Despite increasing cure rates, cancer is a leading cause of non-accidental death in childhood. Models of psychosocial care in pediatric cancer may therefore need to address bereavement planning for a 'minority group' of parents (approximately 25%) for whom cure of their child is not possible. This study addresses a gap in knowledge concerning long-term bereavement and psychological outcomes for parents, as a function of the sex of the parent and the place of the child's death: home versus hospital. Fifty Australian parents (25 father-mother dyads), whose child had died at least 1 year prior to study participation, independently completed measures of psychological functioning (depression, anxiety and stress), family functioning, and pathological grieving (separation distress, and traumatic distress). The results showed some support for a hypothesized interaction between place of death and sex of parent. Fathers reported significantly higher levels of depression, anxiety and stress when the child died in hospital rather than at home. By way of contrast, differences for mothers as function of place of death were not reflected in psychological outcomes but were more closely tied to symptoms of pathological grieving. The findings are discussed with respect to the needs for services for surviving adult family members, especially for fathers who may have an enhanced psychological vulnerability after the death of a child in hospital rather than at home.
■ Of children needing palliative care, less than half have a malignancy.■ Most families will elect to care for their child at home if this is offered as a realistic option.Jenny L Hynson, MB BS, FRACP, Paediatrician.
Background: Access to palliative care in the community enables people to live in their preferred place of care, which is often home. Community palliative care services struggle to provide timely 24-h services to patients and family. This has resulted in calls for ‘accessible and flexible’ models of care that are ‘responsive’ to peoples’ changing palliative care needs. Digital health technologies provide opportunities to meet these requirements 24-h a day. Aim: To identify digital health technologies that have been evaluated for supporting timely assessment and management of people living at home with palliative care needs and/or their carer(s), and the evidence-base for each. Design: A systematic review of systematic reviews (‘meta-review’). Systematic reviews evaluating evidence for virtual models of palliative or end-of-life care using one or more digital health technologies were included. Systematic reviews were evaluated using the Risk of Bias Tool for Systematic Reviews. A narrative approach was used to synthesise results. Data sources: Medline, Embase, Web of Science, CINAHL and Cochrane Database of systematic reviews were searched for English-language reviews published between 2015 and 2020. Results: The search yielded 2266 articles, of which 12 systematic reviews met criteria. Sixteen reviews were included in total, after four reviews were found via handsearching. Other than scheduled telehealth, video-conferencing, or after-hours telephone support, little evidence was found for digital health technologies used to deliver virtual models of palliative care. Conclusions: There are opportunities to test new models of virtual care, beyond telehealth and/or video conferencing, such as 24-h command centres, and rapid response teams. Systematic review registration number: Prospero CRD42020200266
Siblings of children with life limiting conditions (LLC) are an important part of the broader family system and require consideration in the holistic care of the family. There can be considerable variation in the functioning and adjustment of these siblings. The current paper explores the resilience paradigm, particularly in the context of siblings of children with LLC and serious medical conditions. The potential impact of children living with a seriously ill brother or sister will be overviewed, and a range of functional outcomes considered. Factors contributing to sibling resilience are detailed, including individual, family, and broader external and social factors. Given the limited research with siblings of children with LLC, literature has also been drawn from the siblings of children with serious and/or chronic medical conditions. Implications for clinical practice and future research are considered. Pediatric palliative care services may be well placed to contribute to this body of research as they have commonly extended relationships with the families of children with LLC, which span across the child’s disease trajectory.
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