Pediatric Advance Care Planning Research Articles

Experiences with a national team-based learning program for advance care planning in pediatric palliative care

BackgroundAdvance Care Planning (ACP) enables patients and relatives to define and share values, goals and preferences for future medical treatment and care. The IMplementing Pediatric Advance Care Planning Toolkit (IMPACT), developed in the Netherlands, is a method for conducting ACP in pediatric palliative care. Healthcare professionals who were trained to use IMPACT, indicated their need for ongoing support to practice ACP communication skills optimally over time. Therefore, we developed a team-based learning program aimed at teaching participants how to transfer knowledge on ACP, continue practicing ACP communication skills and reflect on ACP conversations within their own team context. The aim of this study was to evaluate the program’s transfer of knowledge as well as the professionals’ experience and team reflection on ACP.MethodsA one-day IMPACT train-the-trainer course was developed and a selection of healthcare professionals (facilitators) from pediatric palliative care teams (PPCTs) from all seven Dutch university hospitals and the specialized Center for Pediatric Oncology were invited to participate. Hereafter, facilitators were asked to transfer their course-acquired knowledge to their team members (learners) by organizing two coaching-on-the-job sessions. A mixed-methods design, combining questionnaires and field notes, was used to evaluate the level of knowledge transfer and team reflection achieved.ResultsEighteen healthcare professionals in the role of facilitator participated in the train-the-trainer course. In seven PPCTs one (n = 3) or two (n = 4) coaching-on-the-job session(s) took place, attended by 29 and 17 learners, respectively. In the questionnaires, 11 facilitators indicated that they had to some extent transferred acquired knowledge to their team members as intended. Sixteen out of 21 learners who participated in at least one coaching-on-the-job session, reported (somewhat) increased self-confidence for conducting ACP conversations. The reported main strength of the program was practicing with/learning from colleagues whereas dealing with workload and variation in existing ACP skills within PPCTs need more attention.ConclusionsThe newly developed team-based learning program resulted in intended transfer of knowledge and methodical reflection on ACP in coaching-on-the-job sessions in most participating PPCTs. Planning coaching-on-the-job sessions regarding ACP in pediatric palliative care with multiple healthcare professionals is challenging and needs more emphasis in the training.

Feasibility of a Serious Illness Communication Program for Pediatric Advance Care Planning

Pediatric advance care planning (ACP), which aims to ensure care is aligned with family goals and values, is associated with better end-of-life outcomes; however, ACP in pediatrics remains uncommon. To determine the feasibility and acceptability of the Pediatric Serious Illness Communication Program (PediSICP) and explore family-centered outcomes. This cohort study was a single-group pilot study of the PediSICP in adolescents and young adults (AYAs; age ≥13 y) with serious illness, parents of seriously ill children, and interprofessional clinicians from April 2021 to March 2023 in a quaternary care pediatric hospital. Duration of follow-up was 1 month. Data were analyzed from January 2022 to March 2023. The PediSICP includes clinician training preceding an ACP communication occasion supported by communication guides and a template for electronic medical record documentation. Outcomes of interest were parent, patient, and clinician experiences with and perceptions of the PediSICP. Feasibility was defined a priori as at least 70% clinician intervention completion rates. A total of 10 virtual trainings were conducted among 40 clinicians, including 27 physicians, 7 nurse practitioners, 5 nurses, and 1 respiratory therapist, and 30 trained clinicians (75%) conducted and documented 42 ACP conversations with 33 parents (median [IQR] age, 43 [35-51] years; 25 [76%] female) and 5 AYAs (median [IQR] age, 19 [17-19] years; 3 [60%] female) who completed the intervention. The median (IQR) conversation duration was 27 (10-45) minutes. Most clinicians (29 clinicians [97%]) agreed that they felt prepared for the conversation, and all clinicians recommended the PediSICP. Parents reported participation was worthwhile (27 parents [84%]), they felt listened to (31 parents [94%]), and would recommend the PediSICP (28 parents [85%]). Parents endorsed higher therapeutic alliance after the PediSICP intervention compared with before (The Human Connection scale mean [SD] score, 57.6 [6.4] vs 55.3 [7.8]; P = .03) and decreased anxiety immediately after the intervention (Generalized Anxiety Disorder-7-item mean [SD] score, 10.1 [7.3] vs 8.4 [6.9]; P = .003), which persisted at the 1-month follow-up (mean [SD] score, 7.7 [6.8]; P = .03). This pilot cohort study found that the PediSICP was feasible, acceptable, and highly valued by clinicians and parents of children with serious illness. These findings suggest that the PediSICP may empower interprofessional clinicians and improve ACP with families of children and AYAs who are seriously ill.

