Keeping the young person connected with life outside their cancer treatment
Keeping the young person connected with life outside their cancer treatment
Maintaining a reasonable quality of life throughout cancer treatment is essential to:
- the psychosocial health and coping of the patient
- their motivation to continue with treatment, and
- the likelihood that they will achieve healthy survivorship.
It is important that throughout their cancer journey the young person has the opportunity to continue to live as normal a life as possible, achieve developmental tasks, and participate in the many milestones that occur during this stage of life. Education, employment, family and peer relationships are essential parts of a young person’s life and should be addressed and supported throughout treatment.
It is important to keep the patient focused on their future and ‘life after cancer’  while being mindful of the possibilities associated with a negative treatment outcome and potential relapse. Remaining connected to ‘normal’ life activities will contribute significantly to this.
Assist the patient to maintain peer relationships
Adolescence and young adulthood is a time of increasing autonomy and focus on peer group acceptance and peer relationships. For AYA patients, cancer and its treatment imposes increased dependency on parents and sets them apart from their healthy peers.
Maintenance and ongoing development of peer and other relationships is crucial in supporting an AYA patient to sustain motivation during treatment and promoting healthy survivorship. Social support is a recognised protective factor in the face of stress, contributing to the quality of life of the patient and reducing psychological distress. More advice about peer relationships is in the Relationships section.
- Maintaining connections with peers, groups and organisations that the young person was involved with prior to a cancer diagnosis is an important contributor to coping during treatment and into survivorship.
- For some, new social networks provided by cancer peers may offer much needed peer support and promote the successful achievement of age-related developmental tasks and positive psychosocial growth.
- Hospitals can support the maintenance of connections with healthy peers by having a welcoming environment and flexible hours that encourage visitors. Ideally AYA patients should have a dedicated space where they can interact with friends.
Provide support and opportunity for the patient to continue with their education
All young people of school age have the right to continue education despite their medical situation and the treating team has a responsibility to facilitate this. If the needs of the patient and the needs of the school can be supported, the likelihood of re-integration problems following treatment completion and during treatment can be minimised.
Older AYA patients who are attending, or making the transition to, University or TAFE should be supported in their education decisions and in advocating for themselves within their educational institution. In order to achieve this, a thorough understanding of the educational needs and goals of the patient is required. (A recent RCH Education Institute study provides further information about the needs of young people with health conditions, including cancer, in relation to staying engaged in school and employment pathways).
- A key contact person should be identified within the school, university or TAFE campus. For schools this may be the year level coordinator or Student Welfare Coordinator. In the university system support staff can be accessed once students register with the Disability Liaison Unit (or similar).
- Health professionals should work with schools, and in consultation with the patient and their family, to support the patient’s health and engagement in the school environment through the development, and continual review, of student health support and individualised learning plans or similar (policies differ in each state/territory).
- Once permission has been obtained from the patient, assist the school/university/TAFE to manage the responses of the other students.
- Support the continued connection of the patient to the school/university/TAFE with extracurricular activities where possible e.g. participating in formals, celebrations and information sessions.
- Liaise regularly with the school/university/TAFE campus in relation to treatment changes and hospital admissions so that appropriate adjustments can be made to academic programs and special consideration needs.
- Revisit all communications and plans with education institutions when there is a risk that previous information may not be passed on. This is particularly important at the change of school years, transition to higher education settings or if there is a change of key personnel at the education institution.
- Ensure that the patient has a private space to study in the treatment centre when needed and where possible has access to information technology (IT) to support academic tasks and connections to education staff. These may include laptops, online tutoring and videoconferencing.
- Negotiate periods of reduced interruptions where possible in hospital if the young person wishes to study.
- Provide information about education support grants and scholarships offered by not for profit organisations and ‘special consideration applications’ or special entry access schemes (SEAS).
- Consider the long-term complications related to the cancer therapy and the patients continued engagement in education. Young people may change their vocational direction during or once therapy is completed and access to educational professionals to assist with quality careers guidance is recommended.
