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Evaluation of Psychosocial Support Services for Adolescent and Young Adult Patients at Roswell Park Cancer Institute
Allison Polakiewicz, MPA Project
Project Advisor: Dr. Ceesay
Second Reader: Daniel Keppel
Introduction and Purpose Statement
Research Design
Data Analysis Continued
The Adolescent and Young Adult (AYA) population of cancer patients is one
that is often mixed in with the population of pediatric and adult patients when
it comes to their treatment plans. As AYAs are classified as a group between
the ages of 15-39, they face several psychosocial issues and challenges that
become even more difficult to deal with when they have a diagnosis like
cancer such as education and career attainment, relationships, self-esteem,
and fertility concerns.
This program evaluation was a nonexperimental case study n=1 method
with a mixed methods approach as an explanatory sequential design.
Suggestions made by the participants in efforts to make such discussions
more comfortable were to have guided topics for each session, dividing the
group by gender, and having people attend more frequently. No participants
found out about the Group through the hospitals website which is significant
as the content analysis portion of this evaluation found that the website was
very disorganized and not up to date. As a result of this, it is very important
that the hospital social workers continue to inform patients and survivors
about the Group, as those who may be out of treatment might not have any
reason to utilize the hospitals website and would not have a way to see
brochures or flyers if they are only placed in the hospital.
Qualitative Phase I: This phase consisted of a content analysis of the
program’s marketing materials followed by an interview with the Program
Directors.
Quantitative Phase II: Data was collected in phase II through a participant
questionnaire which was distributed over the course of three months.
The purpose of this study is to evaluate the effectiveness of the Psychosocial
Support Services for Adolescent and Young Adult (AYA) Patients at Roswell
Park Cancer Institute (RPCI). Results will be used to determine factors such
as whether or not the program is meeting its goals and objectives, what the
program is doing successfully in efforts to promote and offer their services,
areas and suggestions for improvement in efforts to increase the number of
clients, and overall effectiveness of the services on the patients who utilize
them.
Results were used to determine factors such as whether or not the
program is meeting its goals and objectives, what the program is doing
successfully in efforts to promote and offer their services, areas and
suggestions for improvement in efforts to increase the number of clients,
overall effectiveness of the services on the patients who utilize them, and
whether or not the program is meeting the standards according to best
practices in the field.
Review & Critique of Literature
Table 1: Age of Participants
AYA patients are often treated as either pediatrics or adults (Hanson, 2014).
Having healthcare professionals who are trained and educated in caring for
this specific age group can improve the communication between the hospital
staff and patient, and ultimately help in alleviating the emotional struggles the
patient may face.
Valid
It is important that the healthcare professionals are able to identify such
emotional struggles and provide recommendations of support services to the
patient. It is strongly advised by the NCCN Guidelines that AYA cancer
patients be referred to cancer centers that have expertise and experience in
treating this age group. (National Comprehensive Cancer Network, 2015)
As a preventative approach, regular psychosocial screenings and care
planning helps the healthcare providers to identify the patients who are at risk
of negative psychosocial outcomes, monitor their coping, and identify areas
of need which require additional care and support (Palmer, Patterson et al.,
2014). A number of quality of life (QoL) and unmet needs tools for adult
cancer patients and survivors are available, however, very few measures
specific to AYAs have been identified. Self-report measures are often
preferred for assessing psychosocial health, but there is a need for these
measures need to accurately reflect the unique situation of AYAs.
As RPCI is a National Cancer Institute-designated Comprehensive Cancer
Center, results and recommendations made through this research can
potentially be applied to other cancer centers which treat AYAs.
23.00
24.00
25.00
29.00
31.00
33.00
34.00
36.00
Total
Frequency
1
1
1
1
1
1
1
1
8
Percent Valid Percent
12.5
12.5
12.5
12.5
12.5
12.5
12.5
12.5
12.5
12.5
12.5
12.5
12.5
12.5
12.5
12.5
100.0
Summary, Results, Implications
Cumulative
Percent
12.5
25.0
37.5
50.0
62.5
75.0
87.5
100.0
Overall, the results of this evaluation indicated that the participants of the
Group are satisfied with the Group, that their needs are being met, and that
the Program Directors goals and objectives are being met. While there were
limitations to this study and recommendations for improvement, no
participants in this study stated that they were dissatisfied with what the
Group had to offer.
A limitation of this evaluation was that the researcher had limited access to
the Adolescent and Young Adult patients at Roswell Park Cancer Institute
due to HIPAA rules and regulations, restricting the researcher to obtaining
any participant feedback to only those who were physically able to attend
the Group over the 3-month collection period. The sample size of this
evaluation was small (n = 8); however, the total number of Group attendees
on record over the past year is 14.
100.0
Data Analysis
Recommendations/Future Research:
The results of this program evaluation were based on a content analysis,
interview with program directors, and primarily a survey. There were 8
survey participants total who ranged between the ages of 23-36 with 7
female and 1 male. One of the most significant findings of this research
was that no participants selected that they were below “somewhat
satisfied” with the Support Group, indicating that 100% of the participants
had positive answers. In addition, none of the participants indicated that
they were uncomfortable talking about topics such as relationships, selfesteem, depression, body image, work and education in the Support
Group.
Sample Selection
The technique used in order to select participants for this research was a
convenience sample. The sampling frame included all Adolescent and
Young Adult (AYA) patients at Roswell Park Cancer Institute (RPCI) who
utilized the Psychosocial Support Services monthly meetings, offered
through the Psychosocial Oncology Department. The technique of a
convenience sample was selected so that the patients who are in need of
psychosocial support could be as fairly represented as possible, and the
size of the entire AYA population as a whole is just too large to reach in its
entirety.
More than half of the respondents indicated that being able to relate to
others was what they liked the most about the program, and that factors
such as inconsistent timing between events were what they liked least. As
far as having guided topic discussions, it would be the most beneficial to
either have set topics or at least have it as an option during the Support
Group. Factors such as communication, friendships, discussing the future,
and feeling understood were a few of the things that participants said they
were getting out of the Group.
• Establish a design of best practices in order for other cancer treatment
centers to successfully design and evaluate an Adolescent and Young
Adult Support Group of their own. It is suggested to do this in partnership
with other world-renowned cancer treatment centers.
• Consistent advertising.
• Inform patients of the program post-admission to increase attendance.
• Dedicate half of the Group session to a guided topic.
• Increase the number of AYA events.
References
Table 2, Survey Q2: Overall, how satisfied are you with the Support Group?
Valid
Very satisfied
Somewhat
satisfied
Total
Frequency
4
Hanson, R. (, 2014). Healthy Kids: Bridging the gap for young adult
cancer patients. St. Louis Post-Dispatch.
Cumulative
Percent
Percent
Valid Percent
50.0
50.0
50.0
4
50.0
50.0
8
100.0
100.0
100.0
National Comprehensive Cancer Network (, 2015). "NCCN
Announces New Guidelines for Adolescent and Young Adult (AYA)
Oncology." from
http://www.nccn.org/about/news/newsinfo.aspx?NewsID=310.
Palmer, S. and D. Thomas (, 2008). A practice framework for working
with 15–25 year-old
cancer patients treated within the adult health sector