Reciprocal Suffering: Caregiver Concerns During Hospice Care Page: 2

                                
Wittenberg-Lyles et al.

Ithe phone (2,3). Ensuring pain control becomes an important task that impacts the quality of
life for both the patient and their informal caregiver (4). If the caregiver fails, the patient
suffers (5). The reciprocity of this role is influenced by perceived patient suffering (6) and
Establishes informal caregivers as "second order patients" with their own care needs (7). The
goal of this study is to understand reciprocal suffering that emerges during hospice
caregiving.
For both the hospice patient and informal caregiver, there is the intrapersonal concern of
coping with the suffering of self, and the interpersonal concern of coping with the suffering
of the other during hospice care (8). Based on the concept of total patient pain as articulated
by Dame Cicely Saunders, the founder of the modern hospice movement (9), reciprocal
suffering is the combined physical, social, spiritual, and psychological distress among
informal caregivers of hospice patients. The rewards of caring for a terminally ill relative
can simultaneously produce profound psychological effects, increase anxiety and
Depression, cause deterioration in other relationships, and suppress professional roles and
involvement in personally-fulfilling and healthy activities (10,11). Anxiety, fear, and the
search for meaning can be distinct from pain and represent the suffering that can accompany
a shared illness experience with a terminal patient (12).
Prior research has established that caregiver burden and patient symptom distress are related
(5). The more demanding the caregiver's responsibilities, the greater the amount of
Z                           emotional stress and suffering the caregiver experiences (13). The caregiver's ability to
I                           effectively relieve symptoms with pharmacological interventions requires the successful use
of skills related to teamwork, organization, symptom knowledge, medication knowledge,
and personhood (understanding and responding to the patient's needs) (2). Anxiety often
cr                        results for informal caregivers who struggle with these skills and who observe their loved
ones suffering from physical pain (4). In one study of hospice caregivers, 80% had
witnessed the patient in severe pain and 30% had mistakenly thought the patient had died
(14).
While the reciprocal nature of the patient-caregiver role is evident, the majority of hospice
Caregiver research has been unidimensional, focusing on issues isolated with the caregiver
and neglecting the transactional influence of the patient. Although hospice patients are
comprehensively assessed for physical, spiritual, emotional, and psychological pain, little is
known about how caregivers are reciprocally impacted. The goal of this study was to capture
reciprocal suffering that emerges during the caregiving role. Specifically, this study sought
to explore: 1) What types of concerns do hospice caregivers identify? and 2) In what ways
are hospice caregivers' concerns reflected in discussions of the caregiving experience?
Methods
T"                         This paper draws from a larger pilot equivalency clinical trial funded by the National
Institute of Nursing Research (R21 NR010744-01). The larger project aims to demonstrate
the feasibility of delivering a problem-solving intervention framework called ADAPT
(Attitude, Define, Alternatives, Predict, Try) via videophone technology and comparing this
--                          delivery to face-to-face delivery of the same intervention (15-17). The intervention is
designed to help caregivers be effective in solving problems pertaining to the caregiving
Experience by 1) creatively dealing with obstacles, 2) optimistically and realistically
involving their patients in the process, 3) developing a plan, and 4) making use of expert
information. Hospice patients and their caregivers were randomly assigned to receive the
problem-solving intervention either face-to-face (intervention group 1) or via videophone
(intervention group 2). The project presented here explores audiotaped discussions of the
-                    problem-solving intervention between hospice caregivers and research social workers in

JPain Symptom Manage. Author manuscript; available in PMC 2012 February 1.

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