Communicating effectively with AYAs diagnosed with cancer

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Psychosocial management of AYAs diagnosed with cancer: Guidance for health professionals > Communicating effectively with AYAs diagnosed with cancer
Contents   Key points   Recommendations   Introduction   Communication   Relationships
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Overview

Communicating information effectively to young people requires a tailored approach.[1]

When communicating with young people, health professionals need to respond to each patient’s level of maturity and independence [2] to ensure the basic rights of the patient are being met, including their rights to:

  • understand their illness
  • understand its treatment
  • understand the possible implications of treatment
  • understand any choices they may have
  • have their personal choices acted upon.[3]


It is important to consider that for most adolescents and young adult patients their cancer treatment is their first experience of the acute health system. They do not have experience of illness or dealing with different health professionals that many adults have when they are confronted with a cancer diagnosis. Assuring and maintaining confidentiality is essential: young people who do not feel that their confidentiality will be respected are less likely to comply with treatment.

Communicating effectively with AYAs may be a challenge for professionals used to working with other adults who generally share the same views and expectations about healthcare, and those from the paediatric sector, who most commonly work with the parents of their patients to achieve the best outcome.[4]


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Tailor communication style to meet the needs of the patient

  • Talk directly to the patient using clear and easy to understand language
  • Discuss complex information in a number of different ways
  • Assist the patient by initiating common questions
  • Be empathic, respectful, and non-judgemental


tick icon Address issues of confidentiality and privacy early

  • Negotiate the level of family involvement the young person would prefer


tick icon Actively engage with the AYA patient

  • Emphasise the collaborative nature of the relationship
  • Develop a holistic approach to patient management by getting to know the young person
  • Focus on interpreting the responses of the patient within a developmental framework
  • Nurture realistic expectations

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Tailor communication style to meet the needs of the patient

When providing information to a young patient, select and tailor it to match their age and/or maturity. It is important to note that chronological age does not necessarily match a young person’s maturity levels. It can be difficult for health professionals to assess a young person’s abilities and/or competence [5] and this may be an area that requires specialist assistance and/or team consensus.

  • Provide information that is relevant to the patient’s life stage and level of cognitive and emotional development.[2] Treat with respect the concerns expressed by the patient and keep in mind that an AYA patient’s priorities may be different to those of the treating professionals, their family members or older patients. For example, we know adolescence is a time when peer approval is important, so young patients may need information about maintaining their existing friendships as well as the value of contact with peers who have experienced cancer.
  • Reinforce the collaborative nature of the relationship between the health professionals and patient. Direct information to the patient, not their parents. Sit down at the patient’s level, rather than stand over their bed. Ensure the young person, at this stage of increasing autonomy, feels consulted and involved in treatment decisions.[6][7]
  • Complex information, about treatment regimens for example, should be provided in a number of different ways, including using written information and diagrams where possible.[8]
  • Patients may require frequent repetition of information to assist understanding. Information should be repeated at different stages of treatment and during different interactions with the person.[6]
  • Most AYAs are computer literate and regularly use the Internet as a source of information and support.[9] Given the limited number of websites available with information targeted directly to young patients,[10] health professionals should support them by recommending websites that are safe, authoritative and appropriate to their age. See Recommended information and resources for patients.
  • Assist the young person by initiating common questions, rather than waiting for them to do so.[6] Young people may be reluctant to ask questions for fear of seeming ‘stupid’. They may feel intimidated in healthcare settings. Silence should not be interpreted as a lack of desire to understand what is going on or an indication that they do not have any further questions.
  • Be empathic, respectful, and non-judgemental. This is particularly important when discussing issues such as non-adherence to their treatment regimen, missed appointments, sexual practices or risky behaviours such as substance misuse that may result in harm to the young person.[4][6] It is important to correct misperceptions and reinforce the importance of adhering to therapy, but a punitive tone is likely to make a young patient reject advice.[11]

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Address issues regarding confidentiality

Respecting and maintaining confidentiality is an essential component of working with young people.[7] Some young people may not speak openly and honestly about their fears or concerns with parents or partners present,[7][12] as they may wish to protect them from further distress. Other patients may not wish to disclose activities, such as exploratory sexual activities, use of alcohol and illicit substances or emerging mental health problems as they may fear being judged or worry that it will negatively impact on their relationship with the treating team and/or family members.

Unless the patient is at risk to themselves or others, or disclosure is required by law or in accordance with institutional or state-based policies, assure confidentiality in all clinical settings. Young people who do not feel that their confidentiality will be respected are more likely to delay or forgo the use of important health services.[7] This may translate to missed appointments or non-compliance.

  • Confidentiality is best addressed in a transparent manner with both the young person and their family at the initial consultation and at regular intervals throughout the patient journey.[6]
  • Ensure that young patients who attend appointments with family members are given the opportunity to speak alone with their treating team [13] and are assured that information will not be shared with family members. Reinforce to the AYA patient and their family members that the patient’s needs are pivotal. Explain upfront to family members that this is not about excluding them but giving the young person an opportunity to talk to their doctor or other health professionals independently. Reinforce to the AYA patient and their family members that the patient’s needs are pivotal. When providing information, particularly about personal or sensitive topics, to a young patient, include contact details for a team member they can talk to or email if they have questions.
  • Have an open and honest discussion with the young person about the level of family involvement they wish, and a clear understanding of what information will remain private between the patient and the treating team. This should be re-negotiated at regular stages during the patient’s cancer journey.[5]
  • Also support and advocate the importance of maintaining the young person’s privacy and confidentiality in their educational or vocational settings.