Advance Care Planning for Children With Rare Diseases: A Pilot RCT.

Pediatric rare diseases are often life-limiting conditions and/or require constant caregiving. Investigators assessed the initial efficacy of the FAmily CEntered (FACE) pediatric advance care planning (pACP), FACE-Rare, intervention on families' quality of life. A pilot-phase, single-blinded, intent-to-treat, randomized controlled clinical trial enrolled families from 1 pediatric quaternary hospital between 2021 and 2023. Intervention families received 3 weekly 60-minute (FACE-Rare pACP) sessions: (1) Carer Support Needs Assessment Tool or Action Plan, (2) Carer Support Needs Assessment Tol Action Plan Review, and (3) Pediatric Next Steps: Respecting Choices pACP. Controls received treatment as usual (TAU). Outcome measures were Beck Anxiety Inventory, Family Appraisal of Caregiving, Functional Assessment of Chronic Illness Therapy (FACIT)-Spirituality, and health care utilization. Generalized mixed effect models with γ response assessed the intervention effect at 3-month follow-up. Children (n = 21) were aged 1 to 10 years, 48% male, 24% Black; and 100% technology dependent. Primary family caregivers (n = 21) were aged 30 to 43 years, 19% male, 19% Black; and 27% household income below the Federal poverty level. Dyads underwent 1:1 randomization: 9 to FACE-Rare and 12 to TAU. TAU caregivers reported statistically lower meaning and peace than FACE-Rare caregivers (0.9, P = .03, confidence interval [CI]: 0.75-0.99). Black caregivers reported significantly less caregiver distress (0.7, P = .04, CI: 0.47-0.98) than non-Black caregivers. Poor families reported more anxiety (3.5, P = .002, CI: 1.62-7.94), more caregiver strain (1.2, P = .006, CI: 1.07-1.42); and less family well-being (0.8, P = .02, CI: 0.64-0.95). FACE®-Rare was feasible, acceptable, safe, and demonstrated initial efficacy, providing greater feelings of meaning and peace to caregivers. Poverty impacted well-being. A multisite trial is needed to determine generalizability.

Effect of Family Centered Pediatric Advance Care Planning for Children with Rare Diseases on Meaning/Peace (CO101B)

Effect of Family Centered Pediatric Advance Care Planning for Children with Rare Diseases on Meaning/Peace (CO101B)

Are We on the Same Page? Exploring Pediatric Patients' Involvement With Advance Care Planning.

According to the UN Convention on the Rights of the Child, children have a right to be heard. This also applies to patients in pediatric palliative care (PPC). The aim of this literature review was to explore what is known about the involvement of children (<14 years of age), adolescents and young adults (AYAs) in advance care planning (ACP) in PPC. A search was conducted in PubMed including publications from January 1, 2002 until December 31, 2021. The identified citations had to report on ACP or related terms in any PPC context. A total of n=471 unique reports were identified. Final inclusion criteria were met by n=21 reports, including children and AYAs with diagnoses related to oncology, neurology, HIV/AIDS and cystic fibrosis. Nine reports were from randomized controlled studies, investigating ACP methodology. The main findings were: 1) caregivers are included more often than children and adolescents in ACP, 2) some studies indicate an incongruence between AYAs and their caregivers regarding ACP and treatment preferences, 3) although the process evokes a wide range of emotions, ACP is perceived as helpful by many AYAs CONCLUSION: The majority of studies about ACP in PPC do not include children and AYAs. Whether incongruence reported in some studies between AYAs and their caregivers regarding treatment preferences could be reduced by ACP should be further explored, including the involvement of children and adolescents in ACP, and the impact of pediatric ACP on patient outcomes in PPC.

