INTRODUCTION
Biography services offer patients with life-limiting illnesses an opportunity to have their life story documented. The aims of these services are to assist patients in recognizing what they had accomplished in their lives, and to emphasize the meaningfulness of their lives for themselves, family, and friends (Lichter et al., Reference Lichter, Mooney and Boyd1993; McNeilly et al., Reference McNeilly, Read and Price2008; Turnbull & Cooper, Reference Turnbull and Cooper1981). A small study with two patients suggested that they experienced an improved quality of life as a result of their involvement in the biography service (Lichter et al., Reference Lichter, Mooney and Boyd1993).
Biography services have been utilized in a variety of populations (e.g., individuals with learning disabilities or dementia) but are mostly employed in palliative care settings for patients with life-limiting illnesses (e.g., Broadbent, Reference Broadbent1999; Clarke et al., Reference Clarke, Hanson and Ross2003; Elford et al., Reference Elford, Wilson and McKee2005; Guse et al., Reference Guse, Inglis and Chicoine2000). In most services, a person's oral biography is recorded and a written account developed (Lichter et al., Reference Lichter, Mooney and Boyd1993). In general, each of these interventions is facilitated by either a healthcare professional, a researcher (Chochinov et al., Reference Chochinov, Hack and Hassard2005; Clarke et al., Reference Clarke, Hanson and Ross2003; Guse et al., Reference Guse, Inglis and Chicoine2000), or a trained volunteer (Chippendale & Bear-Lehman, Reference Chippendale and Bear-Lehman2012; Cotelli et al., Reference Cotelli, Manenti and Zanetti2012; Korte et al., Reference Korte, Bohlmeijer and Westerhof2011).
The theoretical context for biography services is logotherapy (Frankl, Reference Frankl1967). This is an empirically based meaning-centered psychotherapy that is underpinned by an existential philosophy (Noguchi et al., Reference Noguchi, Morita and Ohno2006; Southwick et al., Reference Southwick, Gilmartin and McDonough2006). It is based on the principle that the main motivational factor for an individual is to find meaning in life, and that life has meaning under all circumstances, even miserable ones (Frankl, Reference Frankl1967). Logotherapy focuses on the strengths of patients and their pursuit of value and purpose in life (Boyle, Reference Boyle1978; Southwick et al., Reference Southwick, Gilmartin and McDonough2006). Patients are taught to overcome harmful patterns that constrain their internal development. Once they learn to release these patterns, they may be more able to fulfill their aspirations, and subsequently enhance meaning and purpose in life. They are also taught to challenge negative thoughts, so that they can view their circumstances differently and accept what cannot be changed (Wong, Reference Wong and Wong2012).
The impact of biography services on participating volunteers has yet to be studied, but researchers have found that there is a positive relationship between volunteering in hospice settings and aged-care facilities (e.g., Brown, Reference Brown2010; Dein & Abbas, Reference Dein and Abbas2005; Elliott & Umeh, Reference Elliott and Umeh2013; Harris & Thoresen, Reference Harris and Thoresen2005; Planalp & Trost, Reference Planalp and Trost2009; van Willigen, Reference van Willigen2000) and a range of psychological well-being constructs, including life satisfaction, self-esteem, and positive affect (e.g., Borgonovi, Reference Borgonovi2008; Cattan et al., Reference Cattan, Hogg and Hardill2011; Crook et al., Reference Crook, Weir and Willms2006; Dulin et al., Reference Dulin, Gavala and Stephens2012; Greenfield & Marks, Reference Greenfield and Marks2004; Thoits & Hewitt, Reference Thoits and Hewitt2001). For example, Windsor and colleagues (Reference Windsor, Anstey and Rodgers2008) concluded that volunteering in person-oriented settings increased positive affect and life satisfaction in those who were engaged in at least 100 hours, but less than 800 hours, of volunteer activity per year. Other researchers have found that volunteering in such settings is associated with higher levels of happiness than the norms for the general population (Dulin et al., Reference Dulin, Gavala and Stephens2012; Pilkington et al., Reference Pilkington, Windsor and Crisp2012; Thoits & Hewitt, Reference Thoits and Hewitt2001).
