ARTICULO; CARACTERIZACION FISICOQUIMICA Y

CONCEPTUAL FRAMEWORK Chapter Overview

In this chapter, I describe the conceptual framework guiding this study. It is comprised of three interacting elements: (1) my own experiential knowledge, (2) a specific worldview that is the foundation for my conception of knowledge creation, “truth,” and the critical role of relationships in ethical and credible research, and (3) several existing theories that buttress my approach to working with and for youth and young adults with psychiatric disabilities. Before exploring these concepts further, I take a moment to interrogate the concept(s) behind a “conceptual framework.”

Operational Definition for Conceptual Framework

There are many definitions for a conceptual framework(Maxwell, 2005; Miles &

Huberman, 1994; Ravitch & Riggan, 2012). For the purposes of this dissertation, I rely

primarily on Maxwell (2005) and Ravitch and Riggan’s (2012) operational definitions for the term, below.

A conceptual framework is a grounded argument about why the topic of a study matters to its various and often intersecting fields, why the methodological approach used to explore the topic is valid, and the ways in which the research design is appropriate and the methods are rigorous. (Ravitch & Riggan, 2012, pp 39-44).

The function of this theory is to inform the rest of your design – to help you assess and refine your goals, develop realistic and relevant research questions, select appropriate methods, and identify potential validity threats to your

conclusions. It also helps you justify your research. (Maxwell, 2005, pp. 33-34).

I would add to these complementary working definitions that my own conceptual framework also includes what I find interesting in the world (read: worthy of formal

study), what questions I ask about these phenomena of interest, and how I go about trying to answer them. The conceptual framework, then, informs every decision related to my study design and is, by definition, constructed, highly subjective, and unique to this particular study.

I conceive of myself as a “well-informed” traveller (Witzel & Reiter, 2012), sharing certain knowledge and lived experiences with the participants in this study, while differing from them in many ways, as well. My conceptual framework acts as a sort of travel guide; its elements are signposts to remind me of the way as I go on this journey. Some signs remind me of the commonalities I share with study participants, while others highlight what sets us apart; some signs reflect my pragmatic approach to research, while others point to my constructivist and interpretivist bent; and some signs remind me of useful existing theories that form well-trod paths and make my journey more feasible, organized, and connected to other travellers.

On the following page is a figure representing the conceptual framework for this dissertation (Figure 2.1). It is comprised of three over-lapping and interacting

components: my own experiential knowledge, my worldview (or how I conceive of and understand knowledge creation and “truth”), and various relevant existing theories and sensitizing concepts.

Experiential Knowledge

My personal history is – as is everyone’s - undeniably biased; it also, however, unique and valuable. I believe that my experiences inform what I find important and ripe for research, as well as the specific questions that I ask and the choices and methods I employ to go about exploring them. At the risk of sounding egocentric, I believe that this

particular study, with these particular research questions, and some particularly

wonderful study participants, could not have been conducted by someone else. This is not good or bad – it simply is, in the same way that other qualitative and mixed methods

studies could not have been conducted by anyone but their authors. That said, I endeavor

to be transparent about the assumptions I have brought to this work and how I understand the world and my small place within it. Without such transparency, how can readers assess the trustworthiness of my findings?

• Personal Recovery Journey

• Documentary Filmmaking Background

EXPERIENTIAL KNOWLEDGE WORLDVIEW

EXISTING THEORY & SENSITIZING CONCEPTS

• Pragmatic paradigm (hybrid Constructivist – Transformative – Postpositivist) (Creswell, 2013)

• Foreground and honor participant voice

• Belief in Power of Story-telling to Effect Change

• Participants as experts

• Identity in/and Emerging Adulthood • (Arnett, 2004)

• College student “persistence” and “institutional integration”(Tinto, 1975, 1993)

• Disclosure of “Invisible” Disabilities (Chaudoir & Fisher, 2010; Corrigan et al., 2015; Venville & Street, 2014)

• Recovery & Mental Illness (Anthony, 1993; Davidson, 2003, 2005; Deegan, 1988, 1996, 2007

• Disability Studies & Disability Studies in Education (Davis, 1997; Oliver, 1990; Valle & Connor, 2011)

• Commitment to “Relational Research”

*Note: “PYD” above is abbreviation for “Positive Youth Development” • Developmental Contextualism

& PYD (Lerner, 2002)

Figure 2.1 Conceptual Framework for Dissertation

Personal recovery journey. Early in my freshman year of high school, I experienced growing depression and an increasing discomfort with my body. By the Spring of that year, my sadness and unease had become anorexia nervosa and major depressive disorder. I withdrew socially from friends, felt increasing hopelessness, exercised compulsively and excessively, and subsisted on a severely restricted diet. Within a matter of eight weeks, I was very thin and pale, and achingly depressed. After a few months more, I was gaunt, hardly eating at all, and contemplating suicide.

Fortunately for me, my parents forced me into treatment early and against my will; if they hadn’t acted so quickly I doubt that I would be alive today.

