Program Research

Why is Streetlight needed?

We believe that there is a significant need for peer support in populations of adolescents and young adults who live with chronic illnesses and undergo frequent or lengthy hospitalizations. While we see this need in the lives of the many patients we get to meet in Streetlight, it is becoming increasingly clear that this need is far broader than the world we know at Shands.

Many AYA palliative care patients, living with chronic and terminal diseases such as cancer and CF, frequently experience unmanaged negative physical, psychological, and social symptoms due to their illness, treatment, and lengthy and frequent hospital stays (Quittner, Alpern, & Blackwell, 2012; Quinn, Goncalves, Sehovic, Bowman, & Reed, 2015). Among AYA palliative care patients seen in Streetlight, there are four major disease populations: cystic fibrosis, sickle cell, transplant (most commonly heart), and cancer.

Many individuals in these groups are at increased risk of infection in public spaces and as a result face environmental barriers in socializing with friends and family.

 

Cystic Fibrosis

CF Logo

Cystic Fibrosis affects over 30,000 children in the United States, and while recent medical advances in treatment of the disease have led to increases in lifespan, CF still remains one of the most challenging chronic illnesses to manage (Quittner et al., 2012). Children and young adults with cystic fibrosis are typically hospitalized for “pulmonary exacerbations”, to combat the mucus build up in their lungs and digestive tracts, improve digestion, and fight infection (Quittner et al., 2012). Pediatric CF patients undergo hospitalizations for a median length of stay of 10 days, which increases by 2.5 days on average as patients transition into adulthood (Kopp, Wang, Chisholm, Kelleher, & McCoy, 2012). Despite advances in care, many hospitalized patients still have great difficulty managing symptoms of pain, sleep disturbance, anxiety, and depression, along with the social challenges of isolation borne by frequent hospitalizations and alienation from peers (Quittner et al., 2012).

Previous research on peer relationships in patients with cystic fibrosis have indicated that relationships with other peers with cystic fibrosis were important for helping CF patients incorporate the meaning of their disease and symptoms into their personal identities (Radley, 1994). Unfortunately, recent developments in infection protocol, specifically surrounding the control of the spread of B. cepacia infections, for CF patients have caused many hospitals to implement strict in-room isolation infection protocol for CF patients to prevent transmission of this potentially fatal infection, which prevents CF patients from being able to form relationships with others with CF (Saiman et al., 2014).

Sickle Cell

Sickle Cell Team Logo by our volunteer and team captain, Sarah Nguyentran!

Sickle Cell Disease (SCD) is the most common genetic blood disorder, most commonly affecting nearly 1 out of every 375 African Americans (Edwards et al., 2005).

Adolescents and young adults who live with SCD suffer from debilitating “pain crises” where sickle shaped blood causes blood clots to block oxygen flow to organs and tissues, resulting in excruciating pain that is difficult to treat (Ware, Montalembert, Tshilolo, & Abboud, 2017).

Pain crises can be triggered by stress, changes in weather, diet, or a variety of other difficult to trace factors (Waters & Thomas, 1995). Pain crises can interrupt normal psychosocial development and create difficulties in maintaining peer relationships (Burlew, Telfair, Colangelo, & Wright, 2000). S Recent research on SCD adolescents and young adults has called for initiatives to offer SCD patients with the opportunity to meet and support other AYA patients with SCD as well as other chronic conditions, believing that such peer support networks could enhance many psychosocial factors and disease adjustment (Poku, Caress, & Kirk, 2018).

 

 

Transplant

Transplant Team Logo

During this year in the United States, it is estimated that over 7000 patients will be listed for a heart transplant, with nearly half of transplant patients waiting on the list for over a year (Stevenson, 2015). Heart transplant patients are listed as priority status, ranked dependent on how urgently they need a heart transplant (Stevenson, 2015). The highest status, 1A, is considered the most urgent, requiring “ongoing invasive hemodynamic monitoring and ongoing life support in hospitals” (Stevenson, 2015). Patients listed as high as 1A still commonly wait over 6 months before receiving their transplant (Stevenson, 2015). Young adult heart transplant patients have shown to have increased risk for depression, anxiety, and PTSD (Dew, Myaskovsky, Switzer,DiMartini, Schulberg, & Kormos, 2005).

