Objective: The aim of this study is to report the benefits and burdens of palliative research
participation on children, siblings, parents, clinicians, and researchers. Background …

Potential participant distress is often unaccounted for in qualitative research, where topics
are not pre-determined to be categorically sensitive. Additionally, researchers sometimes …

Background: Interviews with bereaved family carers to examine the end-of-life experience of
the deceased are important tools for palliative care researchers, but the ethics of …

Few studies examine ethical issues in bereavement research and none survey the opinions
of bereaved individuals who have not previously participated in bereavement research. This …

Changes in the scope of health research in the last 50 years require evidence to support
assumptions about what constitutes harm and benefit to research participants. The aim of …

Background: There is a need for evidence-based guidelines on how professionals should
act following a suicide. In an effort to provide empiric knowledge, we designed a nationwide …

Aim Spinal muscular atrophy (SMA) type 1 is a relatively common, untreatable and
invariably fatal neuromuscular disorder of early childhood. Psychosocial care is vital in …

Abstract Background The Child Health and Mortality Prevention Surveillance (CHAMPS)
network aims to generate reliable data on the causes of death among children aged< 5 …

Background Despite stillbirth being identified as one of the most traumatic events a woman
can experience, there is a lack of evidence on which to inform best practice in hospital and …

Background Individuals with intellectual disability are at higher risk of premature death
compared with individuals without intellectual disability, and therefore parents of people with …