Browse Items (109 total)

Research cooperative groups aim to facilitate collaborative and rigorous palliative care research. The purpose of this article is to (1) demonstrate how cooperative groups are taking formal and sustainable steps with commitment to pediatric…

BACKGROUND: Research ethics committees are commonly perceived as a 'barrier' to research involving seriously ill children. Researchers studying seriously ill children often feel that committees view their applications more harshly compared to…

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…

This review article addresses first the different palliative care models currently in use. Studies addressing the effectiveness of the models used are briefly summarized. Special attention is further given to models developed and tested in palliative…

Voluntariness is a requirement that is frequently voiced in research ethics but is poorly understood. This article seeks to clarify voluntariness and assess its significance in clinical research at the end of life. First, what voluntariness is 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…

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…

OBJECTIVE: To synthesize the perspectives of a broad range of pediatric palliative care (PPC) clinicians and parents, to formulate a consensus on prioritization of the PPC research agenda. STUDY DESIGN: A 4-round modified Delphi online survey was…

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 promise of theory and model development makes grounded theory an attractive methodology to follow. However, it has been argued that many researchers fall short and provide a detailed description of only the research area or simply a quantitative…

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…

There is an urgent need for robust empirical data to guide the assessment and treatment of patients near the end of life. Because they are important providers of end-of-life care in this country, hospices have an important role to play in…

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.…

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…

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…

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…

CONTEXT: Public and patient involvement is increasingly becoming an expectation of research funders and policy makers. Not all areas of health research are public-facing. Here, we outline an approach for building the skills and developing the…

A regular work day for intensivists can be emotionally draining, as we witness suffering, fear, pain,
tragedies, unfair treatment of children, death…. We may experience the mental stress of dealing with
nursing shortages, increasing family demands,…

People who have lost a travel one often try to make some meaning of their loss. The authors explore the ways people try to make meaning of loss, the factors that predict difficulty in making meaning, and the emotional outcomes of finding meaning.…

Three assumptions guiding research and clinical intervention strategies for people coping with sudden, traumatic loss are that (a) people confronting such losses inevitably search for meaning, (b) over time most are able to find meaning and put the…

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!’…

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…

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…

OBJECTIVE: To document the Institutional Review Board (IRB) review process and to explore the impact of different patient notification procedures. DATA SOURCES/STUDY SETTING: Review of IRB application and correspondence records prospectively…

In this paper the authors argue that research ethics committees (RECs) should not be paternalistic by rejecting research that poses risk to people competent to decide for themselves. However it is important they help to ensure valid consent is sought…

A notable and welcome increase in palliative care research has led to a multitude of ethical issues and concerns for researchers, clinicians, patients (subjects) and their family members (who also might be subjects), granting agencies, and…

Research in end-of-life care is constrained more by pragmatic, social, cultural, and financial constraints than ethical issues that preclude the application of typical research methodologies. When normally accepted and ethically sound protections for…

How should researchers reflexively evaluation ways in which intersubjective elements transform their research? The process of engaging in reflexivity is full of muddy ambiguity and multiple trails as researchers negotiate the swamp of interminable…

BACKGROUND: Use of Web 2.0 and social media technologies has become a new area of research among health professionals. Much of this work has focused on the use of technologies for health self-management and the ways technologies support communication…

This article explores the concepts of narrative as story, of storytelling, and of the narrative approach to qualitative research. Within this, I will also examine the social nature of narrative and the implications of this for research. I will look…
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