Advances in treatment mean children are increasingly cared for by their parents at home, leading to a shift in responsibility from health care professionals to parents. Little is known about parents' pain management experiences and the etiology of pain experienced by children with cancer especially when at home. A rapid review of the literature was undertaken investigating children's cancer-related pain, with emphasis on the management of pain outside the health care setting. Electronic databases were searched and a quality assessment was conducted. Forty-two articles were included. Despite advances in pain management techniques, children with cancer regularly cite pain as the most prevalent symptom throughout the cancer trajectory. The source of pain is usually treatment side effects or painful procedures. Parents find dealing with their child's pain distressing and demanding and may hold misconceptions about pain management. Findings indicate a need for more robust research into parental pain management leading to the development of effective pain management resources for parents.
Greater understanding is needed of the language that can be used with families to describe death and dying in intensive care. Clearer conceptualization of the relationship between the medically focussed withdrawal of life-sustaining treatments and patient/family-centred end-of-life care is required making the nursing contribution at this time more visible.
Congenital heart disease (CHD) is the most common birth defect. Little is known of the impact of having a sibling with CHD. Available literature documents negative impact of having a sibling with other chronic conditions. This literature review considers empirical evidence investigating the impact of having a sibling with CHD. Twelve databases were searched, and 202 articles retrieved. Eleven articles met the inclusion criteria and were subject to data extraction, quality appraisal, and narrative synthesis. Three themes emerged: changes in normal life, impact on siblings, and factors affecting the extent of impact on siblings. Only one intervention study was identified, 5 of 10 studies were conducted over 20 years ago, and only 4 studies included children as participants. Evidence suggests siblings of children with CHD experience adverse life changes which lead to negative impacts in several domains. Evidence is inconclusive regarding mitigating factors of these impacts. Further research is needed to understand the experiences of being a sibling of a child with CHD.
Background:Increasing importance is being placed on the coordination of services at the end of life.Aim:To describe decision-making processes that influence transitions in care when approaching the end of life.Design:Qualitative study using field observations and longitudinal semi-structured interviews.Setting/participants:Field observations were undertaken in three sites: a residential care home, a medical assessment unit and a general medical unit in New Zealand. The Supportive and Palliative Care Indicators Tool was used to identify participants with advanced and progressive illness. Patients and family members were interviewed on recruitment and 3–4 months later. Four weeks of fieldwork were conducted in each site. A total of 40 interviews were conducted: 29 initial interviews and 11 follow-up interviews. Thematic analysis was undertaken.Findings:Managing risk was an important factor that influenced transitions in care. Patients and health care staff held different perspectives on how such risks were managed. At home, patients tolerated increasing risk and used specific support measures to manage often escalating health and social problems. In contrast, decisions about discharge in hospital were driven by hospital staff who were risk-adverse. Availability of community and carer services supported risk management while a perceived need for early discharge decision making in hospital and making ‘safe’ discharge options informed hospital discharge decisions.Conclusion:While managing risk is an important factor during care transitions, patients should be able to make choices on how to live with risk at the end of life. This requires reconsideration of transitional care and current discharge planning processes at the end of life.
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