Abstract
Often unskilled for the hospice caregiving role, family members who provide patient care at home need support to facilitate pain management. Volunteers who serve as members of the hospice team may be able to complement staff efforts to discuss pain with caregivers. A pilot project was developed to determine if volunteers could be trained to facilitate communication about pain with family caregivers. Two hospice volunteers were trained and three family caregivers received the intervention in their homes. Caregivers and volunteers were interviewed about the experience. Both caregivers and volunteers reported a rewarding and positive experience. Caregivers prioritized the need to talk with someone, and volunteers preferred working with caregivers instead of administrative support duties. Volunteers could be trained to deliver the intervention material, but information from volunteer visits was not immediately reported to hospice staff members. Future research should assess the benefits of using hospice volunteers to support clinical efforts.
Delivered by an interdisciplinary team of health care professionals, hospice care is provided to 1.56 million terminally ill Americans annually, with 2 of every 3 patients aged 65 years and older (National Hospice and Palliative Care Organization, 2010). With the nation’s aging population continuing to grow each year, it has been estimated that 6,000 to 18,000 individual physicians and more than double the population of nurses with graduate degrees are needed to fulfill the demand for hospice (Institute of Medicine, 2010; Lupu, 2010; U.S. Bureau of Labor Statistics, 2010). As the field prepares to face a workforce shortage over the next decade, hospice volunteers, mainly women over the age of 55, may be able to fulfill a supportive role to assist the clinical efforts of hospice staff members (Claxton-Oldfield & Banzen, 2010; Robert Wood Johnson Foundation, 2000).
Hospice volunteers are currently underused, and it would behoove the field to begin thinking of new ways to use volunteers more efficiently (Claxton-Oldfield & Claxton-Oldfield, 2008). For example, pain is frequently a problem in hospice care (Miaskowski, 2004), partly because of inadequate communication between providers, caregivers, and patients (Yabroff, Mandelblatt, & Ingham, 2004). Staff members note that the inability of family caregivers to provide pain management at home is a common barrier to pain management (Johnson, Kassner, Houser, & Kutner, 2005; Milliman USA Inc., 2001; Walker & McPherson, 2010). To explore options for supporting staff burden surrounding pain management, we conducted a pilot study to determine if hospice volunteers could facilitate communication about pain with family caregivers.
Methods
The study design was quasi-experimental posttest only. Participants were hospice caregivers and volunteers. Table 1 displays the study eligibility criteria.
Overview of Eligibility Criteria
Procedure
Caregivers and volunteers were presented with the research opportunity by hospice staff members. Contact information for those interested in learning more about the study, and who fulfilled eligibility criteria, was sent to the research coordinator. Caregivers were visited in the home, informed consent was obtained, and a meeting was scheduled for the caregiver and volunteer. Volunteers provided informed consent during their training session for the intervention. The supporting university’s institutional review board approved the study.
Intervention
A volunteer delivered two structured visits on the basis of the Passport to Comfort Key Teaching Points on pain assessment and management (Ferrell, 2005-2010). Volunteers generated a discussion about pain using a question-and-answer format. In contrast to a pain education intervention, which teaches how to practice pain management, the intervention taught caregivers to be aware of their perceptions of pain and how it influences management practices and encouraged caregivers to talk to clinicians and their patients (when possible) about pain, and the volunteer served as a caregiver advocate to the hospice team for caregiver barriers to pain management. To ensure volunteer fidelity to the intervention, all caregiver visits were audio-recorded, and the integrity of the intervention protocol was assessed for adherence to the protocol and inclusion of all required elements (Radziewicz et al., 2009). After each session, volunteers completed a visit report form to document the date, length of time, and any caregiver concerns related to complex pain management. At the conclusion of the study, caregivers and volunteers were interviewed about the experience. The research team used a constant comparative method to discern the benefits and disadvantages of the intervention.
Results
Table 2 provides an overview of demographics of the three caregivers who completed the intervention delivered by one of two trained hospice volunteers.
Summary Demographic Variables for Caregivers (n = 3)
Volunteer Feedback
Two volunteers participated in this study. Both were women, had hospice caregiving experience for parents, and had been hospice volunteers at the agency for at least 1 year. Both volunteers felt that the experience was beneficial to caregivers and a valuable volunteer experience. They liked having a chance to get out and meet caregivers in their homes. Both volunteers commented that they had “never dealt one on one with caregivers before,” as their volunteer assignments typically consisted of office work. One volunteer explained, “We volunteer because we remember. It’s always good to get in touch and go out to those homes where you feel you can make a difference.”