Pediatric Advance Care Planning: A Scoping Review.

To assess current practice and provide a basis for a provincial template, clinicians at a Canadian pediatric hospice reviewed the literature surrounding pediatric advance care planning (pACP) documentation, process, and implementation for children/youth. The scoping review protocol was developed in accordance with the Joanna Briggs Institute methodology for scoping reviews, and was prospectively registered on the Open Science Framework. MEDLINE, Embase, CINAHL, the Web of Science Core Collection, and Google Scholar, as well as sources of unpublished studies and grey literature, were reviewed. Sixty-four articles met the criteria. Fifteen pACP documentation forms/tools were also identified. Overall, the included articles highlighted that pACP should be a structured, collaborative and iterative process between the family and a trusted or relevant healthcare provider, encompassing medical and non-medical issues. Few articles provided insights into specific elements recommended for advance directive forms. Identified strategies for implementation included a structured, step-by-step pACP interventional tool along with ongoing training, mentorship, and defined organizational structures for the clinician. No single specific ACP tool was acknowledged as the gold standard. Use of a pACP tool, along with ongoing provider education and communication skill development, standardized/accessible documentation, and system-wide quality improvement support, were noted as integral components of pACP.

Qualitative Study of Paediatric Advance Care Planning Through Simulation: How we did it and the Lessons Learned

Simulation is a well-established experiential educational tool in health care, which allows clinicians to learn and practise skills via a replication of reality. However, its use as a research tool is novel and emerging. As we designed a phenomenological study of communication practices around paediatric advance care planning, we came to the view that simulation would be a very useful tool to enable feasible and ethical qualitative study of this complex and sensitive process, which involves discussion about a child’s death in the future and how to prepare for it. There is minimal description in the literature about how to use simulation as a qualitative research method. This article describes how we designed our study, focusing on: (1) the academic rationale for using simulation, (2) designing the simulation-based research method, (3) ensuring psychological safety of all participants in the simulation, (4) trialling the simulation, (5) the logistics of the study and (6) our reflections and learnings after using this novel method. We hope this discussion encourages other researchers to consider simulation as an innovative qualitative research method.

Is Simulation as an Investigative Method as Good as Reality?

Clinical simulation offers an alternative to naturalistic inquiry of phenomena in health care that are ethically and logistically difficult for researchers to access firsthand. However, whether it is a similar experience, and the extent simulation elicits data that is meaningful for the real-world phenomenon under investigation is unknown. To address this gap, we explored the experience of 18 paediatricians who were participants in our wider phenomenological simulation-based study of communication practices related to paediatric advance care planning. We identified that: (1) the simulation felt real despite differences to reality, and (2) the paediatricians’ consciousness of their involvement in research condensed the pace of the advance care planning communication process but did not change their overall approach. In summary, simulation as an investigative method can enrich the understanding of the phenomenon of interest. These findings should encourage researchers to consider simulation for future qualitative inquiry.

Effect of the Family-Centered Advance Care Planning for Teens with Cancer Intervention on Sustainability of Congruence About End-of-Life Treatment Preferences

