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…
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…
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…
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…
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…
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 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:…
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…
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…
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…
Between October 2001 and May 2002 the Chairperson and Vice-Chairperson of each Multicentre Research Ethics Committee (MREC) in England, Wales and Scotland took part in a semi-structured interview to ascertain the attitudes of MRECs to palliative care…
Fieldnotes are a vital part of ethnographic research, yet little attention has been paid to the practical details of note-taking. Exactly how does an ethnographer decide what to write about? This article uses fieldnotes from various sources to show…
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 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 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…
There has been an accumulation of qualitative studies in recent years, but little cumulation of the understandings gained from them. Qualitative research appears endangered both by efforts to synthesize studies and by the failure to do so. Techniques…
One of the most paralyzing moments in conducting qualitative research is beginning analysis, when researchers much first look at their data in order to see what they should look for in their data. Although temporally and conceptually overlapping…
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.…
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…
User involvement has become a central tenet of government policy regarding health and social care. Likewise, the role of 'evidence' is seen as being at the heart of effective planning and delivery of health services. (Our Healthier Nation, 1999).…
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…
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…
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…
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.…
