Supporting AYA relationships

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Overview

Family, peers, partners and significant others will all play a part in supporting a young patient through their cancer journey. In particular, family support may be essential to the successful coping of the patient, hence providing support and guidance to family members may be the most appropriate way to support the patient. All of these relationships should be addressed as part of a psychosocial assessment of the patient and incorporated into the management approach of the treating team.[1]

The patient and their family members should be encouraged and aided to maintain their existing friendship and support networks, and also given information about peer support programs and groups so they can make connections with other AYAs, siblings or parents who have experience of cancer.


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Address the support and information needs of the family

  • Provide family members and partners with information and psychosocial support so that they can continue to support the patient and minimise risks to their own wellbeing.


tick icon Be mindful of the needs of siblings

  • Give siblings direct, age-appropriate and honest information and provide opportunities for them to ask questions.
  • Provide siblings with opportunities for peer support and recreation.
  • Provide support and psycho-education to parents to increase their awareness of possible issues for the patient’s siblings. Inform parents of the importance of recognising when siblings need a break or ‘time out’ from the cancer experience.


tick icon Encourage the patient to maintain healthy relationships with peers

  • Provide information, and a suitable physical space, to help patients manage and maintain their peer relationships.
  • Encourage – and ask the patient’s family to support – continuing peer interactions while the AYA is an in-patient.


tick icon Support the intimate relationships of AYA patients by addressing the needs of partners

  • Create opportunities for the young person to discuss any issues relating to their psychosexual development and intimacy needs.
  • Provide or source support for the young person and their partner to help them to navigate their relationship.

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Address the support and information needs of family members

The majority of AYA patients will be reliant on family to some extent during their treatment. Of those who had previously left the family home, some will return home for a period, if not the entirety, of their treatment. The cancer diagnosis and its treatment will inevitably have an impact on the whole family.[2]

How the family copes with the cancer diagnosis and treatment will have a direct impact on how the patient copes.[3] As a result, the practical and support needs of the patient are very much intertwined with the needs of the family and each family should be viewed as part of an interactive system.[4][5] Providing family-focused care requires an awareness of community supports and services and referral as required.

Keeping family members (including siblings) adequately informed can assist family members to feel empowered when dealing with a life threatening illness.[6] It is important that the correct amount of information be given to family members at the right time, particularly when the young person has just been diagnosed with cancer, and at each stage throughout the cancer experience including into survivorship. When providing information to siblings, tailor the content and format to their cognitive and developmental needs.[6]

  • The successful management of an AYA patient cannot occur without understanding the impact of their family and the additional stressors inherent within their family environment. For example, the financial impact of reduced work hours and/or paying for childcare, accommodation and transport can cause significant worry for family members as they focus on supporting the patient. In adult-focused services that largely work with the patient in isolation, such pressures are not always addressed.[7] These areas should be canvassed with relevant family members at diagnosis, at regular intervals throughout treatment, and at times of significant change in the treatment of the patient.
  • Understanding who makes up the patient’s family, what their family relationships are like, who is available to support them and any family stressors will help the treating team to develop a supportive care plan. Ask them to draw a family tree to understand family composition and dynamics and prompt discussions about these issues.
  • Look for factors of resiliency and risk within the family. Factors that enhance resiliency are having close family and extended family ties, cohesion and mutual respect of family members, parents’ encouragement and respect of AYA children’s developmental challenges and clear communication. Risk factors include pre-existing mental health issues, sociodemographic difficulties and unemployment (either prior to or resulting from cancer diagnosis), issues of abuse, conflict and separation, enmeshed relations, and drug and alcohol issues.
  • Family members and partners should be given information about accessing psychosocial supports so that they can continue to support the patient.
  • If the patient identifies stress associated with how their family members are coping and responding, additional support and information should be provided to all relevant family members. Where possible, formal or informal assessments can be done with family members to assess their needs directly and make appropriate referrals.
  • During care planning, all AYA patients and their families and/or partners should be given or referred to information about their rights to Government benefits and assistance from not-for-profit organisations and community agencies.
  • Provide family members and partners with honest, accurate and easily understood information about the impact of the cancer, including treatment and side effects, coping mechanisms, support services available, self care/family care activities and the changes to family routines, relationships and daily living.[6][8]