The effect of pediatric advance care planning (pACP) on the sustainability of end-of-life treatment preference congruence between adolescents with cancer and their families has not been examined. To evaluate the longitudinal efficacy of the Family-Centered Advance Care Planning for Teens with Cancer (FACE-TC) intervention to sustain adolescent-family congruence about end-of-life treatment preferences. This multisite, assessor-blinded, randomized clinical trial enrolled adolescents with cancer (aged 14-21 years) and their family members from 4 pediatric hospitals between July 16, 2016, and April 30, 2019. Participants were randomized 2:1 to FACE-TC (intervention group) or treatment as usual (control group) and underwent 5 follow-up visits over an 18-month postintervention period. Intention-to-treat analyses were conducted from March 9, 2021, to April 14, 2022. Adolescent-family dyads randomized to the FACE-TC group received 3 weekly 60-minute sessions consisting of the discussion and/or completion of the Lyon Family-Centered Advance Care Planning Survey (session 1), Respecting Choices Next Steps pACP conversation (session 2), and Five Wishes advance directive (session 3). Dyads in the control group received treatment as usual. Both groups received pACP information. Congruence was measured by completion of the Statement of Treatment Preferences (a document that discusses 4 hypothetical clinical situations and treatment choices for each scenario: continue all treatments, stop all efforts to keep me alive, or unsure) after session 2 (time 1) and at 3 months (time 2), 6 months (time 3), 12 months (time 4), and 18 months (time 5) after intervention. The influence of FACE-TC on the trajectory of congruence over time was measured by longitudinal latent class analysis. A total of 252 participants (126 adolescent-family dyads) were randomized. Adolescents (mean [SD] age, 17 [1.9] years) and family members (mean [SD] age, 46 [8.3] years) were predominantly female (72 [57%] and 104 [83%]) and White individuals (100 [79%] and 103 [82%]). There was an 83% (104 of 126) retention at the 18-month assessment. Two latent classes of congruence over time were identified: high-congruence latent class (69 of 116 [60%]) and low-congruence latent class (47 of 116 [41%]). The dyads in the FACE-TC group had a 3-fold odds of being in the high-congruence latent class (odds ratio [OR], 3.22; 95% CI, 1.09-9.57) compared with the control group. Statistically significant differences existed at 12 months (β [SE] = 1.17 [0.55]; P = .03]) but not at 18 months (OR, 2.08; 95% CI, 0.92-4.69). In the high-congruence latent class, good agreement (agreement on 2 or 3 of 4 situations) increased over 12 months. White adolescents and families had significantly greater odds of congruence than a small population of American Indian or Alaska Native, Asian, Black or African American, Hispanic or Latino, or multiracial adolescents and families (OR, 3.97; 95% CI, 1.07-14.69). Results of this trial showed that, for those who received the FACE-TC intervention, the families' knowledge of their adolescents' end-of-life treatment preferences was sustained for 1 year, suggesting yearly follow-up sessions. Race and ethnicity-based differences in the sustainability of this knowledge reflect a difference in the effect of the intervention and require further study. ClinicalTrials.gov Identifier: NCT02693665.

Age-Appropriate Advance Care Planning in Children Diagnosed with a Life-Limiting Condition: A Systematic Review.

Pediatric advance care planning (pACP) is an important strategy to support patient-centered care. It is known to be difficult, yet paramount, to involve the child in pACP while adjusting treatment to age and the corresponding stage of development. This systematic review was aimed to evaluate the age appropriateness of pACP interventions by assessing their characteristics, content, and evidence. CINAHL, Embase and MEDLINE were searched from 1 January 1998 to 31 August 2020 in order to identify peer-reviewed articles containing strategies and tools to facilitate pACP in both children (0–18 years) with life-limiting conditions and their families. An assessment of quality was performed using Cochrane tools and COREQ. The full protocol is available as PROSPERO CRD42020152243. Thirty-one articles describing 18 unique pACP tools were included. Most tools were developed for adolescents and young adults. In most cases, the interventions tried to assess the child’s and family’s preferences concerning their current and future hopes, wishes, and goals of the care. This was aimed to enhance communication about these preferences between children, their families, and health-care providers and to improve engagement in pACP. The relevance of an age-appropriate approach was mentioned in most articles, but this was mainly implicit. Seven articles implemented age-appropriate elements. Six factors influencing age appropriateness were identified. Tools to support pACP integrated age-appropriate elements to a very limited extent. They mainly focused on adolescents. The involvement of children of all ages may need a more comprehensive approach.

Conceptualising paediatric advance care planning: a qualitative phenomenological study of paediatricians caring for children with life-limiting conditions in Australia.