After a year of thrice-weekly individual sessions with a pediatric psychiatrist who specialized in eating disorders, coupled with twice-weekly group-therapy with other teenage girls, and regular meetings with a registered dietician, I began the road to eating disorder recovery, and fortunately have never had a relapse. One thing that all of the treatment did not prepare me for, however, was what to say to my friends and teachers at school about what was happening me – and how to maintain a positive academic and social existence during and after my treatment.

This was in 1987, and the staff at my private high school had no connections with

community mental health agencies (or any community agencies, for that matter), and

certainly no direct communication with my doctors. My mother became my personal caseworker out of desperation and necessity, and she did her best to keep the medical team, the school counselor, and my dean abreast of my progress. She fumbled her way through, with no built-in supports to help her navigate the maze, yet she somehow

way was what I should do and say to the people at school – and what they could do to support me through this process.

Fortunately, I did not require a lengthy hospitalization, but my day treatment appointments were frequent, cut into school hours, and went on for many months. Confused and embarrassed, I didn’t know how to account for my numerous school absences, or how I would be perceived if I told the truth. I ended up saying to most people that I had “a series of oral surgeries, ” and to this day, I don’t know how I decided on such a specific and ridiculous excuse. I also realize now that the fact that I had lost so much weight, was not allowed to participate in gym class, and refused to enter the

cafeteria or eat in public had probably already given me away.

I did have three close friends who knew the whole truth about my illness and my absences because I decided to tell each of them separately about elements of my

experience. They each were warm and wonderful recipients of my disclosure, and without their support I would not have survived school and simultaneous outpatient treatment. That said, for many years I have contemplated how serious mental health conditions can influence a young person’s academic identity and experiences in school, above and beyond the physical, cognitive, and emotional challenges of the disorder. Even now, I am not certain what compelled me to tell my three best friends about my mental illness and recovery, and I also still do not know what might have been a better choice

than “oral surgery” to explain to everyone else at school where I had been, and why.

Historicity. I am a product of my individual experiences, but also of my culture and era. In the same way, this research is a product of the historical moment in which it has taken place. The design of this study’s conceptual framework is deeply influenced by

the historical moment in which the study took place. This research was conducted during a time of heightened national attention to mental health and mental illness - particularly related to youth and young adults. At no other time in history have we engaged in this type of public conversation.

The contemporary moment. In many ways, this study is book-ended by the

school shootings at Sandy Hook Elementary in 20121 at its outset, and by the most recent

undergraduate suicide on my own home campus at its conclusion2. Unmet mental health

needs among young adults continue to be significant, and they sometimes result in tragedy. Though I take issue with the media’s tendency to sensationalize pathology – particularly when assumed to be linked to violence – I acknowledge that we live in a unique historical moment, and that numerous recent school shootings and campus

suicides3 demand a refocusing of attention toward the critical task of transformative

change.

As someone with my own lived experience of mental illness, I am deeply committed to sharing complex stories of recovery. When I was in high school and college, the national climate and public dialogue surrounding youth mental health was distinctively different from what young people experience today. Back then, there were 1 _{A lone gunman and young adult, Adam Lanza, killed 6 educators and 20 first-graders at Sandy Hook}

Elementary School in Newtown, CT on Dec. 14, 2012.

2 _{There have been ten student suicides at the University of Pennsylvania between Feb, 2013 and April 2016.}

The most recent occurred on April 11, 2016. The Daily Pennsylvanian covered the story here: http://www.thedp.com/article/2016/04/student-suicide-prompts-criticisms-of-administration

3 _{There have been 187 school shootings in the US since 2013. See “Everytown For Gun Safety” statistics}

no television commercials for anti-depressant medications; student clubs such as Active

Minds4to promote mental health on college campuses had not yet emerged; national

efforts to prevent campus suicides had not yet been initiated5; and “acting bipolar” was

not considered an adolescent badge of honor. In addition, we as a country had not yet weathered the campus shootings at Columbine High School, Virginia Tech, and Sandy Hook Elementary. Our focus had not yet shifted to youth and mental illness.

Today, our culture is steeped in conversations related to youth mental health, yet the national dialogue seems limited to connections among unmet mental health needs and devastating tragedy. I believe that we have neglected to shed light on other types of equally important stories - stories of resilience, thriving, and young people surpassing expectations. It is with this in mind that I conceived of the present study.

My own coming of age (the 1990s). When I was in college in the 1990s, it was

the National Institute of Mental Health’s “decadeof the brain”6. Advances in

4_{Founded in 2004 at the University of Pennsylvania by then-undergraduate student Alison Malmon, Active}

Minds is a non-profit organization using student voice “to change the conversation about mental health on college campuses.” The organization develops and supports chapters of student-run mental health

awareness, education, and advocacy groups on campuses. (http://scholars.activeminds.org/about-emerging- scholars/about-active-minds)

5_{For one example of contemporary and nation-wide work to prevent campus suicide, see The Jed}