The results of a number of studies have demonstrated an association between volunteering and delayed mortality, decreased bodily pain, increased physical functioning, and improvements in general health (Borgonovi, Reference Borgonovi2008; Elliott & Umeh, Reference Elliott and Umeh2013; Harris & Thoresen, Reference Harris and Thoresen2005; Matthews et al., Reference Matthews, Baker and Hann2002; Morrow-Howell et al., Reference Morrow-Howell, Hinterlong and Rozario2003; Reference Morrow-Howell, Hong and Tang2009; Nesteruk & Price, Reference Nesteruk and Price2011; Piliavin & Siegl, Reference Piliavin and Siegl2007; Thoits & Hewitt, Reference Thoits and Hewitt2001; von Bonsdorff & Rantanen, Reference von Bonsdorff and Rantanen2010). For example, von Bonsdorff and Rantanen (Reference von Bonsdorff and Rantanen2010) conducted a comprehensive review of the benefits of voluntary work with older people and found a significant positive relationship between volunteering and physical functioning. They found that a number of studies reported increases in overall physical activity level, physical functioning, and life satisfaction following participation in person-oriented volunteering. Furthermore, Borgonovi (Reference Borgonovi2008) found that volunteering was associated with self-reported improvements in health, while other forms of altruistic behavior (e.g., donations of blood or money) were not.
In a study conducted by Brown (Reference Brown2010), individual semistructured interviews were employed to elicit volunteers' experiences in a hospice setting, which were used to determine the stressors associated with such work. Although a number of stressors were reported, the majority of participants reported that volunteer hospice work was not stressful per se and that they had enjoyed the experience. In the same study, volunteers perceived that they were very capable in their roles and believed they were helping to provide a meaningful service.
While there is research available on experiences of volunteering in health-service settings and more specifically in a hospice setting, there is no research to date that has explored the perceptions of volunteers regarding patient outcomes of biography services. Research has been undertaken with patients where it was found that participation in such services was associated with a deeper meaning, sense of self, and enjoyment at the end of their lives (Damianakis et al., Reference Damianakis, Crete-Nishihata and Smith2010; Lichter et al., Reference Lichter, Mooney and Boyd1993). Conversely, other researchers found that biography services may elicit painful memories and remind patients of past failures (Gonçalves et al., Reference Gonçalves, Albuquerque and Paul2008; Jenko et al., Reference Jenko, Gonzalez and Alley2010; Xiao et al., Reference Xiao, Kwong and Pang2011).
It is important to understand the experiences of volunteers in order to inform the training and services provided to support them in performing their roles. The aim of the current study was to investigate and offer insight into the lived experiences of volunteers involved in a biography program within a private palliative care service.
METHODS
Participants
The study inclusion criteria were: (1) volunteers aged at least 18 years, (2) involved in delivering a biography service to palliative care patients, and (3) who had been trained in biography writing prior to their involvement.
After ethics approval was gained from the human research ethics committee at the participating hospital and Monash University, all 13 volunteers who had participated in the biography service were invited to participate, 10 of whom returned a consent form (response rate = 77%). Participants included 9 females (90%), 30% were employed, 10% were semiretired, and 60% were retired.
Measures
A study-specific semistructured interview guide was developed by our research team and utilized to conduct individual interviews. Questions were designed to guide the interview so that the lived experience of involvement in the biography service was elicited. Interview questions included: “Psychologically or emotionally, what benefits have you derived through the program?” and “For you personally, what have been the positive aspects of the program?”
