Information School, University of Sheffield, Sheffield, United Kingdom.
Blantyre Institute for Community Outreach, Blantyre, Malawi.
J Med Internet Res. 2023 May 11;25:e45440. doi: 10.2196/45440.
People living with HIV/AIDS and their informal caregivers (usually family members) in Malawi do not have adequate access to patient-centered care, particularly in remote rural areas of the country because of the high burden of HIV/AIDS, coupled with a fragmented and patchy health care system. Chronic conditions require self-care strategies, which are now promoted in both developed and developing contexts but are still only emerging in sub-Saharan African countries.
This study aims to explore the effects of the implementation of a short-term intervention aimed at supporting informal caregivers of people living with HIV/AIDS in Malawi in their caring role and improving their well-being. The intervention includes the dissemination of 6 health advisory messages on topics related to the management of HIV/AIDS over a period of 6 months, via the WhatsApp audio function to 94 caregivers attending peer support groups in the rural area of Namwera.
We adopted a community-based participatory research approach, whereby the health advisory messages were designed and formulated in collaboration with informal caregivers, local medical physicians, social care workers, and community chiefs and informed by prior discussions with informal caregivers. Feedback on the quality, relevance, and applicability of the messages was gathered via individual interviews with the caregivers.
The results showed that the messages were widely disseminated beyond the support groups via word of mouth and highlighted a very high level of adoption of the advice contained in the messages by caregivers, who reported immediate (short-term) and long-term self-assessed benefits for themselves, their families, and their local communities.
This study offers a novel perspective on how to combine community-based participatory research with a cost-effective, health-oriented informational intervention that can be implemented to support effective HIV/AIDS self-care and facilitate informal caregivers' role.
在马拉维，艾滋病毒/艾滋病患者及其非正式照顾者（通常是家庭成员）无法充分获得以患者为中心的护理，尤其是在该国偏远的农村地区，这是由于艾滋病毒/艾滋病负担沉重，加上支离破碎和零星分布的医疗保健系统。慢性病需要自我护理策略，这在发达国家和发展中国家都得到了推广，但在撒哈拉以南非洲国家仍处于起步阶段。
本研究旨在探讨实施一项短期干预措施的效果，该措施旨在支持马拉维艾滋病毒/艾滋病患者的非正式照顾者在照顾角色中，并改善他们的幸福感。该干预措施包括在 6 个月的时间内，通过 WhatsApp 音频功能向在 Namwera 农村地区参加同伴支持小组的 94 名照顾者传播 6 条与艾滋病毒/艾滋病管理相关的健康咨询信息。
我们采用了基于社区的参与式研究方法，通过与非正式照顾者、当地医生、社会护理工作者和社区首领合作设计和制定健康咨询信息，并在与非正式照顾者进行事先讨论的基础上提供信息。通过对照顾者进行个别访谈，收集了关于信息质量、相关性和适用性的反馈。
结果表明，这些信息通过口口相传得到了广泛传播，超出了支持小组的范围，并突出显示了照顾者非常高的采纳信息中所包含的建议的程度，他们报告说自己、家人和当地社区立即（短期）和长期获得了自我评估的收益。
本研究提供了一个新颖的视角，即如何将基于社区的参与式研究与具有成本效益的以健康为导向的信息干预措施相结合，以支持有效的艾滋病毒/艾滋病自我护理并促进非正式照顾者的角色。
