising children with asthma is relatively greater than parents raising normal children [3]. Furthermore, parents of asthmatic children have the greater psychological burden of performing many roles since they experience the disease process and growth of their children at the same time [4].…”