Procedure
Volunteers who met the eligibility criteria were mailed a participant information sheet and consent form. Consenting volunteers took part in an individual interview conducted by the first author, some of which were cofacilitated by other members of the research team (J.B., S.B.). All interviews were conducted, coded, and categorized by E.B. (first author, B.Psych.Sci., P.G.Dip.Psych.), a postgraduate student researcher from Monash University. In addition, J.B. (second author, Ph.D.) a research fellow from Cabrini Monash Psycho-Oncology; S.B. (third author; Ph.D.), a health psychologist from Cabrini Health and Head of Cabrini Monash Psycho-Oncology; and N.W. (fifth author, Ph.D.), a research fellow from Monash University, coded, categorized and/or conducted some of the interviews. Participating volunteers had not met any members of the research team prior to the interview.
The interviews took place either in the participant's home or at the hospital. Each interview was audiotaped and transcribed verbatim.
Analysis
To facilitate an in-depth and detailed exploration of volunteers' lived experiences of the biography service, thematic analysis was employed using deductive reasoning (see Braun & Clarke, Reference Braun and Clarke2008).
According to Braun and Clarke (Reference Braun and Clarke2008), thematic analysis seeks to identify patterns (themes, stories) in data and organize and describe data in rich detail. We followed the steps outlined by them, as described below, and utilized the printed transcripts. Each was read multiple times by the first author, and preliminary ideas were noted. Interesting features of the data were coded in a methodical manner, and data relevant to each code were collated. Next, the codes were organized into potential themes, and data relevant to each theme were collated. A table of codes and themes was then generated.
Two other members of the research team with experience in qualitative analysis (J.B., N.W.) then independently double-coded two interview transcripts. Following this, the first author and the two selected members of the research team (J.B., N.W.) discussed the codes and themes they had generated, and they agreed on labels for each theme. Each theme was illustrated with representative quotations from the transcripts. Pseudonyms were used to protect the identity of participants.
RESULTS
The key themes that arose from the data were: motivations for volunteering; dealing with death, dying, and existential issues; the psychosocial benefits of volunteering; and the benefits and challenges of encounters with patients and their families.
Motivations for Volunteering
Volunteers reported a range of motivations for their involvement in the biography service. Several referred to an interest in writing and listening to people's stories. Taking part in the biography service was seen as an extension of this, as Katherine explained: “I was in a writing group . . . It [volunteering in the biography service] was also fairly selfish in that I just love hearing people's stories.” Similarly, Lucy's preexisting interest in writing prompted her involvement: “I like the idea of doing the writing, so I suppose that was something that I felt really appealed to me. I enjoyed the writing side of things.” Thomas also had previous experience in writing and enjoyed the opportunity to use his skills: I just thought it would be nice to be able to do something in a voluntary capacity along this line, and I have absolutely enjoyed immensely doing the work . . . It's extraordinarily satisfying from a writer's perspective, from the biographer's perspective.”
For others, prior experiences as a patient were motivators. Jessica, for example, had found the lack of psychological and emotional support during her hospitalization exasperating, and consequently looked for opportunities to volunteer: “I found when I was sick, there was no . . . well, there is support out there, but I didn't know [about it] and . . . it wasn't offered to [me].”
In contrast, Stacey wanted to contribute something in recognition of the quality care her husband received during cancer treatment at the participating hospital:
My husband . . . received treatment here for cancer, and I actually read about it [the biography service] in one of the magazines that he got sent out, and it just really appealed to me because it is something I can do. It's something that comes easily to me, and I feel like it's something I can give back.”
Some volunteers were motivated by a desire to gain a greater understanding of human behavior and individual differences, which was particularly salient given the patients' life stage. In this way, volunteering was not entirely altruistic, as Sophie stated:
I've got a little bit of a selfish motivation as well. For me, it just really opens up a whole other side and it gives me . . . a much better understanding of personalities of people and families and all the interactions that go along with that.
Most volunteers had multiple motivations for participating in the biography service. Tess, for example, stated that she wanted to avoid wasting her life experience and skills and was keen to help the community, and volunteering in the biography service fulfilled these desires:
I've always worked with patients, and I've done a lot of other things too in my life, like everyone else my age. [I] have a lot of life experience, and I think you don't want to retire and stop working and waste it. You still want to be involved in the community in some way, and I thought I want to be involved in a manner in which my skills would help . . . So I felt that this was something that I could use [those] skills for. I didn't want to do voluntary work where [just] anyone could do it.
