Developing and translating a theory of informal caregiving in Sporadic Creutzfeldt-Jakob disease: a two-phase constructivist grounded theory study.

Introduction: Sporadic Creutzfeldt-Jakob disease (sCJD) is distinct from related dementias in several key ways, influencing the informal caregiving experience. Caregiver burden is widely acknowledged as a public health concern, and the lack of sCJD-specific informal caregiving research leads to difficulties providing targeted resources to this population. Objectives: No foundational theory exists to describe the experience of informal caregiving in sCJD, which could inform decisions regarding study design and the provision of support resources to this population. This paper describes the methods used to develop a theory describing sCJD informal caregiving, translating this theory to relevant clinicians, identifying gaps in clinician knowledge of sCJD informal caregiving, opportunities for use in clinical practice, and potential barriers to knowledge translation and action. Methods: The theory of sCJD informal caregiving is developed using constructivist grounded theory methodology. Interviews and demographic surveys collect caregiver data. Interviews collect clinical participant data. The Knowledge-to-Action Framework guides both translation of the theory to clinical stakeholders, and clinical perspectives into future translation and action efforts. Discussion: Significant strides in pre-mortem testing and drug therapy research suggest a shift toward a prolonged period of caregiving with a known diagnosis, which may shift the roles of clinicians and informal caregivers alike. This research can support both an increased understanding of sCJD caregiving and the translation of such knowledge to appropriate stakeholders. The methodology described in this paper can be applied to understand informal caregiving in other rare diseases, including other forms of prion disease.