The government-funded ‘Punjab Thalassaemia Prevention Project’ (PTPP) in Pakistan includes cascade screening for biological relatives of children with beta-Thalassaemia Major (β-TM). However, there is low uptake of cascade screening. This paper presents the (i) development of a paper-based ‘decision support intervention for relatives’ (DeSIRe) to enable PTPP Field Officers to facilitate informed decision making about carrier testing, and (ii) assessment of the feasibility and acceptability of the DeSIRe. The intervention was developed using the International Patient Decision Aids Standards quality criteria and Ottawa Decision Support Framework. Twelve focus groups were conducted (September and October 2020) to explore the views of healthcare professionals (HCPs) and relatives of children with β-TM, in six cities. The focus groups were attended by 117 participants (60 HCPs and 57 relatives). Thematic analysis showed that the DeSIRe was considered acceptable for supporting relatives to make informed decisions about cascade screening, and potentially feasible for use in clinical practice. Suggestions for changing some words, the structure and adding information about how carrier testing relates to consanguineous marriages will enable further development of the DeSIRe. Participants generally welcomed the DeSIRe; however, they highlighted the perceived need to use more directive language, hence showed a cultural preference for directive genetic counselling. The findings highlight challenges for researchers using western theories, frameworks, policies and clinical guidelines to develop decision support interventions for implementation more globally. Future research is needed to evaluate the use of the DeSIRe in routine practice and whether it enables relatives to make informed decisions.

巴基斯坦政府资助的“旁遮普地中海贫血预防项目”(PTPP) 包括对患有严重 β-地中海贫血 (β-TM) 的儿童的亲生亲属进行级联筛查。然而，级联筛选的吸收率很低。本文介绍了 (i) 开发纸质“亲属决策支持干预” (DeSIRe)，以使 PTPP 现场官员能够促进有关载体测试的知情决策，以及 (ii) 评估 DeSIRe 的可行性和可接受性. 该干预是使用国际患者决策辅助标准质量标准和渥太华决策支持框架开发的。在 6 个城市开展了 12 个焦点小组（2020 年 9 月和 2020 年 10 月），以探讨医疗保健专业人员 (HCP) 和 β-TM 儿童亲属的观点。焦点小组有 117 名参与者（60 名 HCP 和 57 名亲属）参加。主题分析表明，DeSIRe 被认为可以支持亲属就级联筛查做出明智的决定，并且在临床实践中可能是可行的。建议更改一些词语、结构并添加有关携带者测试如何与近亲结婚相关的信息，这将有助于 DeSIRe 的进一步发展。与会者普遍欢迎 DeSIRe；然而，他们强调了使用更多指令性语言的感知需求，因此表现出对指令性遗传咨询的文化偏好。研究结果突出了研究人员使用西方理论、框架、政策和临床指南制定决策支持干预措施以在全球范围内实施的挑战。