Research with bereaved parents: a question of how not why.

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 bereaved parents is equally recognised as a challenge to ethical research. An emerging literature suggests that research can be safely and ethically conducted with bereaved families, if performed sensitively. However, little is known about what research processes might enhance ethical research practice in this field. AIM: To explore the impact of the research process on bereaved parents, and to identify what elements enhance the experience of research participation. METHODS: This qualitative study used in-depth interview techniques with the bereaved parents of children who had died from a range of conditions. RESULTS: Interviews took place with 69 parents from 45 eligible families (70% of 64 selected eligible families) of children who had died from a range of chronic conditions. All participants considered the timing and nature of the initial approach by the researchers to be appropriate. The experience for parents was reported to be enhanced by the sensitivity of the initial approach. The use of in-depth qualitative interviews promoted parent empowerment through determining both pace and content of interviews. Although the majority of parents primarily chose to participate for altruistic reasons, many described the research process as personally beneficial. CONCLUSION: Participating in research was viewed positively by these bereaved parents. Careful attention to the research process in terms of timing, approach and the interviewer's skills were key elements that underpinned a positive experience. The skilled utilisation of in-depth interviewing techniques was perceived to enhance ethical research practice.

Paediatric palliative care: distinctive needs and emerging issues.

Palliative medicine has developed as a specialized field of practice in recent decades but the focus has been very much on older adults with incurable malignancies. The needs of dying children have not been addressed adequately and the question of who is best placed to provide care to this group remains the subject of some contention. Although the principles of palliative care apply equally to children, a number of fundamental differences influence their application in the paediatric setting. These include a heterogeneous patient population, physiological factors, developmental issues, parental involvement in care giving and decision making and the desire of most paediatricians to maintain close involvement with their patients. Families generally prefer home care and even quite severe symptoms can be managed in this environment with appropriate planning, expertise and support. The delivery of effective palliative care in the paediatric setting is contingent upon overcoming barriers between hospital and community and sharing expertise between paediatricians and palliative care physicians. Research is also required to increase the evidence base for practice.

Clinical and neuroradiologic features of acute disseminated encephalomyelitis in children.

OBJECTIVE: To identify the clinical and neuroradiologic features of acute disseminated encephalomyelitis (ADEM) in childhood. METHODS: A retrospective review was conducted of the medical records and MRI of children who presented to the Royal Children's Hospital in Melbourne with ADEM between January 1993 and December 1998. RESULTS: Of the 31 patients included in this study, 22 (71%) experienced a prodromal illness. Two patients (6%) had received hepatitis B vaccine 3 to 6 weeks before developing their illness. Symptoms and signs typically evolved over several days. Ataxia was the most common presenting feature, occurring in 20 patients (65%). MRI findings were variable, but lesions were most commonly seen bilaterally and asymmetrically in the frontal and parietal lobes. The authors found a high incidence of the corpus callosal and periventricular changes more typically associated with MS, but they also found a high rate of deep gray matter involvement (61% of patients). The use of high-dose IV methylprednisolone was usually associated with rapid recovery. Eighty-one percent of patients recovered completely, with only mild sequelae recorded in the remaining children. CONCLUSION: In the absence of a biological marker, the distinction between ADEM and MS cannot be made with certainty at the time of first presentation, but the authors suggest that a viral prodrome, early-onset ataxia, high lesion load on MRI, involvement of the deep gray matter, and absence of oligoclonal bands are more indicative of ADEM.

Asthma: communication between hospital and general practitioners.

OBJECTIVE: To assess whether efforts to actively involve General Practitioners (GPs) in the postdischarge care of their paediatric asthma patients improved their satisfaction with communication with hospital staff. METHODOLOGY: Randomized controlled trial involving 60 patients admitted to the Royal Children's Hospital, Melbourne, with acute asthma and an identifiable GP. The GPs of the intervention patients were telephoned during the admission. Intervention patients and their GPs received printed information detailing the care the patient received in hospital and the recommended postdischarge care, as well as standardized educational booklets about asthma. Follow-up appointments were made for intervention patients to attend their GPs. RESULTS: The GPs of intervention patients were more satisfied when compared to the GPs receiving a standard level of communication (96.4% vs 48.3% of the intervention and control GPs, respectively, described the communication as good or extremely good, P = 0.0001). The intervention group GPs believed they were more involved after discharge (75.0% vs 44.8%, P = 0.005) and had greater understanding of their patient's hospitalisation (96.4% vs 62.1%, P = 0.005). These differences were noted despite there being no difference in the rate of follow-up attendance with GPs for intervention and control patients (85.7% vs 72.4%, P = 0.2). Qualitative data supported these findings with GPs expressing approval of the intervention used. CONCLUSION: Efforts to actively involve GPs in the postdischarge care of their paediatric patients with asthma resulted in a marked improvement in their satisfaction with the communication with medical staff at the Royal Children's Hospital, Melbourne. The study had insufficient power to demonstrate a difference in morbidity.