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A Survey of Family Members' Satisfaction with the Services Provided by Hospice Palliative Care Volunteers Stephen Claxton-Oldfield, Natasha Gosselin Mount Allison University Kirsten Schmidt-Chamberlain Durham Hospice and Jane Claxton-Oldfield Tantramar Hospice Palliative Care Organization Inc.

Stephen Claxton-Oldfield, PhD, is an Associate Professor of Psychology at Mount Allison University, Sackville, New Brunswick, Canada Natasha Gosselin, BA, graduated from Mount Allison University, Sackville, New Brunswick, Canada Kirsten Schmidt-Chamberlain, MA, is the Executive Director of Durham Hospice, Whitby, Ontario, Canada Jane Claxton-Oldfield, MDN, is a member of the Tantramar Hospice Palliative Care Organization Inc., Sackville, New Brunswick, Canada

Requests for reprints should be sent to Stephen Claxton-Oldfield, Mount Allison University, Psychology Department, 49A York Street, Sackville, New Brunswick, Canada E4L 1C7 or by email ([email protected])

2 Abstract Twenty-two family members, whose deceased loved ones had used the services of a hospice palliative care volunteer, responded to a brief survey designed to assess the importance of the different kinds of support offered to them (family members) by the volunteer, their impressions of the volunteers' personal qualities/characteristics, their general experiences with the volunteer, and their overall satisfaction with the volunteer services. The kind of support that received the highest importance rating from family members was the opportunity to take a much-needed break from the demands of caring for their loved one, closely followed by emotional support, the volunteer spending time with them, and the volunteer providing them with information. Family members rated volunteers highly on a list of qualities/characteristics that exemplify individuals who are effective in this role. Eighty-five percent of the family members felt that their volunteer was well trained and 95% did not feel that their or their loved one's privacy had been invaded by having a volunteer. Overall, family members were very satisfied with the volunteer support they received. Some limitations of the study are discussed.

Keywords: hospice palliative care, volunteers, family members, satisfaction

3 A Survey of Family Members' Satisfaction with the Services Provided by Hospice Palliative Care Volunteers A number of instruments have been developed to measure family members' satisfaction with the quality of care received by their dying loved ones, for example, the FAMCARE scale,1 the Satisfaction Scale for Family Members Receiving Inpatient Palliative Care (Sat-Fam-IPC),2 the Family Evaluation of Hospice Care survey (FEHC),3 and the Toolkit of Instruments to Measure End-of-Life Care (TIME),4 just to name a few (see Mayland, Williams, and Ellershaw5 for a review of instruments designed to evaluate care for dying patients). On these instruments (scales/interview protocols), family members typically respond to a combination of open-ended, restricted, yes/no, and/or rating-scale questions measuring their satisfaction with the quality of end-of-life care provided by doctors (e.g., "availability of the doctor to the patient"), nurses (e.g., "the nursing staff was easy to talk to"), the "hospice team" in general (e.g., "Did the hospice team explain the plan of care to you in a way that you could understand?"), the facility (e.g., "The patient's room was functionally convenient"), overall satisfaction with the patient care received, and so on. Questions specifically addressing family members' satisfaction with the volunteer care they and their loved one may have received are conspicuously absent from these scales. The role of the volunteer in hospice palliative care is well documented.6,7 Carefully selected and trained volunteers provide emotional, social, informational, spiritual (if this is what the patient/family wants), and practical support to patients/family members who are living with or dying from a life-limiting illness. The actual tasks that volunteers perform vary depending on the individual needs of the patient and the

