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July 16, 2007
Conceptualizing the model for the "Adolescent Transition Clinic and Peer Support Program"
I left off in the last entry giving the background of my project to create a specialized support and clinical care model for HIV-infected adolescents. The idea for this project—way back when— came from the observations and testimonies of a number of people involved in the care of IDI adolescent patients, all of whom saw glaring needs that were not being met by the current system. Based on this information, we developed the problem statement (hypothesis) and suggested a model that could potentially meet the needs of the HIV-positive adolescents at the IDI that were identified by a number of care providers.
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The conceptualized model:
The proposed Adolescent Transition Clinic and Peer Support Program at the IDI would provide comprehensive care of adolescents (approximately ages 16-24) transitioning from pediatric to adult care. The integration of the characteristic needs of HIV-infected adolescents into the IDI clinical setting and into their support systems is essential for the facilitation of effective pediatric to adult care-transition. The ‘Adolescent Transition Clinic and Peer Support Program’ would consist of a separate clinical time period exclusively for adolescents at the IDI going hand-in-hand with peer support groups. As previously described, the IDI clinic is unique especially because of its “creativity initiative”, which helps create a support community among patients and fosters de-stigmatization. To remind: while waiting for care at the clinic, patients in the clinic play board games, draw, and paint. Groups of patients at different times engage in ‘music-making’, which brings the clinic to life. One possibility is for some of the adult patients who are involved in music-making and teaching entrepreneurship to be active during the Transition Clinic time period, with the hope that adolescents would join the music-making and take part in other activities like entrepreneurship. This initiative would be consistent with the goal of creating a youth-friendly environment that the adolescent patients will be drawn towards.
This transitional model would establish a youth-friendly clinical setting. More time will be allotted for each patient (the separate clinic time period would allow this), with doctors and counselors prepared to refer patients to appropriate resources as necessary and subsequently follow up on that. Patients would be encouraged to meet regularly with a counselor. The development of a strong, trusting ‘healthcare provider’-patient relationship is critical. Patients will see the same doctor, nurse (some patients come just for ‘nurse visits’ rather than see a clinician), and counselor each visit, which will aid in this process. The issue of the young adults consistently seeing the same care providers is especially important for this group of IDI Friends (again, all patients are referred to as "Friends". Doctors and counselors will need to cultivate the relationship, such that over time the adolescent/young adult patients will gain trust and be more willing to utilize them as valuable resources and guides. As adolescents can be less secure than adults, this will require healthcare providers to proactively work to get to know their patients and bring to light any problems or challenges (extending beyond medical care) that they are dealing with. At current, the IDI follows up with patients via phone only if they do not come for their monthly visit. Follow-up with adolescents in the ‘Transition Clinic’, however, would occur regularly to ensure continued care, especially given that adolescents are more likely to drop out of care than adults.
The idea of changing the clinical mentality and altering accustomed healthcare provider-patient relationships will require focus group discussion among primary care-providers to get their feedback on and reaction to the proposed model, and integrate their input. Subsequently, training workshops would be conducted to help equip the healthcare providers to effectively care for adolescents and address their unique needs.
The other major component of comprehensive care is the establishment of peer support groups for all the adolescents/young adults in care at the IDI and PIDC, meeting once every month. This will bring HIV-infected adolescents together with their peers to form a supportive community working towards awareness, understanding, and prevention. The peer support groups will help bridge the HIV knowledge gap, as revealed in the aforementioned PIDC sexual reduction risk study. They will provide resources and concrete strategies for safe sexual activity and prevention, and foster the development of life skills. A fundamental component of this will be the initiative of ‘adolescent involvement’: facilitation of peer support activities, creation of communication materials and dissemination of information etc. This will facilitate participatory awareness and empower these emerging young adults to take charge of their own futures and health care needs.
Specifically, in the peer support groups, the goal is to a) develop communication and information materials (presentations, brochures, posters) with the adolescents, b) conduct innovative skills learning (drama, poetry, writing etc), c) facilitate the sharing of information, challenges, and achievements in a youth-friendly environment, and d) encourage adolescents to get involved in community extracurriculars (sports, debates etc), apprenticeships, and outreach.
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The model described is a conceptualization, an initial idea which has given direction to the overall project (a concept of what we might see in the long run) and more importantly served as the framework for the ‘needs assessment’ research study we are currently in the process of conducting. The study “Assessing the transitional healthcare needs of HIV-positive young adults in resource limited settings” involves both a quantitative component (lengthy questionnaire) and a qualitative component (focus-group discussions). The problem statement was critical in informing what areas/issues (e.g. whether there is the stigma of being in a clinic with young adults, or a lack of effective peer support networks etc) we needed to explore in the study and how we would go about (methods) doing so The suggested model informed what specific interventions we would target for evaluation of desire/need (e.g. the desire/neede to arrange for young-adult patients to meet with a counselor every visit, the desire/need to provide information about HIV and other STIs etc).
However, the problem statement must be validated or refuted by the results and conclusions drawn from the research study, currently in progress. From there, we will be able to develop an official model that is based not on the problem statement, but on the needs and desire of the young adult patients as explicitly expressed and demonstrated during the research study.
Posted by Vijay Narayan at July 16, 2007 02:19 PM
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