Is your change team ready to engage persons with lived experience?

  • The readiness of a change team to accept and embrace persons with lived experience, as part of a change initiative, can impact outcomes.
  • Sometimes, you and your change team members may need to shift your perspectives of persons of lived experience from recipients of care to collaborators or partners of your change initiatives.
  • Change teams that determine they are not ready to engage persons as part of the change initiative are encouraged to explore their attitudes and beliefs regarding the role and benefits of persons/patients and families.
  • Consider reaching out to other change teams that have successfully engaged persons of lived experience, or to a patient/family advisory council member, if available, for guidance and recommendations.

    Best practices on engaging persons with lived experience

    Here are several best practices from RNAO’s Person- and Family-Centred Care BPG (RNAO, 2015) that you and your team can apply when engaging persons with lived experience:

    • Establish relationships and empower partnerships based on trust, sympathetic presence and respect.
    • Use effective verbal and non-verbal communication that is complete, unbiased and affirming.
    • Facilitate the timing and continuity of care.
    • Address the whole person’s needs and priorities for care, not just their symptoms or disease.
    • Include the person’s knowledge, values, beliefs and cultural background into planning.
    • Collaborate with the person and promote their involvement through shared decision making.
    • Consistently keep persons with lived experiences updated on project milestones.
    Communication strategies

    Effective, two-way communication between persons with lived experience and your team is a critical component in ensuring a successful working relationship. Therefore, communication strategies (direct eye contact, smiling and displays of emotion) should provide a safe environment for persons with lived experience to express their feelings and ideas when partnering with your team (RNAO, 2015). You and your team can apply several communication strategies recommended by RNAO’s Person- and Family-Centred Care BPG (RNAO, 2015) when interacting with persons with lived experience at different intervals throughout your project.

    Preparing for the initial meeting(s)

    During your initial meeting(s), you and your team may wish to focus on getting to know the persons with lived experience, and building a rapport. Here are some communication strategies to help you set the stage for a strong working relationship:

    • Introduce yourself (name) and your professional status (e.g., registered nurse, registered practical nurse, occupational therapist, doctor).
    • Explain your role and the duration of their expected involvement in the project.
    • Ask the person how they prefer to be addressed and always address the person by this name.
    • Be aware of your body language, and be respectful when: (a) exploring the person’s story; (b) seeking answers related to their beliefs, values, culture and what they know about their health, and; (c) understanding the impact of their health on their life.
    • Without rushing, encourage the person to tell their story and explore with them: (a) what they understand and are feeling about their experience of health, and; (b) what is most important to them for their care.
    • Accept, repeat and validate your understanding of any information (including thoughts and feelings) the person provides about their experience of health and their care.
    • Adjust your communication style (tone of voice and volume, cadence, pauses and silences) to accommodate the person’s needs (age and developmental stage, cognitive status, language and literacy levels).
    • Reflect on your manner and style of communication, and ask the person, their family and caregivers if it is acceptable.
    When working together

    Here are several communication strategies that you and your team can use when interacting with persons with lived experience:

    • Listen without interrupting.
    • Use positive and non-judgmental responses when speaking.
    • Do not rush the person. Provide them with time to process what is being said and to ask questions or provide feedback.
    • Elicit and respond to emotion with the use of empathy, understanding and caring.
    • Be sensitive to non-medical dimensions of care (cultural beliefs, values and spirituality).
    • Attend to physical comforts.
    • Use a positive approach by motivating, encouraging and legitimizing the person’s experiences.
    • Tailor communication strategies based on the health literacy, cultural and language needs of the person and their family.
    Building active partnerships and meaningful roles

    It is important for you and your team to seek the person’s story about their experience, involve them as active partners in meaningful roles, and invite them to serve on committees within the organization. Doing so ensures the person’s perspective on health care and service delivery is central to implementation planning and quality improvement (RNAO, 2015). Read more about engagement opportunities in Engaging advisors and advisory councils section.   

    Considering diversity

    Engagement between you and persons with lived experience is stronger when there is respect and awareness of the diversity of voices. Relationships are strengthened through an intentional process to understand and reflect upon who we are, our unique perspectives, our bias and assumptions that influence how we behave, and how we relate to others. These reflections reveal how our experiences and perspectives are shaped by many intersecting forces and beliefs. We must open our minds and hearts to the possibilities that emerge through a deeper understanding of ourselves and our collective capacity for relationship-based care.

    The Valuing All Voices Framework

    The Valuing All Voices Framework, developed by the University of Manitoba Centre for Healthcare Innovation (2020), embraces a health equity lens to engagement, considering trauma-informed care, intersectionality and reflexivity. The key pillars are relationship building, trust, self-awareness, acceptance, communication and education:

    1. Relationship building: Characterized by diversity and inclusion; strengthens connections and leads to better results.
    2. Trust: Emerges when people feel safe, valued, respected and supported.
    3. Self-awareness: Seeks to understand diverse standpoints, reflects on self and acknowledges personal bias.
    4. Acceptance: Intentional understanding that is free of judgment.
    5. Communication and education: Generate an understanding of needs, expectations and results necessary to support and sustain the work.