4 patient's family, as well as on the setting (e.g., home versus hospital) in which care is being provided. When care is provided in the patient's own home, volunteers may also help with transportation needs (e.g., drive patients to medical appointments), help the patient in and out of bed, help with feeding, run errands for the patient/family (e.g., pick up medications), and so on. The value of the companionship, supportive emotional and compassionate care, and practical assistance that volunteers provide to patients and their family members is worthy of study. Indeed, the lack of studies examining family members' satisfaction with the volunteer component of hospice palliative care sends the message that volunteers are not important members of the interdisciplinary care team and that the different kinds of patient/family support they provide are not valued (or worth assessing) even though, in many cases, the volunteer spends more time interacting with the patient and his/her family than does any other member of the formal caregiving team (e.g., doctor, nurses). The authors are aware of only two published studies that have looked at the experiences of bereaved family members with hospice palliative care volunteer support.8,9 Luijkx and Schols (2009) examined the impact of volunteer support, as seen through the eyes of family caregivers, using a combination of focus groups, survey, individual interviews, and an internet panel. The survey used in this study consisted of 75 questions focusing "on the situation in which palliative care was given, the nature of the volunteer support provided, and family caregivers' evaluation of this support" (p. 33). The results of the satisfaction survey revealed that, overall, family caregivers were very satisfied with the support provided by volunteers, giving it a mean satisfaction rating of 8.7 on a 10-point scale. More than half of the 233 respondents had a volunteer(s) for two

5 weeks or less. In terms of what the volunteers did, items related to "being there" (e.g., giving time and attention to the patient and family members, keeping watch at night) were checked most frequently. Volunteer support was provided mainly on weekday afternoons or at night and each patient had, on average, four volunteers. The volunteers were particularly appreciated for the emotional and practical support they provided. The data showed that having a "closing contact at the end of volunteer support is important because it significantly increases client's satisfaction levels" (p. 35), however, for onethird of the families surveyed, their period of volunteer support concluded without a closing contact with the volunteer and/or the volunteer coordinator. Given the strength of the emotional bond that is often formed between patients/family members and volunteers, having some sort of contact with family members after their loved one's death (e.g., attending a memorial or funeral service, making a phone call to say, "How are you doing?") not only contributes to the client's satisfaction, but also to the volunteer's satisfaction. In another study, Weeks, MacQuarrie, and Bryanton9 examined the impact of having a hospice palliative care volunteer on ten women who had used the services of volunteers while caring for their terminally ill spouses. The results of the face-to-face interviews showed that "all of the women in this study had overwhelmingly positive experiences with hospice palliative care volunteers" (p. 88). Some of the specific ways in which having a volunteer was helpful to these women included the provision of emotional support, respite care, being available when needed, acting as a go-between (e.g., between husband and wife, between the couple and medical staff), and offering

6 expertise through experience (e.g, many of the volunteers had previous experience with death and dying). Recognizing the value of the hospice palliative care volunteers to patients and their family members, the goal of the present study was: 1) to develop a brief survey to measure family members' satisfaction with the services provided by their dying loved ones' volunteer, with a particular focus on how the volunteers helped and supported them (family members) and; 2) administer the questionnaire to family members of patients who had used the services of a volunteer.

Method Participants The participants were 22 family members of deceased patients who had used the services of a hospice palliative care volunteer during the last phase of life. Family members were not contacted or asked to participate until at least 6 months after their loved one had died. The average age of the participants was 63.9 years (SD = 11.4). Seventeen (77.3%) of the participants were female and five (22.7%) were male. Most of the respondents (12, 54.5%) were the spouse of their loved one, seven (31.8%) were the adult children of their loved one, one (4.5%) was a parent, one (4.5%) was a partner, and one (4.5%) was another relative. Eleven of the deceased loved ones were male, and 12 were female (one participant cared for both of her dying parents). The length of time since the death of the participants' loved one ranged from 7 to 24 months (M = 13.9 months, SD = 5.9). The amount of time the family had a volunteer prior to the death of their loved one ranged from only one visit to two years (M = 15.6 weeks, SD = 26.54).

