Rowland Suzanne, Forbes Robin, Howell Doris, Kelly Helen, Haghayegh Arta Taghavi, Cardinale Maja, Ramnanan Trisha, Mayo Samantha J
Princess Margaret Cancer Centre, University Health Network.
Toronto General Hospital, University Health Network.
Can Oncol Nurs J. 2023 Apr 1;33(2):215-222. doi: 10.5737/23688076332215. eCollection 2023 Spring.
The purpose of this qualitative study is to understand, from the patient's perspective, their experience of living with advanced multiple myeloma, the psychosocial impact, and needs for support in managing and adapting to this illness.
An interpretive descriptive approach was used. Individual semi-structured telephone interviews were conducted with each participant, which focused on eliciting their descriptions of psychosocial issues and concerns, as well as the supports they use for coping with cancer. Transcripts were analyzed using interpretive description, resulting in the generation of common themes that represented the data.
The sample comprised twelve adults with a diagnosis of advanced multiple myeloma who had undergone at least three lines of treatment or were transfusion dependent. All participants were receiving ambulatory care for their myeloma in Toronto, Ontario, Canada. Four themes were generated: (1) confusion about the diagnosis and treatment options; (2) challenges in finding relevant information; (3) dealing with the chronicity of treatment side effects; (4) social support as critical for coping with the life-threat of multiple myeloma.
Findings suggest that the psychosocial impact of living with advanced multiple myeloma is greatly impacted by one's ability to understand the complexities of the diagnosis and access supports to cope with its physical and emotional consequences. Clinical interventions specifically tailored to meeting the information and support needs of this population are needed.
本定性研究旨在从患者角度了解其晚期多发性骨髓瘤的生活经历、心理社会影响以及应对和适应该疾病的支持需求。
采用解释性描述方法。对每位参与者进行了个体半结构化电话访谈，重点是引出他们对心理社会问题和担忧的描述，以及他们用于应对癌症的支持措施。使用解释性描述对访谈记录进行分析，从而生成代表数据的共同主题。
样本包括12名被诊断为晚期多发性骨髓瘤的成年人，他们至少接受了三线治疗或依赖输血。所有参与者均在加拿大多伦多安大略省接受骨髓瘤门诊护理。生成了四个主题：（1）对诊断和治疗选择的困惑；（2）寻找相关信息的挑战；（3）应对治疗副作用的长期性；（4）社会支持对于应对多发性骨髓瘤的生命威胁至关重要。
研究结果表明，晚期多发性骨髓瘤患者的心理社会影响很大程度上受到其理解诊断复杂性以及获得应对身体和情感后果支持的能力的影响。需要专门针对满足该人群信息和支持需求的临床干预措施。
