This is the first study to objectively measure gait, balance, and upper limb coordination in a group of patients with NPC1 and compare the results to age and gender matched controls. This is also the first study to report effect sizes in these…
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…
Purpose Intensive care is a stressful environment in which team-family conflicts commonly occur. If managed poorly, conflicts can have negative effects on all parties involved. Previous studies mainly investigated these conflicts and their management…
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: 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…
This study examines the reliability and validity of internet research in bereavement. Recent literature demonstrates an increased interest in utilizing a more convenient, inexpensive, and rapid internet method to collect data and recruit bereaved…
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).…
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…
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.…
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…
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…
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,…
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…
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…
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…
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…
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…
BACKGROUND: Widespread variation exists in pediatric critical care nutrition practices, largely because of the scarcity of evidence to guide best practice recommendations. OBJECTIVE: The objective of this paper was to develop a list of topics to be…
This paper reports the findings from a Delphi Study undertaken to identify the research priorities in children's palliative care in Ireland. Palliative care for children is a small and highly specialised field of healthcare that focuses on improving…
BACKGROUND: This paper defends the ethical and empirical significance of direct engagement with terminally ill children and adolescents in PPC research on health-related quality of life. Clinical trials and other forms of health research have…
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…
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…
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…
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…