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Materials The "Family Caregivers' Evaluation of Hospice Palliative Care Volunteer Services" survey was developed for this study. It contained four sections. Section A asked participants to provide some background information about themselves (e.g., their age, gender, relationship to loved one) as well as about their loved ones (e.g., gender of their loved one, how long ago s/he died, the length of time they had a volunteer). Section B asked participants to rate the importance of five different kinds of support and help they may have received from their loved one's volunteer (e.g., "The volunteer allowing you to take needed breaks", "The volunteer offering emotional support to you"). Participants were asked to rate the importance of each kind of support using a 5-point scale (1 = "not at all important", 5 = "very important") or indicate "not applicable." In addition, participants were asked to list any other ways in which the volunteer was helpful to them. Section C asked participants to rate their impressions of their loved one's volunteer with respect to 12 personal qualities/characteristics (e.g. good listener, respectful, non-judgmental), using a 5-point scale (1= "poor", 5 = "excellent"). The qualities/characteristics chosen for this study included those mentioned most often by volunteer coordinators when asked to comment on what makes a good volunteer.10,11 Section D contained some general questions about the participants' experiences with the volunteer (e.g. "Did you feel that you or your loved one's privacy was invaded

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by the volunteer?" "Did you feel that the volunteer was well trained?"), as well as two open-ended questions - "What was the most helpful thing the volunteer did for you and your loved one?" and "Is there anything you wished the volunteer had done or said for you or your loved one?" Finally, participants were asked to rate their overall satisfaction with the quality of support and care provided by their volunteer, using a 10-point scale (1 = "not at all satisfied" and 10 = "extremely satisfied"). Procedure The Executive Director of a hospice program in southern Ontario mailed copies of the "Family Caregivers' Evaluation of Hospice Palliative Care Volunteer Services" survey to family members of deceased loved ones who had used their volunteer services. Surveys were sent to families if their loved ones had died more than 6 months ago and less than two years ago. A total of 150 packages were mailed out. Each package contained the survey, cover letters from the first two authors and the Executive Director of the hospice program, and a prepaid postage envelope addressed to the first two authors. Eleven of the families had since moved and their packages were returned to the hospice program. Of the 139 families who received the package, 22 returned their survey, for a response rate of 16%. A typical response rate for mail surveys is between 10% and 20%.12 Results

9 Table 1 shows the mean importance ratings and standard deviations for the five kinds of support and help family members may have received from their volunteers.

/Insert Table 1 about here/

The mean importance ratings for each kind of volunteer support and help are above the midpoint of the scale, suggesting that all types of support were very important to family members. Allowing breaks received the highest mean importance rating (M = 4.6), while helping deal with grief after a loved one's death received the lowest mean importance rating (M = 3.8). Fourteen (64%) of the family members indicated that their volunteer had been helpful to them in others ways. For example, one family member mentioned that the volunteer attended a "memorial service with me, which I appreciated ..." A couple of family members mentioned how it was nice to be able to leave the house to "go shopping" while a couple of others mentioned how they had "great peace of mind" leaving their loved ones in the volunteer's care. Two family members mentioned how the volunteer had been helpful to them after their loved one's death. Many of the other responses were more idiosyncratic, for example, "Since she [the volunteer] was a nurse, she was able to share her knowledge of some of the medical expectations ...", the volunteer helped make their loved one comfortable in bed "avoiding bed sores by rolling to one side or another", and "The fact that she [the volunteer] was Christian helped immensely as we shared the same morals, values, etc."

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Table 2 shows the means and standard deviations of the family members' impressions of the personal qualities/characteristics of their volunteer. /Insert Table 2 about here/ The high ratings on the personal qualities/characteristics listed in Table 2 suggest that family members had an overwhelmingly positive impression of the volunteers. Half (11) of the family members mentioned additional qualities/characteristics, including "Most caring person I've ever met", "very nice lady whom I felt comfortable with", "extremely helpful", and "everything I could hope for." The family members' comments about their volunteers were mostly positive. Only one family member's comments could be construed as negative; she mentioned that the volunteer was nice, but talked about things that her loved one really could not relate to. Table 3 consists of responses to questions about some of the general experiences the family members may have had with their volunteer.

