MULTICULTURALLY CONSCIOUS ACCEPTANCE AND COMMITMENT THERAPY: A PROPOSED TREATMENT INTERVENTION FOR LATINO AND MEXICAN-AMERICAN FAMILIES AFFECTED BY CHILDHOOD CANCER A dissertation presented to the faculty of ANTIOCH UNIVERSITY SANTA BARBARA In partial fulfillment of the requirement for the degree of DOCTOR OF PSYCHOLOGY In CLINICAL PSYCHOLOGY By MERUSHKA BISETTY, M. APRIL 2018 MULTICULTURALLY CONSCIOUS ACCEPTANCE AND COMMITMENT THERAPY: A PROPOSED TREATMENT INTERVENTION FOR LATINO AND MEXICAN-AMERICAN FAMILIES AFFECTED BY CHILDHOOD CANCER This dissertation, by Merushka Bisetty, M., has been approved by the committee members signed below who recommend that it be accepted by the faculty of Antioch University Santa Barbara in partial fulfillment of requirements for the degree of DOCTOR OF PSYCHOLOGY Dissertation Committee: __________________________________________ Betsy Bates Freed, Psy. Chairperson __________________________________________ Daniel Schwartz, Ph. Second Faculty __________________________________________ Daniel Greenfield, M.
External Expert ii © 2018 Merushka Bisetty All rights reserved iii Abstract Childhood cancers remain the number one cause of death by disease in children across the world (National Cancer Institute, 2018). Childhood cancers affect children and families of all ages, cultures, and socioeconomic demographics. Although literature exists on various styles of therapeutic and emotional support for families affected by childhood cancer, the data are extremely sparse and a comprehensive meta-analysis of culturally relevant psychosocial support efforts specific to Mexican-American and Latino children and families does not exist. This paper will provide thoroughly researched psychosocial interventions and best practices specific to families affected by childhood cancer.
The paper will build on Acceptance and Commitment Therapy (ACT), a transdiagnostic and third wave branch of behavioral intervention. The writer proposes a treatment approach that incorporates culturally sensitive themes for use with Latino and Mexican-American families impacted by childhood cancer. An emphasis will be placed on concepts related to familismo, personalismo, respeto, simpatia, and the belief in fatalism as a means of dealing with the cancer experience. The intervention will focus on religion, spirituality, and family narratives, as well as curative and traditional foods found to provide a sense of healing and nurturing to most individuals and families within the Latino and Mexican-American cultures.
These constructs and values will be interwoven into each of the six weekly sessions of the culturally conscious ACT modality. This will be done to emphasize the unique needs and constructs of the Latino and Mexican- American cultures in hopes of creating efficacious psychosocial treatment. This Dissertation is available in Open Access at AURA: Antioch University Repository and Archive, http://aura.edu and OhioLink ETD Center, http://www.edu/etd iv Keywords: childhood cancer, culture, psychosocial, intervention v Acknowledgments I dedicate this paper to my parents who supported me in pursuing this adventure by bringing my brother and me to the United States in pursuit of bigger and brighter opportunities. I would like to pay sincerest gratitude to my dissertation committee: Dr.
Betsy Bates Freed, Dr. Daniel Schwartz, and Dr. Daniel Greenfield, for supporting me through this rigorous and empowering process by providing words of encouragement as well as immeasurable wisdom and expertise to this body of work. It is my hope that this treatment proposal adds to the field of research related to cultural inclusion.
I am hopeful that my work will provide a great sense of insight into the need for culturally sensitive psychosocial supports fundamental to supporting and holistically healing underserved and multicultural families affected by childhood cancer. vi TABLE OF CONTENTS Abstract. iv CHAPTER I: Introduction .1 Statement of Purpose .3 Overview of Problem .6 Impact on Family .13 Introduction to ACT .17 CHAPTER II: Literature Review .19 Children and Cancer .19 Latino Children and Cancer .23 Spirituality and Religion .27 Family Systems Model .34 CHAPTER III: Treatment Proposal .37 Culturally Conscious Version of ACT .64 vii Chapter I Introduction The topic of childhood cancer and the disparities that exist in efficacious and culturally conscious psychosocial treatment interventions first captured my interest through my role as the Family Resource Specialist at a childhood cancer non-profit organization in Santa Barbara, CA. In my work advocating for families, seeking to secure fundamental resources for them, and providing emotional support in times of an initial diagnosis, recurrent relapse, death of a child, divorce, and/or loss of home, I learned just how debilitating and pervasive is the disease and how much of an all- encompassing experience it is for everyone in the family to withstand.
I heard countless narratives of families struggling with the emotional and financial burdens that come with caring for a sick child; many parents – and often, grandparents - were unable to provide food, clothes, diapers, toys, and in some cases, shelter to their children. Some caregivers continued to work full-time, while in some households one parent, typically the mother or grandmother, stopped working entirely in order to tackle the multitude of hospital visits (including but not limited to lab work, checkups, chemotherapy, and surgery); extended emergency room stays; and to stay close to their bedridden child who was experiencing side effects related to chemotherapy. Along with this extended task list came the responsibility of taking care of other non-sick children in the home (preparing food, ensuring that school assignments were completed, and seeking to ensure a relative sense of normalcy despite the emotional turmoil). During routine phone check-ins or unexpected office drop-ins, I heard harrowing stories of separations and impending divorce due to high levels of stress that were placed on an intimate relationship during the cancer experience.
