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American Journal of Hospice & Palliative Medicine. Volume 22, Number 2, March/April 2005. Palliative care volunteerism among college students in Canada.
Palliative care volunteerism among college students in Canada Stephen Claxton-Oldfield, PhD Jennifer Tomes, PhD Michelle Brennan Catherine Fawcett Jane Claxton-Oldfield

Abstract The goal of Study 1 was to investigate whether young Canadian adults were interested in becoming involved in palliative care volunteer work. After reading a brief description of what volunteering in a palliative care environment typically involves, participants (undergraduate students) were asked to indicate whether they would be interested in this kind of volunteer experience and to provide a written explanation of their answer. Stephen Claxton-Oldfield, PhD, Assistant Professor of Psychology, Mount Allison University, Sackville, New Brunswick, Canada. Jennifer Tomes, PhD, Assistant Professor of Psychology, Mount Allison University, Sackville, New Brunswick, Canada. Michelle Brennan, Mount Allison University, Sackville, New Brunswick, Canada. Catherine Fawcett, Fourth-year Bachelor of Science Honors Student (Psychology Major), Mount Allison University, Sackville, New Brunswick, Canada. Jane Claxton-Oldfield, Palliative Care Volunteer Coordinator, Victorian Order of Nurses, Sackville, New Brunswick, Canada.

Of the 105 participating students, only 39 (37.1 percent) expressed an interest in volunteering, while 66 (62.9 percent) were not interested. Not surprisingly, the results revealed that significantly more females than males were interested in palliative care volunteer work (45.9 percent and 25.0 percent, respectively). The most common reason students gave for wanting to become a palliative care volunteer was to help others; the reason given most often for not wanting to volunteer was that it would be too emotionally demanding. It is important to note that prior to taking part in this study the majority of the participating students (75.9 percent) did not know what palliative care was. The goal of Study 2 was to investigate undergraduate students’ interest in volunteering in a nursing home, in a classroom, and at a food bank. Of the 111 participating students, 74 (66.7 percent) expressed an interest in volunteering at a food bank and in a nursing home, and 89 (80.2 percent) were interested in becoming a classroom volunteer. Together, the results of Studies 1 and 2 support the view

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that young people in Canada (especially males) are not interested in becoming involved in the care of dying persons. However, the results also indicate that they are very interested in volunteering with other populations (e.g., the elderly, school children) and in other settings (e.g., food bank). Key words: palliative care, volunteerism, end of life, Canada

Introduction Palliative care is a healthcare movement that embraces the challenge of caring for individuals with a terminal illness and their families when curing their illness is no longer an option. In addition to addressing physical concerns such as pain and symptom management, palliative care is designed to meet the social, emotional, spiritual, and practical needs of individuals and families living with a life-threatening illness. Volunteers are an essential part of the palliative care system in Canada, providing comfort and support to families and their dying loved ones. For the most part, people

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learn about the opportunity to become a palliative care volunteer through events in their own lives, friends, and newspaper stories and advertisements.1 Palliative care volunteers are carefully selected; they may be asked to provide references and undergo a criminal background check. Additionally, volunteers are interviewed by the volunteer coordinator (sometimes called the volunteer manager or director of volunteers) and are required to complete a training program. The nature and extent of the training varies from program to program. In general, however, training typically involves between 20 to 30 hours of class work on topics such as communication skills, care at the time of death, grief and bereavement, and spiritual care. Group discussions, readings, films, and outside speakers may also be part of the training program. Although the profile of a typical Canadian palliative care volunteer is not clear at present, studies of American and British hospice volunteers suggest that they are likely to be married, white, middle-aged or older, and women with some college education and religious beliefs.2-5 As Auger6 states, “Whether it be in the private sphere of their own homes, in the dwellings of neighbors, friends or relatives, within the public realm of war fields, nursing homes, hospitals, hospices, or through palliative care programs, women remain the primary comforters of those approaching and meeting death.” According to Briggs,2 successful palliative care volunteers tend to possess important qualities such as having respect for confidence, being nonjudgmental and flexible, having a sense of humor, and having the ability to work well with others. Other important qualities for palliative care volunteers include emotional maturity, tolerance, warmth, empathy, and the ability to listen.7 There are several roles that may be assumed by palliative care volunteers.

