The health of children with cerebral palsy and stress in their parents

Aim.  This paper is a report of a study conducted to describe the health of children with cerebral palsy and investigate predictors of stress in their parents. Background.  Children with severe cerebral palsy tend to have poorer health than their able-bodied peers, and their parents are more likely to be stressed and have poorer health. Method.  A cross-sectional survey with home visits using standard questionnaires was administered to parents in 2004–05. A total of 102/199 (51%) children and parents participated. The children were compared with a normative sample. Results.  Children with cerebral palsy had poorer physical health, and 79% of parents reported that their child had moderate to severe pain. Their poorer health, in comparison with the normal sample and measured by the Child Health Questionnaire, was related to feeding problems and seizures, general health perceptions to intellectual and feeding impairment, and family activities with severe motor, intellectual and feeding impairment. Poorer psychological well-being on the hyperactivity domain of the Strengths & Difficulties Questionnaire was related to feeding difficulties, on the prosocial domain to more severe forms of all child impairments, and on the social impairment scale to intellectual impairment. Children with psychological problems had statistically significantly increased odds (OR = 7·2, 95% CIs 2·6–20·3) of having parents with high stress. Conclusion.  Children with cerebral palsy and associated impairments are at higher risk of poorer health and family well-being. A family-centred approach to the care of children with cerebral palsy and their families is essential to ensure both receive adequate care and support.

Treatment Foster Care for Improving Outcomes in Children and Young People: A Systematic Review

Objective: To assess the impact of treatment foster care (TFC) on psychosocial and behavioral outcomes, delinquency, placement stability, and discharge status for children and adolescents who, for reasons of severe medical, social, psychological and behavioural problems, were placed in out-of-home care in restrictive settings or at risk of placement in such settings. Method: Electronic bibliographic databases, web searches, and article reference lists were used to identify randomized controlled trials (RCTs) investigating the effectiveness of TFC with children and young people. The Cochrane Collaboration’s criteria were used to assess the methodological quality of studies that met the inclusion criteria. Wherever possible, extracted outcome data from similar studies were synthesized with random effects meta-analyses. Results: A total of 5 studies including 390 participants were included in this review. Data suggest that TFC may be a useful intervention for children and young people with complex emotional, psychological, and behavioural need, who are at risk of placements in nonfamily settings that restrict their liberty and opportunities for social inclusion. Conclusion: Although the inclusion criteria for this systematic review set a study design threshold higher than that of previous reviews, the findings mirror those of earlier reviews. While the results of individual studies generally indicate that TFC is a promising intervention for children and youth experiencing mental health problems, behavioral problems, or problems of delinquency, the evidence base is not robust and more research is needed due to the limited number of studies in this area.

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

Open Adoption: Adoptive Parents' Experiences of Birth Family Contact and Talking to Their Child about Adoption

The trend towards more open adoption presents adopters with unique parenting challenges associated with satisfying the child’s curiosity about their origins, and maintaining relationships with birth family through contact. This paper focuses on the experiences of 20 sets of adoptive parents who were interviewed as part of the Northern Ireland Care Pathways and Outcomes Study. Interviews were analysed following the principles of Interpretative Phenomenological Analysis (IPA). It explores adoptive parents’ experience of talking to their child about adoption, and of post-adoption contact with members of the birth family. Adopters discussed adoption sensitively with their child, but were concerned that difficult and complex family histories would present a risk to the child’s self-esteem and emotional well-being. All forms of contact proved emotionally and practically burdensome, however adopters were committed to making it work for the child’s benefit, and were open to increased contact should the child wish it in the future. There was little relationship with birth family outside of formal contact. The study reveals a need for a mechanism to facilitate communication with birth family if adopters are to be able to respond to the child’s changing need for contact and information.

Understanding applied behaviour analysis: An introduction to ABA for parents, teachers, and other professionals

book review

Caring for a child with autism: A practical guide for parents

book review

Raising a child with autism: A guide to applied behavior analysis for parents

book review