- Returning to education can be a particular challenge for survivors and an area that may require dedicated post-treatment support. Barriers to successful re-entry to school include fatigue, anxiety and poor communication between families and the broader school community.
- Treating health professionals can help facilitate successful re-entry for the patient, their family and schools. Areas to address with the patient include the impact of ongoing fatigue and physical effects, negotiating missed work, and re-adjusting to new education and study routines. Patients may need support in managing fatigue and other physical symptoms or disabilities (e.g. negotiating shorter days, regular time out/breaks, or appropriate positioning in the class), adjusting to new routines and ’catching up’ (e.g. through additional tutoring).
Assist the young person to address issues regarding their employment options
By virtue of their age, AYA patients will be new to the workforce and many will be employed in casual or part-time positions. They may have limited sick or annual leave and may not have had the opportunity to build the ‘goodwill’ of employers the way older patients may have. Issues regarding the employment of AYA patients, including rights at work, leave entitlements and access to Centrelink support, are all areas that need to be canvassed proactively and at key points throughout and after treatment.
- Where possible, liaise with employers in relation to implementing flexible working conditions and establishing communication links for the patient in order to remain a valued and participating member of their workplace. A workplace that is accommodating, supportive and has a positive social climate can enhance effective return to work for cancer survivors.
- Proactively explore and, if indicated, obtain patient consent to provide support letters to employers.
- Provide advocacy or access to the appropriate professionals for this purpose e.g. to Centrelink, apprenticeship boards, and traineeship coordinators.
- Consider a referral to employment support agencies to access individualised assistance for the young person with maintenance of employment.
- Returning to work can be particularly challenging for survivors but has a crucial role in quality of life. Survivors may benefit from the engagement of specialised employment and rehabilitative services in their efforts to gain or return to employment. Provide access or information about local training and career development advisory services to explore return to work or re-training opportunities.
- Consider and discuss application to not for profit organisations for vocational support grants and scholarships.
- Consider referral to a social worker to help the patient manage these issues.
Support the young person to access appropriate financial information and support
The financial impact of cancer and its treatment is significant for many young people and their families. The challenges of reduced income and increased expenses can impact on opportunities for young people to participate in ‘normal’ life. Working effectively with Centrelink is an area that often proves particularly challenging for the patient and their family. The support of an advocate within the treating team may be crucial in ensuring that the patient’s rights are met.
- Refer the young person and/or their family to a social worker for assistance in navigating the Centrelink system to obtain entitlements and advice about other sources of financial assistance such as grants from not for profit organisations and early access to superannuation.
- Consider referral to financial counselling and/or a social worker to assist the patient in managing these issues.
Support the ‘normal’ development of the AYA patient throughout their treatment journey
The usual issues and stresses associated with normal AYA development will continue regardless of a cancer diagnosis and treatment. While a diagnosis can adversely impact on ‘normal’ AYA development, appropriate support and services can prevent or reduce negative outcomes. Engaging young people around these issues can be complex and is exacerbated by social taboos and challenges in communicating about sensitive issues such as sexuality, risk taking, substance use and other issues that are part of the AYA life stage. To promote healthy survivorship, the treating team plays an important role in supporting normal AYA development.
- It is important to support opportunities to continue to live as normal a life as possible, to continue to achieve developmental tasks, and participate in the many milestones that occur during this stage of life.
- To successfully support young people through these challenges establish a culture of trust, non-judgmentalism and open communication. Demonstrating an understanding of the importance of these parts of the young person’s life will help build a trusting relationship.
- The normal developmental needs of the patient should not be overlooked by the treating team. If addressed appropriately, these developmental needs can be used to promote adherence through the use of ‘adherence hooks’.
- Maintaining professional boundaries is an essential part of supporting healthy AYA development and peer connection. Those caring for the young person should promote and facilitate normal socialisation with peers, rather than to provide a ‘new set’ of professional peers. Appropriate relationships with health professionals should allow the young person to adapt to the treatment setting without becoming dependent on it for social support and interaction.
