Motivation of Volunteers to Work in Palliative Care Setting: A Qualitative Study
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Volunteers are an integral part of the palliative care services in the Tata Memorial Hospital, Mumbai, Maharashtra, India. These volunteers are an important resource for the department. Thus, it is necessary for the department to determine what motivates these volunteers to continue to work in the setting, acknowledge them and direct efforts toward retaining them and giving them opportunities to serve to the best of their desire and abilities.
The current study aimed at understanding the motivation of volunteers to work in palliative care, to identify the challenges they face and also the effect of their work on their self and relationships.
In-depth interviews were conducted using semistructured interview guide to study above mentioned aspects. Themes were identified and coding was used to analyze the data.
The results suggested that the basic motivation for all the volunteers to work in a palliative care setting is an inherent urge, a feeling of need to give back to the society by serving the sick and the suffering. Other motivating factors identified were team spirit, comfort shared, warm and respectful treatment by the team, satisfying nature of work, experience of cancer in the family, and aligned values and beliefs. Some intrinsic rewards mentioned by volunteers were joy of giving, personal growth, enriching experiences, and meaningful nature of work.
The study attempted to improve opportunities of working for these volunteers. Although limited in scope, it offers insight for future research in the area of volunteerism in palliative care setup.
Formal volunteering is defined as an activity which takes place through not for profit organizations or projects and is undertaken to benefit the community and the volunteer. It is carried out of volunteer's own free will, without coercion, and/or for no financial payment and for designated volunteers’ positions only. Penner (2002) has defined volunteering as a long-term, planned, and prosocial behavior that takes place within an organizational setting and with the purpose to benefit strangers. He suggests four salient attributes of volunteerism, namely, longevity, planfulness, nonobligatory helping, and organizational context.
As this kind of behavior has become very important for the good of the society and community as a whole, social scientists are attracted toward studying the motivations that drive people to become volunteers, seeking the understanding as to how volunteers are different from nonvolunteers, and also finding the effective predictors of sustained volunteerism. There has been extensive research in the area of “motivation.” The motivation of people to become a volunteer has long fascinated the employers and authorities working alongside volunteers.
However, motivation of volunteers to offer services in a hospital setup is one of the topics, which invites more research. Identifying key motives of individual volunteers is very crucial to retain and attract volunteers. Thus, many researchers suggested the need for additional research to identify primary reasons and motives for volunteering.
Nearly 12.7 million new cancer cases and 7.6 million cancer deaths occurred in 2008 worldwide. In India, 0.95 million new cancer cases and 0.63 million cancer deaths occurred (Globocan, 2008; IARC, 2010). It is suggested that cancer incidence will continue to grow in the country in the future. Due to lack of early diagnosis, awareness, poor utility of health care services, and poverty in India, cancer cure becomes a distant reality for many. With improved awareness about palliative care among medical professionals, the referrals to the palliative care setting have increased in recent times.
Palliative care in India has reached level 3b integration in adult palliative care and level 2 integration in pediatric palliative care. Neighborhood Network in Palliative Care, a community-owned program in Kerala, India, was initiated in the year 2000. Over the years, this initiative has matured and grown into a vast network of more than 500 community-owned palliative care programs looking after more than 15,000 patients at any one time. It has a workforce of over 15,000 trained community volunteers, fifty palliative care physicians, and one hundred palliative care nurses. Although there is considerable success in establishing palliative care services in the developing countries, the challenge of making it accessible to larger population needing it remains. Palliative care services can be made socioeconomically accessible to all using local manpower and other resources.
Volunteer dimension has been an important part of the tradition of palliative care services. As manpower is one of the important resources needed to reach out to the larger volume of people who need palliative care, it is necessary to retain the existing volunteers, attract new volunteers, and effectively place them in the organization for the activities that meet their needs and bring them satisfaction, and it ensures mutual benefit in the process.
The challenging nature of palliative care invites questions around volunteers choosing this particular area for volunteering. In one of the studies, narrative accounts of volunteers working in palliative care settings were requested to express their rewards and challenges, to understand the elements that create meaning, and to capture the essence of volunteering experience. Significant themes emerged around what volunteers considered the most valuable aspects of their experience. Results suggested that freedom of choice and ability to use their natural gifts were the most important conditions for satisfaction for the volunteers. In addition, emotional resilience and personal hardiness were mentioned as important dimensions of their suitability for working in palliative care.
