Understanding the information needs of women with rheumatoid arthritis concerning pregnancy, post-natal care and early parenting: A mixed-methods study
Understanding the information needs of women with rheumatoid arthritis concerning pregnancy, post-natal care and early parenting: A mixed-methods study
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DOI：
10.1186/s12891-015-0657-4
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发表时间：
2015-08-19
影响因子：
2.3
通讯作者：
Briggs, Andrew M.
中科院分区：
文献类型：
--
作者：
Ackerman, Ilana N.;Jordan, Joanne E.;Briggs, Andrew M.
背景资料：虽然类风湿性关节炎（RA）的妇女面临着一些挑战，在谈判的旅程，父母，没有研究探讨了信息需求的妇女与RA在其生育年龄。本研究的目的是确定需要（和首选模式/s的交付）的信息，怀孕，产后护理和早期养育的妇女与RA。方法：访谈和焦点小组进行了27名妇女与RA谁是怀孕在过去的5年中，目前怀孕或计划怀孕。逐字记录本采用归纳和演绎两种方法进行分析。使用了两种经过验证的工具来量化信息需求和偏好：教育需求评估工具（ENAT，范围0-156，分数越高表示需要更高的教育）和自主偏好指数（API，范围0-100，分数越高表示偏好越强）。缺乏关于药物安全的信息，在所确定的六个关键主题中，获得身心支持服务和应对与养育子女有关的日常挑战的实际战略最为突出。风湿病学家是治疗决策的主要信息来源，而关节炎消费者组织被认为是关键的“资源中心”。与会者特别喜欢以电子方式提供信息，农村与会者尤其如此。定量结果支持定性结果;平均而言，参与者报告了较高的教育需求（平均ENAT评分97.2，SD 30.8）和API评分表明，（平均89.8，SD 5.6）大于参与治疗决策的需要（平均值68.4，标准差8.2）。许多患有RA的女性很难找到与其慢性疾病有关的怀孕计划，怀孕和早期育儿的足够信息，显然需要开发以消费者为中心、以证据为基础的可获取信息。虽然大多数参与者信任他们的风湿病学家作为他们的主要信息来源，但对更多信息的需求是一致的，特别是关于怀孕和哺乳期间RA药物的安全性，并且强烈强调了从其他女性的个人经验中学习的重要性。
Background: Although women with rheumatoid arthritis (RA) face a number of challenges in negotiating the journey to parenthood, no studies have explored the information needs of women with RA in relation to their childbearing years. This study aimed to determine the need for (and preferred mode/s of delivery of) information regarding pregnancy, post-natal care and early parenting among women with RA.Methods: Interviews and focus groups were conducted with 27 women with RA who were pregnant in the last 5 years, currently pregnant or planning pregnancy. Verbatim transcripts were analysed using both inductive and deductive approaches. Two validated instruments were used to quantify information needs and preferences: the Educational Needs Assessment Tool (ENAT, range 0-156, higher scores indicate higher educational needs) and the Autonomy Preference Index (API, range 0-100, higher scores indicate stronger preferences).Results: Lack of information about medication safety, access to physical/emotional support services and practical strategies for coping with daily challenges related to parenting were the most prominent of the six key themes identified. Rheumatologists were the primary source for information regarding treatment decisions while arthritis consumer organisations were perceived as critical 'resource hubs'. There was strong preference for information delivered electronically, especially among rural participants. Quantitative outcomes supported the qualitative findings; on average, participants reported high educational needs (mean ENAT score 97.2, SD 30.8) and API scores indicated that desire for information (mean 89.8, SD 5.6) was greater than the need for involvement in treatment decision-making (mean 68.4, SD 8.2).Conclusions: Many women with RA struggle to find adequate information on pregnancy planning, pregnancy and early parenting in relation to their chronic condition, and there is a clear need to develop accessible information that is consumer-focused and evidence-based. Although most participants trusted their rheumatologist as their primary information source, there was consistent demand for more information, particularly regarding the safety of RA medications during pregnancy and breastfeeding, and the importance of learning from other women's personal experiences was strongly emphasised.