/Insert Table 3 about here/

The family members' general experiences with their volunteer were mostly positive. For example, 85% of the family members felt that their volunteer was well-trained, 70% felt a personal connection with their volunteer, and 95% would recommend the services of a volunteer to others based on their experience. Only one family member (5%) felt that their or their loved one's privacy had been invaded by the volunteer. Twenty (91%) of the 22 family members responded to the question, "What was the most helpful thing(s) the volunteer did for you and your loved one." Many indicated

11 that just having the volunteer be there was helpful to them (e.g., "they were present to the patient and family, "just being there for us both throughout this illness and giving support", "just being there, she was an angel"). Other family members talked about how their volunteer made their loved one comfortable, for example, "They made him very comfortable ... he was taken care of when they were here", "... my mom was very comfortable ...", and "Comfort for loved one." Some family members brought up respite care again (e.g., "aid us in taking breaks", "took a shift every Friday so my sister and I could have a break"). Some family members commented on how the volunteer had been helpful in little ways that held special meaning for them, for example, "Making tea for my husband and reading to him, talking to him, helping me to put my shopping away, brought me flowers", "Gave [my loved one] confidence and courage and serenity to accept the things she couldn't change and be at peace", "emotional support", "being calm and knowledgeable", and "Helped me to realize that although he no longer walks beside me he is now within me." One family member felt that the service was provided "too late" and another expressed a little disappointment that their volunteer did not let them know a couple of times that she was not going to visit their mother. Fourteen (64%) of the family members responded to the question, "Is there anything you wished the volunteer had done or said for you or your loved one?" Nine of these responses were simply "no", "nothing", "can't think of anything", "nothing more than what she did", etc. One family member indicated that she wished "this help was available for him sooner"; another wanted more help with feeding but realized that this might not be "part of their [the volunteer's] mandate, especially if there can be choking issues". Another family member, who had a volunteer for only one visit, felt that the

12 volunteer "did not honour the peacefulness [of their home] she shattered." Two family members acknowledged the importance of their loved one having a volunteer, but felt that it was not a relationship they needed (e.g., " ... some people need a volunteer. I seem to be able to cope by myself"). Overall, family members were very satisfied with the quality of support and care provided by their volunteer. The mean overall satisfaction score was 8.6 (SD = 2.7). Discussion According to the family members surveyed in this study, one of the most important types of support hospice palliative care volunteers provide is allowing them to take a much-needed break. Providing respite is an important part of the volunteer's role; it temporarily relieves family members from the daily stresses of caring for their dying loved ones. Having a volunteer visit with the patient for part of the day (e.g., a few hours) enables the family member to go shopping, take a walk, sit in the sun, etc. When asked specifically about the most helpful thing(s) the volunteer did for them and their loved one, some family members mentioned the importance of respite again ­ being able to go out and know their loved one was with a very caring person gave them great comfort. Having the volunteer offer them emotional support, provide them with information (e.g., on what to expect with their loved one's condition), and spend some time with them was also highly valued by family members. Again, providing emotional, informational, and social support to patients and their families is an important part of what volunteers do. Having the volunteer help them deal with their grief after the death of their loved one received the lowest importance rating (3.8) of the five items in Section B, although it was still above the midpoint of the 5-point scale. Perhaps, the grief support family members

13 may have received from family and friends was more important to them, although one family member mentioned how her volunteer helped with her grieving by encouraging her to keep on talking about her loved one. Family members rated their volunteers very highly on all of the personal qualities/characteristics listed in Section C. Indeed, the lowest mean score on any characteristic was 4.5 out of 5. These qualities/characteristic (e.g., good listener, compassionate and caring, respectful, empathic) are ones that appear to make individuals particularly well-suited to the role of hospice palliative care volunteer. The results of this survey suggest that family members are very appreciative of individuals with this constellation of qualities/characteristics and that these are qualities/characteristics that volunteer coordinators should be looking for in prospective volunteers. Previous research exploring people's reasons for accepting or declining the services of a hospice palliative care volunteer13 found that some participants who declined the services were concerned that a volunteer would not have enough training and/or that the volunteer would violate their privacy (e.g., know their personal business). However, in the present study, 85% of the family members surveyed felt that their volunteer was well trained and 95% did not feel that their or their loved one's privacy had been invaded by the volunteer. In addition, seventy percent of the family members felt a personal connection with their volunteer and 60% of the family members had contact with their volunteer after their loved one's death. In the Luijkx and Schols8 study, only 46% of the family caregivers surveyed had a closing contact that involved the volunteer (either alone or with the volunteer coordinator). The current study's survey did not ask family members if they had a closing contact with the volunteer coordinator.

