Living through the death of a child: A qualitative study of bereaved parents’ experiences

Design: Cross-sectional qualitative study.

Data sources: Interviews with purposeful sample of 25 recently bereaved parents.

Methods: Semi-structured in-depth interviews.

Results: Four analytically distinct processes were identified in the responses of parents to the death of a child. These are referred to as ‘piloting’, ‘providing’, ‘protecting’ and ‘preserving’. Regardless of individual circumstances, these processes were integral to all parents’ coping, enabling an active ‘doing’ for their child and family throughout the trajectory of their child's illness and into bereavement.

Conclusions: Facilitating the capacity of parents to ‘do’ is central to coping with the stress and uncertainty of living through the death of a child. The provision of informational, instrumental and emotional support by health care professionals in the context of ‘doing’ is core to quality palliative care.

Keywords: Bereaved parents; Cancer; Dying child; End-of-life; Palliative care; Non-malignant

The Influence of Child Protection Orientation on Child Welfare Practice

This article reports the findings of the second part of a two-part research project examining the potential for social workers to make changes in their work with families and children. While social workers in the United Kingdom have been encouraged to shift from a child protection to a child welfare orientation in their practice, such changes have been hampered by professional and organisational concern to manage risk. The research explores the influence of a child protection orientation on practice in child welfare cases. The findings, from two file analyses and interviews with twenty-six social workers, indicate that such an influence is indeed apparent. This is evidenced in two ways; firstly patterns of practice in child welfare cases are similar to those in child protection cases. Secondly, while the majority of social workers express an attitudinal desire to move towards a child welfare orientation, they still prioritise the management of risk in their practice. It is argued that social workers need permission from their employing organisations to make changes in their practice. This, in turn, requires such organisations to state clear goals in line with a child welfare orientation and develop holistic strategies to achieve these.

Determinants of Child-Parent Agreement in Quality-of-Life Reports: A European Study of Children With Cerebral Palsy

OBJECTIVES: The differences between child self-reports and parent proxy reports of quality of life in a large population of children with cerebral palsy were studied. We examined whether child characteristics, severity of impairment, socioeconomic factors, and parental stress were associated with parent proxy reports being respectively higher or lower than child self-reports of quality of life. METHODS. This study was conducted in 2004–2005 and assessed child quality of life (using the Kidscreen questionnaire, 10 domains, each scored 0–100) through self-reports and parent proxy reports of 500 children aged 8 to 12 years who had cerebral palsy and were living in 7 countries in Europe. RESULTS: The mean child-reported scores of quality of life were significantly higher than the parent proxy reports in 8 domains, significantly lower for the finances domain, and similar for the emotions domain. The average frequency of disagreement (child-parent difference greater than half an SD of child scores) over all domains was 64%, with parents rating their child’s quality of life lower than the children themselves in 29% to 57% of child-parent pairs. We found that high levels of stress in parenting negatively influenced parents’ perception of their child’s quality of life, whereas the main factor explaining parents’ ratings of children’s quality of life higher than the children themselves is self-reported severe child pain. CONCLUSIONS: This study shows that the factors associated with disagreement are different according to the direction of disagreement. In particular, parental wellbeing and child pain should be taken into account in the interpretation of parent proxy reports, especially when no child self-report of quality of life is available. In the latter cases, it may be advisable to obtain additional proxy reports (from caregivers, teachers, or clinicians) to obtain complementary information on the child’s quality of life.