Palliative medicine
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Palliative medicine · Mar 2020
Identifying key elements for paediatric advance care planning with parents, healthcare providers and stakeholders: A qualitative study.
Although international guidelines recommend discussions about goals of care and treatment options for children with severe and life-limiting conditions, there are still few structured models of paediatric advance care planning. ⋯ A paediatric advance care planning intervention should take into account potential pitfalls and barriers including issues related to timing, potential conflicts between parents and professionals, ambiguity towards written advance directives, the role of non-medical carers for paediatric advance care planning implementation, the need to involve the child and the necessity of an iterative process.
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Palliative medicine · Mar 2020
Describing the psychosocial profile and unmet support needs of parents caring for a child with a life-limiting condition: A cross-sectional study of caregiver-reported outcomes.
There is a lack of studies examining the prevalence and severity of psychosocial distress in parents caring for a child with life-limiting condition. More research is also needed to better understand the experience, support needs and quality-of-life of this population. ⋯ This study contributes to the growing body of evidence on paediatric palliative care, specifically that parents caring for a child with a life-limiting condition report high levels of distress and burden, low quality-of-life and need more emotional and practical support targeted at their unmet needs. Paediatric palliative care services should routinely assess parent mental health and provide appropriate support.
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Palliative medicine · Mar 2020
Multicenter StudyRegret and unfinished business in parents bereaved by cancer: A mixed methods study.
Prior research has demonstrated that the presence of regret and unfinished business is associated with poorer adjustment in bereavement. Though there is a growing literature on these constructs among caregivers of adult patients, the literature on regret and unfinished business in bereaved parents has been limited. ⋯ Findings have implications for how providers work with families, including increasing treatment decision-making support, supporting parents in speaking to their child about illness, and, in bereavement, validating choices made. Grief interventions that use cognitive-behavioral and meaning-centered approaches may be particularly beneficial.
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Palliative medicine · Mar 2020
Addressing multidrug resistant pathogens in pediatric palliative care patients-the nurses point of view: A qualitative study.
Multidrug resistant pathogens are a large-scale healthcare issue. In particular, children with life-limiting conditions have a significantly increased risk of multidrug resistant pathogen colonization. Official hygiene requirements recommend children, who are colonized with multidrug resistant pathogens, to be isolated. In the context of pediatric palliative care, such isolation adversely affects the aim of social participation. To overcome this challenge of conflicting interests on a pediatric palliative care inpatient unit, a hygiene concept for patients colonized with multidrug resistant pathogens, called PALLINI, was implemented. ⋯ The implementation of a new hygiene concept is challenging. Despite positive reception of PALLINI from the nurses, ambivalence remained. Addressing these ambivalences may be critical to best implement the new hygiene concept.
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Palliative medicine · Mar 2020
Core outcome domains of pediatric palliative care for children with severe neurological impairment and their families: A qualitative interview study.
The interest in outcome measurement in pediatric palliative care is rising. To date, the majority of studies investigating relevant outcomes of pediatric palliative care focus on children with cancer. Insight is lacking, however, about relevant outcome domains for children with severe neurological impairment and their families. ⋯ As for other diagnostic groups, symptom control is a relevant outcome domain for children with severe neurological impairment. However, other outcome domains which focus on the whole family and take into account the long disease trajectory, such as respite and support, security, empowerment, and coping with the disease, are also crucial.