TABLE 1.
Examples of applying the ACCESS framework to nursing practice.
| “A” advocacy |
|---|
| • Enhance access: provide documentation to facilitate insurance coverage for genetic counselling and testing and to address other economic barriers, e.g., coverage for subsequent treatment |
| • Decisional support: use active listening techniques to reflect back values and preferences for genetic testing decisions |
| • Genetic literacy and numeracy: elicit and evaluate understanding of and attitudes towards genomic healthcare with tailored and linguistically appropriate education materials |
| • Identification: identify “red flags” indicating a genomic condition in personal or family health history. Apply the “too”/“two” rule, i.e., recognizing that genomic conditions may produce extreme phenotypes (“too”) or may cause disease in bilateral organs (“two”). Taking and documenting a 3-generation family history using standard nomenclature; identifying those who could benefit from genomic services |
| • Referrals: Provide information and anticipatory guidance about genetic counselling and make referrals to such services |
| “C” Coping |
| • Addressing unique needs of caregivers: evaluate levels of distress and cancer worry and develop supportive care resources |
| • Individualized approach: tailor approach to respond to client’s priority concerns and informational needs. Use “teach back” to assess and ensure comprehension |
| • Narrative nudges:highlight aspects of patient narratives that shift the perspective towards “living with” a diagnosis rather than being “defined by” a diagnosis |
| • Reframing, emotional support, and stress reducing interventions: use active listening and therapeutic communication to reframe fears and concerns as opportunities to improve health and support relatives, organize personal exchanges with other affected persons |
| • Therapeutic listening: use a strengths-based approach to foster confidence in coping with challenging situations and health threats |
| • Uncertainty management: assess for sources of and responses to uncertainty, offer psychosocial and educational support |
| “C” Communication of risk |
| • Coaching: provide tailored coaching with modeling and opportunities to build self-efficacy |
| • Cultural norms: assess cultural norms and patterns of familial communication |
| • Supporting and empowering: Inquire about people who can initiate and maintain family communication about hereditary conditions. Support in informing biological relatives with letters and build communication strategies for direct information |
| • Therapeutic education: provide information, supporting documents, anticipatory guidance on possible emotional reactions, and reinforcement to build self-efficacy for family discussions |
| “ES” CascadE Screening |
| • Nurse-led interventions: implement rigorous evidence-based interventions that enhance uptake of cascade genetic screening among relatives |
| • Referral sources: provide information on costs of genetic counselling and testing, and insurance coverage to relatives |
| • Resource materials: have materials and resources at hand regarding disease management, prophylaxis, expert care that can be passed on to relatives |
| “S” Surveillance |
| • Continuity and long-term care: assist navigating through lifelong challenges and life-altering decisions (i.e., risk-reducing surgery, fertility preservation). Provide long-term support in specialized clinics |
| • Disease recurrence: follow established, evidence-based ongoing disease-specific surveillance activities (i.e., imaging, blood tests, biomarkers, etc.) |
| • Lifestyle, stress reduction, and health promoting behavioral counseling: enhance health promoting and risk-reducing behaviors. Recognize and address patient experience about risk-reducing surgery, support living with side effects |
| • Therapeutic relationship: use trust in the therapeutic relationship to provide ongoing coping reinforcement, emotional support, and strengths-based encouragement tailored to the individual, familial, and cultural norms |
| • Referrals for additional services: assess for changing needs and refer for additional services (e.g., psychologists, reproductive specialists, etc.), providing comprehensive, coordinated and inter-professional care |