Debra S Burns1, Sheri L Robb, Celeste Phillips-Salimi, Joan E Haase. 1. Department of Music and Arts Technology, Purdue School of Engineering and Technology, Indiana University-Purdue University Indianapolis, IN 46202, USA. desburns@iupui.edu
Abstract
BACKGROUND: Parents experience high levels of distress during their child's stem cell transplant that can decrease the ability to support their child and effectively communicate with healthcare providers. Because parents are a primary source of support, their perspectives are very important when evaluating supportive care interventions for their adolescents/young adults. OBJECTIVES: This study examined parents' perspective of their adolescents or young adults' (AYAs') experience with stem cell transplantation (SCT) and involvement in a therapeutic music video (TMV) intervention. METHODS: This was a phenomenological study using parents' interviews. The sample included 7 parents of 6 adolescents/young adults ranging in age from 13 to 21 years hospitalized for SCT for an oncology-related condition. Parents' interviews were conducted 100 days after transplantation. Sessions were audio taped, transcribed, and analyzed using Colaizzi's phenomenological analysis. RESULTS: We analyzed more than 350 significant statements from 7 parents. Seven theme categories emerged: (1) humbling, humiliating, horrible: parents' perspectives on the cancer experiences and SCT; (2) gratitude for the benefits of TMV intervention; (3) enhanced communication; (4) connectedness; (5) watching my AYA change and grow; (6) process of parent gaining insight; and (7) and an ironic recognition of both the sad and beautiful: parents' response to the TMV intervention. CONCLUSIONS: Parents' narratives suggest that the TMV intervention is a way to buffer the challenges related to SCT, and a larger study is warranted. IMPLICATIONS FOR PRACTICE: These preliminary data offer clinicians insight into parent perceptions about the cancer experience, specifically SCT for their AYA child, and can be used to inform and shape clinical care. Findings reinforce the importance of offering AYAs opportunities to experience independence and mastery and engage in meaningful communication during transplant.
BACKGROUND: Parents experience high levels of distress during their child's stem cell transplant that can decrease the ability to support their child and effectively communicate with healthcare providers. Because parents are a primary source of support, their perspectives are very important when evaluating supportive care interventions for their adolescents/young adults. OBJECTIVES: This study examined parents' perspective of their adolescents or young adults' (AYAs') experience with stem cell transplantation (SCT) and involvement in a therapeutic music video (TMV) intervention. METHODS: This was a phenomenological study using parents' interviews. The sample included 7 parents of 6 adolescents/young adults ranging in age from 13 to 21 years hospitalized for SCT for an oncology-related condition. Parents' interviews were conducted 100 days after transplantation. Sessions were audio taped, transcribed, and analyzed using Colaizzi's phenomenological analysis. RESULTS: We analyzed more than 350 significant statements from 7 parents. Seven theme categories emerged: (1) humbling, humiliating, horrible: parents' perspectives on the cancer experiences and SCT; (2) gratitude for the benefits of TMV intervention; (3) enhanced communication; (4) connectedness; (5) watching my AYA change and grow; (6) process of parent gaining insight; and (7) and an ironic recognition of both the sad and beautiful: parents' response to the TMV intervention. CONCLUSIONS: Parents' narratives suggest that the TMV intervention is a way to buffer the challenges related to SCT, and a larger study is warranted. IMPLICATIONS FOR PRACTICE: These preliminary data offer clinicians insight into parent perceptions about the cancer experience, specifically SCT for their AYA child, and can be used to inform and shape clinical care. Findings reinforce the importance of offering AYAs opportunities to experience independence and mastery and engage in meaningful communication during transplant.
Authors: Abby R Rosenberg; Joyce P Yi-Frazier; Claire Wharton; Karen Gordon; Barbara Jones Journal: J Adolesc Young Adult Oncol Date: 2014-12-01 Impact factor: 2.223
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Authors: Sheri L Robb; Debra S Burns; Kristin A Stegenga; Paul R Haut; Patrick O Monahan; Jane Meza; Timothy E Stump; Brooke O Cherven; Sharron L Docherty; Verna L Hendricks-Ferguson; Eileen K Kintner; Ann E Haight; Donna A Wall; Joan E Haase Journal: Cancer Date: 2014-01-27 Impact factor: 6.860
Authors: Ursula M Sansom-Daly; Claire E Wakefield; Richard A Bryant; Phyllis Butow; Susan Sawyer; Pandora Patterson; Antoinette Anazodo; Kate Thompson; Richard J Cohn Journal: BMC Cancer Date: 2012-08-03 Impact factor: 4.430