In heart transplant patients, social support is significantly linked to post-transplant survival and higher levels of psychosocial well-being (Spaderna, Mendell, Zahn, Wang, Kahn, Smits, & Weidner, 2010).

Qualitative research on the experiences of young adult heart transplant recipients also indicated reported feelings of social isolation while in clinic, suggesting the benefit of online social networks to connect transplant patients with each other and provide social support through lengthy and uncertain admissions (Waldron, Malpus, Shearing, Sanchez, & Murray, 2017).

Cancer

Streetlight Cancer Team Logo

Cancer is the fourth leading cause of death amongst 15-39 year-olds, with an estimated 70,000 adolescents and young adults being diagnosed each year in the United States (National Cancer Institute, 2015). Cancer patients face many challenges in physical and psychological symptom management as result of their disease and of their treatment, including pain, fatigue, nausea, social functioning, and difficulty establishing relationships (Quinn et al., 2015).

Recent studies have suggested that a majority of adolescents and young adults with cancer have a desire to meet other same age peers with cancer, however a majority also report that this need is not being adequately met (Zebrack, 2009; Young, Dixon-Woods, & Zebrack-Isaacson, 2012). Isolation and alienation incurred by inpatient hospitalizations and immunocompromising chemotherapy sessions are often reported by AYA cancer patients (Newby et al., 2000).

 

Has there been any research conducted on the Streetlight program?

Yes. Research on program implementation, outcomes, and processes is a huge priority for our program. We want to make sure that our program is grounded in evidence-based methods, and that we are sure that our program is operating in the best possible way to support our patients. Check out a list of program research projects below for more information. Research is crucial to the understanding and sustainability of our program.

 

Program Evaluation and Psychosocial Outcomes of UF Health Streetlight on Current and Former Patients: A Mixed Methods-Study (2016- Ongoing)

The purpose of this study is to evaluate the social, psychological, spiritual, cultural, and phsyical wellbeing of patients who use the Streetlight Program at UF Health Shands Hospital, UF Health Shands Children’s Hospital, and/or UF Health Shands Cancer Hospital.

 

We are currently in the process of collecting data. If you are a Streetlight patient who is interested in participating, or would like to know more, please contact Emily Sullivan, Streetlight Director at e.sullivan@peds.ufl.edu .

 

 

 

Adolescent and Young Adult Palliative Care at the UFHealth Streetlight Program:

Impacts on Pre-medical and Pre-healthcare Professionals (2015)

Streetlight Research

To read the full article click the image above to access the PDF

We are excited about the research study from the University of Florida’s Center of Spirituality and Health conducted by Ana Puig Ph.D., Louis Ritz Ph.D., Monika Ardelt Ph.D., Barbara Rienzo Ph.D., Emi Lenes, Doctoral Student. The findings were presented in April at the 2013 Association of Death Education and Counseling 35th Annual Conference. The following is a description of the research

This study aimed to explore outcomes of an innovative palliative care program on 142 past and present pre-medical and pre-healthcare student volunteers.

Results of the mixed-methods study indicate that the Streetlight program significantly impacted these student volunteers’ sense of empathy, and compassion. To learn more read our publication by clicking the image above.

Thank you to all of the researchers and participants that made this publication possible.

 

 

References

Burlew, K., Telfair, J., Colangelo, L., & Wright, E.C. (2000). Factors that influence adolescent
adaptation to sickle cell disease. Journal of Pediatric Psychology, 25, 287–299.

Dew, M. A., Myaskovsky, L., Switzer, G. E., DiMARTINI, A. F., Schulberg, H. C., & Kormos,
R. L. (2005). Profiles and predictors of the course of psychological distress across four
years after heart transplantation. Psychological Medicine, 35(8), 1215-1227.

Edwards, C.L., Scales, M.T., Loughlin, C., Bennett, G.G., Harris-Peterson, S., De Castro, L.M.,
…Wood, M., (2005). A brief review of the pathophysiology, associated pain, and
psychosocial issues in sickle cell disease. International Journal of Behavioral Medicine,
12(3), 171-179.

Glanz, K., Rimer, B. K., & Viswanath, K. (Eds.). (2008). Social networks and social support. In
Glanz, K., Rimer, B. K., & Viswanath, K. (Eds.), Health Behavior and Health Education:
Theory, Research, and Practice (4th ed.) (pp. 189-207). San Francisco, CA: Jossey-Bass.