Working in a palliative care setting brings along with it an emotional and spiritual challenge. It can exhaust ones’ energies to an extent still some choose to volunteer with palliative care departments.
In such scenario, what motivates people to become volunteer with palliative care unit and what keeps them going over the years with volunteering are some of the interesting questions. Volunteers, being valuable assets of any organization, understanding their motivation to volunteer in a particular industry is very important. In an organization with inadequate funding, volunteers are one of the very important assets. Investing in right kind of volunteers become necessary, thus. A study on individuals working with HIV population in South Africa concluded that poor understanding of volunteers’ motivation would mean volunteers’ most pressing needs are not satisfied. This mismatch between organizational goals and volunteer motivation can result in discontentment, resentment and attrition among volunteers leading to organizational losses. The study also suggested that information about volunteer motivations can help organizations plan recruitment messages, recruit volunteers whose motives match organizational goals, reduce discontentment and thus improve program sustainability.
According to Esmond and Dunlop, first research in the area of volunteering was undertaken in the 1970s. A study by Tapp and Spanier on personal characteristics of volunteer phone counselors reported that altruism is one of the first referred aspects for volunteering and volunteers serve as important role models for their clients. In the 1980s, the growing research in the area of volunteer motivation distinguished between altruistic and egoistic motivations. Research suggests that people often have multiple motives behind volunteering. Along with altruistic motive such as serving the needy, there can be a self-serving motive such as developing social contacts present when one chooses to volunteer. There are various models explaining the motivations and multiple factors of motivations of volunteering. Studies of Meier and Stutzer (2004), Meier and Gagne (2008), and Raman and Pashupati (2002) emphasize the existence of intrinsic and extrinsic motivations in volunteering. Intrinsic motivation is defined as that which brings internal reward to the person as a direct result of engaging in the activity. However, extrinsic motivation is when a person engages in the activity for instrumental reasons such as receiving fame and social approval wherein helping others is the secondary motive. Some researchers like Hustinx and Lammertyn (2003) consider prime motivation as sense of duty toward community as embedded in the religious tradition of benevolence and altruism. The current study focused on identifying nature of motivation of volunteers to engage in palliative care setup as well the rewards and challenges of being a palliative care volunteer and impact of volunteering on self and relationships.
To identify the motivation to volunteer in the palliative care unit
To identify the rewards and the challenges of being a volunteer in palliative care
To understand the impact of volunteering on social relationships and self.
Settings and design
This is a qualitative study using semi-structured interview guide to understand volunteer motivation in a palliative care setup [Appendix 1]. Volunteers from the Department of Palliative Medicine, Tata Memorial Hospital – a Tertiary Cancer Hospital in Mumbai, India, who consented to participate in the study, were interviewed.
Volunteers from the department were interviewed till data saturation was achieved. The duration of each interview was 25–30 min. Data saturation was achieved by the 10th interview and thus data collection was stopped at that. The data obtained from the ten participants were analyzed. Relevant words, phrases, and sections were labeled. The responses found relevant based on the subject of interview, and the responses termed important by the interviewee were coded. These codes were grouped together under four major categories/themes identified from the obtained data.
RESULTS AND DISCUSSION
The length of service of these ten volunteers in the field of palliative care ranged from as recent as 6 months to as long as 15 years. These volunteers spent 8 h a week in the palliative care unit. Of the ten, nine were female volunteers. All participating volunteers were above 45 years of age and were either working part-time, were self-employed, or had retired from work.
After analysis, four major categories/themes were derived from the data. They were (1) motivating factors, (2) nature of rewards, (3) nature of challenges encountered as a palliative care volunteer, and (4) impact of volunteering on self and relationships. These categories were found to be connected to each other as they impacted volunteers’ motivation to serve in the Department of Palliative Medicine.
There are a number of studies seeking an answer to know who are the volunteers. Goss, Hayghe, Freeman, and others have reported that women, married persons, those with higher educational attainment and income are more likely to volunteer, that volunteering peaks among those aged 35-54 years; and that employed persons are more likely to volunteer than those who are unemployed, but those who work part-time are likely to contribute more hours. The current study sample reflects women more than men volunteer and also match the defined traits of “who” volunteers.
