Health belief pattern
Adaptive beliefs group
AYAs demonstrate high scores on all HCBI factors
Support that reinforces positive beliefs and reinforces adherence to recommendations and achieving personal goals
Low autonomy group
AYAs have primarily positive beliefs, but have low scores on independence/autonomy scale
Support should include a consideration of reasons for lower autonomy; work should include survivors and parents, with a focus on pursuing developmentally appropriate health-care management and personal goals
AYAs have low scores across all HCBI domains
Support may need to focus more intensively on negative beliefs and on setting goals to enhance disease management and quality of life
Attending to developmental issues associated with survivorship can also facilitate good transition planning. Childhood cancer survivors may not have had full access to information during their treatments and often learn of their long-term medical risks for the first time during a follow-up visit . Further, as childhood cancer survivors reach new developmental stages and new levels of cognitive understanding, it may be necessary to reteach health-related information. As survivors reach adulthood and take on the direct responsibility of managing their own health care, this complex task that was formerly handled by parents and can be overwhelming and frightening – and might require more support and direction for the survivor. Being aware of each survivor’s developmental trajectory and tailoring psychoeducation and support to that level can facilitate survivors’ engagement in care.
In order to accommodate these concerns, it is critical to develop ways of responsibly educating survivors on their medical risk while minimizing the anxiety that such education may provoke . Providers should be attuned to the potential psychological impact of the information they are delivering and should be sensitive to the fact that many survivors may be hearing the information directly for the first time or may feel independently responsible for managing this health-related issue for the first time. Being careful to ask about and listen to survivors’ perceptions and health beliefs, and then carefully correcting misperceptions, can minimize anxiety-provoking misunderstandings that can impede participation in future medical care. Providing anticipatory guidance about psychosocial symptoms that are normative for many survivors (e.g., anxiety and worry about medical late effects, distress when reminded of cancer and late effects) can also minimize worry. Helping survivors recognize aspects of the situation that they control (e.g., participating in regular preventive care) and identifying their areas of strength in managing their own health may also decrease the chances that posttraumatic reactions could undermine their involvement in future medical care.
Finally, while it is recommended that all patients receive this standard level of psychosocial care integrated into each follow-up visit, some survivors will demonstrate specific, and possibly intensive, psychological needs. It is therefore important to maintain a referral list of care providers who can deliver more intensive care, including psychotherapists and neuropsychologists.
20.7 Research and Practice: Developing Interventions Targeting Psychological Late Effects
A critical piece of providing comprehensive follow-up care is interdisciplinary research to develop and demonstrate the effectiveness of psychosocial interventions consistent with or integrated into follow-up care. There are relatively few evidence-based interventions for survivors, although the largest set of interventions available are helpful in targeting health behaviors (e.g., [14, 58, 59, 72]). As an example of an intervention targeting PTSS across members of the family, the Surviving Cancer Competently Intervention Program (SCCIP; ) integrates cognitive behavioral approaches to distressing symptoms of posttraumatic stress within a family systems intervention model. SCCIP has been shown to reduce PTSS in survivors and in their fathers . Other more general pilot programs suggest the feasibility of interventions that aim to educate survivors during a follow-up visit on their medical vulnerability and on the need for continued participation in follow-up care (e.g., ) and that aim to provide sustained psychosocial via telephone contact after a follow-up visit . The longer-term effectiveness of such programs is not yet known.
Overall, survivors of childhood cancer report good psychological adjustment and have low rates of psychopathology. However, a significant minority may experience psychosocial challenges that threaten their ongoing development, including PTSD, impaired physical quality of life, and maladaptive beliefs about their health. Particularly for survivors of a central nervous system malignancy, these challenges may be associated with educational and employment challenges. Social and relationship differences, particularly in brain tumor survivors, are also vulnerabilities in many survivors. It is essential that comprehensive follow-up care includes sensitive assessment of these issues and referral to appropriate community resources, as well as health-care interventions that account for and are informed by any specific psychosocial concerns that a survivor demonstrates. Involvement of psychosocial professionals, including social workers, psychologists, and psychiatrists, on comprehensive follow-up care teams should therefore be seen as essential.
Finally, it is important to emphasize that the psychological experience after childhood cancer is not unidimensional and negative. Emerging theoretical models and early research explorations indicate many survivors and their parents experience positive psychological outcomes that they ascribe to the childhood cancer experience (e.g., [73, 108]). Many psychologists working with survivors have qualitative or anecdotal reports that parents and survivors grow to appreciate at least some parts of the cancer experience. Parents and survivors frequently explain that childhood cancer taught them to put things in perspective in ways that other people do not do and that they are not as materialistic and are more empathic. Survivors frequently feel that they are more mature than others their age and that they value their family relationships more. Family members and survivors may feel grateful to the medical professionals who worked with them and proud of their ability to manage – and survive – a challenge like childhood cancer . Drawing on these strengths and the positive contributions of the cancer experience can help survivors and their family members weather any challenges they might face. Understanding the complicated interplay of these strengths with the more challenging psychological late effects experienced by some survivors can help providers work more effectively to promote positive adaptation and growth in the decades after childhood cancer survivorship.
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