Stakeholders’ involvement in the development and planning of an intervention aimed at integrated care for breast cancer survivors with pain complaints: practical insights and challenges

Abstract

Background: Persisting pain complaints are prevalent among breast cancer survivors and can become complex in nature, increasing the need for both pain prevention and treatment in an integrated manner. 
 Objective: Managing (chronic) pain requires complex models of care, provided by an interdisciplinary team of healthcare providers. However, the majority of breast cancer survivors with pain complaints are not monitored in an interdisciplinary manner. There is a lack of systematic, integrated, and coordinated follow-up care for breast cancer survivors experiencing pain. Therefore, we developed an intervention that follows a step-wise care model, aimed at timely and adequate pain management among breast cancer survivors. But, to achieve change in pain prevention and treatment, various stakeholders at multiple levels should be involved and addressed.
 Methods: To develop such an intervention and plan for its implementation and evaluation, we followed an intervention mapping approach. As such, we involved relevant stakeholders during the different stages of the development and planning process including breast cancer survivors, healthcare providers from various disciplines, representatives of professional associations who help realize sustainable implementation and adoption of the intervention, and experts in education. Throughout the duration of the research project, a steering group was also periodically consulted and their feedback was requested on the results of each project stage and as a preparation for the next stages.
 Results: To involve these stakeholders and strive for co-design, we used different methods and levels of participation. For example, stakeholders contributed to the identification of current needs and possible barriers in the implementation of the intervention in practice. Additionally, the relevancy and feasibility of the developed intervention components was evaluated before implementation. Their input also helped determine which analyses and outcome measures should be prioritized when assessing the impact of the intervention. The stakeholders’ feedback was collected through asynchronous and synchronous focus groups, and online questionnaires.
 Conclusions: This study can inform others about how to prepare for the development, implementation, and evaluation of an intervention while taking into account stakeholders’ perspectives, experiences, and needs. We would also like to share our practical insights, our challenges related to co-design, and future opportunities to achieve a higher level of stakeholder participation.