Conducting End-of-Life Studies in Pediatric Oncology

St. Jude Children's Research Hospital, Memphis, Tennessee 38105-2794, USA.
Western Journal of Nursing Research (Impact Factor: 1.03). 07/2007; 29(4):448-65. DOI: 10.1177/0193945906295533
Source: PubMed


Improving our ability to prevent or diminish suffering in dying children and adolescents and their families is dependent on the completion of high-quality pediatric end-of-life studies. The purpose of this article is to provide useful evidence-based strategies that have been used to implement and complete clinically useful pediatric end-of-life studies in oncology. The article describes specific peer-review and methodological challenges and links those to evidence-based solutions. The challenges and solutions described in this article are from eight end-of-life studies involving pediatric oncology patients. It is hoped that the solutions described here will benefit others in their efforts to implement pediatric end-of-life studies so that clinically useful findings will result and will improve the care of dying children and adolescents.

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    • "All (potential) participants had lost a child no longer than 23 months before a first approach regarding the study was made (that is, no longer than 24 months between the death of the child and the date of the interview). This time frame had previously been found to be reliable in terms of recall, as well as being sensitive to the emotional requirements of parents (Hinds et al. 2007). In order to allow parents time to overcome Table 1 Characteristics of children (n = 16) "
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    ABSTRACT: Parents caring for a child with a life threatening or life limiting illness experience a protracted and largely unknown journey, as they and their child oscillate somewhere between life and death. Using an interpretive qualitative approach, interviews were conducted with parents (n = 25) of children who had died. Findings reveal parents' experiences to be characterised by personal disorder and transformation as well as social marginalisation and disconnection. As such they confirm the validity of understanding these experiences as, fundamentally, one of liminality, in terms of both individual and collective response. In dissecting two inter-related dimensions of liminality, an underlying tension between how transition is subjectively experienced and how it is socially regulated is exposed. In particular, a structural failure to recognise the chronic nature of felt liminality can impede parents' effective transition. © 2015 Foundation for the Sociology of Health & Illness.
    No preview · Article · Jul 2015 · Sociology of Health & Illness
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    ABSTRACT: Studies of symptoms in children dying a cancer-related death typically rely on medical chart reviews or parental responses to symptom checklists. However, the mere presence of a symptom does not necessarily correspond with the distress it can cause the child's parents. The purpose of this study was to identify the cancer-related symptoms that most concerned parents during the last days of their child's life and the strategies parents identified as helpful with their child's care. Sixty-five parents of 52 children who had died a cancer-related death within the previous 6 to 10 months participated in telephone interviews. Eligibility criteria included being the parent or guardian of a child aged 0 to 21 years who had died within the previous 6 to 10 months after being treated at a pediatric cancer center, having been with their child during the last week of the child's life, speaking English, being willing to participate, and having access to a telephone. Eighteen symptoms of concern were identified as occurring during their child's final week and final day of life. The most frequently reported symptoms at both times included changes in behavior, changes in appearance, pain, weakness and fatigue, and breathing changes. The proportion of reported symptoms did not differ according to patient gender, disease, or location of death (intensive care, elsewhere in the hospital, or home). The most helpful strategies used by health care professionals to assist the child or parents included giving pain and anxiety medications, spending time with the child or family, providing competent care, and giving advice. This knowledge can guide professionals in preparing parents for the symptoms that a child imminently dying of cancer is likely to experience and in providing care that will be helpful to parents.
    Full-text · Article · Jun 2008 · PEDIATRICS
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