The interview responses confirmed that the nature of motivation for all these volunteers to work in a palliative care setting is intrinsic. It is an inherent urge, a need to give back to the society in the form of services to humanity that bring volunteers to the palliative care unit.
Palliative care in India is still a concept unknown to many. The volunteers were introduced to volunteering opportunities in the palliative care unit at the Tata Memorial Hospital through sources such as local newspapers, friends, local hospice, and the nongovernmental organizations working for cancer patients. Five volunteers expressed that the experience of cancer in their family inspired them to volunteer for this cause. Personal beliefs and willingness to care and support the sick were reported as other common motivating factors by the volunteers. One of the senior volunteers said that he was inspired to volunteer and care for the sick and afflicted from the life stories of great thinkers and social workers such as Mahatma Gandhi and Vinoba Bhave, who were his idols. Volunteers reported that the intensive volunteer training program encouraged them to engage in volunteering for the department.
Aforementioned study on volunteer motivation undertaken with 57 volunteer caregivers of people living with HIV/AIDS in six semi-rural South African communities to explore volunteer motivations revealed complex motivations underlying volunteering in AIDS care. Consistent with functional theorizing, most of the volunteers reported having more than one motive for enrolling as volunteers. Of the 11 categories of motivations identified, those relating to altruistic concerns for others and community was one among the most frequently mentioned. Volunteers also saw volunteering as an opportunity to learn caring skills or put their own skills to good use, for personal growth and to attract good things to them. A few volunteers also reported volunteering was heeding a religious call.
Volunteers engage in conducting support group meetings, women empowerment programs, and education and employment programs for families of the deceased patients. They organize picnics for pediatric patients and conduct awareness programs on important days such as World Hospice Day. They are also actively involved in fund-raising. However, unlike volunteers abroad, volunteers’ role here is not confined to above activities and giving company to the patients. Trained volunteers in palliative care setup engage in supportive counseling for the patients and their families alongside the physicians. They provide basic information and awareness about the disease, guide them through various departments around the hospital, and with the physician's assistance engage in breaking collusion between the patients and their families. They offer their supportive presence to the willing patients and their families when physicians engage in discussing prognosis.
“Immensely satisfying,” “very fulfilling,” and “well appreciated” were some of the phrases volunteers used to describe their volunteering experience. The “joy of giving,” “positive feedback and affection from the patients and their families,” “smile on the patients,” faces when leaving the department," “appreciation and respect in the society,” “life lessons and learning,” and “warmth and respect from the palliative care team” were some of the valuable rewards volunteers reported they received as volunteers in the Department of Palliative Medicine which keeps them motivated to continue serving in the department.
Given an opportunity to express the challenges faced as volunteers in palliative care unit, the volunteers expressed challenges of personal and physical (environmental) nature. Talking with pediatric patients and their parents and being present for them when the physician breaks the bad news to them are major challenges of personal nature expressed by eight volunteers. These challenges, they said, make them limit their participation with pediatric palliative care services. One of the volunteers expressed overcoming day-to-day concerns at home front and work front so that she can support and cheer the patients. Three volunteers expressed that helping patients live to the fullest and helping them overcome the stigma about the disease in the society is personally challenging because most of these patients come from the strata of society bound by illiteracy, unawareness, and poverty. One of the volunteers reported that being at equal wavelength with the patients and their families and supporting them with right guidance, at times, become challenging.
Challenges of physical nature expressed by all volunteers were limitation of time and space due to large volume of patients and maintaining continuous follow-up with the patients.
The nature of motivation to volunteer with palliative care unit over the years for all volunteers is intrinsic. Altruistic motive of doing good for the society, satisfaction of utilizing time in purposeful activity of improving quality of life for the patients, feelings of belongingness, warm and supportive environment, mutual respect and appreciation in the palliative care unit, support and appreciation received from family and friends are the motivating factors for continued volunteering for all the volunteers. The motivations expressed by the volunteers in the current study mainly belonged to belongingness and protection and altruism categories as defined in the study by Ferreira et al. on motivations among hospital volunteers.
