Training activity information
Details
Prepare individuals for the potential outcomes of diagnostic genetic tests in trainee led consultations
Type
Entrustable training activity (ETA)
Evidence requirements
Evidence the activity has been undertaken by the trainee repeatedly, consistently, and effectively over time, in a range of situations. This may include occasions where the trainee has not successfully achieved the outcome of the activity themselves. For example, because it was not appropriate to undertake the task in the circumstances or the trainees recognised their own limitations and sought help or advice to ensure the activity reached an appropriate conclusion.
Reflection at multiple timepoints on the trainee learning journey for this activity.
Considerations
- Alternative options and the legitimacy of each option
- The benefits and risks of the alternatives, taking account of patients’ concerns and personal circumstances
- The uncertainties associated with available options
- Assessing the individual’s understanding of the decision
- Information regarding the potential outcomes of a genetic test to identify the underlying cause for their condition
- Eliciting individual preferences for risk management options
- Exploring with patients their anticipated response to the potential outcomes of a genetic test to identify the underlying cause of their condition
- Informed consent
- Genetic tests available for different genetic conditions and clinical situations
- Procedure to order genetic tests
- The effect of genetic test results on patient care and the care pathway for different genetic conditions
- Risk, benefits and limitation of interventions
- Implications for family members
Reflective practice guidance
The guidance below is provided to support reflection at different time points, providing you with questions to aid you to reflect for this training activity. They are provided for guidance and should not be considered as a mandatory checklist. Trainees should not be expected to provide answers to each of the guidance questions listed.
Before action
What does success look like?
- Identify what is expected of you in relation to knowing if the individual or couple feels prepared for the potential outcomes of prenatal genetic testing, including positive, negative, or uncertain results.
- Consider how the learning outcomes apply, specifically in relation to ensuring that the discussion is sensitive to the context of pregnancy and potential decisions about the future of the pregnancy.
- Discuss with your training officer to gain clarity of what is expected of you in relation to the discussion of difficult choices regarding a pregnancy and the boundaries of non-directive counselling.
What is your prior experience of this activity?
- Think about what you already know about discussing sensitive topics related to pregnancy, health, and potential difficult decisions.
- Consider possible challenges you might face during the activity, such as the unique challenges of preparing individuals for prenatal test outcomes compared to diagnostic tests in other contexts.
- Recognise the scope of your own practice for this activity i.e. know when you will need to seek advice or help, and from whom. You will need to seek advice from your Training Officer when required, for example if testing strategy is unclear or if the patient or couple expresses profound distress or conflict regarding their options, requiring additional support.
- Acknowledge how you feel about discussing potential findings that could lead to difficult choices regarding a pregnancy.
What do you anticipate you will learn from the experience?
- Consider the specific skills you want to develop, such as specific language or approaches to use to communicate potential prenatal outcomes with sensitivity and clarity, drawing upon previous experiences of the activity.
- Identify the specific insights you hope to gain into supporting individuals/couples through the decision-making process surrounding prenatal testing and its potential results.
What additional considerations do you need to make?
- Consider your previous experiences of prenatal counselling or sensitive decision-making discussions.
- Identify important information you need to consider before embarking on the activity, such as the specific testing options available and the risks and timelines associated with these choices.
- Consider the ethical considerations related to prenatal testing, including disability ethics, the rights of the child, and what support pathways are available for individuals/couples receiving prenatal results.
In action
Is anything unexpected occurring?
- Are you noticing anything surprising or different from what you anticipate whilst actively preparing the individual/couple for potential prenatal test outcomes?
- Are you encountering situations such as:
- The individual/couple expresses unexpected or strong views on termination or disability that contradict departmental policy, or that indicate the couple are not in agreement?
- They disclose a prior loss or adverse experience that significantly colours their perception of the potential test outcomes?
How are you reacting to the unexpected development?
- How is this impacting your actions? For example, are you responding to the situation appropriately? Are you adapting or changing your approach to managing the non-directive nature of the discussion while acknowledging their strong views?
- Consider the steps you are taking in the moment, such as: Immediately acknowledging the prior loss and adapting your discussion points to show sensitivity to the context of pregnancy; or explicitly clarifying the non-directive role of genetic counselling regarding tests and termination.