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The most common area of palliative care volunteering is direct patient/ family care, which involves actual contact with, and emotional and social support of, terminally ill persons and their families. According to DowneWamboldt and Ellerton,8 the primary patient/family care activities performed by palliative care volunteers are “listening and hearing” and “socializing.” As Briggs2 points out, “Volunteers are often the members of the interdisciplinary team with whom the patient and family interact most often and thus the person with whom the patient and family may have the greatest emotional attachment.” Volunteers may also provide respite for family members by giving them the opportunity to take care of their business or simply rest during their visit. Besides direct patient/family care, volunteers may choose to engage in nondirect tasks. For example, they might do office work, committee work, fundraising, speaking engagements, or other services that help to maintain the palliative care program. Some volunteers are also able to offer professional services to patients, such as beauty treatments, massage, and therapeutic touch. Finally, some volunteers are specially trained to offer some kind of bereavement support to the families of patients who have died. In her investigation of volunteer qualities, Briggs2 found that palliative care volunteers were motivated by factors such as the desire to help or “pay” for their good fortune in life, religious beliefs, expansion of personal knowledge or skills, self-fulfillment, and previous experience with hospice palliative care. Other motivating factors reported by palliative care volunteers include the desire to support the hospice philosophy, having something to offer, personal growth, spare time after retirement, children grown up, or simply having the urge to volunteer in this area.4,7,9,10 Many of these motivating factors appear to be

linked with age, which may explain why most palliative care volunteers are middle-aged or older. These factors do not, however, shed any light on why so few males, younger adults, or people from ethnic minorities are attracted to palliative care volunteer work. The purpose of Study 1 was to investigate whether young adults, in particular, would be interested in becoming palliative care volunteers. It was predicted that young adults are relatively uninterested in and unaware of palliative care volunteerism.

Study 1 Method

Participants. The sample consisted of 105 undergraduate students (44 males and 61 females) enrolled in introductory psychology courses. The mean age of the participants was 19.2 years (SD = 2.8), with a range from 17 to 36 years. Materials and procedure. Participants completed the study in class. Participants were told that the study involved reading a description of what volunteering in palliative care typically involves and then indicating whether they might be interested in this kind of volunteer experience. The description— constructed in part from Kastenbaum’s11 description of the kinds of tasks volunteers do—read as follows: Palliative care volunteers take on a variety of tasks in helping to support dying patients and their families. As a palliative care volunteer, you will spend time with terminally ill patients and their families in their home, nursing home, hospital, or hospice. You will provide emotional and social support to patients and their families, offering friendship and reassurance. You might drive the patient to an appointment or to visit an old

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Table 1. Number of participants expressing an interest in becoming a palliative care volunteer by gender Interest

Males (n =44)

Females (n = 61)

Total (N = 105)

Yes

11 (25%)

28 (45.9%)

39 (37.1%)

No

33 (75%)

33 (54.1%)

66 (62.9%)

friend. You might read to the patient, help with letter writing, share hobbies, take them on walks, or simply hold a hand. And at times, you might just “be there.” You might also provide respite (time of rest) for family members so that they have the opportunity to take care of business. As a palliative care volunteer, you can wind up doing many different things, depending on the needs of the individual patient and family. Palliative care volunteers usually attend a wake or funeral when a patient dies. After reading this description, participants were asked to indicate whether they were interested in becoming a palliative care volunteer by circling either “Yes” or “No.” If they answered “Yes,” participants were asked to provide a written explanation as to why; if “No,” participants were asked to provide a written explanation as to why not. Participants were also asked to indicate whether they knew, before reading the description of what palliative care volunteers typically do, what palliative care was, by circling either “Yes” or “No.” Finally, all participants were asked to provide some basic information about themselves (e.g., their age and gender).

volunteer, while 66 of the participants said “No.” (Table 1). Eleven of the 44 male participants said “Yes” to being interested in becoming a palliative care volunteer, while 28 of the 61 female participants said “Yes.” The results of a ?-square test for independent samples revealed that females were significantly more likely than males to express an interest in palliative care volunteer work [?2 (1, N = 105) = 4.78, p < .01]. Over three-quarters of the participants admitted that, before reading the description of what palliative care volunteers typically do, they did not know what palliative care was (Table 2). The difference in the proportion of males and females who knew what palliative care was before reading the description was not significant. Content analysis was conducted on the qualitative data generated by participants’ responses to the open-ended question regarding why they would or would not be interested in becoming a palliative care volunteer. Two independent coders were used to conduct this analysis.