Helms, S.W., Dellon, E. P, & Prinstein, M.J. (2015). Friendship quality and health-related
outcomes among adolescents with cystic fibrosis. Journal of Pediatric Psychology, 40,
349-358.

Kopp, B. T., Wang, W., Chisolm, D. J., Kelleher, K. J., & McCoy, K. S. (2012). Inpatient
Healthcare Trends Among Adult Cystic Fibrosis Patients in the U.S. Pediatric
Pulmonology, 47(3), 245–251. http://doi.org/10.1002/ppul.21535

National Cancer Institute. (2018). Adolescents and Young Adults with Cancer. Retrieved from
https://www.cancer.gov/types/aya

Newby, L., Brown, R., & Pawletko. (2000). Social skills and psychological adjustment of child
and adolescent cancer survivors. Psychooncology, 9:113– 12.

Poku, B. A., Caress, A., & Kirk, S. (2018). Adolescents’ experiences of living with sickle cell
disease: An integrative narrative review of the literature.
https://doi.org/10.1016/j.ijnurstu.2017.12.008

Pritchard, S., Cuvelier, G., Harlos, M., & Barr, R. (2011). Palliative care in adolescents and
young adults with cancer. Cancer, 117(S10), 2323-2328. doi:10.1002/cncr.26044

Quinn, G. P., Gonçalves, V., Sehovic, I., Bowman, M. L., & Reed, D. R. (2015). Quality of life
in adolescent and young adult cancer patients: a systematic review of the literature. Patient Related Outcome Measures, 6, 19–51. http://doi.org/10.2147/PROM.S51658

Quittner A. L., Alpern A. N., Blackwell L. S. (2012). Treatment adherence in adolescents with
cystic fibrosis. In: Castellani C., Elborn S., Heijerman H. Health Care Issues and
Challenges in the Adolescent with Cystic Fibrosis. Oxford, UK: Elsevier;. pp. 77–79.

Quittner, A. L., Buu, A., Messer, M. A., Modi, A. C., & Watrous, M. (2005). Development and
validation of The Cystic Fibrosis Questionnaire in the United States: a health-related
quality-of-life measure for cystic fibrosis. Chest, 128(4), 2347-2354.

Radley, A. (1994). Making Sense of Illness: The Social Psychology of Health and Illness.
London, UK: SAGE.

Saiman, L., Siegel, J. D., LiPuma, J. J., Brown, R. F., Bryson, E. A., Chambers, M. J., …Weber,
D.J., (2014). Infection prevention and control guideline for cystic fibrosis: 2013 update.
Infection Control & Hospital Epidemiology, 35(S1), S1-S67.

Spaderna, H., Mendell, N. R., Zahn, D., Wang, Y., Kahn, J., Smits, J. M., & Weidner, G. (2010).
Social isolation and depression predict 12-month outcomes in the “waiting for a
new heart study”. The Journal of Heart and Lung Transplantation, 29(3), 247-254.

Stevenson, L.W. (2015). Crisis Awaiting Heart Transplantation: Sinking the Lifeboat. Journal of
American Medical Association Internal Medicine.;175(8):1406–1409.
doi:10.1001/jamainternmed.2015.2203

Waldron, R., Malpus, Z., Shearing, V., Sanchez, M., & Murray, C. D. (2017). Illness, normality
and identity: the experience of heart transplant as a young adult. Disability and
rehabilitation, 39(19), 1976-1982.

Ware, R. E., de Montalembert, M., Tshilolo, L., & Abboud, M. R. (2017). Sickle cell disease.
The Lancet, 17, 30193-30199. https://doi.org/10.1016/S0140-6736(17)30193-9
Waters, J., & Thomas, V. (1995). Pain from sickle-cell crisis. Nursing times, 91(16), 29-31.

World Health Organization. (2017). Creating peer support groups in mental health and related
areas: WHO QualityRights training to act, unite and empower for mental health (pilot
version). World Health Organization. http://www.who.int/iris/handle/10665/254813.

Young, B., Dixon-Woods, Zebrack, B., & Isaacson, S. (2012). Psychosocial care of adolescent
and young adult patients with cancer and survivors. Journal of Clinical
Oncology, 30(11), 1221-1226.

Zebrack, B., (2009). Information and service needs for young adult cancer survivors. Support
Care Cancer 17:349-357.

 

Written by Drew Walker, Streetlight Assistant Director, 2018

 

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