A diagnosis of cancer in a child is a life-altering event not just for the patient, but also for their caregivers. A child?s diagnosis of cancer multiplies the demands placed on caregivers and they often feel ill equipped to handle these activities, particularly if there are unmet information, communication, or resource needs. This can lead caregivers to experience physical stress, negative emotions, financial burden, and undesirable behavioral and physiological impacts. Ultimately, this can reduce caregivers? quality of life, which may impact their ability to provide appropriate medical care to their children. Due to the important role caregivers play, researchers have embarked on the development of supportive interventions to alleviate caregiver burden and facilitate coping and quality care. Van Houtven et al created the Caregiver Intervention Organizing Framework to align and advance caregiver focused oncology research. This framework postulates that interventions to improve a caregiver?s clinical skills/knowledge, psychosocial (self-efficacy and coping) competency, support seeking (organizational and coordination), and/or quantity of caregiving will lead to benefits for both them and the patient with cancer. To date though, most caregiver focused interventions have been targeted at caregivers of adults with cancer, completely ignoring the unique needs of caregivers of children with cancer. Therefore, using the Van Houtven framework as a guide, we propose to develop a pediatric oncology caregiver focused intervention. This intervention will be delivered in the form of a mobile health information technology (mHealth) tool. mHealth, defined as the application of mobile or wireless communication technologies to health and healthcare, has great potential to assist caregivers in navigating the healthcare system and support them in the medical management of their children. Caregivers believe that technology can help them to make caregiving more efficient, effective, safer and less stressful. Our hypothesis is that an mHealth tool that aims to support caregivers in their ability to provide medical care to their child with cancer will lead to improvements in their sense of self-efficacy, mastery of caregiving skills/knowledge, and will reduce stress, which will ultimately result in improvement of both caregiver and patient-centered outcomes.
The Specific Aims of this proposal are to: (1) Co-design and perform usability testing of an mHealth tool to address the medical management needs of caregivers of children with cancer utilizing a user-centered design process; and (2) Conduct a pilot randomized controlled trial of the mHealth tool for caregivers of children with cancer, assessing a) feasibility of caregiver use over extended period of time, b) acceptability of the mHealth tool by caregivers in a real-world setting, c) impact of the mHealth tool on caregiver outcomes, and d) effect on healthcare utilization of the child with cancer. Following this work, I will be well positioned to apply for R01 funding to conduct a larger-scale randomized controlled trial that further evaluates the impact of the caregiver focused mHealth tool on caregiver outcomes, as well as patient outcomes including clinical outcomes, quality of life, and healthcare utilization.
Caregivers play a significant role in coordinating and navigating the healthcare needs of children with cancer, but many feel unprepared and experience stress related to their caregiving roles. In this proposal, we will work directly with caregivers to design, create, and refine a mobile health (mHealth) tool to support them in the medical management of their child with cancer. The caregiver-focused mHealth tool has the potential to increase feelings of self-efficacy, build a greater sense of mastery and control over caregiver demands, and decrease stress, which may ultimately lead to improvements in both patient-centered and clinical outcomes among children with cancer.