“Yes, I am interested in becoming a palliative care volunteer”

The explanations given by the 39 participants who expressed an interest in palliative care volunteer work tended to fall into one (or more) of the following five categories: 1. to help/support/ease the pain of others (e.g., “I believe that as a society we should help each other,” “I think helping people out is a great deed,” “I would like to be a palliative care volunteer because I enjoy helping people, and I know that I would do a good job”); 2. it would be a rewarding/fulfilling experience (e.g., “I think it would be a good experience because it would be very fulfilling to be able to help someone in that situation,” “Yes, because I believe it would be a rewarding experience”); 3. for personal self-growth/life/ learning experience (e.g., “. . . to learn about life, etc.,” “By working as a palliative care volunteer, one might receive new meaning and value to what their life is about,” “Because it would be an interesting learning experience”); 4. yes, but not right now/maybe later/in the future (e.g., “I would be interested in becoming a

Table 2. Number of participants who knew what palliative care was by gender Knew

Males (n =44)

Females (n = 60)

Total (N = 104)

Results

Yes

10 (22.7%)

15 (25%)

25 (24%)

Of the 105 participants who read the description, only 39 expressed an interest in becoming a palliative care

No

34 (77.3%)

45 (75%)

79 (75.9%)

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Table 3. Number of participants’ explanations for why they would like to become a palliative care volunteer falling into the different categories Number (percent) (n = 39)

Explanation To help/support/ease the pain of others

32 (82.1)

It would be a rewarding/fulfilling experience

8 (20.5)

For personal self-growth/life/learning experience

6 (15.4)

Yes, but not right now (maybe later/in the future)

5 (12.8)

Other

10 (25.6)

Note: Participants could give more than one explanation.

palliative care volunteer in the future, after I am done with school,” “Although I’m not interested right now in becoming a volunteer, I think in the future I could see doing it,” “While I would be interested in doing such volunteer work at some point, I would not want to do so right now”); and 5. other (e.g., “I would be interested in volunteering to give something back to the community,” “I’ve seen my mother volunteer in similar situations ... and if she can do it, so can I”). Table 3 shows the number of participants whose explanations fell into each of these five categories. The percentage agreement between two independent coders for the participants’ explanations was 83 percent (K = 0.76). “No, I am not interested in becoming a palliative care volunteer”

The explanations of the 66 participants who indicated that they were not interested in becoming a palliative care volunteer tended to fall into one (or more) of the following six categories:

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1. too emotionally demanding/ afraid of becoming emotionally attached to someone who is dying (e.g., “I wouldn’t be able to because I would get attached to the people, and it would hurt when they actually die,” “. . . because I feel that I wouldn’t have the strength emotionally to deal with someone dying,” “I don’t think I could emotionally handle being with a person and developing a friendship with them knowing that they will soon pass on”); 2. too stressful/not great with/ cannot deal with death and dying/others’ suffering/grief (e.g., “I don’t like being around death,” “I really don’t think I could handle the experience of being around death and dying all the time . . .,” “I am not fond of funeral homes and less so of watching the deceased,” “. . . I would have to experience other people’s grief . . . that would make me feel bad”); 3. lack of experience/skills/not suited for this kind of volunteer work (e.g., “I don’t think I would have the skills to become

a palliative care volunteer,” “I do not feel that I would be good at this type of job and would not know what to say to people,” “I just wouldn’t be able to handle it”); 4. just not interested (e.g., “Though palliative care volunteers provide a vital service to a particular group of people, that service, at this time at least, is neither something I have a passion nor inclination to do ...,” “... it doesn’t really appeal to me as much as other jobs do,” “I’m not interested in this kind of work with strangers”); 5. too time consuming/don’t have time (e.g., “I play basketball and go to school, which takes so much time out of my day, I could not possibly add anything to my schedule,” “. . . because it would be very time-consuming, and it would take a lot of time away from my lifestyle,” “Something like this would seem to be a fulltime job as opposed to part-time volunteering”); and 6. other (e.g., “I believe that the family or a family member should play that role,” “No, because when my mother died we had a palliative care volunteer and I didn’t find she did much,” “Because old people scare me; I hate hospitals and nursing homes because they smell so clean”). Table 4 shows the number of participants whose explanations fell into each of the six categories. The percentage agreement between two independent coders for the participants’ explanations was 64 percent (K = 0.56).

