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caregiving, communication, couples, Parkinson disease, partners, psychosocial issues, spouses



  1. Martin, Summer Carnett


ABSTRACT: Although researchers have examined issues related to partners providing care for a person with Parkinson disease (PWP), few have explored partners' broader psychosocial experiences. To investigate this underexplored area, individual, in-depth interviews with 23 partners of PWPs were conducted. Participants reported significant psychosocial challenges, including having the PWP withdraw from communication, being unable to "rescue" the PWP, being the recipient of the PWP's frustration, expressing impatience with the PWP, shouldering increased responsibility, being confronted with possibly losing the PWP, losing valued activities, feeling housebound, being unable to predict the PWP's daily well-being, and experiencing uncertainty about future caregiving and disease progression. These results indicate that being the partner of a PWP involves serious, complex psychosocial challenges related to both caregiving and noncaregiving issues. This research highlights the need for a family-centered approach to Parkinson care and provides valuable insight that can inform interventions and nursing practice for this population.