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Be mindful of the needs of siblings

Siblings of the young patient may feel left out, isolated and that their needs are ignored as parental attention, understandably, is focused so strongly on the needs of their ill brother or sister.[9] The focus of the health team and significant others in the sibling’s life, also becomes focused on the immediate needs of the patient.[9]

Siblings may experience a range of complex emotions such as guilt, anger, resentment, fear, grief, jealousy and distress, as well as changes in family dynamics. Generally siblings report few opportunities to talk about how they are feeling and that often their parents do not talk to them about the illness.[10][8] They face the challenge of adjusting to a major disruption in the family’s daily life and routine, at the same time as processing the emotional stress of a cancer diagnosis in their family.[8]

Research has established the benefits to siblings of peer support from both friends and other siblings of cancer patients (through peer support programs), and their need for better information and sensitively delivered communication about their sibling’s cancer, treatment and prognosis.[8]

  • Consider the needs of siblings at regular intervals throughout the cancer journey and make referrals to appropriate support organisations (such as CanTeen, RedKite, Camp Quality) when required.[8]
  • General practitioners, school psychologists (where available), student services in tertiary settings, and welfare coordinators can provide and refer siblings to age-appropriate support.
  • Particular attention should be paid to age, birth order and gender of siblings. Siblings younger than the patient may have a greater need for additional support from community agencies, school counselors, or private psychologists due to risks associated with diminished parenting time and attention throughout the cancer journey.[5]
  • Offer information and support to parents to increase their awareness of possible issues or concerns for siblings – such as worry their sibling might die, fear they will also get sick or feelings of invisibility. Recent Australian research [8][11] found that siblings need information and support in the following domains:
    • Information about my sibling’s cancer (e.g. to be spoken to by health professionals in a way that I can understand)
    • Time out and recreation (e.g. to be able to have fun)
    • Support from my friends and other young people (e.g. my friends to understand what I am going through)
    • Dealing with feelings (e.g. help dealing with feelings of anxiety and feeling scared about my sibling’s cancer)
    • Understanding from my family and my relationship with my sibling with cancer (e.g. for my family to acknowledge that this is happening to me too)
    • Practical assistance (e.g. assistance with managing daily tasks)
  • Encourage parents to spend one-on-one time with siblings to meet their need for attention and acknowledgment, provide opportunities for fun, and include siblings as much as possible in discussions about what is happening to their ill brother or sister.[8]

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Encourage the patient to maintain healthy relationships with peers

Peer relationships are central to the world of the developing young person. Cancer treatment and separation from peers can have long-term negative implications for healthy peer relationships if not managed appropriately. The treating team has an obligation to assist the AYA patient to manage these relationships.[12]

  • Provide the young person with information to assist them in managing and maintaining their peer relationships. This may include information on how to talk to friends about their cancer diagnosis and treatment, and tips on maintaining friendships during treatment.
  • Encourage peer interactions when the AYA is an in-patient. For example, make sure the ward is a welcoming place to visit, provide a private place for young people to get together, and offer some education to friends to alleviate their concerns.
  • Facilitate the patient’s attendance at ‘rite of passage’ events such as 18th or 21st birthday parties, school or university graduations, school recitals and sporting grand finals.
  • Encourage treating teams to be aware of important social events in the life of the young person and promote flexibility where possible around treatment dates, consultation times, and procedures.[7]
  • Families should be encouraged to be respectful of the essential role that friends play in healthy AYA development and support the continued involvement of friends in the daily life of the young patient.
  • There are a number of unique benefits associated with peer support that may not be achieved through other means. These include the sharing of practical knowledge, the provision of emotional assistance and support, and the realisation that others are going through a similar experience. Treating teams should provide the young person with information regarding available peer support.[12]

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Support the intimate relationships of AYA patients by addressing the needs of their partners

Intimate relationships during this period of life may be newer and less developed with less resilient foundations for the sort of challenges presented by a cancer diagnosis. However they should not be regarded as any less significant or important to the young person.