All volunteers highlighted the ways in which they were able to draw on their personal strengths and experiences to make a unique contribution. While some were involved in volunteering in a range of capacities, the uniqueness of the biography service was an important driver for their participation in the program.
Dealing with Dying, Death, and Existential Issues
All volunteers reported that their involvement gave them a deeper appreciation of existential issues, particularly those associated with death and dying. They all had spent time working closely with and listening to the stories of people who were very close to death, as Tess reported: “I suppose the most interesting thing [about the service] is death, isn't it? So, [it] makes you think about it.” Similar to other participants, Tess described how being proximal to death prompted her to be more appreciative of her own life: “[It] makes you think, I'm going to make the most out of my life.” This was reinforced by Thomas, who, despite his professional experience in working with the bereaved, described how volunteering helped him acknowledge that life is transient and that each day should be appreciated:
If one wasn't already aware of it, and . . . if I didn't as a person who has my life experience and professional experience realize that we're really only passing through . . . and what we're living now is not a rehearsal. This is the real deal. If I don't understand that in my own work, then who will? But . . . this certainly brings it home.
In helping others to make sense of life, some volunteers gained a deeper awareness and appreciation that there are many challenges in life that are common to all and that most people find ways to cope with these. Katherine, for example, described how the biography service heightened her awareness of the shared elements of human experience:
It's made me appreciate the variety of life, and it's made me appreciate life more . . . I think when people look over their own lives then they can think, “Well, no, I didn't do too badly if I got through all of that.” . . . I'm finding out that there are things in life that can be got over, and people deal well with that. Life is all about ups and downs. I think I knew that, but it's nice to know that everybody else has ups and downs, too.
For Katherine, being involved in the biography service had two satisfying outcomes. First, patients gained a great deal of satisfaction in recognizing their life achievements. She was also comforted by the concrete realization that other people have encountered and overcome struggles similar to those she experienced, and she perceived that this realization would help her with future struggles.
These “ups and downs” of life were also encountered by volunteers during the biographical sessions with patients, many of whom were struggling with coming to terms with and accepting the fact that their illness would limit their life. Volunteers perceived that the process of patients telling their life story offered them a way of addressing any unresolved issues, though volunteers felt the patients were often too frail and disengaged to participate, and some were possibly experiencing demoralization: “It's mostly unfinished business, and unfinished responsibilities. Unfinished things in general. But as things get more and more serious, they tend to become resigned and withdraw from life” (Caitlin).
In addition to heightening their appreciation of life, death and dying often prevented volunteers from completing the process, or limited the details available for inclusion in patients' biographies, evoking a sense of disappointment: “I mean, I've only finished two, and the others have all died in the process” (Jessica). Similarly, as Tess explained,
[One patient] was a young man with a young family of three children, and he was obviously already very ill. I was all set to go and see him, and then he disappeared on a holiday and I never heard . . . He just died. That was that. So, that was a failure!
Jessica described how some patients had difficulties in conveying their stories as they struggled to come to terms with death: “I could tell that this patient, she didn't have very long, and she was very weak. . . . I didn't get as much out of her because she was very angry about it all. . . . She died about a week later, so yeah, she was not as accepting.”
Although many volunteers expressed frustration at not being able to complete some patients' biographies, they derived some satisfaction from their perception that the process of patients telling their story could be regarded as equally important as the final product (a written biography): “It depends on whether you think it's the process or the product” (Katherine). While these patients were not able to leave their families with a tangible biography, some volunteers believed that the process still provided patients with the opportunity to accept the realities of life, remember the past, and reaffirm family relationships.
The death of patients highlighted volunteers' own mortality, many of whom were of an age similar to that of the patients: “It's also quite confronting. . . . I'm almost 75, and so I'm dealing with people my own age, or the people I've dealt with have all been a little older than me, so it's a sobering reminder of what the future holds for all of us” (Thomas).