ObjectivesAdvance care planning (ACP) helps families and paediatricians prepare and plan for end-of-life decision-making. However, there remains inconsistency in its practice with the limited literature describing what this preparation involves, and whether paediatricians recognise a difference between the process of ACP and its outcomes, such as resuscitation plans. This study aims to understand how paediatricians conceptualise ACP when caring for children with life-limiting conditions (LLC) who are unable to participate in decision-making for his/herself.DesignIndividual, semistructured, vignette-based qualitative interviews.SettingAcute inpatient and long-term outpatient paediatric care in three secondary and two tertiary centres in Victoria, Australia.Participants25 purposively sampled paediatricians who treat children with LLC, outside the neonatal period. Paediatricians were excluded if they worked within specialist palliative care teams or assisted in this study’s design.ResultsFour key themes were identified when approaching end-of-life decision-making discussions: (1) there is a process over time, (2) there are three elements, (3) the role of exploring parental values and (4) the emotional impact. The three elements of this process are: (1) communicating the child’s risk of death, (2) moving from theoretical concepts to practice and (3) documenting decisions about resuscitation or intensive technologies. However, not all paediatricians recognised all elements as ACP, nor are all elements consistently or intentionally used. Some paediatricians considered ACP to be only documentation of decisions in advance.ConclusionThere is a preparatory process of discussions for end-of-life decision-making, with elements in this preparation practised within therapeutic relationships. Complexity in what constitutes ACP needs to be captured in guidance and training to include intentional exploration of parental values, and recognition and management of the emotional impact of ACP could increase its consistency and value.

An Intervention in Congruence for End-of-Life Treatment Preference: A Randomized Trial.

There is a gap in family knowledge of their adolescents' end-of-life (EOL) treatment preferences. We tested the efficacy of Family Centered Advance Care Planning for Teens with Cancer (FACE-TC) pediatric advance care planning (to increase congruence in EOL treatment preferences. Adolescents with cancer/family dyads were randomized into a clinical trial from July 2016 to April 2019 at a 2:1 ratio: intervention (n = 83); control (n = 43) to either 3 weekly sessions of FACE-TC (Lyon Advance Care Planning Survey; Next Steps: Respecting Choices Interview; Five Wishes, advance directive) or treatment as usual (TAU). Statement of Treatment Preferences measured congruence. Adolescents' (n = 126) mean age was 16.9 years; 57% were female and 79% were White. FACE-TC dyads had greater overall agreement than TAU: high 34% vs 2%, moderate 52% vs 45%, low 14% vs 52%, and P < .0001. Significantly greater odds of congruence were found for FACE-TC dyads than TAU for 3 of 4 disease-specific scenarios: for example, "a long hospitalization with low chance of survival," 78% (57 of 73) vs 45% (19 of 42); odds ratio, 4.31 (95% confidence interval, 1.89-9.82). FACE-TC families were more likely to agree to stop some treatments. Intervention adolescents, 67% (48 of 73), wanted their families to do what is best at the time, whereas fewer TAU adolescents, 43% (18 of 42), gave families this leeway (P = .01). High-quality pediatric advance care planning enabled families to know their adolescents' EOL treatment preferences.

18-Month Sustainability of FACE®-TC Pediatric Advance Care Planning for Teens with Cancer: A Longitudinal Randomized Clinical Trial

18-Month Sustainability of FACE®-TC Pediatric Advance Care Planning for Teens with Cancer: A Longitudinal Randomized Clinical Trial

Initiation of paediatric advance care planning: Cross-sectional survey of health professionals reported behaviour.

BackgroundGlobally, initiation of paediatric advance care planning discussions is advocated early in the illness trajectory; however, evidence suggests it occurs at crisis points or close to end of life. Few studies have been undertaken to ascertain the prevalence and determinants of behaviour related to initiation by the healthcare professional.MethodUnderpinned by the Capability, Opportunity, Motivation–Behaviour (COM‐B) model for behaviour change, a cross‐sectional online survey was conducted in United Kingdom and Ireland using a purposive sample of health professionals. Descriptive and inferential statistics were applied and nonparametric statistical analysis used. Open‐ended questions were mapped and correlations between COM‐B and demographic profiles identified.ResultsResponses (n = 140): Paediatric advance care planning was viewed positively; however, initiation practices were found to be influenced by wide ranging diagnoses and disease trajectories. Whilst some tools and protocols exist, they were not used in a systematic manner, and initiation behaviour was often not guided by them. Initiation was unstandardized, individually led, guided by intuition and experience and based on a range of prerequisites. Such behaviour, combined with inconsistencies in professional development, resulted in varying practice when managing clinical deterioration. Professionals who felt adequately trained initiated more conversations (capability). Those working in palliative care specialties, hospice settings and doctors initiated more discussions (opportunity). There was no difference in Motivation between professions, clinical settings or specialisms, although 25% (n = 35) of responses indicated discomfort discussing death and 34% (n = 49) worried about families' emotional reaction.ConclusionAlthough advocated, paediatric advance care planning is a complex process, commonly triggered by the physical deterioration and rarely underpinned by support tools. The COM‐B framework was useful in identifying fundamental differences in initiation behaviour; however, further research is required to explore the complexity of initiation behaviour and the system within which the care is being delivered to identify influences on initiation.