The impact of diagnosis and treatment on the young person’s psychosexual development can be significant. Issues such as body image, social and peer isolation, tenuous and interrupted relationships, and treatment effects such as fatigue, mucositis, surgery, and alopecia can all impact upon intimate relationships.[13] Some young people may end relationships to protect their partner, while others may cling tightly to a new partner who may or may not have the resources to cope with the challenges of the situation.

  • Provide or source support for the young person and their partner to help them navigate their communication and relationship.
  • Issues around intimate and sexual relationships can be difficult matters to address. Health professionals should create opportunities for discussion. The PLISSIT model is recommended as a prompt for discussion.
  • Avoid assumptions about sexual activity, behaviours or attractions.[13]
  • Written information should be given, if no health professional is comfortable or available to address the young person’s need for information about sexuality and intimacy.

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References

  1. CanTeen Australia. Adolescent and Young Adult Oncology Psychosocial Care Manual. Australia: CanTeen; 2011.
  2. CanTeen Australia. Supporting adolescent and young adult siblings of cancer patients: the family context. Research to Practice Paper. Sydney: CanTeen Australia. Issue 1; 2011.
  3. Zebrack B, Chesler M, Penn A. Psychosocial support. In: Bleyer A, Barr R, Albritton K, Phillips M, Siegel S, editors, Cancer in adolescents and young adults. Heidelburg: Springer Verlag Publishers; 2007.
  4. Ozono S, Saeki T, Mantani T, Ogata A, Okamura H, Nakagawa S, et al. Psychological distress related to patterns of family functioning among Japanese childhood cancer survivors and their parents. Psychooncology 2010 May;19(5):545-52 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/19623675.
  5. 5.0 5.1 Buchbinder D, Casillas J, Krull K R, Goodman P, Leisenring W, Recklitis C , et al. Psychological outcomes of siblings of cancer survivors: a report from the Childhood Cancer Survivor Study. Psycho-Oncology 2011;20 (n/a) Abstract available at http://onlinelibrary.wiley.com/doi/10.1002/pon.1848/abstract.
  6. 6.0 6.1 6.2 Price, J. Information needs of the child with cancer and their family. Cancer Nursing Practice 2003;2:35-38.
  7. 7.0 7.1 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.
  8. 8.0 8.1 8.2 8.3 8.4 8.5 8.6 Patterson P, Millar B, Visser A. The development of an instrument to assess the unmet needs of young people who have a sibling with cancer: piloting the Sibling Cancer Needs Instrument (SCNI). J Pediatr Oncol Nurs 2011;28(1):16-26 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/20739587.
  9. 9.0 9.1 Spinetta JJ, Jankovic M, Eden T, Green D, Martins AG, Wandzura C, et al. Guidelines for assistance to siblings of children with cancer: report of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology. Med Pediatr Oncol 1999 Oct;33(4):395-8 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/10491549.
  10. Wang RH, Martinson IM. Behavioral responses of healthy Chinese siblings to the stress of childhood cancer in the family: a longitudinal study. J Pediatr Nurs 1996 Dec;11(6):383-91 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/8991339.
  11. McDonald F, Patterson P, Butow P, White K. Adolescent and Young Adult Siblings of Cancer Patients: Understanding Unmet Psychosocial Needs and Psychological Distress. Paper presented at the 43rd Congress of the International Society of Paediatric Oncology. 2011 Sep;Auckland, New Zealand.
  12. 12.0 12.1 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 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/19901567.
  13. 13.0 13.1 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 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/20498401.

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