Psychosocial Benefits of Volunteering
Volunteers gained a range of psychosocial benefits from being involved in the biography service. In particular, their involvement contributed to a sense of personal development and was personally rewarding at the same time:
I think it's stretched me as a person . . . Initially I had the idea [that] I'm going out there, and I'll be helping somebody, and, you know, it will be nice. It will be nice for their family, it will be nice for them, and I just realized exactly how often it is nice for me—how it's been good for me.” (Katherine)
I love . . . a real purpose . . . because I love being a part of that sort of life. (Jessica)
I found it really rewarding and really satisfying. The sense of reward for making a difference. (Tess)
Karen felt that being involved in the service helped her to support a grieving friend while she remembered the happy times she experienced during bereavement:
One of my closest girlfriend's . . . husband died of cancer, and I think I have been able to be a little bit more helpful to her than a few others around, just because I've said . . . ‘you know, like if we just want to talk about some fun stuff,’ and we've written a few things down, and every now and again she said she pulls it out and reads through it and has a chuckle or stuff like that.
After a long period out of the workforce, Lucy found that being involved in a voluntary role also helped her to regain confidence in skills and abilities related to her profession after 10 years of unemployment:
[It] gave me my confidence back, so that was a really big thing . . . and it was good, and you realize that you don't really lose your skills, you just lose your confidence. So that was a really big positive thing. And I just think meeting the people and hearing the stories . . . It's a huge privilege, so I really, really loved that aspect.
Benefits and Challenges of Working with Patients' Families
In addition to the benefits they personally received from involvement in the biography service, many volunteers gained satisfaction through their perceptions that patients and their families also derived benefit from the service. Lucy, for instance, felt that the service gave patients and their families an opportunity to focus on the meaningfulness and value of their lives, not on their current state: “For the past few weeks, they've been thinking not about the fact [that] ‘I'm dying,’ but about how I lived. That's important to them and their family; it's not all negative at that stage—‘I did these things too, and now my family will know about it.’ ”
Furthermore, many volunteers perceived that the service provided a great opportunity for patients to leave a legacy for current and future generations. As Katherine explained,
You're encouraging them to leave something behind for their relatives, their story, because their grandchildren and children might not ever hear a lot of that story. So it's actually going to live on. That story somewhere, even if it's in the bottom drawer in a box, that story will live on for the next generations. And that's what I see that could be really special, couldn't it?
She emphasized that biography services were about offering patients a way to “live on” within their family, and to reconcile their own physical mortality.
In addition to the sense of accomplishment that volunteers gained from producing a biography for patients and their families, volunteers perceived the actual biographical encounters as offering something valuable for the patients. Some felt that the patients enjoyed their company and highly valued the relationship they had developed:
We were getting on really well, and they couldn't wait for me to come back, and I realized that we had fun—and, I enjoyed it so much and so did they. So, we liked each other, and it was a very special time. And it was something that brightened up their day.” (Caitlin)
Similarly, Katherine felt that some patients placed a high value on the relationship they had developed: “I think he was a bit fond of me actually . . . and loved talking to me. So I think it's really good therapy. It's an outlet for them.” Both Caitlin and Katherine felt that the patients enjoyed their company and the relationship they had developed, and that they valued the opportunity to express their feelings and speak about their past.
Some volunteers found that dealing with family members was sometimes challenging. Undoubtedly, the impending death of the patient influenced the ways in which families communicated with the volunteers. While some families were appreciative and gave the volunteers gifts, others created difficulties. Some, such as the family of a patient with whom Tess volunteered, imposed time limits and placed pressure on her to deliver the biography rapidly:
I had a phone call from his wife saying that she was hoping the story could be used for the eulogy, and I hadn't even put it together by then. You know, like it needed to be done very quickly.
