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
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
"Can you tell me why you made that choice?": A qualitative study of the influences on treatment decisions in advance care planning among adolescents and young adults undergoing bone marrow transplant.
Adolescent and young adult advance care planning is beneficial in improving communication between patients, surrogates, and clinicians. The influences on treatment decisions among adolescents and young adults are underexplored in the literature. ⋯ This study highlights that adolescent and young adult bone marrow transplant patients are capable of meaningful deliberation about future treatment decisions. Influences on decision-making should be incorporated into advance care planning conversations to facilitate communication between patients and their surrogates. Longitudinal research is needed to explore these influences throughout the trajectory of illness.
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Palliative medicine · Mar 2020
Visualizing social support in home pediatric palliative care using network maps.
Home care of children with life-limiting diseases is extremely challenging for parents/family caregivers and their social environment. In order to gain new insights into the perspective of family caregivers, we employed digital Network Maps for the first time in the field of pediatric palliative care. ⋯ Network Maps appear to be an appropriate tool for the collection, reconstruction, and assessment of the current support situation of parents of dying children. Further studies should examine the usefulness of Network Maps for the understanding of the caregivers' support needs and for the development of psychosocial interventional strategies by pediatric palliative care teams.
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Palliative medicine · Mar 2020
Building trust and improving communication with parents of children with Trisomy 13 and 18: A mixed-methods study.
Trisomy 13 and trisomy 18 are common life-limiting conditions associated with major disabilities. Many parents have described conflictual relationships with clinicians, but positive and adverse experiences of families with healthcare providers have not been well described. ⋯ Realistic and compassionate support of parents living with children with trisomy 13 and 18 is possible. Adversarial interactions that lead to distrust and conflicts can be avoided. Many supportive behaviors that inspire trust can be emulated.