Hopelessness and a sense of feeling “stuck” were phrases I often heard. After completing an initial intake with a new family, the mother of a 2-year-old Latino boy shared through bouts of tears: “How could this happen to us? We’re good people, I don’t know how we’re going to get through this.” Although this narrative is heart wrenching, it elicited a sense of urgency within me to provide a warm and inviting space for parents, siblings, and grandparents to share their stories and experiences while feeling supported. I wanted this feeling of validation and encouragement to extend beyond my office and I hoped to include families from all walks of life who were experiencing hardship due to a cancer diagnosis. Tough times were frequent for these families; however, one constant was the unwavering time, energy, and devotion they directed toward caring for and unconditionally supporting their child.
I was fortunate enough to witness love, courage, fear, and with that, a sense of resiliency, that families impacted by a form of childhood cancer encompassed and embraced. Latino and Mexican-American children and families formed the majority of the recipients of services received at the non-profit. I was able to contribute my clinical training and skills through daily conversations via telephone, in the field, in the office, and/or in hospital waiting rooms while children received medical interventions. Additionally, I had the privilege of working with medical social workers, nurses, and grief therapists during the monthly support groups held for family members who wanted and needed a space to share similar experiences and collectively attempt to heal and grow.
From my experience of reviewing surveys, engaging in conversations with parents and teenagers, and as a result of collaborative discussions with medical healthcare 2 teams (i. medical social workers, oncologists, nurses, grief therapists, etc.), as well as via my review of the existing literature (which revealed a lack of culturally-rich and inclusive research studies), it became evident that a need was prevalent: core cultural concepts relative to the Latino and Mexican-American culture were not typically or consistently being openly discussed in support groups and mental health treatment. In addition, family members themselves expressed a strong need for a more individualized approach to the support services they were receiving. Therefore, I began researching culturally sensitive psychosocial interventions for use with the Mexican-American and Latino population and found the literature to be inadequate based on the need and demand relative to this expanding demographic in the United States.
I feel a strong desire to advocate for this population due to my personal connection to the children and families who have experienced trauma directly related to a childhood cancer diagnosis. Therefore, I am introducing a new modality which encompasses cultural sensitivity and efficacious outcomes in relation to post-traumatic stress symptoms (PTSS) found to be present among children and families directly and indirectly impacted by childhood cancer. Statement of Purpose The purpose of this review is to explore the various therapeutic modalities used to treat children and families affected by various forms of childhood cancer in America. This chapter of my paper will examine cultural similarities and differences within the Latino, Mexican-American, and dominant cultures in American society in an attempt to decipher how the currently available binary and culturally insensitive forms of therapeutic interventions hinder overall emotionally curative outcomes.
A second 3 concept that will be explored is the predominant form of psychological and psychosocial treatment including modalities and interventions with the pediatric and childhood cancer population in today’s society. Finally, Acceptance and Commitment Therapy (ACT) will be introduced and modified based on key cultural norms, concepts, traditions, and values as a culturally conscious intervention for use with Latino and Mexican-American families affected by childhood cancer. For the purpose of this research study, the term Latino is used to identify persons of Mexican, Puerto Rican, Cuban, Central and South American, Dominican, and Spanish descent. A Brief Overview of the Problem Childhood cancers remain the number one cause of death by disease in children across the world (National Cancer Institute, 2018).
The American Cancer Society states that 43 children are diagnosed with a form of cancer each day. Additionally, there are estimated to be 1,180 deaths linked to this malady in 2018. Cancers affect children and families of all ages, cultures, and socioeconomic demographics. Furthermore, children and their caregivers, predominantly mothers, have been found to endorse symptoms consistent with posttraumatic stress soon after a cancer diagnosis and for the duration of medical treatments (Bruce, 2005).
These symptoms include: anxiety, depression, a sense of helplessness, persistent avoidance of hospitals – sometimes even in emergency situations - or talking about cancer, as well as withdrawal from certain activities, symptoms that may in the case of the children studied subsequently impair their psychological functioning continuing into adulthood (Bruce, 2005; Fletcher, 1996; Salmon & Bryant, 2002). Each family member of a child diagnosed with cancer has a unique perspective on the shared familial, societal, and cultural experience of what cancer 4 means to them (Buchbinder, Casillas, & Zeltzer, 2011). Therefore, psychological and psychosocial support for the collective family is a necessity that requires attention in the appropriate settings and at the appropriate times. In 1998, the survival rate for Acute Lymphoblastic Leukemia (ALL) in children was estimated to be 73% (Eiser, 1998).
Estimates today conclude that the survival rate for this cancer has reached an impressive 90% (ACS, 2018). Child and adolescent cancer survivors typically attend follow-up care for 5 to 10 years after treatment completion in order to screen for reoccurrence, late-effects, and subsequent health issues linked to oncological treatment (Mellblom et al. Follow-up care appointments may not include discussion of the level of psychological and emotional distress experienced by children and adolescents affected by cancer. Mellblom et al., (2017) found that when the topic of emotional distress was posited within the context of these follow-up sessions, child and adolescent survivors endorsed difficulties with anxiety, depression, change in physical appearance related to treatment, difficulties at school, sleeping problems, cognitive problems, and a myriad of health concerns.
Additionally, Sloper (2000) found that high levels of parental distress have been found to exist at the initial time of diagnosis and during the arduous process of treatment and caregiving upon discharge back to the family home. Parental distress is especially prevalent among caregivers whose children are exposed to longer treatments and hospital stays, and clinically significant symptoms tend to persist throughout the lifetime trajectory of impacted parents (Sloper, 2000).