14 Overall, the family members who completed this survey were very satisfied with the support and care provided by their volunteer. On a scale from 0 to 10, with 10 being "extremely satisfied", the quality of support and care provided by volunteers was rated 8.6. Ninety-five percent of the family members surveyed indicated that they would recommend the volunteer service to family and friends, which is another good way to promote the volunteer program. These results are very similar to those obtained by Luijkx and Schols;8 they reported a mean satisfaction rating of 8.7 (with 10 being "perfect"), with 87% of their family caregiver respondents recommending volunteer support to others. In the present study, when asked if there was anything they wished the volunteer had said or done for them and their loved ones, nine of the 14 family members who responded to this question could not think of anything or simply said "nothing more." Interestingly, a couple of family members mentioned that the volunteer was good for their loved one and a big help, but felt that they personally did not connect with the volunteer or had a better relationship with another member of the care team (e.g., social worker). The majority of the family members' responses to the open-ended questions suggest that the volunteer was a wonderful support during a difficult period in their lives. One of the main advantages of the survey designed for this study is that it is short (i.e., 34 questions in total) and easy to administer. Most of the questions are answered by circling a number on a rating scale, allowing it to be completed in five to ten minutes. Administering a satisfaction survey to family members after the death of their loved one is something that all volunteer coordinators might consider doing (if they are not doing this already) to ensure that their services meet the program's standards. A confidential evaluation of the quality of support and care provided by the volunteer can inform the

15 coordinators about what family members liked most and least about the program, allowing them to continually improve the services they offer. A major limitation of this study is the low response rate (16%) and the resulting small sample size. With only 22 family members responding to our survey, the results may not generalize to family members who used the services of a volunteer from a different program (especially an in-patient program, where the kinds of support needed may be different). Furthermore, because of the possibility of nonresponse bias, those individuals who completed and returned the survey may not be representative of all the family members who received the survey. There are essentially six main "categories" of support that volunteers provide emotional, social, informational, practical (including respite), spiritual/religious, informational, and grief and bereavement. In addition to the open-ended question about other way(s) in which the volunteer was helpful to the family member, Section B should contain at least one question addressing each of these broad categories of support. In the present study, for example, there was no question about the importance of spiritual/religious support. However, one family member mentioned that "the fact that she [the volunteer] was Christian helped immensely" and there was no question addressing the importance of other types of practical support (e.g., running errands, providing drives). Furthermore, in Section C of the survey, rather than provide family members with a checklist of volunteer qualities/characteristics, respondents could simply be asked to write down (using the free response method) the qualities/characteristics they would use to describe their volunteer. This survey also did not address the issue of the number of volunteers involved in the care given to a single dying patient. In addition to

16 asking for how long a patient had a volunteer, Section A should also include a question about the number of volunteers the patient had. Future users of the "Family Caregivers' Evaluation of Hospice Palliative Care Volunteer Services" survey (e.g., coordinators of community- and hospital-based hospice palliative care volunteer programs) will likely want to modify the survey to best suit their own program (e.g., coordinators of hospitalbased programs might want to include a question(s) about the palliative care unit). Finally, the volunteer coordinator or volunteer could be the one to give the survey to family members as part of a closing contact, say, six months after the death of their loved one.

17 References

1.

Kristjanson LJ. (1993). Validity and reliability testing of the FAMCARE Scale: Measuring family satisfaction with advanced cancer care. Soc Sci Med. 1993;36(5):693-701.

2.

Morita T, Chihara S, Kashiwagi T. A scale to measure satisfaction of bereaved family receiving inpatient palliative care. Palliat Med. 2002:16(2):141150.

3.

