Family members who care for terminally ill patients at home can be helped by nurses throughout the course of the illness and particularly after the patient’s death, according to Penn State nursing researchers.
The death of a loved one can be particularly hard for those who were involved in the day-to-day care of the person. This transition can be eased by existing support from nurses and other medical professionals.
“What we know is that the caregiver’s primary contact with the health care system is during brief office visits [for the patient],” said Janice L. Penrod, professor of nursing and director of the Center for Nursing Research. “Our goal is to develop an assessment that is fast and efficient to give us a snapshot of that caregiver so that we can at least identify needs, and if not intervene during that brief office visit, give them information and a referral to help them smooth the course.”
Penrod and colleagues compared their own theory of caregiving through the end of life to a theory specifically about bereavement by G. A. Bonnano, a clinical psychologist and pioneer in the field of bereavement. That theory suggests grief oscillates, and eventually the grieving caregiver will “return to a state of equilibrium.”
Penrod breaks her theory into four stages — sensing disruption, challenging normal, building a new normal and reinventing normal. The comparisons focus on the last stage, “reinventing normal,” which is traditionally known as the bereavement period.
The process of restructuring their lives after their loved one has died is a cyclical one for the caregivers, the researchers theorize. They believe that support from nurses is important to help the family caregiver grieve.
By comparing these two theories, Penrod and colleagues found significant conceptual similarities, which helps validate both theories. The researchers reported their results to attendees at the Council for the Advancement of Nursing 2012 State of the Science Congress in Washington, D.C.
“In order to intervene, we have to have a theoretical base,” said Penrod. “And understand the red flags and the cues to understand when a caregiver is approaching a state of distress so that we can intervene in a timely fashion.”
Penrod and her colleagues interviewed 14 caregivers after the death of the family member they were caring for about how each was coping with the loss. They found that caregivers fit well into both theories. This fit was much better than the traditional five stages of grief — denial, anger, bargaining, depression and acceptance. Coping with the death of a loved one isn’t something moved through step by step, but instead in a way similar to riding a roller coaster — some moments better than others, some much worse.
This comparison has verified the assertions the researchers have made, encouraging them to move forward in exploring ways for nurses to help and support family caregivers.
” We need to understand the phenomenon well, before we can intervene to change the course of someone’s life,” said Penrod. ” This is the groundwork for understanding how caregiving proceeds over a trajectory of time so that we can better intervene to support caregivers across that trajectory.”
Also working on this research were Brenda L. Baney, assistant director of the Center for Nursing Research, and Gwen E. McGhan, graduate student, nursing.
The research was supported through the National Institute of Nursing Research.