Background and Objectives: Historically marginalized religious and cultural groups are at risk for lower quality of care than majority groups. No study to date specifically queries Muslim experiences with the American health care system (AHCS). We…
CONTEXT: Uncertainty exists about the impacts of feeding tubes on neurologically impaired children. Core outcome sets (COS) standardize outcome selection, definition, measurement, and reporting.
This study, using a Delphi approach, sought the opinion of a self-selected panel of 320 district nurses regarding research priorities for district nursing in Australia. Over three rounds of questionnaires, the 419 research clinical problem areas…
This paper, utilising a narrative approach, aims to describe the experiences of men whose partner had experienced pregnancy loss, based on data from Northern Ireland. The methodology was based upon observation within pregnancy loss self-help groups…
PURPOSE: To examine the experiences of parents who are caring for a child with a life-threatening or life-limiting illness (LTI/LLI) including levels of uncertainty, distress, hope, and self-efficacy to determine if there are significant variations…
A proposed nationwide postal questionnaire to Swedish parents who had lost a child due to cancer between 1992 and 1997 was denied approval by the local ethics committee. However, a pilot study to assess the harm and benefit of the questionnaire was…
OBJECTIVES: Existing health services for young people (YP)(10-24 years), which are predominantly designed for but not with young people, often do not meet YP's needs. The 2018 Global Consensus Statement on meaningful adolescent and youth engagement…
Nursing facilities (NF) are important sites for the care of dying patients. Curricula likely to improve end-of-life care are needed for NF physicians. To this end, a model medical school palliative care curriculum was modified for experienced NF…
Recent studies have made it clear that there are substantial opportunities to improve end-of-life care. Doing so will require solid evidence on which to base clinical and policy decisions and this, in turn, will require a focused research effort.…
Despite the ethical codes guiding bereavement research, few studies have been conducted to evaluate the perceived stress experienced by the bereaved, and to explore which methodologies cause least distress. This article investigates how bereaved and…
If untreated, most children with severe combined immunodeficiency disorder (SCID) will die of complications of infection within the first 2 years of life. Early hematopoietic stem cell transplant (HSCT) is the current standard of care for this…
CONTEXT: In order to dramatically advance the evidence base for pediatric palliative care (PPC) interventions, practices, and programs in the United States and similar practice settings, the field needs to better understand the challenges and…
BACKGROUND: Participation in research is associated with benefits and burdens for individual research participants. Children living with a chronic illness are considered particularly vulnerable as they are already burdened with symptoms of their…
The International Children’s Palliative Care Network held its second international conference on children’s palliative care in Buenos Aires, Argentina, from the 18th–21st May 2016. The theme of the conference was ‘Children’s Palliative Care…. Now!’…
This paper reviews some of the recent empirical studies validating the Circumplex Model and describes the newly developed self-report measure, FACES III. Studies testing hypotheses derived from the Circumplex Model regarding the three dimensions of…
Pandemic H1N1 influenza is projected to be unprecedented in its scope, causing acute critical illness among thousands of young otherwise healthy adults, who will need advanced life support. Rigorous, relevant, timely, and ethical clinical and health…
Kaptchuk et al investigate whether placebo effects can experimentally be separated into the response to three components--assessment and observation, a therapeutic ritual, and a supportive patient-practitioner relationship--and then progressively…
BACKGROUND:
This is the second of a two-part article that discusses a research project that aimed to develop and evaluate a 24/7 symptom-management service for children with palliative care needs and a nursing logic model to enable a novel service…
This paper focuses on using the grounded theory method to study social psychological themes which cut across diverse chronic illnesses. The grounded theory method is presented as a method having both phenomenological and positivistic roots, which…
The goal of good palliative care is to relieve suffering and to improve quality of life. However, it is clear that access to palliative care is inconsistent. At least in part, these deficiencies exist because of a lack of solid evidence on which to…
Ethical issues in the critical care unit frequently arise in children with neurological problems. These ethical issues frequently challenge our medical management of such cases and can be quite problematic. This article reviews key ethical issues…
Participant recruitment is one of the most significant challenges in research on intellectual disability (ID). One potential solution is to develop a participant contact registry, which allows the researcher to contact participants directly rather…
Purpose: To describe the challenges of finding the findings in qualitative studies. Method: Review of literature on representation in qualitative research and analysis of 99 reports of qualitative studies of women with HIV infection. Findings:…