Connor SR, Teno J, Spence C, Smith, N. Family Evaluation of Hospice Care: Results from voluntary submission of data via website. J Pain Symptom Manage. 2005;30(1):9-17.

4.

Teno JM, Casey VA, Welch LC, Edgman-Levitan PA. Patient-focused, familycentred end-of-life medical care: Views of the guidelines and bereaved family members. J Pain Symptom Manage. 2001;22(3):738-751.

5.

Mayland CR, Williams EMI, Ellershaw JE. How well do current instruments using bereaved relatives' views evaluate care for dying patients? Palliat Med. 2008;22(2):133-144.

6.

Downe-Wamboldt B, Ellerton M. A study of the role of hospice volunteers. Hosp J. 1986;1(4):17-31.

7.

Ellerton M, Downe-Wamboldt B. The concerns of hospice patients and the role of hospice volunteers. J Palliat Care. 1987;3(1):16-22.

8.

Luijkx KG, Schols JMGA. Volunteers in palliative care make a difference. J Palliat Care. 2009;25(1):30-39.

18 9. Weeks LE, MacQuarrie C, Bryanton O. Hospice palliative care volunteers: A unique link. J Palliat Care. 2008;24(2):85-93. 10. Claxton-Oldfield, S, Claxton-Oldfield J. What coordinators of palliative care volunteers in New Brunswick, Canada have to say about their programs, themselves, and their program management practices. J Volunt Adm. 2005;23(3):3035. 11. Patchner MA, Finn MB. Volunteers: The life-line of hospice. Omega. 1987;18(2):135-144. 12. Gravetter FJ, Forzano LB. Research methods for the behavioral sciences (third edition). Belmont, CA: Wadsworth Cengage Learning; 2009. 13. Claxton-Oldfield S, Gosselin N, Claxton-Oldfield J. Imagine you are dying: Would you be interested in having a hospice palliative care volunteer? Am J Hosp Palliat Med .2009;26(1):47-51.

19 Mean Importance Ratings and Standard Deviations for the Different Kinds of Support and Help Family Members may have Received from their Volunteer ________________________________________________________________________ Type of Support and Help M SD N ________________________________________________________________________ Spending some time with you Offering emotional support to you Allowing you to take needed breaks Providing you with information (e.g., about what to expect, how to cope) 4.00 4.30 1.45 1.17 20 20 Table 1.

4.57

1.03

21

4.05

1.47

21

Helping you deal with your grief after your loved one's death 3.75 1.48 20 ________________________________________________________________________ Note. Higher scores indicate greater importance.

20 Table 2. Means and Standard Deviations of the Family Members' Impressions of the Personal Qualities/Characteristics of their Volunteer

________________________________________________________________________ Characteristic M SD ________________________________________________________________________ Good listener Compassionate and caring Respectful Nonjudgemental/open-minded/tolerant Empathic/warm Reliable/dependable/trustworthy Sense of humour/able to have fun Comfortable just being being there spending time with my loved One Good communication skills Not frightened by advanced illness or death/at ease with death and dying Respect for confidentiality Calm 4.80 4.95 4.95 4.90 4.90 4.85 4.55 0.52 0.22 0.22 0.31 0.31 0.67 0.94

4.90 4.79

0.45 0.71

4.94 4.95 4.79

0.24 0.23 0.54

Note. Higher scores indicate more favorable impressions.

21 Table 3. Family Members' General Experiences with their Volunteer ________________________________________________________________________ Experience Yes No NA ________________________________________________________________________ Your or your loved one's privacy was invaded? Volunteer was well trained? Personal connection with your volunteer? Volunteer attend your loved one's memorial service/funeral? Contact with volunteer after the death of your loved one?

1 (5%) 17 (85%) 14 (70%)

19 (95%) 3 (15%) 6 (30%)

8 (40%)

10 (50%)

3 (10%)

12 (60%)

8 (40%)

Would you recommend the volunteer service to a family member or friend based on your experience? 20 (95%) 1 (5%) ________________________________________________________________________ Note. Valid percentages are reported

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