How to Open the Door: A Qualitative, Observational Study on Initiating Advance Care Discussions with Parents in Pediatric Palliative Care.

Context: Advance care discussions (ACD) between health care professionals (HCPs) and parents of children with a life-limiting disease are a core element of successful pediatric advance care planning (pACP). Yet, they are perceived as a challenging situation for all participants. Objectives: Our goal was to investigate the first step of ACD and identify its challenges and helpful communication strategies to develop a conversation guide for initiating the pACP process and structure the conversational opening. Methods: We performed a participant observation of 11 initial ACD and 24 interviews with 13 HCPs and 20 parents of 11 children cared for by 3 different palliative care teams in southern Germany. Qualitative data collection was supplemented by a questionnaire. Content analysis and conversation analysis were used for evaluation. Results: Parents and HCPs start the process with different expectations, which can lead to misunderstandings and confusion. HCPs gain parental cooperation when they express the purpose of the meeting clearly and early, provide structure and guidance, and give parents time to talk about their experiences and feelings. Addressing dying and death is hard for both sides and requires a sensitive approach. Conclusions: Initiating ACD is extremely challenging for all participants. HCPs and parents should clarify expectations and aims at the beginning of the conversation. Future research should focus on how HCPs can be trained for this task and how the right timing for introducing ACD to families can be identified. Clinical Trial Registration number 049-12.

Parents\u2019 experiences of initiation of paediatric advance care planning discussions: a qualitative study

Advance care planning enables parents to discuss their goal and wishes for the future treatment and care of their life-limited or life-threatened child. Whilst research has identified the barriers clinicians face to initiate such discussions, the views of the parents have received scant attention. This qualitative study, using reflexive thematic analysis, aimed to explore parents’ experience of the initiation of their child’s advance care planning discussions, to help provide an understanding to inform future practice. Single interviews were undertaken with 17 non-bereaved and bereaved parents. Parents reported they had engaged with future thinking but needed time before initiating this with clinicians. They identified the need for a trusted professional and time for private, thorough, non-judgemental discussion without feeling clinicians were ‘giving up’. Parents reported that advance care planning discussions were not always aligned to the dynamics of family life. They felt that health professionals were responsible for initiating advance planning conversations according to the families’ individual requirements. There was an apparent lack of standardised protocols to assist paediatric advance care planning discussion initiation.Conclusion: Initiating advance care planning is a complicated process that needs to be tailored to the specific parent and child situation. Health professionals need to appreciate that parents are key contributors to initiate engagement with advance care planning discussions but that they also require support and care, recognising this may facilitate the building of trust, identified as a key corner stone, of paediatric advance care planning initiation and engagement.What is Known:• In paediatric palliative care, parents are challenged with wanting to sustain hope whilst thinking and planning for their child’s end of life. Paediatric advance care planning discussions are often delayed or avoided and triggered by physical deterioration.What is New:• Previous relationship with HCP not essential but parental trust of the HCP is fundamental to Paediatric advance care planning initiation engagement. To build mutual trust health professionals’ approach needs to be professional, respectful and empathetic to the parent and child’s situation.• Subtle paediatric advance care planning parent initiation preparation by HCP is often unnoticed by parents but may be the crux of empowering parents to initiate advance care planning conversations themselves as they need to feel a sense of regaining control before planning ahead.

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

BackgroundResearch 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.MethodsWe 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.DiscussionThe 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 registrationThe study is registered at ISRCTN, ISRCTN33228289. Registration date: January 22, 2021.

Pediatric Advance Care Planning and Families' Positive Caregiving Appraisals: An RCT.

