Healthcare Staff Experience of Providing End-of-Life Care to Children: A Mixed Method Review

Background: Staff who provide end-of-life care to children not only have to deal with their own sense of loss, but also that of bereaved families. There is a dearth of knowledge on how they cope with these challenges.
Aim: The aim of this review is to explore the experiences of health care professionals who provide end-of-life care to children in order to inform the development of interventions to support them, thereby improving the quality of paediatric care for both children and their families.
Data sources: Searches included CINAHL, MEDLINE, Web of Science, EMBASE, PsychINFO, and The Cochrane Library in June 2015, with no date restrictions. Additional literature was uncovered from searching reference lists of relevant studies, along with contacting experts in the field of paediatric palliative care.
Design: This was a systematic mixed studies review. Study selection, appraisal and data extraction were conducted by two independent researchers. Integrative thematic analysis was used to synthesise the data.
Results: The 16 qualitative, six quantitative, and eight mixed-method studies identified included healthcare professionals in a range of settings. Key themes identified rewards and challenges of providing end-of-life care to children, the impact on staff’s personal and professional lives, coping strategies, and key approaches to help support staff in their role.
Conclusions: Education focusing on the unique challenges of providing end-of-life care to children and the importance of self-care, along with timely multidisciplinary debriefing are key strategies for improving healthcare staffs’ experiences, and as such the quality of care they provide.

Perspectives of an international education initiative in children's palliative care

Education is viewed as central to improving future palliative care for children and families across all countries. International education initiatives will ensure practitioners are aware of global health issues and can provide culturally sensitive care. Creative and innovative means of meeting such directives are required to achieve meaningful student learning. This paper focuses on one innovation, a children's palliative care workshop using case studies as a teaching method, with nursing students from the USA and nursing and midwifery students from the UK. Key learning points arising from student evaluation were recorded under three main themes, these were: differences across countries, similarities across countries, and making learning fun and memorable. Findings indicated that this joint learning activity was viewed positively by all students and has enabled them to learn with and from each other, potentially impacting on their future practice.

Accommodative dysfunction in children with cerebral palsy: a population based study

Purpose. To determine the prevalence, nature, and degree of accommodative dysfunction among children with different types and severities of cerebral palsy (CP) in Northern Ireland. Methods. Ninety subjects with CP (aged 4–15 years) were recruited through the Northern Ireland CP Register (NICPR). Modified Nott dynamic retinoscopy was used to measure lag and lead of accommodation at three test distances: 25 cm (4 D), 16.7 cm (6 D), and 10 cm (10 D) with the distance correction in place. Accommodative function was also assessed in an age-matched control group (n = 125) for comparison. Each subject’s neurologic status was derived from the NICPR. Results. Children with CP demonstrate significantly reduced accommodative responses compared with their neurologically normal peers. Of the subjects with CP, 57.6% demonstrated an accommodative lag outside normal limits at one or more distances. Reduced accommodative responses were significantly associated with more severe motor and intellectual impairments (ANOVA P = 0.001, P < 0.01, respectively). Conclusions. Brain injury such as that present in CP has a significant impact on accommodative function. These findings have implications for the optometric care of children with CP and inform our understanding of the impact of early brain injury on visual development.

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.

The contribution of the United Nations Convention on the Rights of the Child to understanding and promoting the interests of young people making the transition from care to adulthood

The United Nations Convention on the Rights of the Child (UNCRC) acknowledges that young people without parental care are entitled to special support and assistance from the State. In detailing their expectations, the UN Committee have issued Guidelines for the Alternative Care of Children which recognise that State parties have a number of responsibilities towards care leavers. The paper explores how the UNCRC reporting process, and guidelines from the Committee outlining how States should promote the rights of young people making the transition from care to adulthood, can be used as an instrument to track global patterns of change in policy and practice. Content analysis of State Party Reports and Concluding Observations from 15 countries reveals that to date there has been limited engagement with understanding and promoting the needs of this group in the reporting process; although where a government is committed to developing legislation and practice then this does find its way into their national reports. Data supplied by affiliates of the International Research Network on Transitions to Adulthood from Care (INTRAC) reveals that national concerns, political ideology, public awareness, attitudes and knowledge of the vulnerability of care leavers influence service responses to protect and promote the rights of this group and the attention afforded to such issues in reports to the Committee. Findings also suggest that global governance is not simply a matter of top down influence. Future work on both promoting and monitoring of the impact of the UNCRC needs to recognise that what is in play is the management of a complex global/national dynamic with all its uneven development, levels of influence and with a range of institutional actors involved.