Caregiver Feedback
Caregivers reported that their involvement with the intervention and material was beneficial. They felt comfortable talking with volunteers, their ideas were respected, and they could ask questions. They reported that their overall personal knowledge, comfort, and understanding about pain management improved. All three caregivers reported that the biggest benefit of participation was the opportunity to talk with someone. One caregiver explained, “It gave me a chance to express how I felt about pain [medicines], and that helps. . . . It makes me feel better to talk sometimes, express how I feel.” Another caregiver reported that the experience made her realize that she doesn’t “have to feel guilty or scared about giving out medication.” Finally, another caregiver explained, “Personally, it’s been beneficial for me because I can talk about it without getting too emotional.”
The caregivers said that they would participate in the intervention again. Participation was considered beneficial because “the situation changes so much,” and one caregiver emphasized that this would be good for new caregivers: “Some people . . . it may be new to them and it might give them something to really think about. . . . I think it would be a good experience.”
Discussion
This pilot study found that hospice volunteers could be trained to talk with caregivers, and the selected pain assessment and management models of the Passport training were helpful for both the volunteers and the caregivers. Both caregivers and volunteers reported positive, rewarding experiences from participation in the study. Although previous research has found that hospice volunteers feel frustrated that they are not able to do more to help patients and families (Claxton-Oldfield & Claxton-Oldfield, 2008), volunteers in this study described feeling good about being able to work directly with caregivers. Caregivers also reported that they benefited from talking with volunteers, an unmet need that has been documented as a barrier to caregiver pain management (Bee, Barnes, & Luker, 2009). Overall, specialized attention by the volunteers contributed to caregivers’ satisfaction with the volunteers and suggests that structured volunteer visits are beneficial regardless of the need to discuss pain management.
A notable limitation to the study was the relationship between the volunteers and hospice staff members. Although volunteers are seen by hospice staff members as liaisons between staff members, patients, and family members, volunteers have limited opportunities to provide input on patient care (Claxton-Oldfield, Hastings, & Claxton-Oldfield, 2008). Visit report forms completed as part of the study protocol were never reviewed by the hospice team. As with all volunteer paperwork, the form was given to the volunteer coordinator, who represents the volunteers during patient care meetings. As is often the case, the volunteer coordinator did not routinely share information during team meetings. Future development of the intervention should include a distinct process for getting information to appropriate staff members and ensuring that immediate needs of caregivers are attended to in a timely fashion.
Still, the fact that volunteers were successfully trained to deliver the intervention is important. Volunteers were reliable and delivered content in a standardized manner. Volunteer training for a specialized intervention should be in depth, especially given that there is no national standardization of curriculum for hospice volunteers (Wittenberg-Lyles, Schneider, & Parker Oliver, 2010). A prior intervention project involving hospice volunteers included training that spanned 2 weeks, consisting of four evenings and one weekend (Scherwitz, Pullman, McHenry, Gao, & Ostaseski, 2006). The cost of training and volunteer retention rates should be taken into consideration, but the U.S. national average for volunteer commitment required by hospice agencies is 12 months at 4 hours per week (Scherwitz et al., 2006; Wittenberg-Lyles et al., 2010). Training caregivers to deliver a specific intervention may also improve retention rates of volunteers.
Although there is promise for the involvement of volunteers as support for hospice staff members, future research is needed to develop inclusion criteria for the intervention as well as the identification of specific populations that may be in greater need of volunteer visits. For example, eligibility screening should consist of a clinical assessment of the patient’s pain, the caregiver’s level of involvement in administering pain medication, and the date of hospice admission. Finally, it should be noted that the intervention involved having volunteers facilitate communication and is not meant to replace or substitute for actual clinical services. The goal is not to train volunteers to be clinicians but rather to become facilitators for more effective communication so that clinicians can take advantage of their availability and improve overall services. When introducing volunteer-based interventions, researchers need to pay attention to treatment fidelity to ensure that volunteers implement the protocol per their training and always defer to clinicians for the clinical needs of their clients. The family caregiver’s role in providing pain management in the home should be supported (Johnson et al., 2005); hospice volunteers are an underused resource who can be trained to discuss pain with family caregivers and supplement clinical time devoted to pain management.
Footnotes
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was funded by the Center for Interdisciplinary at the University of North Texas.