Evaluation showed that stakeholders valued the support provided by the Implementing Pediatric Advance Care Planning Toolkit

Fahner, Jurrianne C.; Rietjens, Judith; Heide, Agnes van der; Milota, Megan; Delden, Johannes van; Kars, Marijke C

doi:10.1111/apa.15370

Cited by 23 publications

(59 citation statements)

References 31 publications

(100 reference statements)

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“…In current research and practice in the field of PPC, there is a growing interest in strategies to anticipate the future in an adequate way [26]. Tools are developed to support families and HCPs in anticipating the future by ACP [27,28]. Our study reveals some key points that show why implementation of ACP and other strategies to anticipate the future need ongoing attention.…”

Section: Discussionmentioning

confidence: 97%

Anticipating the future of the child and family in pediatric palliative care: a qualitative study into the perspectives of parents and healthcare professionals

et al. 2020

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Preparing for future scenarios in pediatric palliative care is perceived as complex and challenging by both families and healthcare professionals. This interpretative qualitative study using thematic analysis aims to explore how parents and healthcare professionals anticipate the future of the child and family in pediatric palliative care. Single and repeated interviews were undertaken with 42 parents and 35 healthcare professionals of 24 children, receiving palliative care. Anticipating the future was seen in three forms: goal-directed conversations, anticipated care, and guidance on the job. Goal-directed conversations were initiated by either parents or healthcare professionals to ensure others could align with their perspective regarding the future. Anticipated care meant healthcare professionals or parents organized practical care arrangements for future scenarios with or without informing each other. Guidance on the job was a form of short-term anticipation, whereby healthcare professionals guide parents ad hoc through difficult situations. Conclusion: Anticipating the future of the child and family is mainly focused on achievement of individual care goals of both families and healthcare professionals, practical arrangements in advance, and short-term anticipation when a child deteriorates. A more open approach early in disease trajectories exploring perspectives on the future could allow parents to anticipate more gradually and to integrate their preferences into the care of their child. What is Known:• Anticipating the future in pediatric palliative care occurs infrequently and too late. What is New:• Healthcare professionals and parents use different strategies to anticipate the future of children receiving palliative care, both intentionally and unwittingly. Strategies to anticipate the future are goal-directed conversations, anticipated care, and guidance on the job.• Parents and healthcare professionals are engaged to a limited extent in ongoing explorative conversations that support shared decision-making regarding future care and treatment.

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Section: Discussionmentioning

confidence: 97%

Anticipating the future of the child and family in pediatric palliative care: a qualitative study into the perspectives of parents and healthcare professionals

et al. 2020

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“…Fahner et al evaluated the IMPACT pedACP toolkit using a combination of a survey, focus groups and qualitative interviews, 31 which however did not include joint discussions between parents and professionals. In accord with our data, they found that building an atmosphere of trust and engagement and honoring parental caring for the child influence parental readiness for pedACP.…”

Section: Discussionmentioning

confidence: 99%

“…An important limitation of our study is that no children undergoing palliative care treatment at time of study or their parents were included, as was the case in the study by Fahner et al 31 We chose to focus our attention on bereaved parents, as the vast majority of children in pediatric palliative care cannot be actively involved in a study on pedACP development due to age, neurological impairment, or both. 37 As children and adolescents with decision-making capacity are legally considered as akin to adults in many jurisdictions including Germany, we chose to look at their needs and support requirements concerning ACP in a separate study, which is currently underway.…”

Section: Strengths and Limitationsmentioning

confidence: 99%

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Participatory Development of a Modular Advance Care Planning Program in Pediatric Palliative Care (MAPPS)

Knochel¹,

Zaimovic²,

Gatzweiler³

et al. 2022

Journal of Pain and Symptom Management

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“…Using input from interviews with healthcare professionals and a review of the grey literature and the academic literature via PubMed, we developed a conceptual framework outlining the pathways through which the intervention would change desired outcomes. We then identified a pACP program in the Netherlands, called IMPACT (Implementing Paediatric Advance Care Planning Toolkit) [ 16 ], that matched the direction of the BOOST pACP program as defined by the conceptual framework. The IMPACT preparation booklets, the summary sheet and conversation structure were integrated into and adapted to the BOOST pACP program, in close collaboration with the developers of IMPACT (MK, JF).…”

Section: Methodsmentioning

confidence: 99%

Advance care planning for adolescents with cancer and their parents: study protocol of the BOOST pACP multi-centre randomised controlled trial and process evaluation

et al. 2021

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Background Research has highlighted the need for evidence-based interventions to improve paediatric advance care planning (pACP) in adolescents with cancer. Although adolescents express the desire and ability to share their values, beliefs and preferences for treatment, there is a lack of structured multicomponent interventions to improve parent-adolescent communication on different ACP themes including those not limited to end-of-life care. The aim of this study is to evaluate the effectiveness and implementation, context and mechanisms of impact of a novel ACP program in paediatric oncology. Methods We will conduct a multi-centre parallel-group randomised controlled superiority trial with embedded mixed-methods process evaluation in Flanders, Belgium. Adolescents aged 10–18 who have cancer, and their parent(s) will be recruited via all four university hospitals in Flanders, Belgium, and support groups. Families will be randomised to receive care as usual or the multicomponent BOOST pACP program, consisting of three conversation sessions between an external facilitator and the adolescent and parent(s). The primary endpoint is improved parent-adolescent communication from the perspective of the adolescent. Secondary endpoints are adolescents’ and parents’ attitudes, self-efficacy, intention and behaviour regarding talking about ACP themes with each other, parents’ perspective of shared decision making in the last clinical encounter, and the paediatric oncologist’s intention and behaviour regarding talking about ACP themes with the family. Measurements will be performed at baseline, at 3 months and at 7 months using structured self-reported questionnaires. We will perform a process evaluation in the intervention group, with measurement throughout and post-intervention, using structured diaries filled out by the facilitators, interviews with facilitators, interviews with involved paediatric oncology teams, and audio-recordings of the BOOST pACP conversations. Discussion The BOOST pACP program has been developed to stimulate conversations on ACP themes between parent(s) and the adolescents, simultaneously lowering the threshold to discuss similar themes with healthcare professionals, initiating a process of normalization and integration of ACP in standard care. This combined outcome and process evaluation aims to contribute to building the necessary evidence to improve ACP in paediatric oncology. Trial registration The study is registered at ISRCTN, ISRCTN33228289. Registration date: January 22, 2021.

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Evaluation showed that stakeholders valued the support provided by the Implementing Pediatric Advance Care Planning Toolkit

Cited by 23 publications

References 31 publications

Anticipating the future of the child and family in pediatric palliative care: a qualitative study into the perspectives of parents and healthcare professionals

Anticipating the future of the child and family in pediatric palliative care: a qualitative study into the perspectives of parents and healthcare professionals

Participatory Development of a Modular Advance Care Planning Program in Pediatric Palliative Care (MAPPS)

Advance care planning for adolescents with cancer and their parents: study protocol of the BOOST pACP multi-centre randomised controlled trial and process evaluation

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