BACKGROUND: In questionnaire-based research, human subject protection committees must assess the emotional impact of the study on participants. Without clear data about the risks and benefits of participating in such studies, however, review board…
This multivariate study examined the relationship between meaning in caregiving--positive beliefs about the caregiving situation and the self as caregiver--and the psychological well-being of 131 informal caregivers to community-residing frail…
CONTEXT: Uncertainty exists about the impacts of feeding tubes on neurologically impaired children. Core outcome sets (COS) standardize outcome selection, definition, measurement, and reporting.
The rejection of reliability and validity in qualitative inquiry in the 1980s has resulted in an interesting shift for "ensuring rigor" from the investigator's actions during the course of the research, to the reader or consumer of qualitative…
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…
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…
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…
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…
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…
Systematic assessment of the effect of clinical research studies on child and parent participants has been limited. Such assessment could provide an empirical basis for the ethical conduct of research, assisting investigators and institutional review…
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: Neonatal intensive care unit (NICU) music therapy is an emerging discipline. There is a growing evidence base supporting its use, with an emphasis on the immediate and short-term positive effects on infants' physiological responses and…
BACKGROUND: Mobile phones are familiar to most nurses, but the applications available for voice recording and transfer of audio files in research may not be. AIM: To provide an overview of a pilot study which trialled the use of mobile phones,…
BACKGROUND: There is tension around the notion of research with bereaved parents. While it is recognised that the care of children with palliative care needs will only improve with better understanding of parent perspectives, the vulnerability of…
Approximately 40 years ago, Barney Glaser and Anselm Strauss and their joint research approach, the constant comparative method of grounded theory, were at the forefront of what can be called a qualitative revolution. The publication of their book,…
The development of the Delphi technique, as a survey method of research, and examples of its use are described. The technique's key characteristics, anonymity, use of experts and controlled feedback, are examined. The method's usefulness in…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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!’…
