Department of Community and Health Systems, Indiana University School of Nursing, Indianapolis, IN.
Center for Aging Research, Regenstrief Institute, Indianapolis, IN.
JCO Oncol Pract. 2022 Apr;18(4):e525-e536. doi: 10.1200/OP.21.00164. Epub 2021 Nov 4.
Research eliciting patients' illness concerns has typically focused later in the cancer continuum, rather than during cancer treatments. Family caregiver concerns are overlooked during this time. Less is known about how patients and caregivers prioritize concerns during cancer treatments, which holds potential for improving supportive oncology care (ie, primary palliative care). The purpose of this study was to elicit and compare which domains of supportive oncology are of highest importance to patients and caregivers during cancer treatments.
Freelisting, a cognitive anthropology method, was used to elicit concerns in order of importance. Freelist data were analyzed using Smith's salience index. Qualitative interviews were conducted with a caregiver subsample to add explanatory insights.
In descending order, pain, death, fear, family, and awful were salient Freelist items for patients (n = 65), whereas sadness, time-consuming, support, anger, tired, death, and frustration were salient for caregivers (n = 24). When integrated with supportive oncology domains, patients' concerns reflected a prioritization of the physical (pain) and emotional (death, fear, and awful) domains, with less emphasis on social (family) aspects. Caregivers' prioritized the emotional (sadness, anger, death, and frustration) and social (time-consuming and support) domains, with less emphasis on the physical (tired) aspects.
Our findings suggest that enhancing primary palliative care delivery by oncology teams requires systems thinking to support the patient and caregiver as the primary unit of care. Primary palliative care may be improved by prioritizing interventions that address physical concerns among patients as well as key social concerns among caregivers to support the complex caregiving role while patients undergo cancer treatments.
研究引出患者的疾病关注点通常集中在癌症连续体的后期，而不是在癌症治疗期间。在此期间，忽视了家庭照顾者的关注点。人们对患者和照顾者在癌症治疗期间如何优先考虑关注点知之甚少，这对改善肿瘤支持治疗（即主要姑息治疗）具有潜在意义。本研究的目的是引出并比较患者和照顾者在癌症治疗期间对肿瘤支持治疗的哪些领域最为关注。
使用自由列表法（一种认知人类学方法）按重要性顺序引出关注点。使用 Smith 显著性指数对自由列表数据进行分析。对照顾者亚样本进行定性访谈以提供解释性见解。
按降序排列，疼痛、死亡、恐惧、家庭和可怕是患者（n=65）的显著自由列表项目，而悲伤、耗时、支持、愤怒、疲倦、死亡和沮丧是照顾者（n=24）的显著自由列表项目。将这些关注点与肿瘤支持治疗领域相结合，患者的关注点反映了对身体（疼痛）和情绪（死亡、恐惧和可怕）领域的优先排序，对社会（家庭）方面的关注较少。照顾者更关注情绪（悲伤、愤怒、死亡和沮丧）和社会（耗时和支持）方面，对身体（疲倦）方面的关注较少。
我们的研究结果表明，肿瘤治疗团队要加强主要姑息治疗的实施，需要系统思维来支持患者和照顾者作为主要护理单元。通过优先考虑干预措施，可以改善主要姑息治疗，这些干预措施既可以解决患者的身体问题，也可以解决照顾者的主要社会问题，从而在患者接受癌症治疗期间支持复杂的护理角色。