Discussion Clearly, palliative care volunteer work is not for everyone. For the most

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Table 4. Number of participants’ explanations for why they would not like to become a palliative care volunteer falling into the different categories Number (percentage) (n = 66)

Explanation Too emotionally demanding/afraid of becoming emotionally attached to someone who is dying

25 (37.9)

Too stressful/not great with/cannot deal with death and dying/others’ suffering/grief

20 (30.3)

Lack of experience/skills/not suited for this kind of volunteer work

12 (18.2)

Just not interested

6 (9.1)

Too time-consuming/don’t have time

6 (9.1)

Other

14 (21.2)

Note: Participants could give more than one explanation.

part, younger adults make up only a small proportion of palliative care volunteers. The majority (62.9 percent) of the students in the present study said “No” when asked if they would be interested in becoming a palliative care volunteer. The most common reason students gave for not wanting to volunteer was that they would not be able to detach themselves emotionally from the dying person. It is possible that these students were influenced by negative stereotypes about death and dying, for example, that being with a dying person is always morbid, depressing, and emotionally draining. For many of these students, being challenged emotionally may be perceived as a negative experience. However, many palliative care volunteers report that, although caring for dying patients and their families can be emotionally demanding, participating in the experience of another person’s final passage can also be immeasurably rewarding. For some of the students, a personal fear of death may have contributed to their reluctance to get involved as a palliative care volunteer. Some students mentioned that they “don’t like

being around death.” As one student put it, “there is more to life than thinking about the end.” We live in a society that denies death and refuses to talk about it. It is possible that some of the students in this study did not want to think about death and dying, and that the idea of spending time with a dying person may have been the furthest thing from their minds. A number of students felt that they did not have the necessary skills to become a palliative care volunteer (i.e., they would not know what to say or do). These students may not have been aware that most palliative care programs offer training for volunteers. Training typically includes topics such as communication, the dying process, the grieving process, and so on. Another reason a number of students gave for not wanting to become a palliative care volunteer was that it would be too time-consuming. Again, this concern about how much time volunteering would take may reflect a general lack of knowledge about what is expected of palliative care volunteers. After training, for example, a volunteer usually commits to working a minimum number of hours per week, per month, or as needed.

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Of those students who expressed an interest in becoming a palliative care volunteer, significantly more females said “Yes” than did males. This finding is consistent with the usual findings within the field of palliative care, where the vast majority of volunteers are women.2,4-6 As Auger6 states, “women are recognized as the primary knowers of how to care for, nurture, and support the dying.” By far, the most common reason for wanting to become a palliative care volunteer, mentioned by 82.1 percent of the respondents, was to help others. This finding also is consistent with the literature on palliative care volunteerism. “Helping persons in need” is usually one of the main reasons for volunteering.5,12,13 The second most common reason for volunteering, mentioned by 20.5 percent of the students in the present study, was that it would be a rewarding/fulfilling experience (e.g., “. . . there would be a high level of personal pride and satisfaction to know that you have helped someone make their last few months/days/years or whatever the case may be as pleasant and as bearable as possible”).

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Previous research suggests that many older volunteers are motivated by previous experience with the palliative care and death of a loved one.1,2 However, these reasons were not mentioned by the students in the present study, presumably because of their young age and lack of personal experience with the death of a family member or friend. In fact, only two of the 105 students in the present study mentioned personal experience with the death or dying of someone they cared about. Finally, a high percentage of students in this study (75.9 percent) indicated that they did not know what palliative care was before they read the description of what volunteering in palliative care typically involves. Lack of public awareness continues to be an issue facing palliative care in Canada. For example, the results of a 1997 Angus Reid14 poll showed that only 55 percent of the 1,500 Canadian adults surveyed had heard of palliative care. The higher percentage of students in the present study who had not heard of palliative care, again, may be a reflection of their young age and lack of experience with death within and among their own families and friends. It is important to recognize that undergraduate students served as participants in this study. Because students’ reasons for becoming (or not becoming) a palliative care volunteer may not be representative of young adults in general, it may be difficult to generalize from these results. Although this study probably illustrates

