Training activity information
Details
Facilitate and support disclosure of genetic information to family members in a trainee led consultation
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
- Communication channels available in the family for disclosure of genetic information to at risk family members
- Supporting disclosure of genetic information to family members using direct and indirect methods
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?
- Determine what effectively supporting communication about genetic information will involve in this situation.
- Consider how the learning outcomes apply, specifically in relation to supporting the family in navigating sharing and understanding genetic results.
- Discuss with your training officer to gain clarity of what is expected of you in relation to managing group dynamics and maintaining non-directive support during disclosure discussions.
What is your prior experience of this activity?
- Think about what you already know about navigating familial dynamics in genetics.
- Consider possible challenges you might face during the activity, such as family conflict, communication barriers, or differing views on sharing information.
- 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 one member insists on complete confidentiality at the cost of relatives’ right to choose.
- Acknowledge how you feel about leading a session focused on family communication and disclosure.
What do you anticipate you will learn from the experience?
- Consider the specific skills you want to develop, such as specific facilitation techniques or communication strategies to use to support family discussions about genetic information.
- Identify the specific insights you hope to gain into the factors that influence family communication and decision-making regarding genetic risk information.
What additional considerations do you need to make?
- Consider your previous experiences of group facilitation or managing family discussions.
- Identify the legal and ethical considerations around confidentiality and disclosure of genetic information within families, and how you will prepare to address potential conflict or strong emotions that may arise during family discussions.
- Consider whether there are any potential challenges in balancing a non-directive approach with benefit to family members.
- Consider how the patient/family’s culture and circumstances might influence their views on information sharing.
In action
Is anything unexpected occurring?
- Are you noticing anything surprising or different from what you anticipate whilst actively facilitating or supporting family disclosure?
- Are you encountering situations such as:
- Your patient seeming unaware of key information or family history.
- A patient/family member expressing anxiety about sharing information with others?
How are you reacting to the unexpected development?
- How is this impacting your actions? For example, are you letting the patient provide their understanding of the family histoy first, or confirming consent ahead of disclosure?
- Consider the steps you are taking in the moment, such as shifting focus to their concerns and exploring their fears about the impact of disclosure.
- How are you feeling in that moment? For instance, are you finding it difficult to maintain neutrality while aware of the impact that their choices may have on others?
What is the conclusion or outcome?
- Identify how you are working within your scope of practice. For example, were you able to support the familial disclosure process in a way that balanced different members’ needs? Did you need support or guidance to manage this?
- What are you learning as a result of the unexpected development? For example, are you mastering group facilitation techniques or gaining insight into managing volatile family dynamics during genetic disclosure?
On action
What happened?
- Begin by summarising the key steps you took when supporting the disclosure of genetic information within a family.
- Consider specific events, actions, or interactions which felt important, such as disclosure of estrangement or conflict, or specific anxieties about the disclosure process.
- Include any ‘reflect-in-action’ moments where you had to adapt to the situation as it unfolded, for instance, shifting focus to address specific concerns.
- How did you feel during this experience, e.g., did you feel challenged by maintaining confidentiality when information would influence patient care?
How has this experience contributed to your developing practice?
- Identify what learning you can take from this experience regarding family disclosure. What strengths did you demonstrate, e.g., navigating family interactions or awareness of good consent practice?
- What skills and/or knowledge gaps were evident, e.g., managing escalating conflict, establishing trust in the face of privacy concerns, or balancing differing views within the family?
- Compare this experience against previous engagement with similar activities – were any previously identified actions for development achieved?
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 skills in facilitating family disclosure sessions.
- What will you do differently next time you approach family disclosure, for instance, proactively setting expectations regarding confidentiality during the test preparation phase?
- Do you need to practise any aspect of the activity further, such as applying family systems theory or managing group facilitation techniques?
Beyond action
Have you revisited the experiences?
- How have your subsequent experiences of facilitating family disclosure since completing this specific training activity led you to revisit your initial approach or decisions during that activity? For example, has a subsequent case involving conflict or hostility between family members prompted you to re-evaluate your understanding of family systems, communication patterns, and the management of group dynamics.
- Considering what you understand about confidentiality, family systems, and managing conflict now, how have you adapted your family disclosure practice? For example, how you reviewed and integrated ethical frameworks for managing the complexities of sharing information within a family context.
- Has discussing cases involving resistance to disclosure or confidentiality conflicts with colleagues, peers, or supervisors changed how you now view your initial experience in this training activity? For example, hearing a senior colleague talk about a case where fundamental disagreements led to relationship breakdown may have refined your approach.
How have these experiences impacted upon current practice?
- How has reflecting back on this specific training activity, combined with everything you’ve learned since, shaped your current approach to facilitating and supporting family disclosure?
- How does this evolved understanding help you identify when something is beyond your scope of practice or requires escalation? For example, when intractable conflict between family members requires MDT or senior team consultation regarding ethical practice.
- Looking holistically at your training journey, how has this initial family disclosure experience, revisited with your current perspective, contributed to your development in communication, ethical practice, and decision-making skills?
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. |
| # 3 |
Outcome
Apply communication skills to provide complex genomic test results in an empathic manner. |