A research-based article on fostering hope in caregivers
Caregivers shoulder physical, financial, emotional, and spiritual issues that for most would be back-breaking. How many of us in hospice chaplaincy haven’t witnessed the exhaustion of the caregiver of an AD/dementia patient? or of the Parkinson patient? or ALS patient? That is not to exclude the stress and mental, emotional, and spiritual exhaustion caregivers of COPD, cardiac, or cancer patient’s experience.
It is in the purview of the Chaplain to foster hope in the caregiver. How? “Previous research conducted by Benzein and Berg [Benzein E, Berg A. The level of and relation between hope, hopelessness and fatigue in patients and family members in palliative care. Palliative Med. 2005;19(3):234–240.] noted that family members of patients in palliative care had significantly lower hope than the patients, indicating that the family members' suffering may be greater than the patients. One reason for the lower level of hope noted by Benzein and Berg was that the needs of family members of patients in palliative care were insufficiently met, especially in regard to information and communication from healthcare professionals. Caregivers in the study by Perreault et al [Perreault A, Fothergill-Bourbonnais F, Fiset V. The experience of family members caring for a dying loved one. Int J Palliat Nurs. 2004;10(3):133–143.] also identified the lack of support from healthcare professional as a factor that negatively affected their caregiving experience. Thus, it was postulated that encouragement and support offered by healthcare professionals can provide family caregivers with the strength, confidence, and comfort necessary to participate in the caregiving process, which can ultimately foster hope and lead to a positive experience for both the family caregivers and their loved one.[Benzein and Berg] Similar findings were noted by family caregivers in the current study, indicating that physical support, informational support, and reassurance offered by healthcare professionals and other supportive individuals were necessary to maintain hope during the caregiving experience.” [The Lived Experience of Hope in Family Caregivers Caring for a Terminally Ill Loved One, Sara S. Revier, RN, ACNS-BC, Sonja J. Meiers, PhD, RN, Kaye A. Herth, PhD, RN, FAAN,Journal of Hospice and Palliative Nursing. 2012;14(6):438-446.] (emphasis mine)
Each Chaplain will have to decide how this information informs their approach to spiritual care, but there are several huge targets at which to aim one’s care: informational support, encouragement, and reassurance. While it seems that these three arenas of support require a good bit of talking, they also require a good bit of listening. I can recall listening to the exhausted pleas for help of the daughter of one of the dementia patients as she was at the end of her patience and emotional strength after what seemed to be several sleepless nights. She needed to be heard more than she needed to be talked to. I did, however, give the nurse a call to explain some of the issues she was having with her mother and have her provide education on those matters. The daughter just needed to talk it out. For this woman, prayer inspired new hope even in her most exhausted moments. It provided a sacred break in her world.
I am convinced that hospice Chaplains have the background in pastoral care to provide for the needs of caregivers. Thank you for all you do in your work!