Table 5. Number of participants expressing an interest in becoming a classroom volunteer by gender Interest

Males (n =46)

Females (n = 65)

Total (N = 111)

Yes

34 (73.9%)

55 (84.6%)

89 (80.2%)

No

12 (26.1%)

10 (15.4%)

22 (19.8%)

young people’s attitudes toward volunteering in palliative care, future research should recruit samples of young adults with diverse backgrounds to explore this research question. Another limitation of this study is the lack of comparison groups. In addition to their lack of interest in becoming palliative care volunteers, it is possible that young people are not interested in volunteering with other populations, either (e.g., the elderly in a nursing home or children in a school setting). The purpose of Study 2 was to investigate whether young adults would be interested in becoming nursing home, classroom, and/or food bank volunteers.

Study 2 Method

Participants. The sample consisted of 111 undergraduate students (46 males and 65 females) enrolled in introductory psychology courses. The mean age of the participants was 19.2 years old (SD = 1.5), with a range from 17 to 27 years old.

Table 6. Number of participants expressing an interest in becoming a foodbank volunteer by gender Interest

Males (n =46)

Females (n = 65)

Total (N = 111)

Yes

36 (78.3%)

38 (58.5%)

74 (66.7%)

No

10 (21.7%)

27 (41.5%)

37 (33.3%)

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Materials and procedure. Participants completed the study in class. Participants were told that the study involved reading a description of what volunteering in a classroom, at a foodbank, and in a nursing home involves and then indicating whether they might be interested in these kinds of volunteer experiences. The volunteer descriptions included information about typical volunteer duties. For example, nursing home volunteers might read to residents, write letters for them, go for a walk with them, play a board game or cards with them, as well as assist with organized activities such as bingo, crafts, or special occasions. The description for classroom volunteers indicated that they might spend time listening as students practice reading out loud, help students with their homework, supervise a learning station, accompany students on a field trip, and assist students who may have behavior problems or learning disabilities. The food bank volunteer description mentioned that volunteers might sort and repack food and grocery items, collect food at food drives, stock shelves, etc. The three volunteer descriptions were constructed to be comparable, in terms of format and length, to the description used in Study 1 of palliative care volunteers’ typical duties. After reading each description, participants were asked to indicate whether they were interested in becoming this kind of volunteer by circling either “Yes” or “No.” The volunteer descriptions were presented in a randomized order. Finally, all participants were asked to

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Table 7. Number of participants expressing an interest in becoming a nursing home volunteer by gender Interest

Males (n =46)

Females (n = 65)

Total (N = 111)

Yes

26 (56.5%)

48 (73.8%)

74 (66.7%)

No

20 (43.5%)

17 (26.2%)

37 (33.3%)

provide some basic information about themselves (e.g., their age and gender).

Results Of the 111 participants who read the description for classroom volunteers, 89 expressed an interest in participating as a classroom volunteer, while 22 of the participants (19.8 percent) said “No” (Table 5). Thirty-four of the 46 male participants said they were interested in becoming a classroom volunteer, as did 55 of the 65 female participants. The results of a ?-square test for independent samples revealed no difference in the proportions of males and females expressing an interest in volunteering in the classroom. Seventy-four of the 111 participants who read the description for food bank volunteers expressed an interest in volunteering at a food bank; 37 of the participants said “No” (Table 6). Thirty-six of the 46 male participants said “Yes,” they were interested in becoming a food bank volunteer, while 38 of the 65 female participants said “Yes.” The results of a ?-square test for independent samples revealed that males were significantly more likely than females to express an interest in volunteering at a food bank [?2 (1, N = 111) = 4.75, p < .01]. Of the 111 participants who read the description for nursing home volunteers, 74 expressed an interest in becoming a nursing home volunteer, and 37 of the participants said “No” (Table 7).

