Nicolais Christina J, Bernstein Ruth, Saez-Flores Estefany, McLean Katherine A, Riekert Kristin A, Quittner Alexandra L
Department of Psychology, University of Miami, 5665 Ponce de Leon Blvd, Coral Gables, FL, 33146, USA.
Department of Pediatrics, Rush University Medical Center, Chicago, IL, USA.
J Clin Psychol Med Settings. 2019 Dec;26(4):530-540. doi: 10.1007/s10880-018-9598-z.
Cystic fibrosis (CF) is a progressive, genetic disease affecting multiple organ systems. Treatments are complex and take 2-4 h per day. Adherence is 50% or less for pulmonary medications, airway clearance, and enzymes. Prior research has identified demographic and psychological variables associated with better adherence; however, no study has extensively identified facilitators of treatment adherence (e.g., adaptive behaviors and cognitions) in a sample of parents and adolescents. Forty-three participants were recruited from four CF centers as part of a larger measurement study. Participants included 29 parents (72% mothers; 72% Caucasian) and 14 adolescents (ages 11-20, 64% female, 71% Caucasian). Participants completed semi-structured interviews to elicit barriers to adherence. However, facilitators of adherence naturally emerged, therefore indicating need for further exploration. Interviews were audiotaped, transcribed and content-analyzed in NVivo to identify those behaviors and beliefs that facilitated adherence, using a phenomenological analysis. Frequencies of these themes were tabulated. Nine themes emerged, with individual codes subsumed under each. Themes included social support, community support, organizational strategies, "intrinsic characteristics," combining treatments with pleasurable activity, flexibility, easier or faster treatment, prioritizing treatments, and negative effects of non-adherence. Results demonstrated the importance of identifying strategies that positively affect adherence. Interventions that are strength-focused, build on prior success, and utilize positive models generated by those who have successfully integrated CF treatments into their lives are more likely to be efficacious.
囊性纤维化（CF）是一种影响多个器官系统的进行性遗传病。治疗复杂，每天需要2至4小时。肺部药物、气道清理和酶类治疗的依从性为50%或更低。先前的研究已经确定了与更好的依从性相关的人口统计学和心理变量；然而，尚无研究在父母和青少年样本中广泛确定治疗依从性的促进因素（如适应性行为和认知）。作为一项更大规模测量研究的一部分，从四个CF中心招募了43名参与者。参与者包括29名父母（72%为母亲；72%为白种人）和14名青少年（年龄在11至20岁之间，64%为女性，71%为白种人）。参与者完成了半结构化访谈，以找出依从性的障碍。然而，依从性的促进因素自然出现，因此表明需要进一步探索。访谈进行了录音、转录，并在NVivo中进行内容分析，以使用现象学分析确定那些促进依从性的行为和信念。将这些主题的出现频率制成表格。出现了九个主题，每个主题下包含各自的编码。主题包括社会支持、社区支持、组织策略、“内在特征”、将治疗与愉悦活动相结合、灵活性、更简便或更快的治疗、优先安排治疗以及不依从的负面影响。结果表明确定对依从性有积极影响的策略的重要性。以优势为重点、基于先前的成功经验并利用那些已成功将CF治疗融入生活的人所产生的积极模式的干预措施更有可能有效。
