Unit of Neuroepidemiology, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy.
Department of Neuroimmunology and Neuromuscular Diseases, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy.
PLoS One. 2018 Jul 12;13(7):e0200532. doi: 10.1371/journal.pone.0200532. eCollection 2018.
We performed a qualitative study to investigate the experiences of participants in a multicentre randomized controlled trial on a home-based palliative approach (HPA) for adults with severe multiple sclerosis (MS) and their caregivers. Our aim was to explore the strengths and challenges of the intervention, and circumstances that may have influenced its efficacy.
Participants to the qualitative study were the patients, their caregivers, patient referring physicians, and the teams who delivered the HPA intervention. We performed semi-structured one-on-one interviews with 12 patients and 15 informal caregivers chosen using a maximum variation strategy, two focus group meetings with patient referring physicians (4 participants each), and one with the HPA teams (9 participants).
From data analysis (framework method) 38 sub-categories emerged, which were grouped into 10 categories and 3 themes: 'expectations,' 'met and unmet needs', and 'barriers'. Intervention benefits were improved control of symptoms and reduced sense of isolation of the patient-caregiver dyads. Limitations were: factors related to experimental design (difficulty of dyads in identifying examiner and team roles, additional burden for caregivers); team issues (insufficient team building /supervision, competing priorities); limitations of the intervention itself (insufficient length, lack of rehabilitation input); and external factors (resource limitations, under-responsive services/professionals). The referring physician focus groups provided little experiential data.
The HPA reduced patient symptoms and sense of isolation in patients and caregivers. The indirect role of the HPA teams, and insufficient length of the intervention were key limitations. The experimental design imposed additional burdens on the dyads. Key barriers were the paucity of available services, the demanding administrative procedures, and lack of networking facilities. These findings suggest that two major requirements are necessary for home palliative care to be effective in this patient population: HPA teams well-connected with MS rehabilitation services, and care delivered over the long-term, with variable intensity.
Current Controlled Trials ISRCTN73082124 (Registered 19/06/2014).
我们进行了一项定性研究，以调查参与一项多中心随机对照试验的参与者的经验，该试验针对患有严重多发性硬化症（MS）的成年人及其护理人员提供家庭姑息治疗方法（HPA）。我们的目的是探讨干预措施的优势和挑战，以及可能影响其疗效的情况。
定性研究的参与者包括患者、他们的护理人员、患者转诊医生以及提供 HPA 干预的团队。我们使用最大变化策略选择了 12 名患者和 15 名非正式护理人员进行半结构化一对一访谈，与患者转诊医生进行了两次焦点小组会议（每组 4 名参与者），并与 HPA 团队进行了一次焦点小组会议（9 名参与者）。
从数据分析（框架方法）中出现了 38 个子类别，这些子类别被分为 10 个类别和 3 个主题：“期望”、“满足和未满足的需求”和“障碍”。干预措施的好处是改善了症状的控制和减少了患者-护理人员对患者的孤立感。限制因素包括：与实验设计相关的因素（对护理人员和团队角色的识别困难，护理人员的额外负担）；团队问题（团队建设/监督不足，竞争优先级）；干预措施本身的局限性（时间不足，缺乏康复投入）；和外部因素（资源限制，服务/专业人员反应迟钝）。患者转诊医生的焦点小组提供的经验数据很少。
HPA 减少了患者和护理人员的症状和孤立感。HPA 团队的间接作用和干预措施的时间不足是关键限制。实验设计给患者带来了额外的负担。主要障碍是可用服务的缺乏、繁琐的行政程序和缺乏网络设施。这些发现表明，家庭姑息治疗要在这一患者群体中有效，需要满足两个主要要求：HPA 团队与多发性硬化症康复服务密切联系，以及提供长期、不同强度的护理。
当前对照试验 ISRCTN73082124（2014 年 6 月 19 日注册）。
