Myra Bluebond-Langner

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PURPOSE To examine US and United Kingdom (UK) parents' approaches to care and treatment when standard therapy has failed and consider implications for clinical practice. METHODS We conducted a prospective, ethnographic study of parents, patients, and staff, including participant-observation; open-ended, semistructured interviews; and review of medical(More)
Because pediatric oncology camps provide an opportunity for children who have had cancer to interact with their peers in an informal, recreational environment, this study was designed to determine (1) whether cancer and its treatment are discussed informally among the children, (2) what kinds of information are exchanged if such discussions take place, and(More)
BACKGROUND The "International Paediatric Palliative Care Course" (IPPCC) was held for the second time in Germany. The goals of the course were to impart knowledge and skills, to share experience and network, and to improve multiprofessional work. METHODS Design, content, and rationale for the course were described. Participants who had attended the first(More)
Participant observation strategies may be particularly effective for research involving children and their families in health care settings. These techniques, commonly used in ethnography and grounded theory, can elicit data and foster insights more readily than other research approaches, such as structured interviews or quantitative methods. This article(More)
The relationship between parents and clinician is critical to the care and treatment of children with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs). This relationship is built and maintained largely in consultations. In this article we lay out factors that bear on the success of clinical consultations and the maintenance of the(More)
BACKGROUND Recruitment to paediatric palliative care research is challenging, with high rates of non-invitation of eligible families by clinicians. The impact on sample characteristics is unknown. AIM To investigate, using mixed methods, non-invitation of eligible families and ensuing selection bias in an interview study about parents' experiences of(More)
Neonatal palliative care is an emerging specialty, developing in the context of the significant prevalence of life-limiting and life-threatening conditions amongst the population treated and cared for by neonatologists and neonatal nurses. In this paper we explore the need and provision for training among practitioners in neonatal palliative care to date.(More)
To meet a graduation requirement at a state university, 225 students took a 1-semester interdisciplinary course on AIDS. In addition to lectures, readings, and recitation sections, all the students participated in three small-group discussions of their feelings on AIDS-related issues. Students in other courses at the same university served as controls.(More)
BACKGROUND Pain is one of the most common symptoms in children and young people (CYP) with life-limiting conditions (LLCs) which include a wide range of diagnoses including cancer. The current literature indicates that pain is not well managed, however the evidence base to guide clinicians is limited. There is a clear need for evidence from a systematic(More)