University of Kent, Centre for Health Service Studies, Canterbury, UK.
East Kent Hospitals University NHS Trust, Haemophilia and Thrombosis Centre, Canterbury, UK.
Health Expect. 2020 Oct;23(5):1350-1361. doi: 10.1111/hex.13119. Epub 2020 Aug 17.
Muscle strengthening exercises have the potential to improve outcomes for boys with haemophilia, but it is unclear what types of exercise might be of benefit. We elicited the views of health-care professionals, boys and their families to create and assess a home-based muscle strengthening programme.
To design and develop a muscle strengthening programme with health-care professionals aimed at improving musculoskeletal health, and refine the intervention by engaging boys with haemophilia and their families (Study 1). Following delivery, qualitatively evaluate the feasibility and acceptability of the exercise programme with the boys and the study's physiotherapists (Study 2).
A person-based approach was used for planning and designing the exercise programme, and evaluating it post-delivery. The following methods were utilized: modified nominal group technique (NGT) with health-care professionals; focus group with families; exit interviews with boys; and interviews with the study's physiotherapists.
Themes identified to design and develop the intervention included exercises to lower limb and foot, dosage, age accommodating, location, supervision and monitoring and incentivization. Programme refinements were carried out following engagement with the boys and families who commented on: dosage, location, supervision and incentivization. Following delivery, the boys and physiotherapists commented on progression and adaptation, physiotherapist contact, goal-setting, creating routines and identifying suitable timeframes, and a repeated theme of incentivization.
An exercise intervention was designed and refined through engagement with boys and their families. Boys and physiotherapists involved in the intervention's delivery were consulted who found the exercises to be generally acceptable with some minor refinements necessary.
肌肉强化锻炼有可能改善血友病男孩的预后，但目前尚不清楚哪种类型的锻炼可能有益。我们征求了医疗保健专业人员、男孩及其家人的意见，制定并评估了一项基于家庭的肌肉强化计划。
与医疗保健专业人员合作设计和开发肌肉强化计划，旨在改善骨骼肌肉健康，并通过让血友病男孩及其家人参与（研究 1）来完善干预措施。在实施后，使用男孩和研究的物理治疗师进行定性评估（研究 2），以评估运动计划的可行性和可接受性。
采用基于个人的方法规划和设计锻炼计划，并在实施后进行评估。使用了以下方法：医疗保健专业人员使用改良名义团体技术（NGT）；与家庭进行焦点小组讨论；与男孩进行离职访谈；以及与研究的物理治疗师进行访谈。
为设计和开发干预措施确定的主题包括下肢和足部运动、剂量、年龄适应、地点、监督和监测以及激励措施。在与男孩和家庭进行接触后，对干预措施进行了改进，他们对剂量、地点、监督和激励措施提出了意见。实施后，男孩和物理治疗师对进展和适应、物理治疗师的联系、目标设定、创建常规和确定合适的时间框架进行了评论，并提出了激励措施这一重复主题。
通过与男孩及其家人的接触，设计和完善了一项锻炼干预措施。参与干预措施实施的男孩和物理治疗师认为这些运动通常是可以接受的，但需要进行一些小的改进。
