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增强癌症患者照护体验:通过角色调整和相互依存建立韧性。

Enhancing the cancer caregiving experience: Building resilience through role adjustment and mutuality.

机构信息

Uniformed Services University of the Health Sciences, Bethesda, MD, 20815, USA.

National Institutes of Health, Clinical Center, Bethesda, MD, 20815, USA.

出版信息

Eur J Oncol Nurs. 2019 Dec;43:101663. doi: 10.1016/j.ejon.2019.09.004. Epub 2019 Sep 10.

Abstract

PURPOSE

The purpose of this study was to explore the dyadic experience of caring for a family member with cancer. Particular attention was given to examine the relationship between dyadic perceptions of role adjustment and mutuality as facilitators in resilience for posttreatment cancer patients and family caregivers.

METHOD

For this convergent parallel, mixed-methods study using grounded theory methodologies, 12 dyads were recruited from the National Institutes of Health Clinical Center in Bethesda, Maryland, USA. Qualitative data collection focused on social interactions between cancer patients and their family caregivers to better understand and describe how post-treatment patients and caregivers create mutuality in their relationships, how they describe the processes of role-adjustment, and how these processes facilitate dyadic resiliency. Quantitative data collected through electronic survey included the Family Caregiving Inventory (FCI) for Mutuality Scale, Neuro QoL Ability to Participate in Social Roles and Activities, and Satisfaction with Social Roles and Activities-Short Forms, and Mental Health Continuum-Short Form (MHC).

RESULTS

Eleven participants were spouses. Twenty-two self-reported as Caucasian. The sample ranged from 35 to 71 years of age (Caregiver M = 53.7, Patient M = 54.3). Most of the caregivers were female (n = 8; 66.7%) and most of the patients were male (n = 9; 75%). Qualitative interview data illuminated two primary psychosocial processes relating to resilience, role adjustment and mutuality, as key facilitators for transformation and growth within dyadic partnerships coping with the challenges of cancer treatment and cancer caregiving. The FCI-mutuality score for patients (M = 3.65 ± 0.47) and caregivers (M = 3.45 ± 0.42) reflected an average level of relationship quality. Relative to participation in, and satisfaction with social roles and activities, patients (M = 50.66 ± 7.70, M = 48.81 ± 6.64, respectively) and caregivers (M = 50.69 ± 8.6, M = 51.9 ± 8.75, respectively) reported scores that were similar to the US General Population (M = 50 ± 10).

CONCLUSIONS

New patterns of role adjustment and mutuality can assist with making meaning and finding benefit, and these patterns contribute to dyadic resilience when moving through a cancer experience. There are few interventions that target the function of the dyad, yet the emergent model identified in this paper provides a direction for future dyadic research. By developing interventions at a dyadic level, providers have the potential to encourage dyadic resilience and sustain partnerships from cancer treatment into survivorship.

摘要

目的

本研究旨在探讨照顾癌症患者的双重体验。特别关注的是,研究角色调整和相互作用的双重感知如何促进癌症患者和家庭照顾者在治疗后的恢复力。

方法

这项汇聚平行、混合方法的研究采用扎根理论方法,从美国马里兰州贝塞斯达市国立卫生研究院临床中心招募了 12 对双生子。通过定性数据收集,重点关注癌症患者及其家庭照顾者之间的社会互动,以更好地理解和描述治疗后患者和照顾者如何在关系中创造相互作用,他们如何描述角色调整的过程,以及这些过程如何促进双重适应力。通过电子调查收集的定量数据包括家庭照顾者问卷(FCI)的相互作用量表、神经 QoL 参与社会角色和活动的能力以及对社会角色和活动的满意度-简短形式和心理健康连续体-简短形式(MHC)。

结果

11 名参与者是配偶。22 人自我报告为白种人。样本年龄在 35 岁至 71 岁之间(照顾者 M=53.7,患者 M=54.3)。大多数照顾者是女性(n=8;66.7%),大多数患者是男性(n=9;75%)。定性访谈数据阐明了与恢复力相关的两个主要心理社会过程,即角色调整和相互作用,作为应对癌症治疗和癌症护理挑战的双重伙伴关系中转变和成长的关键促进因素。患者(M=3.65±0.47)和照顾者(M=3.45±0.42)的 FCI-相互作用评分反映了关系质量的平均水平。与参与和对社会角色和活动的满意度相比,患者(M=50.66±7.70,M=48.81±6.64)和照顾者(M=50.69±8.6,M=51.9±8.75)的报告得分与美国普通人群(M=50±10)相似。

结论

新的角色调整和相互作用模式可以帮助患者找到意义和受益,这些模式有助于在经历癌症时建立双重适应力。很少有干预措施针对双生子的功能,但本文中出现的新兴模式为未来的双生子研究提供了方向。通过在双生子层面开展干预措施,提供者有可能鼓励双生子的适应力,并维持癌症治疗后的伙伴关系直至生存。

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