Twenty-six of the 46 male participants said “Yes,” they were interested in becoming a nursing home volunteer, and 48 of the 65 female participants said “Yes.” The results of a ?square test for independent samples revealed no difference in the proportions of males and females expressing an interest in volunteering in a nursing home. The results of additional ?-square tests for independent samples revealed that participants were significantly more interested in becoming a classroom volunteer than a palliative care volunteer [?2 (1, N = 216) = 41.39, p < .01]; significantly more interested in becoming a volunteer at a food bank than a palliative care volunteer [?2 (1, N = 216) = 18.85, p < .01]; and significantly more interested in becoming a nursing home volunteer than a palliative care volunteer [?2 (1, N = 216) = 18.85, p < .01].

Discussion The results of Study 2 indicate that young people are actually very interested in becoming involved in certain kinds of volunteer opportunities, just not palliative care. Approximately two-thirds of the participating students expressed an interest in becoming a volunteer at a food bank and in a nursing home, and 80.2 percent expressed an interest in participating as a classroom volunteer with school children, compared to the 37.1 percent who expressed an interest in becoming a palliative care volunteer in Study 1.

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Together, the results of these studies support the view that young people are interested in volunteering with the residents of nursing homes, children in the classroom, and in a food bank. However, they are not interested (especially males) in volunteering to become involved in the care of dying persons. It is possible that more people might get involved in palliative care volunteer programs if they knew more about the philosophy and goals of palliative care. Prior to reading the description of the kinds of tasks palliative care volunteers carry out, only 24 percent of the students in Study 1 knew what palliative care was. In Canada, national and provincial hospice palliative care associations, as well as local palliative care programs, should play a more direct role in promoting awareness of palliative care and highlighting the important work that palliative care volunteers do and the difference they make in people’s lives. Such promotion can be done, for example, by engaging the media (e.g., feature stories in newspapers, in magazines, on the radio, and on television), as well as through posters and pamphlets. A greater number of younger (and older) individuals (men and women) might be interested in volunteering if they knew what palliative care is all about, how they could get involved, and that training programs are offered. Future research should also explore, for example, whether young people might be more interested in volunteering if they knew about the different opportunities available in palliative care programs or if they knew that they would receive training and ongoing support. With more and more Canadians seeking quality end-of-life care, the demand for volunteers will grow.

References 1. Kovacs PJ, Black B: Differentiating recruitment strategies for direct patient care, clerical, and fundraising hospice volunteers. Hosp J. 1997; 12(4): 43-56. 2. Briggs J: Volunteer qualities: A survey of

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hospice volunteers. Oncol Nurs Forum. 1987; 14(1): 27-31. 3. Field D, Johnson I: Satisfaction and change: A survey of volunteers in a hospice organization. Soc Sci Med. 1993; 36(12): 1625-1633. 4. Patchner MA, Finn MB: Volunteers: The lifeline of hospice. Omega. 1987; 18(2): 135-144. 5. Seibold DR, Rossi SM, Berteotti CR, et al.: Volunteer involvement in a hospice care program. Am J Hosp Care. 1987; 4(2): 43-55. 6. Auger J: Social perspectives on death and dying. Halifax, Nova Scotia: Fernwood Publishing, 2000.

7. Lamb DH, de St. Aubin T, Foster M: Characteristics of most effective and least effective hospice volunteers. Am J Hosp Care. 1985; 2(5): 42-45. 8. Downe-Wamboldt B, Ellerton ML: A study of the role of hospice volunteers. Hosp J. 1986; 1(4): 17-31. 9. Payne S: The role of volunteers in hospice bereavement support in New Zealand. Palliat Med. 2001; 15(2): 107-115. 10. Silbert D: Assessing volunteer satisfaction in hospice work. Am J Hosp Care. 1985; 2(2): 36-40.

11. Kastenbaum RJ: Death, Society, and Human experience, Seventh Edition. Boston: Allyn and Bacon, 2001. 12. Black B, Kovacs PJ: Direct care and nondirect care hospice volunteers: Motivations, acceptance, satisfaction, and length of service. J Volunt Adm. 1996; 14 (2): 21-32. 13. Black B, Kovacs PJ: Age-related variation in roles performed by hospice volunteers. J Appl Gerontol. 1999; 18(4): 479-497. 14. Angus Reid Group: Canadians’ Perceptions of Hospice Care [study]. Winnipeg, Manitoba: Angus Reid Group, September 1997.

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