All volunteers expressed that volunteering in palliative care has impacted their social and personal relationships positively. One volunteer reported that she has developed more understanding, has become more accepting and forgiving in nature and developed optimistic attitude which has beautified her and her relationships. When talking about growth on a personal level, all volunteers expressed that volunteering experience has made them more empathetic, compassionate, nurturing, and accepting. Seeing patients and their families enduring cancer has inspired volunteers to accept and value life. Volunteers expressed having learned important life lessons such as being happy, sharing happiness, letting go, accepting the things that cannot be changed, living each day as it comes, and living without regrets. These life learning, one of the volunteers reported, has brought positive changes and meaning to his life and the lives of his loved ones. Volunteering experience has led to spiritual growth and enhancement, reported one of the senior volunteers. He expressed that volunteering experience has helped him overcome his fear of death. In his words, “being aware of dying and still being engaged in living” is what volunteering in palliative care unit has taught him.
Other motivating factors, rewards and challenges of volunteering within the palliative care set up and its impact on social relationships were also expressed by the volunteers. This is represented in the Table 1.
Through the study, volunteers also received an opportunity to express what more they are willing to do for the patients and their families and how they want to enhance their role as volunteers. Two volunteers expressed they would like to engage in introducing alternative therapies they have expertise in, like Reiki, acupressure, massage, and yoga for the patients to help them manage pain and other symptoms. All volunteers expressed their willingness to spend few more hours during the week and engage in updating themselves about advances in the field of cancer through training and learning programs. They expressed they would like to actively participate in organizing fun activities for pediatric patients.
In a country where awareness and need for palliative care is increasingly being recognized, volunteers from the regions can play an important role in fulfilling the aim of reaching out and providing holistic care to larger masses. Trained volunteers can become a valuable resource in enabling palliative care services to be socioeconomically accessible.
The current study suggests intrinsic motivation as the prime motivation that helps volunteers continue to contribute in the chosen field. The study results stand in line with the past research in the area of volunteer motivation suggesting altruistic motivation brings volunteers to serve in palliative care. Hustinx and Lammertyn, cited in Ferreira et al.'s study, rightly said that the field one chooses to volunteer is determined by self-evident affiliation between shared ideologies, religious convictions, and collective identities.
Unique about the current study was that it focused on rewards and challenges of the volunteers serving in palliative care setup as well the impact of volunteering on self and relationships along with focusing on motivations. However, there are hardly any studies on the motivation of volunteers serving in the palliative care in a hospital setup, and the current study can thus be stepping stone to future research in this area. Future research can also focus on intrinsic and extrinsic motivating factors in-depth and also explore the role of age and gender in volunteering amongst volunteers in palliative care setup in a hospital.
Financial support and sponsorship
This work is financially supported by the Department of Palliative Medicine, Tata Memorial Hospital, Parel, Mumbai, Maharashtra, India.
Conflicts of interest
There are no conflicts of interest.
This study would not have been accomplished without the help and support received from the staff of the Department of Palliative Medicine, and the volunteers who offered their valuable time and services toward the functioning of the department. The authors are also grateful to the volunteers who participated in the study for their sincere expressions to help the fulfillment of the study. Authors are immensely grateful to Dr. Jayita Deodhar for her invaluable insights, guidance and support in the accomplishment of this article. Authors are thankful to Dr. Naveen Salins for his kind support, constructive feedback and valuable insights through the publication process.
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Who introduced you to the palliative care setting? What motivated you to join palliative care unit as a volunteer? What inclines you to continue working as a volunteer in palliative care How do you find working as a volunteer in a palliative care unit Have there been times when you have experienced difficulty in helping the patient or its family? How did you deal with those difficulties? Are there times when you have felt emotionally drained out? To whom do you express your concerns at such times? What are the most interesting things/best things about being a volunteer in palliative care setting? How has your work experience in the palliative care affected your relationships with your near and dear ones? What life-lessons has this kind of work brought to you?
Who introduced you to the palliative care setting?
What motivated you to join palliative care unit as a volunteer?
What inclines you to continue working as a volunteer in palliative care
How do you find working as a volunteer in a palliative care unit
Have there been times when you have experienced difficulty in helping the patient or its family?
How did you deal with those difficulties?
Are there times when you have felt emotionally drained out? To whom do you express your concerns at such times?
What are the most interesting things/best things about being a volunteer in palliative care setting?
How has your work experience in the palliative care affected your relationships with your near and dear ones?
What life-lessons has this kind of work brought to you?