- Morgan S, Davies S, Palmer S, Plaster M. Sex, drugs, and rock 'n' roll: caring for adolescents and young adults with cancer. J Clin Oncol 2010 Nov 10;28(32):4825-30 Available from: http://www.ncbi.nlm.nih.gov/pubmed/20498401.
- Stern M, Krivoy E, Foster RH, Bitsko M, Toren A, Ben-Arush M. Psychosocial functioning and career decision-making in Israeli adolescent and young adult cancer survivors. Pediatr Blood Cancer 2010 Oct;55(4):708-13 Available from: http://www.ncbi.nlm.nih.gov/pubmed/20589658.
- 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 Available from: http://www.ncbi.nlm.nih.gov/pubmed/21523754.
- Treadgold CL, Kuperberg A. Been there, done that, wrote the blog: the choices and challenges of supporting adolescents and young adults with cancer. J Clin Oncol 2010 Nov 10;28(32):4842-9 Available from: http://www.ncbi.nlm.nih.gov/pubmed/20351337.
- Olsen PR, Harder I. Keeping their world together--meanings and actions created through network-focused nursing in teenager and young adult cancer care. Cancer Nurs 2009;32(6):493-502 Available from: http://www.ncbi.nlm.nih.gov/pubmed/19901567.
- 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 Available from: http://www.ncbi.nlm.nih.gov/pubmed/20479411.
- Association for the Welfare of Child Health. Guidelines for Hospital Based Child and Adolescent Care. Australian Council on Healthcare Standards: Sydney. 1998 Available from: http://catalogue.nla.gov.au/Record/399047.
- Lorenzi M, McMillan AJ, Siegel LS, Zumbo BD, Glickman V, Spinelli JJ, et al. Educational outcomes among survivors of childhood cancer in British Columbia, Canada: report of the Childhood/Adolescent/Young Adult Cancer Survivors (CAYACS) Program. Cancer 2009 May 15;115(10):2234-45 Available from: http://www.ncbi.nlm.nih.gov/pubmed/19326396.
- Henry J, Green J, Edwards B, Meade R. Young people with health conditions; Staying engaged during the senior years of education. Melbourne: Researching Futures and RCH Education Institute;. 2009 Dec Available from: http://www.rch.org.au/emplibrary/education/Dec_2009_Staying_Engaged_Literature_Review.pdf.
- Wilkie K, Jones A. Link 'n learn: Students connecting to their schools and studies with ICT despite chronic illness. Paper presented at the Australian Association for Research in Education International Education Research Conference. 2008 Available from: http://www.aare.edu.au/08pap/wil08169.pdf.
- Eiser C, Vance YH. Implications of cancer for school attendance and behavior. Med Pediatr Oncol 2002 May;38(5):317-9 Available from: http://www.ncbi.nlm.nih.gov/pubmed/11979455.
- McLoone JK, Wakefield CE, Butow P, Fleming C, Cohn RJ. Returning to school after adolescent cancer: a qualitative examination of Australian survivors’ and their families’ perspectives. Journal of Adolescent and Young Adult Oncology 2011;1(2).
- 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 Available from: http://www1.petermac.org/ontrac/pdf/AYA-Practice-Framework.pdf.
- Strauser D, Feuerstein M, Chan F, Arango J, da Silva Cardoso E, Chiu CY. Vocational services associated with competitive employment in 18-25 year old cancer survivors. J Cancer Surviv 2010 Jun;4(2):179-86 Available from: http://www.ncbi.nlm.nih.gov/pubmed/20373043.
- Cancer Council NSW.. Cost of Cancer in NSW. Cancer Council NSW: Sydney;. 2007 Available from: http://www.cancercouncil.com.au/editorial.asp?pageid=2375.
- Dieluweit U, Debatin KM, Grabow D, Kaatsch P, Peter R, Seitz DC, et al. Social outcomes of long-term survivors of adolescent cancer. Psychooncology 2010 Dec;19(12):1277-84 Available from: http://www.ncbi.nlm.nih.gov/pubmed/20140879.