Foundation:https://www.jedfoundation.org/

6

“From 1990 to the end of 1999, the Library of Congress and the National Institute of Mental Health of the National Institutes of Health sponsored a unique interagency initiative to advance the goals set forth in a proclamation by President George Bush designating the 1990s as the Decade of the Brain: ‘to enhance public awareness of the benefits to be derived from brain research through ‘appropriate programs,

identification and treatment of mental illness - including new brain imaging techniques and psychotropic medications – helped to make college a possibility for many young adults who a decade prior might not have graduated from high school (Sharpe, Bruininks, Blacklock, Benson, & Johnson, 2004). The disability rights movement had been well underway for approximately fifteen years (Winter, 2003), and research and commentary regarding racial, ethnic, and cultural “diversity” in schools and colleges was becoming common (Afolayan, 1994; Hurtado, Milem, Clayton- Pedersen & Allen, 1998). In

addition, work exploring “full inclusion” for students with disabilitieswas prevalent in

both scholarly literature and the national media (Chira, 1993; Marriot, 1990; Zigmond & Baker, 1996). The 1975 Education for All Handicapped Children Act was reauthorized in 1990 and given the new name “Individuals with Disabilities Education Act” (IDEA), setting the stage for inclusive public education and guaranteeing access to learning for every child.

I came of age when Prozac Nation (Wurtzel, 1994) was a New York Times

bestseller. It was penned by its author when she was only 26, and its message reverberated across the country. As a college Senior myself, I remember hearing

Elizabeth Wurtzel speak about her journey through depression and her experiences with psychopharmacology when she visited our campus on a book tour. I appreciated her book and her talk, and it resonated with my own experience; but, strangely, I felt no inkling to tell any of my friends in college about my mental health history. My own story of “madness,” medication, and recovery seemed distant, surreal, and very much in the past. I had been healthy and free of eating disorder and depressive symptoms for several years and I felt no need to unearth them.

After college, I went to film school and embarked on my first career as a

documentary filmmaker. I discovered the genre of the “essay film” and was inspired by the power of first-person narrative and experimental film techniques to share intimate experiences. When I was 25 (still an emerging adult myself), I attempted to use film to link my personal experience with mental illness in high school to broader themes of identity and recovery. I was finally ready to “come out” myself. The resulting film,

Slender Existence, was to my knowledge the first documentary about recovery from

anorexia that was directed, edited, and narrated by someone who had actually had the disorder. I told (disclosed) the story of my recovery in screenings in friends’ living rooms, in campus theaters and, later on public television. Audiences seemed surprised at my candor and I was lauded for my “bravery” and called “a feminist filmmaker.” I felt a lightness and freedom that I hadn’t felt before. In a way, making and sharing the film was a type of exorcism - a way to tell a story and then be done with it. Except that this story wasn’t over. And I was naïve to have believed that the telling would lock my experience in the past like a tree in a petrified forest.

As I was screening Slender Existence around the country, my depression came

back in full force. What I thought had come and gone – something solely in the past – had returned with ferocity. The experience necessitated a reframing of how I understood recovery, as well as a new humility about the unexpected nature of growth and

development. It also forced me to acknowledge that recovery is hard work, and that managing one’s mental health while going about the business of becoming an adult takes time, intention, and lots of trial and error.

Fast forward ten years (to when I entered graduate school for education and psychology) and a seeming cottage industry of “memoirs of madness” had erupted in the popular press with parents, siblings, and people in recovery themselves sharing their stories in print and on screen. A new and needed era of honesty and openness about the prevalence of mental illness, evolving treatments, and personal experiences of recovery had emerged. Though the courage and candor of these authors should be lauded, there are two emerging themes in these works that are conspicuous due to their absence: (1) there are very few descriptions of youth and young adults’ experiences of mental illness and

recovery while they are still youth and young adults (as opposed to filtered through the

lens of adult recollection, as I had done in my film), and (2) the few times that education or experiences in school are mentioned are to recount negative events such as doing poorly academically, having a first psychotic break in college, or leaving school altogether, unable to return.

In reviewing many of these memoirs, I became interested in the possible counter-

narrative of young people doing well in school, not because they “overcome” mental

illness or disability, but because they live with and through it; and certainly not because their schools or colleges are particularly helpful during this process, but often in spite of it. I was developing what I now recognize as a strengths-based approach to conceiving of education and continued development for students with psychiatric disabilities,

conceptualizing their educational pathways as not apart from their experiences of mental

illness and recovery, but as an integral part of them. This interest is the root of my

The power of storytelling. My professional background in documentary

filmmaking is married with a strong belief in the transformative power of storytelling to catalyze social change. Whether in the form of a memoir, journalistic article, radio commentary, campaign speech, or documentary film, an authentic personal narrative can shine light on dark places, translate silence into speech, energize, educate, and even spark social justice movements. This conviction in the power of storytelling was the impetus for my filmmaking work, and it remains at the root of my commitment to rigorous

qualitative research. As the late, great, Maya Angelou has said, “there is no greater agony than bearing an untold story inside you.” And creating the space, place, and relationships that bring people’s stories to light for the common good is part of what I hope to do as a researcher.

Worldview(s)

A worldview, or paradigm, is “a general philosophical orientation about the world and the nature of research that a researcher brings to a study” (Creswell, 2014, p. 6). Put another way, one’s worldview, whether made explicit or not, is a basic set of beliefs