Two leading cancer advocacy organisations engaged HTANALYSTS to understand the true impact of losing a parent to cancer, with a focus on parents of children under the age of 25.
A parental cancer diagnosis is always a life-changing event for families, but children are commonly the most heavily impacted, with evidence demonstrating that young people dealing with a parent’s cancer are three to six times more likely to experience high or very high levels of psychological distress than their peers. Generally, families from disadvantaged populations will not only be at greater risk of a parent dying from cancer, but the subsequent impacts on children following their death will also be more severe. In Australia, children living in disadvantaged areas are already at increased risk of child abuse, neglect, psychological distress, and poor health outcomes. These risks are amplified when a child loses a parent to cancer, as maintaining a strong parental bond helps promote healthy childhood development, particularly for children of low socio-economic status.
HTAnalysts proposed to conduct an impact assessment using the SROI methodology. The SROI methodology allows the advocacy organisations to communicate the true value of investing in cancer research and the advancement of cancer technologies, therapies and services, supporting advocacy efforts to secure better funding from the Federal and State Governments.
Only by living an experience one is truly able to describe the impact of cancer, and ultimately tell a story of how change is created. This is one of the core tenants of SROI analyses. To conduct this analysis numerous patients, their partners, children, and physicians were involved. Participants were recruited by the two organisations, and interviews were conducted by HTANALYSTS to understand how having a cancer diagnosis impacts the person receiving it, and everyone around them. The information collected demonstrates that cancer has profound physical, psychological, social, and economic impacts on people’s lives, which persist following both the death of a loved one and even when a loved one is cured.
In the context of an SROI, the theory of change aims to map the sequence of events resulting in an impact for a stakeholder group. The draft theory of change was developed by HTANALYSTS based on secondary research and subsequently refined to incorporate findings from the stakeholder consultations. The theory of change is informed and guided by the stakeholder groups and aims to identify the relationship between inputs, outputs, and outcomes of an intervention to capture the real-world experience of those affected.
The report aimed to predict the societal impacts of prolonging and improving the lives of cancer patients by modelling an ideal world where all parents with non-curative cancer (< 5-year prognosis) have funded access to effective technology, therapy or service which prolongs their survival beyond 5 years. Outcomes of survivorship were derived from stakeholder interviews and encompassed the experiences of those with an extended prognosis and quality of life e.g. “continue to care for children” for parents who survived a non-curative cancer diagnosis, along with avoided bereavement outcomes e.g. “avoided mental and emotional burden” for partners.
The SROI tells the story of how change has been or is being created, by measuring social, environmental, and economic outcomes (triple bottom line), and uses monetary values to represent them. The analysis was designed as a tool to shift the conversation from the cost of therapy to real-life value and impact. The results offer greater insight into the real value of cancer technologies, therapies and services, and the difference they can really make, not only for patients but also for their partners and children.
This analysis showed how every dollar invested in prolonging the survival and quality of life for parents with a non-curative cancer diagnosis represents an investment with a significant return for the entire system, rather than a cost and a burden on government budgets. In particular, the analysis showed that value is created through traditional avenues such as returning people to work and reducing reliance on palliative care, as well as through less traditionally tangible measures such as being present for life milestones and feeling hope for the future. Considered together these benefits led to tens of millions of dollars of value, which far outweighed the cost of investing in technologies, therapies, and services.