- How are you feeling in that moment? For instance, are you finding it difficult to balance the discussion of complex options with maintaining non-directive support? Is it affecting your confidence in adequately preparing them for potential adverse results in this high-stakes context?
What is the conclusion or outcome?
- Identify how you are working within your scope of practice. For example, were you able to address their concerns and provide balanced information regarding prenatal outcomes within the trainee-led setting? Or, are you needing support because the intensity of their distress, technical complexity or conflict regarding termination options that requires immediate senior consultation and/or psychological referral?
- What are you learning as a result of the unexpected development? For example, are you learning in the moment about the critical importance of non-directive language when discussing high-stakes prenatal outcomes?
- Are you enhancing your skills in managing conflicting agendas, or supporting complex decision making?
On action
What happened?
- Begin by summarising the key steps you took when discussing specific prenatal outcomes and their implications.
- Consider specific events, actions, or interactions which felt important, such as the moment the individual/couple expressed uncertainty, or strong views on termination or disability.
- Include any ‘reflect-in-action’ moments where you had to adapt to the situation as it unfolded, for instance, immediately adapting your language to show sensitivity to a deeply personal prior loss disclosed by the patient.
- How did you feel during this experience, e.g., did you feel challenged by the unique challenges of the prenatal context? Are there topics that feel harder to bring up, such as termination options?
How has this experience contributed to your developing practice?
- Identify what learning you can take from this experience regarding prenatal outcomes preparation. What strengths did you demonstrate, e.g., applying critical communication and counselling skills appropriate for the prenatal setting?
- What skills and/or knowledge gaps were evident, e.g., difficulty navigating decision-making about pregnancy while maintaining non-directive support.
- Compare this experience against previous engagement with similar activities – were any previously identified actions for development achieved? Has your practice improved in approaching the sensitivity of this topic?
- Identify any challenges you experienced, such as needing to seek advice or clarification on scope of practice regarding the need to manage extreme conflict or distress regarding termination options, and how you reacted to this.
What will you take from the experience moving forward?
- Identify the actions or ‘next steps’ you will now take to support the assimilation of what you have learnt, including from any feedback you have received, with regards to improving sensitivity and effectiveness in discussing potential prenatal outcomes.
- What will you do differently next time you approach prenatal preparation, for instance, by proactively clarifying the boundaries of non-directive counselling regarding termination options?
- Do you need to practise any aspect of the activity further, such as refining communication techniques for high-stakes reproductive decision-making?
Beyond action
Have you revisited the experiences?
- How have your subsequent experiences of preparing individuals for prenatal test outcomes since completing this specific training activity led you to revisit your initial approach or decisions during that activity?
- Considering what you understand about prenatal context sensitivities, non-directive support, and navigating high-stakes decisions now, how have you since adapted our prenatal practice? For example, have you proactively reviewed and integrated communication techniques to discuss reproductive options and deliver bad news results in the prenatal setting?
- Has discussing cases involving strong parental views on termination or disability, or the impact of time pressures in the prenatal context, with colleagues, peers, or supervisors changed how you now view your initial experience in this training activity?
How have these experiences impacted upon current practice?
- How has the learning from this initial training activity, in combination with subsequent experiences, contributed to your overall confidence and ability in discussing reproductive options and providing non-directive support?
- How has reflecting back on this specific training activity, combined with everything you’ve learned since, shaped your current approach to preparing individuals for prenatal outcomes?
- Looking holistically at your training journey, how has this initial prenatal outcome preparation experience, revisited with your current perspective, contributed to your development in meeting the learning outcomes related to communication, decision-making, and ethical practice? For example, how this foundational experience has supported your development in managing acute distress and reflecting on family context when delivering bad news in this sensitive area.
Relevant learning outcomes
| # | Outcome |
|---|---|
| # 1 |
Outcome
Lead on establishing the patient agenda and psychosocial needs in complex genetic and genomic counselling consultations, under the supervision of a GCRB registered Genetic Counsellor. |
| # 2 |
Outcome
Employ counselling skills to facilitate complex decision making during genetic and genomic counselling consultations. |
| # 3 |
Outcome
Apply communication skills to provide complex genomic test results in an empathic manner. |