Table 1.

Description of Family-Centered (FACE) Pediatric Advance Care Planning (pACP)-Rare

Session 1: Foundation The Carer Support Needs Assessment Tool (CSNAT)Approach Paediatric. The pCSNAT Approach is a family caregiverled, practitioner-facilitated, validated approach to decreasing caregiver burden, tested in randomised clinical trials with adults in the UK and Australia and adapted here for family caregivers of children with rare diseases.	Session 1: Goals Using a screening format structured around 14 broad support domains. Each domain represents a core family caregiver support domain and these domains fall into two distinct groupings: 1. To identify domains that enable the caregiver to care. 2. To identify domains that enable more direct support for caregivers.	Session 1: Process Stage 1. Trained facilitator orients the family to the CSNAT, which is introduced to the family caregiver by the facilitator. Stage 2: The family is given time to consider in which domains they require more support. Stage 3: An assessment conversation takes place where the facilitator and family discuss the domains for which more support is needed to clarify the specific needs of the family caregiver and their priorities. Stage 4: A shared support plan is made in which the family caregiver identifies the type of input they would find helpful. An action plan is created.
Session 2: Foundation Review of action plan for prioritised support need to gain the caregiver’s perspective.	Session 2: Goals For the family caregiver: 1. Makes process of assessment visible. 2. Legitimises support for the caregiver. 3. Engages caregivers in the assessment process, tailoring support to their needs. For the patient: 1. Supports the caregiver who is then more likely to be able to support the patient. For the practitioner: 2. Reduces likelihood of ‘crisis management’. 3. Helps with ‘expectation management’ about what support is and is not available. For the organisation: 1. Provides a clear record of activity in relation to caregiver assessment and support; useful for auditing. 2. Shows organisational commitment to caregivers.	Session 2: Process Stage 5: Review of action plan for prioritised support need and reassessment of caregiver’s support needs if beneficial, for example, change in child’s condition. Facilitator actively listens, acknowledges and understands difficulties and challenges with unmet needs. Facilitator logs in unmet needs in organisation. Facilitator validates feelings of powerlessness and frustration. Acknowledge there may not be resolutions at this moment. Resource sharing. Increase awareness of being supported. Active listening is part of action plan/support.
Session 3: Foundation Respecting Choices Next Steps pACP Interview, adapted for families of children with rare diseases whose child cannot communicate.	Session 3: Goals 1. To facilitate conversations and shared decisionmaking between the parent and support person about ACP, providing an opportunity to express fears, values, hopes, beliefs and goals for future medical care. 2. To prepare the parent/guardian for future decisionmaking in the event of a medical crisis.	Session 3: Process Stage 1 assesses the parent’s and support person’s understanding of their child’s current medical condition, prognosis and potential complications, as well as his or her fears, concerns, hopes and experiences. Stage 2 explores the philosophy the parent and support person might have regarding planning for future medical decision-making and their understanding of the facts. Stage 3 briefly reviews the rationale for future medical decisions the parent/ legal guardian has considered to further understanding and to build capacity to empower parents as advocates for their child.
Session 4: Foundation The Respecting Choices Pediatric Advance Care Planning is a document that helps the parent(s) express how they want their seriously ill child to be treated in the event of a future medical crisis.	Session 4: Goals To let the treatment team know: 1. The kind of medical treatment the parent(s) want or do not want for their child with a rare disease. 2. How comfortable the parent(s) want their child to be. 3. How the parent(s) want the treatment team to treat their child. 4. What parent(s) want physicians to know about their child.	Session 4: Process Stage 4 uses the previous conversation to clarify goals for life-sustaining preferences and complete the paediatric advance care plan. Stage 5 summarises the value of the previous discussion, as well as the need for future discussions as situations and preferences change. Remaining questions or gaps in information regarding health condition/care/treatment options are identified and the family is referred to the physician or resources. Processes, such as labelling feelings and concerns, as well as finding solutions to any identified problem, are facilitated. Stage 6 develops a follow-up plan based on caregiver’s specific needs, for example, makes a list of questions for physician. Encourages discussion with other family members. Makes appropriate referrals to help resolve conflicts over decision-making (eg, a hospital ethicist or their doctor) or spiritual issues (eg, a hospital chaplain or their clergy). Creates or makes changes to an existing advance directive.