OUR FAMILY, OUR WAY: IMPACT OF A STRUCTURED GUIDE ON FAMILY CAREGIVING COMMUNICATION BARRIERS

Abstract

The ability of many older adults to remain at home with care needs is especially dependent on a “primary” family caregiver; other family members are often underutilized or marginalized. Inequitable care arrangements are one consequence of poor communication, including perceptual incongruence about what is needed, wanted and possible; and implicit and exclusionary decision making. In a study funded by the Retirement Research Foundation, we developed and tested a family communication and care coordination guide for aging parents and their adult children, designed to address these communication challenges. In a self-guided, highly structured process, family members complete individual tools prior to a family meeting where tools are exchanged, a shared assessment is conducted, and a family care plan is established. Nine families (each including a parent with care needs, one primary filial or spousal caregiver, and at least one secondary filial or spousal caregiver) (n=36) participated in the intervention. Individual interviews, including scales and open-ended questions, were conducted pre-and post-intervention; completed tools and guides were also analyzed. We found that: the process for inclusive and explicit decision making can work; the independent completion of individual tools and their exchange in the family meeting facilitated the recognition/reconciliation of perceptual incongruence; and families were able to negotiate a shared assessment and either affirm or make changes in their care arrangement. Finally, when changes were made, they were generally more equitable. The study has implications for applications to different family compositions, to professionals supporting caregiving families, and to further studies of family communication processes.