US Research Advisory Committee member, Alice Hildebrand, M.Div, BCC, shares her perspective as someone who has worked with stroke patients and their families over the years. She recently spoke with the SETPOINT2 communications team.
What is your work experience?
I am a Protestant minister and Board Certified Chaplain. I have worked with stroke patients in large acute care hospitals and in home-based hospice and palliative care, as well as in the parish. In hospital settings, I work as part of the medical team with patients and family members (in some cases soon to be caregivers) experiencing the acute phase of stroke.
In the parish, I am with stroke survivors and their caregivers for the long haul of recovery. I facilitate caregiver support groups emphasizing how to take of oneself day by day and how to get a break from the isolation and the loneliness that can accompany caregiving.
What has been your experience or role in supporting stroke patients and their caregivers?
I have worked with patients and families in a wide variety of circumstances – the parents of an infant who had a stroke after surgery and made a full recovery over many months; the parents of a teen who had a hemorrhagic stroke while asleep who would not recover; the family of a middle-aged father, who was unresponsive for weeks and then finally could speak to his wife and son; and many older folks with a variety of stroke experiences.
Sometimes there are explicitly religious things folks want from the chaplain – even for non-religious people, prayer is often important, especially in the Emergency Room, the Intensive Care Units, the waiting rooms outside the surgical suites. But most importantly, for the spiritual care provider, while there isn't always something
, there is always something
to be –
a calm presence, a friend, a listening ear, an authenticator of the experience of anguish, and of joy and gratitude, and a partner.
I often help families sort out what they feel the patient would want the medical team to do, or not do, and help them craft the language in which to ask their questions of their doctors. I participate in everything from family meetings, where the chaplain might be the only one not in scrubs or a white coat and therefore, less intimidating for families; to chance conversations with staff members about their own distress at how things are going for a patient. I assess psycho-social/spiritual needs of a patient and share that information with staff; visit frequently when support is needed; work closely with hospital interpreters to understand and convey the needs of patients and families from different cultures; and conduct debriefings when staff is undergoing extra stress from challenging situations.
How did you decide to become a SETPOINT2 Research Advisory Committee (RAC) member?
I was grateful for the invitation from Dr. David Seder, with whom I worked in the ICU areas of Maine Medical Center. I share his vision of the needs of patients and families for comprehensive care which includes attention to spiritual distress and coping. And, I am interested in research as a means of improving patients’ overall well-being.