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Actively engage with the AYA patient

Developing a successful working relationship with the patient is essential to best practice care as it enhances trust and communication and promotes adherence.[14] Young people can be difficult to engage in a clinical setting. This is particularly the case when they feel angry, scared or intimidated – all of which are common emotions during the early stages of a cancer diagnosis and cancer treatment. For health professionals who routinely work with adult or child patients, engaging with an AYA patient is likely to involve changes to normal practice.

  • Be yourself and be honest. Young people want a trusted professional, not a friend.
  • Be aware of where the patient is in their development (physical, emotional and social) and how this impacts upon their experience and responses. A patient’s age, stage of life, peer relationships and family dynamics may impact their distress levels, self-esteem, amount and type of information they need, perceptions of future, existential perspectives and other subjective components of the cancer experience.[15] Try to understand and interpret behaviours from the patient’s perspective. (See Understanding the developmental needs of AYAs for more information).
  • Set well-defined boundaries, but show flexibility when possible as this can promote trust and safety.[15]
  • It is important to build the relationship through negotiation and collaboration.[13] Highlight areas of care planning that are open to negotiation and encourage the young person to participate by explaining options and offering them choices.[4] This approach can enhance a young person’s sense of control and autonomy during treatment.[6][5]
  • Build the patient’s trust by following through on commitments. Young people are often less forgiving when commitments are broken due to their cognitive development and egocentrism. If commitments need to change, explain the reasons why to the young person in a timely manner.[4]
  • Have a holistic approach to managing the young person. Knowing the young person well can assist in anticipating future problems and avoiding potential crises.[14]
  • Nurture realistic expectations as this will create the opportunity for goals to be met. This may mean discussing the same information repeatedly until the young person understands what is being discussed, what the goals are, and how these can be achieved.

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References

  1. Christie D, Viner R. Adolescent development. BMJ 2005 Feb 5;330(7486):301-4 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/15695279.
  2. 2.0 2.1 Ferrari A, Thomas D, Franklin AR, Hayes-Lattin BM, Mascarin M, van der Graaf W, et al. Starting an adolescent and young adult program: some success stories and some obstacles to overcome. J Clin Oncol 2010 Nov 10;28(32):4850-7 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/20479411.
  3. Zebrack B. Information and service needs for young adult cancer patients. Support Care Cancer 2008 Dec;16(12):1353-60 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/18386075.
  4. 4.0 4.1 4.2 4.3 Palmer S, Thomas D. Adolescent and Young Adult Cancer Program, A Best Practice Framework for Working with 15-25 Year Old Cancer Patients Treated Within the Adult Health Sector. Melbourne: Peter MacCallum Cancer Centre; 2008 Abstract available at http://www1.petermac.org/ontrac/pdf/AYA-Practice-Framework.pdf.
  5. 5.0 5.1 5.2 Duncan RE, Sawyer SM. Respecting adolescents' autonomy (as long as they make the right choice). J Adolesc Health 2010 Aug;47(2):113-4 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/20638002.
  6. 6.0 6.1 6.2 6.3 6.4 6.5 Windebank KP, Spinetta JJ. Do as I say or die: compliance in adolescents with cancer. Pediatr Blood Cancer 2008 May;50(5 Suppl):1099-100 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/18360837.
  7. 7.0 7.1 7.2 7.3 English A, Ford CA. More evidence supports the need to protect confidentiality in adolescent health care. J Adolesc Health 2007 Mar;40(3):199-200 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/17321417.
  8. National Breast Cancer Centre, National Cancer Control Initiative. Clinical practice guidelines for the psychosocial care of adults with cancer. Camperdown, NSW: National Breast Cancer Centre 2003 Jan 1 Abstract available at http://www.nhmrc.gov.au/_files_nhmrc/file/publications/synopses/cp90.pdf.
  9. Schiffman JD, Csongradi E, Suzuki LK. Internet use among adolescent and young adults (AYA) with cancer. Pediatr Blood Cancer 2008 Sep;51(3):410-5 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/18506753.
  10. Stinson JN, White M, Breakey V, Chong AL, Mak I, Low KK, et al. Perspectives on quality and content of information on the internet for adolescents with cancer. Pediatr Blood Cancer 2011 Jul 15;57(1):97-104 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/21328524.
  11. D'Agostino NM, Penney A, Zebrack B. Providing developmentally appropriate psychosocial care to adolescent and young adult cancer survivors. Cancer 2011 May 15;117(10 Suppl):2329-34 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/21523754.
  12. Hilton S, Emslie C, Hunt K, Chapple A, Ziebland S. Disclosing a cancer diagnosis to friends and family: a gendered analysis of young men's and women's experiences. Qual Health Res 2009 Jun;19(6):744-54 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/19342703.
  13. 13.0 13.1 Sawyer SM, Aroni RA. Self-management in adolescents with chronic illness. What does it mean and how can it be achieved? Med J Aust 2005 Oct 17;183(8):405-9 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/16225444.
  14. 14.0 14.1 Butow P, Palmer S, Pai A, Goodenough B, Luckett T, King M. Review of adherence-related issues in adolescents and young adults with cancer. J Clin Oncol 2010 Nov 10;28(32):4800-9 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/20212260.
  15. 15.0 15.1 Palmer, S. Improving care for AYA patients treated within adult hospitals: what can be done right now? Cancer Forum 2009;33(1):22-25 Abstract available at http://www.cancerforum.org.au/Issues/2009/March/Forum/Improving_care_for_AYA_patients.htm.

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