Cristancho-Lacroix Victoria, Wrobel Jérémy, Cantegreil-Kallen Inge, Dub Timothée, Rouquette Alexandra, Rigaud Anne-Sophie
Assistance Publique - Hôpitaux de Paris, Department of Gerontology, Hôpital Broca, Paris, France.
J Med Internet Res. 2015 May 12;17(5):e117. doi: 10.2196/jmir.3717.
Although several face-to-face programs are dedicated to informal caregivers of persons with dementia, they are not always accessible to overburdened or isolated caregivers. Based on a face-to-face intervention program, we adapted and designed a Web-based fully automated psychoeducational program (called Diapason) inspired by a cognitive approach.
This study aimed to evaluate through a pilot unblinded randomized controlled trial the efficacy and acceptability of a Web-based psychoeducational program for informal caregivers of persons with Alzheimer's disease (PWAD) based on a mixed methods research design.
We recruited and randomized offline 49 informal caregivers of a PWAD in a day care center in Paris, France. They either received the Web-based intervention and usual care for 3 months (experimental group, n=25) or only usual care (control group, n=24). Caregivers' perceived stress (PSS-14, primary outcome), self-efficacy, burden, perceived health status, and depression (secondary outcomes) were measured during 3 face-to-face on-site visits: at baseline, at the end of the program (month 3), and after follow-up (month 6). Additionally, semistructured interviews were conducted with experimental group caregivers at month 6 and examined with thematic analysis.
Intention-to-treat analysis did not show significant differences in self-perceived stress between the experimental and control groups (P=.98). The experimental group significantly improved their knowledge of the illness (d=.79, P=.008) from baseline to month 3. Of the 25 participants allocated to the experimental group, 17 (71%) finished the protocol and entirely viewed at least 10 of 12 online sessions. On average, participants used the website 19.72 times (SD 12.88) and were connected for 262.20 minutes (SD 270.74). The results of the satisfaction questionnaire showed that most participants considered the program to be useful (95%, 19/20), clear (100%, 20/20), and comprehensive (85%, 17/20). Significant correlations were found between relationship and caregivers' program opinion (P=.01). Thus, positive opinions were provided by husbands and sons (3/3), whereas qualified opinions were primarily reported by daughters (8/11). Female spouses expressed negative (2/3) or neutral opinions (1/3). Caregivers expected more dynamic content and further interaction with staff and peers.
In this study, quantitative results were inconclusive owing to small sample size. Qualitative results indicated/showed little acceptance of the program and high expectations from caregivers. Caregivers did not rule out their interest in this kind of intervention provided that it met their needs. More dynamic, personalized, and social interventions are desirable. Our recruitment issues pointed out the necessity of in-depth studies about caregivers' help-seeking behaviors and readiness factors.
Clinicaltrials.gov NCT01430286; http://clinicaltrials.gov/ct2/show/NCT01430286 (Archived by WebCite at http://www.webcitation/6KxHaRspL).
尽管有几个面对面的项目是专门针对痴呆症患者的非正式照料者的，但负担过重或孤立无援的照料者并不总是能够参与其中。基于一个面对面干预项目，我们改编并设计了一个基于网络的全自动心理教育项目（称为“全音阶”），该项目受到认知方法的启发。
本研究旨在通过一项试点非盲随机对照试验，基于混合方法研究设计，评估一个基于网络的心理教育项目对阿尔茨海默病患者（PWAD）非正式照料者的疗效和可接受性。
我们在法国巴黎的一个日托中心招募了49名PWAD的非正式照料者，并将他们线下随机分组。他们要么接受为期3个月的基于网络的干预和常规护理（实验组，n = 25），要么只接受常规护理（对照组，n = 24）。在3次面对面的现场访视中测量照料者的感知压力（PSS - 14，主要结局）、自我效能感、负担、感知健康状况和抑郁（次要结局）：基线时、项目结束时（第3个月）和随访后（第6个月）。此外，在第6个月对实验组照料者进行了半结构化访谈，并进行了主题分析。
意向性分析显示，实验组和对照组在自我感知压力方面没有显著差异（P = 0.98）。从基线到第3个月，实验组对疾病的了解显著提高（d = 0.79，P = 0.008）。在分配到实验组的25名参与者中，17名（71%）完成了方案并完整观看了12个在线课程中的至少10个。参与者平均使用该网站19.72次（标准差12.88），连接时长为262.20分钟（标准差270.74）。满意度调查问卷的结果显示，大多数参与者认为该项目有用（95%，19/20）、清晰（100%，20/20）且全面（85%，17/20）。在关系与照料者对项目的评价之间发现了显著相关性（P = 0.01）。因此，丈夫和儿子给出了积极评价（3/3），而主要是女儿给出了有保留的评价（8/11）。女性配偶表达了负面（2/3）或中性评价（1/3）。照料者期望有更具活力的内容以及与工作人员和同伴的进一步互动。
在本研究中，由于样本量小，定量结果尚无定论。定性结果表明该项目的接受度较低，而照料者的期望较高。照料者不排除对这类干预措施感兴趣，前提是它能满足他们的需求。更具活力、个性化和社交性的干预措施是可取的。我们的招募问题指出了深入研究照料者寻求帮助行为和准备因素的必要性。
Clinicaltrials.gov NCT01430286；http://clinicaltrials.gov/ct2/show/NCT01430286（由WebCite存档于http://www.webcitation/6KxHaRspL）
