Quality of life in parents of seriously Ill/injured children: a prospective longitudinal study
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Quality of life in parents of seriously Ill/injured children: a prospective longitudinal study Ella Graj1 · Frank Muscara2,3,4 · Vicki Anderson2,3,4 · Stephen Hearps2,4 · Maria McCarthy2,5 Accepted: 24 August 2020 © Springer Nature Switzerland AG 2020
Abstract Purpose Parents of children with serious childhood illness or injury (SCII) are at risk of experiencing poor quality of life (QoL). This study investigated the nature of parent QoL at the time of child diagnosis and seven months post-diagnosis, the change in parent QoL over time, and early factors influencing short-term and longer-term parent QoL. Methods The sample was drawn from a prospective longitudinal cohort study conducted within a paediatric hospital setting. Participants comprised 223 parents of 167 children diagnosed with a life-threatening illness and hospitalised in the cardiology, oncology, or intensive care departments. Examined data included QoL ratings completed by parents within four weeks of diagnosis and seven months post-diagnosis, and demographic, illness-related, and psychosocial predictor measures collected within four weeks of diagnosis, or four months post-diagnosis. Results Generalised Estimating Equations were utilised to analyse data. Results indicated poor parent QoL at diagnosis, and normalised parent QoL at seven months. Improvement occurred most noticeably in the psychosocial domain. Reduced acute stress symptomatology and increased psychological flexibility were associated with higher parent QoL at diagnosis. Increased perceived emotional resources predicted enhanced parent QoL at seven months. Conclusion Paediatric medical care teams should consider the challenges to QoL experienced by parents of children with SCII. Parents reporting acute stress symptoms during the acute-illness phase should be prioritised for intervention. Further, parent-dyads presenting at post-acute care settings reporting poor emotional resources would benefit from psychosocial and educative support. Keywords Quality of life · Childhood illness · Childhood injury · Prospective longitudinal · Predictors
Introduction
* Ella Graj [email protected] 1
Melbourne School of Psychological Sciences, University of Melbourne, Melbourne, Australia
2
Clinical Sciences, Murdoch Children’s Research Institute, Melbourne, Australia
3
Psychology Services, Royal Children’s Hospital, Melbourne, Australia
4
Department of Paediatrics, Melbourne School of Psychological Sciences, University of Melbourne, Melbourne, Australia
5
Royal Children’s Hospital, Children’s Cancer Centre, Melbourne, Australia
Serious childhood illness or injury (SCII) presents a major challenge to the wellbeing of the affected child and their family [1, 2]. Quality of life (QoL), encapsulating one’s physical, psychological and social wellbeing [3] provides a measure of the impact of this challenge. QoL is often disrupted across the ill/injured child’s family system [1], and parents are vulnerable to psychological stress in the early stages of their child’s
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