Why does this study matter?
Social support is a core need throughout the lifespan, and previous research has shown that for people with cancer, social support can make a big difference in health-related quality of life (HRQoL). But the social needs of teens are unique, and for adolescents and young adults (AYAs) with cancer, needs are constantly in flux. Surprisingly, the AYA age range spans from 15 all the way up to 39 years old, and AYAs with cancer often find they must seek treatment in pediatric facilities designed for much younger patients. (Just imagine being anywhere between 15 and 39 and having to seek treatment in an environment designed with primary color schemes and cartoon characters!) Peditto and colleagues help us understand how the cancer care environment does – and does not - support AYA patients.
How was the study done?
The research team developed a questionnaire asking AYA cancer survivors to assess common features in cancer treatment environments (including inpatient, outpatient, and emergency settings). The questionnaire included items adapted from validated tools to measure HRQoL, and 22 environmental features selected based on information collected from interviews, site visits, and a survey of healthcare design professionals. A total of 104 AYAs rated the importance of the features, but of these participants, only 56 who were currently receiving/recently completed treatment (within the last two years) were asked to rate both importance and effectiveness. The researchers used paired t-tests to compare importance and effectiveness using data from the AYA group with recent cancer treatment experience. Next, the researchers looked at the difference between the importance and effectiveness ratings across all 22 features, and calculated the average difference, which they dubbed as the “adequacy” score of the environment for each participant. Finally, they used regression analysis to evaluate the relationships among adequacy, social support, and HRQoL in the data.
So what do we learn from the study?
The results showed significant differences between what participants rated as important in cancer facilities– and what was rated as effective. Specifically, “outdoor space,” “patient-only lounge,” “visitor beds in patient rooms,” “meditative space,” “temperature control,” and “personalizable rooms” were found to be the most inadequate.
Adequacy of the built environment did not appear to impact perceived social support or have a direct effect on HRQoL. However – in line with findings from previous research – perceived social support did have an effect on HRQoL. And while the built environment as a whole didn’t seem to have an effect on social support or HRQoL, certain features (e.g., TV, internet, moveable seating, private bedrooms and bathrooms) were positively correlated with perceived social support. So, it looks as if certain features in the cancer care environment may facilitate social support, and having social support can improve HRQoL.
The majority of participants reported that they would have liked more interaction with other patients, so it may seem contradictory that environmental qualities that support “interactions with other patients” and having a “patient-only lounge” received low importance ratings. The researchers suspect patients do want the option for interaction, but they also want the option for privacy, or “privacy regulation”.
Can we say the results are definitive?
This was a very rigorous and focused study, but there are still a lot of unknowns. The findings suggest that choice and control may also play a role in how much social support AYAs feel, and their HRQoL, but the study did not include specific metrics for these variables. And the survey did not include questions about disease severity, which likely impacts HRQoL.
The participants were recruited from AYA support programs, and AYAs who choose to be in cancer support groups may have different perceptions around what is important in the environment and likely different levels of social support than AYAs who do not.
Another limitation was a lack of distinction between inpatient and outpatient environments. The authors recognize that the need for social support is likely very different between these two settings, and future studies should make that distinction.
What’s the takeaway?
This appears to be the first study to look at the effect of the cancer treatment built environment on AYAs with cancer. The study shows that AYA participants felt that the cancer facilities they were treated in did not adequately meet their needs, particularly in the considerations of outdoor space, patient rooms, lounges, and visitor accommodations. The findings support the researchers’ hypothesis that perceived social support is a mediator between the cancer treatment environment and HRQoL. In other words, designing in features that improve a sense of social support for AYAs with cancer has the potential to improve health related quality of life for these young people.
The authors provide recommendations for facilitating desired social support in the AYA oncology environment, especially in the in-between-spaces that blur public and private use. They describe the importance of having choice and control as it relates to privacy, and having spaces that allow for informal social connection when AYA patients want it, with the option of private spaces (i.e. private patient rooms) when they don’t.
Peditto, K., Shepley, M., Sachs, N., Mendle, J., & Burrow, A. (2020). Inadequacy and impact of facility design for adolescents and young adults with cancer. Journal of Environmental Psychology, 69, in press. https://doi.org/10.1016/j.jenvp.2020.101418
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