Dealing with patients' families was especially challenging both because of the nature of the patient–volunteer relationship and because of families' grieving processes. Due to the close relationship she developed with one patient, Tess found that his wife was overly reliant on her after his death: “She was leaning on me because it was like I was her . . . new best friend because I knew her husband so well.” While Tess had an appreciation for the depth of knowledge she had of the patient, and thus the bond his wife subsequently perceived, Tess felt burdened by this overreliance and that a professional boundary had been crossed. Other volunteers discussed similar difficulties in relation to boundaries. Though Karen enjoyed getting to know the patients and their families, she was unsure of the boundaries involved in the role: “[It's] just that feeling that you would have liked to have said something to the family afterwards . . . I don't know what's appropriate.” Karen consequently questioned whether she had become too attached to the patients and their families: “I suppose you do get attached even though you try not to. I know my husband worries about it. He worries about me getting too involved.” Another difficult issue encountered by some of the volunteers was that family members were sometimes offended by what was included in the patient's final biography. As Sarah explained, when she prioritized the patients' thoughts while writing the biography, she found that some family members were unhappy: “They were hurt, and at this stage the patient had died, and there was no, ‘Oh, I didn't do that to you, did I?’ There was no opportunity to sort of set it straight.” Volunteers perceived that, though many families benefited from the biography service, some experienced sadness and anger as a result of it.
DISCUSSION
The aim of the current study was to investigate the lived experience of volunteers involved in a biography service at an Australian private palliative care service. All the volunteers valued the opportunity to participate and regarded their experiences as mostly positive.
The motivations for volunteering in the biography program varied across volunteers. However, in the main, the motivating factors were a combination of personal interests, existing skills, previous affiliations with the hospital, a wish to expand their understanding of the human experience, and a strong desire to help the community. There does not appear to be prior research about motivations for volunteering in biography services, or other person-oriented settings. However, Pearl and colleagues (Reference Pearl, Sage and Young2011) reported a relationship between volunteering in person-oriented settings and the development of existing skills and attributes, the prospect of which may have initially served as a motivation for volunteering. In addition, other researchers have demonstrated that volunteers working in person-oriented settings have derived great personal satisfaction from contributing to a meaningful service for patients and giving back to the community and society, consistent with the findings of our current study, suggesting that volunteers found that being involved was personally rewarding (Dein & Abbas, Reference Dein and Abbas2005; Elliott & Umeh, Reference Elliott and Umeh2013; Morrow-Howell et al., Reference Morrow-Howell, Hong and Tang2009).
The volunteers in our study commonly reported that they felt that being involved in the service helped them to make sense of their own lives and gain a greater appreciation of death, illness, life, and existential issues. However, the experiences of volunteers are often not considered in research on biography services. The results of the current study suggest that many of the benefits reported by patients in earlier studies may also apply to the volunteers. As they are so closely involved with patients, it is not surprising that they may derive existential benefits from participating. However, there does not appear to have been any research in which an increased appreciation or understanding of life, death, and existential issues in volunteers has been reported (Dulin et al., Reference Dulin, Gavala and Stephens2012; Greenfield & Marks, Reference Greenfield and Marks2004; Hao, Reference Hao2008; Pilkington et al., Reference Pilkington, Windsor and Crisp2012; Thoits & Hewitt, Reference Thoits and Hewitt2001; van Willigen, Reference van Willigen2000; Windsor et al., Reference Windsor, Anstey and Rodgers2008).
Previous research has shown that volunteering is associated with such psychological benefits as enhanced self-esteem, positive affect, happiness, and a number of other constructs of psychological well-being (e.g., Hao, Reference Hao2008; Matthews et al., Reference Matthews, Baker and Hann2002; Windsor et al., Reference Windsor, Anstey and Rodgers2008). This is consistent with the findings of our study, in which the volunteers believed that they had derived a number of psychological benefits from being involved. In particular, in line with the findings of Pearl et al. (Reference Pearl, Sage and Young2011), some believed that the service had contributed to their own personal growth and development.
In accord with past research (Tait & Hodges, Reference Tait and Hodges2013), the volunteers in the current study also expressed personal satisfaction, and reported that volunteering with the service had given them a sense of purpose and had been very rewarding. The finding that volunteers experienced a high degree of personal satisfaction is also consistent with previous research suggesting that most volunteers are satisfied that they can make a difference in people's lives and contribute to a meaningful service (Morrow-Howell et al., Reference Morrow-Howell, Hong and Tang2009).
