Coping, expressed emotion and quality of life in families with young people with cystic fibrosis

• Main Author: Williams, Sadie
• Published: University of East Anglia 2007
• Subjects: 362.19892372
• Online Access: http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.585533

Background: Cystic fibrosis (CF) is a serious lung disease affecting the exocrine glands of the body (MacLusky & Levinson, 1990). It predominately affects Caucasians and is genetically transmitted through recessive genes. Affecting one in 2,500 live births it is eventually fatal (Lissauer & Clayden, 1997). The way a young person manages CF may depend on their coping ability. Kiewer and Lewis (1995) suggest that coping may be modelled by parents to their offspring. In turn primary caregivers' coping may be related to the level of expressed emotion (Greenley, 1986). Research suggests that coping may impact on a young persons' health related quality of life (e.g. Staab et al., 1998). Aims: The current study was to examine coping, expressed emotion and quality of life in families with CF. Method: This study utilised a cross sectional design. Thirty-four young people (age range 6-16 years) with CF (males N=12, females N=22) and their primary caregiver were recruited from four CF clinics. Measures of coping, expressed emotion and health related quality of life (HRQOL) were completed. Results: Findings demonstrated that primary caregiver and young person coping were related such that if one member of the dyad used Palliative coping so did the other. Positive remarks were related to the young person perceived helpfulness of coping. Young person Palliative coping was associated with better Emotional State (HRQOL). In line with previous research (e.g. Staab et al., 1998) aspects of the young persons' Active coping (Social Support) was associated with higher scores on some aspects of HRQOL. Conclusion: primary caregiver coping and young person coping appear to be related. Aspects of coping appear to be related to the young persons HRQOL. Further research is required to examine aspects of expressed emotion more thoroughly. Aspects of primary caregiver expressed emotion appear to be related to aspects of young person coping. Clinical Implications: Families may benefit from psycho-education that focuses on coping strategies. Specific work could focus on the underlying illness appraisals, which may mediate parental coping, aspects of expressed emotion and young person coping and QOL. However, it would also be pertinent to assess the coping preference of each young person, and indeed the primary caregiver, to ensure that they do not feel helpless in any decision making about pscho-education or treatment. It may be important to encourage social support for youngsters and their parents.