More psychosocial support needed for parents caring for a child with cystic fibrosis
Study examines caregiver burden and quality of life of parents who have children with cystic fibrosis
Fitzgerald C, George G, Somerville R et al (2018) Caregiver burden of parents of young children with cystic fibrosis. Journal of Cystic Fibrosis. 17, 1, 125-131.
Cystic fibrosis is an inherited disease caused by mutations in the cystic fibrosis trans-membrane regulator (CFTR) gene, leading to a deficiency or absence of functional CFTR proteins at the apical membrane of epithelial cells.
Few studies have explored the impact of informal care given to parents when caring for a child with cystic fibrosis.
The aim of this study was to examine caregiver burden and quality of life (QoL) of parents of young children with cystic fibrosis using the Care-related Quality Assessment of Life (CarerQol) questionnaire, and factors associated with increased caregiver burden.
This was a cross-sectional study of mothers and fathers of young children with cystic fibrosis. A total of 213 families enrolled in the Irish Comparative Outcomes Study study and were invited to complete the CarerQoL questionnaire and the costs questionnaire. The CarerQoL questionnaire was administered to parents at the recruitment stage and when the child reached four years old.
Of the 213 families recruited, at least one parent from 195 families completed the questionnaire. The questionnaire was completed by 130 mother-father dyads (response rate 68.8%). A total of 189 mothers (response rate 88.7%) and 137 fathers completed the questionnaire (response rate 72.5%).
For the negative dimensions of the CarerQoL-7D, 85% of mothers and fathers reported no relationship issues with their child. A total of 36.2% of mothers compared with just over 55% of fathers reported no issues with their mental health and 62% of mothers and 70% of fathers reported no issues with their physical health.
For the two positive dimensions of the CarerQoL-7D, only 5% of mothers and 8% of fathers reported no fulfilment when carrying out care-tasks and 9% of mothers and 13% of fathers reported no support when carrying out care-tasks when they needed it. A total of 14.7% of mothers reported some support when their partners reported a lot of support. Only 7% of fathers reported some support when their partners reported a lot of support. Mothers and fathers reported comparable scores for happiness.
Mothers in this study were more likely to report more problems with their mental health compared to fathers. Many parents reported good social support with care tasks when needed, however fathers were more likely to report more social support compared to mothers. In this study, clinical diagnosis did not predict increased burden of caregiving. However, being a mother was found to be independently associated with increased caregiver burden.
Increased need for psychosocial support
While previous studies have focused on the psychosocial impact on parents of having a child with cystic fibrosis (Hayes and Savage 2008, Besier et al 2011, Besier and Goldbeck 2011), this study has added to the body of literature by exploring quality of life and factors associated with increased caregiver burden.
The findings suggest that the impact of having a child with cystic fibrosis is greater for mothers and this is perhaps related to them being viewed as the primary caregiver for the child. Nevertheless, this suggests that mothers may have greater support needs while caring for their child with cystic fibrosis. Nearly two thirds of mothers and just under half of fathers reported problems with their mental health, which suggest this may be an area which needs to be targeted to support parents caring for their child with cystic fibrosis.
Most parents reported some fulfilment when carrying out care tasks and the majority felt supported to do these when needed which suggests that while practical support for families with a child with cystic fibrosis seems excellent, more attention needs to be paid to the psychosocial support provided.
- Besier T, Born A, Henrich G et al (2011) Anxiety, depression, and life satisfaction in parents caring for children with cystic fibrosis. Pediatric Pulmonology. 46, 7, 672-82.
- Besier T, Goldbeck L (2011) Anxiety and depression in adolescents with CF and their caregivers. Journal of Cystic Fibrosis. 10, 6, 435-42.
- Hayes C, Savage E (2008) Fathers' perspectives on the emotional impact of managing the care of their children with cystic fibrosis. Journal of Pediatric Nursing. 23, 4, 250-6.
Jane Chudleigh is programme director of child health and a senior lecturer in child health, City University of London. Written on behalf of the RCN's Research in Child Health community