Background
Three global trends have created a need to better understand the phenomenon of selfadvocacy
within cancer survivorship: 1) an increasingly complex medical system; 2) the
movement of cancer care to a chronic care model; and 3) the emphasis on survivor selfdetermination
(Gaard & Schrager 2007). Survivors must not only navigate obstacles
associated with each phase of survivorship, but also the obstacles associated with a
fragmented health care system (e.g. communication with multiple health care providers
[HCPs]; employment, financial and insurance concerns). Survivors now have access to an
unprecedented variety and depth of information and support, but are then faced with an
additional barrier of how to use these resources in ways that promote useful information
exchange and understanding between survivors and HCPs (Lee et al. 2010, Skalla et al.
2004). Moving from an acute to a chronic care model (Hewitt et al. 2006, McCorkle et al.
2011) and a greater focus on patient participation, HCPs need to support survivors as central
actors in their care consistent with the ethical principles of self-determination and autonomy
(Taylor 2009).
A critical dilemma arises within cancer survivorship: cancer care grows more complex while
the need for survivors to advocate for themselves grows more essential and burdensome
(Pinch & Parsons 1992, Taylor 2009). Self-advocacy training has been presented as a
mechanism by which survivors can tackle this essential, but overwhelming demand for
increased pro-activity.
Self-advocacy has been broadly studied in other patient populations with strong evidence
that it is a modifiable skill capable of impacting patients’ health outcomes and quality of
life. Jonikas et al. (2011) conducted a randomized controlled trial teaching self-advocacy
skills to adults with serious mental disabilities and concluded that participants receiving the
intervention reported significantly higher levels of self-advocacy, hopefulness and
environmental quality of life and lower levels of symptom burden compared with the control
group. Test and colleagues (2005) reviewed 25 self-advocacy intervention studies and found
that each of the interventions and educational curricula improved self-advocacy skills among
individuals with disabilities. These findings support the potential application of selfadvocacy
in oncology as a target for intervention capable of improving patient outcomes.
In cancer survivorship, however, self-advocacy currently lacks both the conceptual clarity
and constituent focus needed move self-advocacy from a vague but in vogue mandate into a
concrete model capable of guiding clinical interventions among survivors. Without a clear
understanding of what self-advocacy is and how it is achieved in the context of cancer
survivorship, the healthcare professions risk placing the burden of self-advocating onto
patients without providing the corresponding guidance on how to do so. Such an obligation,
Background
Three global trends have created a need to better understand the phenomenon of selfadvocacy
within cancer survivorship: 1) an increasingly complex medical system; 2) the
movement of cancer care to a chronic care model; and 3) the emphasis on survivor selfdetermination
(Gaard & Schrager 2007). Survivors must not only navigate obstacles
associated with each phase of survivorship, but also the obstacles associated with a
fragmented health care system (e.g. communication with multiple health care providers
[HCPs]; employment, financial and insurance concerns). Survivors now have access to an
unprecedented variety and depth of information and support, but are then faced with an
additional barrier of how to use these resources in ways that promote useful information
exchange and understanding between survivors and HCPs (Lee et al. 2010, Skalla et al.
2004). Moving from an acute to a chronic care model (Hewitt et al. 2006, McCorkle et al.
2011) and a greater focus on patient participation, HCPs need to support survivors as central
actors in their care consistent with the ethical principles of self-determination and autonomy
(Taylor 2009).
A critical dilemma arises within cancer survivorship: cancer care grows more complex while
the need for survivors to advocate for themselves grows more essential and burdensome
(Pinch & Parsons 1992, Taylor 2009). Self-advocacy training has been presented as a
mechanism by which survivors can tackle this essential, but overwhelming demand for
increased pro-activity.
Self-advocacy has been broadly studied in other patient populations with strong evidence
that it is a modifiable skill capable of impacting patients’ health outcomes and quality of
life. Jonikas et al. (2011) conducted a randomized controlled trial teaching self-advocacy
skills to adults with serious mental disabilities and concluded that participants receiving the
intervention reported significantly higher levels of self-advocacy, hopefulness and
environmental quality of life and lower levels of symptom burden compared with the control
group. Test and colleagues (2005) reviewed 25 self-advocacy intervention studies and found
that each of the interventions and educational curricula improved self-advocacy skills among
individuals with disabilities. These findings support the potential application of selfadvocacy
in oncology as a target for intervention capable of improving patient outcomes.
In cancer survivorship, however, self-advocacy currently lacks both the conceptual clarity
and constituent focus needed move self-advocacy from a vague but in vogue mandate into a
concrete model capable of guiding clinical interventions among survivors. Without a clear
understanding of what self-advocacy is and how it is achieved in the context of cancer
survivorship, the healthcare professions risk placing the burden of self-advocating onto
patients without providing the corresponding guidance on how to do so. Such an obligation,
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