3 Dimensions of Treatment Decision Making in Adolescents and Young Adults With Cancer

Abstract

This dissertation is dedicated to my family, who provided me unconditional support and love during this journey through my doctoral education: my children, David, Laura and John and my husband, Paul. v Acknowledgements There are so many people to whom I am very grateful for their assistance, support and mentoring during my doctoral education. I am especially thankful to the following individuals: Dr. Roberta Rehm, my faculty advisor and dissertation chair, whose wisdom and gentle guidance has been invaluable. She was constantly encouraging and teaching me. She spent immeasurable time sharing her knowledge and teaching me about qualitative research, family research and its application to pediatric nursing. She was instrumental in my successful grant applications to the National Institutes of Health/National Institute of Nursing Research and the American Cancer Society. I am humbled to have been her student over the past few years and aspire to be like her in the future. Dr. Linda Franck, chair of my qualifying exam, challenged me to look at my research through a broader lens. Her vast research experience set the bar high, which I strove to reach, and hope I did. She provided incredible mentorship and increased my understanding of the research process. Dr. Bonnie Halpern-Felsher, whose enthusiasm and knowledge of AYAs was critical for my dissertation. Thank you for sharing not only your expertise about AYAs, but also allowing me to participate in your lab meetings and learning from your wonderful staff. Dr. Robert Goldsby, whose long-time experience in pediatric oncology and especially in the area of AYAs helped to guide me. He kept the study grounded in reality, with a practical focus on research and the care of these patients. I was fortunate to learn so much from each of my committee members. Thank you for your time, expertise and patience. vi To the many members of the oncology team who enthusiastically supported this work in so many ways to move the science forward: Pam Simon, NP, Christie Chaudry, NP, Dr. Sheri Spunt MD, and the staff at both Lucile Packard Children's Hospital Stanford and Benioff Children's Hospital. I could not have done this work without your warm welcome and enthusiasm for me to conduct this research at your respective institutions. I felt supported and encouraged by your advice, words of encouragement, and assistance with the recruitment of participants. Finally, to the AYAs who participated in this study, it is with deep gratitude that I thank you for sharing your stories. You have taught me so much and I will never forget you. I would like to thank my three children: David, Laura and John, who have grown up to be such amazing human beings during this time and for whom I hope to have been a role model. Thank you for the many sacrifices you made for me. To my incredible, encouraging husband Paul, who has been my love, my support and my inspiration. Because of you, this dissertation has been possible. Lastly, to my parents, Kathleen and Robert, who were always so proud of my accomplishmen...

Clinician‐patient‐family decision‐making and health literacy in adolescents and young adults with cancer and their families: A systematic review of qualitative studies

“…Our review complements the work of Pyke-Grim et al, 16 by applying a HL lens and identifying social and contextual issues relevant to AYAs and how they influence decision-making. This is illustrated in our modified AYA framework, which recognizes the complex, variable, and dynamic nature of triadic decision-making between AYAs, families, and clinicians.…”

“…The identified themes suggested that family members and clinicians were prominent in facilitating higherorder HL skills such as understanding and using information to A recent systematic review of qualitative, quantitative, and mixed methods studies examined decision-making involvement in AYAs. 16 Participation was found to be an ongoing process impacted by situational moderators, including developmental stage, chronological age, disease state and recency of diagnosis, type of decision, decisional context, and family context. 16 These findings highlight the considerable heterogeneity and complexity of factors influencing AYAs' current or preferred involvement in their healthcare decisions across the illness trajectory at the time of their transition into adulthood.…”

“…16 Participation was found to be an ongoing process impacted by situational moderators, including developmental stage, chronological age, disease state and recency of diagnosis, type of decision, decisional context, and family context. 16 These findings highlight the considerable heterogeneity and complexity of factors influencing AYAs' current or preferred involvement in their healthcare decisions across the illness trajectory at the time of their transition into adulthood.…”

“…4,15 In AYAs, these interactions are often triadic in nature, involving families in addition to healthcare providers. 16 Qualitative research has identified that patients commonly use people in their social network to increase their HL when making decisions about their health 17 and that families may play a part in improving an individuals' HL skills or compensating for poor HL. 3 The Supported Health Literacy Pathway model 3 proposes that the development of HL in chronic conditions is influenced by people in the patient's social network who are involved in a sequential acquisition of HL skills required to be involved in shared decision-making: (a) contributing to knowledge about the condition, (b) assisting in using HL skills in its management, (c) being involved in clinician-patient communication, (d) assisting in co-producing informed options, and (e) engaging in shared decisions.…”

“…16); AML (N = 3); bone (N = 2); brain (N = 8);Ewing's sarcoma (N = 4); Hodgkin's lymphoma (N = 3); melanoma (N = 2); other (N = 9) To identify information, support, and decision-making needs and preferences of AYAs, the extent they were being met, and the implications for health professionals.…”