Little is known about how families respond to pediatric advance care planning. Physicians are concerned that initiating pediatric advance care planning conversations with families is too distressing for families. We examined the effect of family centered pediatric advance care planning intervention for teens with cancer (FACE-TC) advance care planning on families' appraisals of their caregiving, distress, and strain. In a randomized clinical trial with adolescents with cancer and their families conducted from July 2016 to April 2019 in 4 tertiary pediatric hospitals, adolescents and family dyads were randomly assigned at a 2:1 intervention/control ratio to either the 3 weekly sessions of FACE-TC (Advance Care Planning Survey; Next Steps: Respecting Choices; Five Wishes) or treatment-as-usual. Only the family member was included in this study. Generalized estimating equations assessed the intervention effect measured by Family Appraisal of Caregiving Questionnaire. Families' (n = 126) mean age was 46 years; 83% were female, and 82% were white. FACE-TC families significantly increased positive caregiving appraisals at 3-months postintervention, compared with those in the control group (β = .35; 95% confidence interval [CI] 0.19 to 0.36; P = .03). No significant differences were found between groups for strain (β = -.14; 95% CI = -0.42 to 0.15; P = .35) or distress (β = -.01; CI = -0.35 to 0.32; P = .93). Families benefited from participation in FACE-TC, which resulted in positive appraisals of their caregiving for their child with cancer, while not significantly burdening them with distress or strain. Clinicians can be assured of the tolerability of this family-supported model.

The Effect of FAmily-CEntered (FACE®) Pediatric Advanced Care Planning Intervention on Family Anxiety: A Randomized Controlled Clinical Trial for Adolescents With HIV and Their Families.

Clinicians fear pediatric advance care planning (pACP) for adolescents is too distressing for families. Multisite longitudinal randomized controlled trial of adolescents with HIV tested the effect of FAmily-CEntered (FACE®) pACP intervention on families' anxiety and depression. One hundred five adolescent/family dyads were randomized to FACE® (n = 54 dyads) or control (n = 51 dyads). Families were 90% African American, 37% HIV-positive, and 22% less than high school educated. Families reported lower anxiety 3 months post-FACE® intervention than control (β = -4.71, 95% confidence interval [CI] = [-8.20, -1.23], p = .008). Male family members were less anxious than female family members (β = -4.55, 95% CI = [-6.96, -2.138], p ≤ .001). Family members living with HIV reported greater depressive symptoms than HIV-uninfected families (β = 3.32, 95% CI = [0.254, 6.38], p = .034). Clinicians can be assured this structured, facilitated FACE® pACP model minimized family anxiety without increasing depressive symptoms. Adolescent/family dyads should be invited to have access to, and provision of, evidence-based pACP as part of patient-centered/family-supported care in the HIV continuum of care.

Improving paediatric advance care planning: Results of a learning needs analysis and simulation-based education programme.

To assess clinicians' experience, attitudes and confidence with advance care planning (ACP) at a quaternary paediatric referral centre using a learning-needs survey, and then apply this information to develop and examine the feasibility of simulation-based education for this topic. An electronic learning-needs survey was distributed to medical, nursing and allied health clinicians from departments who provide primary care for children with life-limiting conditions. Results were incorporated into the design of a simulation-based education session which was piloted with the Royal Children's Hospital Oncology Department. A total of 157 learning-needs surveys were included in analysis, and included quantitative and qualitative responses from nursing, allied health, senior and junior medical staff from intensive care, general and subspecialty medical teams. Most (75.0%) participants had participated in ACP discussions previously. Only 40.1% of participants felt confident to assess appropriate timing of, and 45.2% felt adequately prepared to participate in ACP discussions. Barriers identified were both clinician and patient/parent related, including clinicians not knowing when to address issues (43.9%) or what to say (21.0%). Participants indicated that ACP discussions are most frequently initiated when death is clearly imminent. Following a pilot of simulation-based education with the oncology department, 90% of participants expressed confidence to participate in ACP discussions. Barriers to paediatric ACP, including lack of clinician training, continue to contribute to delayed conversations. Simulation-based education is a valuable and feasible educational tool that can increase clinicians' understanding and confidence in this area.