The challenges volunteers faced mostly centered around the notion of confronting death and communicating with family members. The finding that volunteers had difficulty confronting death and existential issues is consistent with previous research, which found that hospice volunteers are fearful about what a hospice represented to them—death and dying (Morrow-Howell et al., Reference Morrow-Howell, Hong and Tang2009). This is in contrast to the findings of Tait and Hodges (Reference Tait and Hodges2013), who revealed that medical residents who administered a life-review program did not have difficulties confronting death. There are likely to be important differences between the medical residents in the aforementioned study and the volunteers in the current study that may explain these equivocal findings. For example, the education received by medical residents may have equipped them to confront death with less discomfort than volunteers drawn from the general population.
It is also possible that some of the participants in our study experienced more difficulties in confronting death and existential issues as a consequence of their life experience and life stage. For example, one volunteer explained that she had not previously had to face her fears about death. This was because she was yet to confront death personally, and consequently found volunteering in a palliative care setting quite challenging. Conversely, some participants found interacting with palliative care patients all the more comforting due to their older age, and facing the reality that illness, old age, and eventual death were not too distant for the volunteers themselves.
The volunteers faced challenges communicating with family members. These issues were mostly about the time constraints placed on the volunteer by the family, as well as family members relying on them emotionally. Volunteers also discussed uncertainty regarding boundaries with respect to the family. The volunteers in our study were intimately involved in the patients' lives, as they often visited patients at the family home or at the palliative care inpatient facility when family members were present. There were occasions when volunteers offered support to family members, and spent time alone with them to learn more about the patient.
Consequently, it can be expected that some volunteers would form a close bond with family members, becoming a source of support, thus making role boundaries more difficult to maintain. Similarly, Claxton-Oldfield and coworkers (Reference Claxton-Oldfield, Gibbon and Schmidt-Chamberlain2011) highlighted the prevalence of and confusion surrounding boundary issues with hospice palliative care volunteers, and the need for clearer policies and procedures about what volunteers can and cannot do.
The current training program for volunteers includes: general information about biography services and palliative care, information on the background and theory of biography services, and instructions for communication and interviewing skills, for transcribing and editing skills, and for formatting and publishing skills, as well as information about the relevant policies and guidelines. Given the challenges reported by participants, it would seem important that service volunteers be provided with training, strategies, and ongoing support to cope effectively with any issues arising from confronting death and managing boundaries with patients and family members.
One of the key limitations of the current study was the small sample of volunteers, who were recruited from one service in Australia, thus limiting the generalizability of our findings. Consequently, it cannot be assumed that the experiences of the volunteers in our study are representative of other volunteers involved in a life-review program. In future research, studies that include large samples of patients, volunteers, and family members involved in biography services would be beneficial. Such samples could be used to investigate the relationship between specific patient, family member, and volunteer characteristics and their experiences of involvement in a biography service. The use of a mixed-method design to quantitatively measure psychological, existential, and physical health outcomes for patients, families, and volunteers would also be a useful direction for future research, as it would enable a more complete and comprehensive understanding of participants' experiences.
The current study appears to have been the first to investigate the lived experiences of volunteers involved in a palliative care biography service. Our findings thus offer insight into volunteers' motivations for participating in a biography service; how they dealt with dying, death, and existential issues; the psychosocial benefits they derived from being involved; and the benefits and challenges involved in encounters with patients and their families. In particular, our findings highlight the need for the provision of ongoing support to volunteers to assist them in managing the challenges of volunteering in a palliative care setting.
ACKNOWLEDGMENTS
The research team would like to thank each of the volunteers who shared their experiences. We would also like to thank Ms. Cate Rosewarne, manager of Volunteer Services at Cabrini Health, for her assistance and support. Dr. Narelle Warren would also like to acknowledge her fellowship from the National Health and Medical Research Council of Australia.
