Practical Radiation Oncology (2012) 2, e23–e29
www.practicalradonc.org
Original Report
Can trained volunteers provide psychosocial support to patients undergoing radiotherapy? The perspective of patients and volunteers Rinat Nissim PhD a,⁎, Rebecca Wong MD b , Anthony Fyles MD b , Dhara Moddel MSW a , Camilla Zimmermann MD, PhD a , Gary Rodin MD a a
Department of Psychosocial Oncology and Palliative Care, Princess Margaret Hospital, University Health Network, Toronto, Ontario, Canada b Department of Radiation Oncology, Ontario Cancer Institute, Princess Margaret Hospital, University Health Network, Toronto, Ontario, Canada Received 16 August 2011; revised 9 November 2011; accepted 16 November 2011
Abstract Purpose: Clinic-based psychosocial interventions, including volunteer-based ones, may be a costefficient and acceptable means of integrating psychosocial support into cancer care during radiotherapy. The present study evaluated a new psychosocial volunteer support program in a large radiotherapy clinic. Methods and Materials: Patients were asked to complete a demographic and satisfaction with care questionnaire. Clinic volunteers were asked to report their interactions with patients on shift logs. Results: Of the 182 participating patients, 93 (51%) recalled meeting a volunteer in the clinic, with the 2 most common support types provided being the following: “listening and caring,” and “information on services.” Analysis of 224 volunteers' shift logs indicated that almost all interactions (94%) were initiated by the volunteers, and almost half (47%) involved the patients' companions in the clinic. The most common support type documented was “information and navigation” (71%), followed by “emotional” (47%), “diversional” (21%), and “physical/practical” (17%) support. Conclusions: Trained volunteers can effectively provide clinic-based psychosocial support and information to a high proportion of radiotherapy patients. These findings demonstrate that volunteer support is a feasible means of meeting the psychosocial needs of patients with cancer attending outpatient radiotherapy clinics, who may not require or want professional psychosocial support. © 2012 American Society for Radiation Oncology. Published by Elsevier Inc. All rights reserved.
Sources of support: This research was supported by the Princess Margaret Hospital Foundation. Also, this research was funded in part by the Ontario Ministry of Health and Long Term Care (OMOHLTC). The views expressed do not necessarily reflect those of the OMOHLTC. Conflicts of interest: None. ⁎ Corresponding author. Toronto General Hospital, Eaton North, 9th Floor, Room 232A, 200 Elizabeth St, Toronto, Ontario, M5G 2C4, Canada. E-mail address: [email protected] (R. Nissim).
1879-8500/$ – see front matter © 2012 American Society for Radiation Oncology. Published by Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.prro.2011.11.006
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Introduction Psychosocial support for cancer patients is an essential part of comprehensive oncology care. Such support may be especially important during radiotherapy, in which patients may suffer from pain and other distressing symptoms related to the cancer and its treatment, and may require daily treatment for several weeks. 1 Evidence suggests that cancer-related psychosocial distress, including depression 2-4 and anxiety, 2,4,5 may be significant during radiotherapy, 6 especially at the beginning of treatment. 7 High unmet informational needs were also found to be common in radiotherapy patients, 4,8,9 who also may suffer from the burden of financial costs and travel related to the requirement to attend a treatment facility on a daily basis. 10 Although psychosocial distress and unmet information needs are common in radiotherapy patients, most do not receive psychological support, 11 even when distressscreening tools are in place. 12 Organizational barriers to psychological care for those in need may include the limited psychosocial oncology resources to provide such care or to train clinic staff to address psychosocial issues. 13,14 There are also potential attitudinal biases regarding the benefit of psychological care that may affect referral rates. 15 Patient-related barriers to receiving specialized psychosocial care may include logistical problems in attending a psychological consultation, fear of stigmatization, and language limitations. 11,16,17 In order to better integrate psychosocial support into cancer care during radiotherapy, some suggest developing psychosocial interventions within the clinic setting, especially to relieve sub-clinical depression and anxiety. 11 Such clinic-based interventions, including those provided by volunteers, may be a cost-efficient, practical, and acceptable means of providing psychosocial care to cancer patients. For these reasons, we have developed a new volunteer service, called Healing Beyond the Body (HBB), which offers patients an immediate, in-clinic, and individually tailored response to their psychosocial needs. This program selectively recruits, trains, and supervises volunteers to provide psychosocial support to patients in the waiting and treatment areas of a large cancer hospital. In a previous qualitative pilot study of 15 patients who interacted with HBB volunteers in the chemotherapy day unit, 18 we demonstrated that support from HBB volunteers is highly valued by patients, and that the presence of HBB volunteers enhanced the atmosphere of compassionate and patient-centered care in the clinic area. In addition, no risks or concerns were identified by patients in relation to their interaction with HBB volunteers. The present larger, multi-perspective, quantitative study was designed to evaluate the impact of the HBB volunteer program in the Radiation Medicine Program (RMP) clinic. Our goal was to demonstrate the degree to which this new volunteer service is utilized by radiotherapy patients, and to understand the types of support that this service can
Practical Radiation Oncology: October-December 2012
provide to patients, based on the perspectives of both patients and volunteers.
Methods and materials Setting The study was conducted at a large urban comprehensive cancer treatment center in Ontario, Canada. The Radiation Medicine Program at this center treats more than 6,500 new patients each year. Data collection for this study continued for 3 months and began following a 5-month implementation phase of the HBB service at the RMP. During the data collection phase, 1 to 3 HBB volunteers were present and actively engaged with patients in the RMP waiting areas at all times during clinic hours. To enable this level of coverage, a cohort of 33 HBB volunteers each worked 1 or 2 weekly shifts of 3 hours on a consistent day of the week. HBB volunteers had no knowledge of which patients consented or refused participation in the data collection aspects of the study. This helped to ensure that all patients received the same level of HBB volunteer care, regardless of their participation in data collection.
The HBB volunteer intervention The primary activity of HBB volunteers is to engage patients and their companions in conversations that allow them to express their emotional, relational, and practical questions or concerns. 18 HBB volunteers are trained to provide emotional and informational support through such conversations. Prior to contact with patients, all HBB volunteers attend one and a half days of group training. Training involves education on the psychosocial needs of patients and their caregivers, coping strategies, hospital and broader system services, indications for referral for professional psychosocial care, policies and procedures, and volunteer-patient boundaries and potential boundary violations. Training also includes enhancement of relevant skills such as the following: empathy, acceptance, respect, cultural sensitivity, confidentiality, active listening, selfcare, and self-reflection. The group training sessions are followed by clinic-specific training about procedures and resources, ongoing supervision and support by HBB social work staff (which include immediate response via pager for any urgent concerns of the HBB volunteers), and regular group debriefing sessions.
Sampling The study received approval from the hospital ethics board, and all participants provided informed written consent. Patients were recruited consecutively by a research assistant, who was not part of the RMP care
Practical Radiation Oncology: October-December 2012
team, in the RMP waiting areas. Eligible patients were those who had a cancer diagnosis, were 18 years of age or older, and were able to read and comprehend English sufficiently to complete the questionnaires. In addition, all HBB volunteers assigned to the RMP were invited to participate in this study by a member of the research team (R.N.).
Measures As part of a larger evaluation of satisfaction with care, patients completed a modified version of the Comprehensive Assessment of Satisfaction with Care scale. 19 This self-report measure was modified to assess the HBB volunteer service. Patients were first asked to indicate if they had an interaction with volunteers during their visits to the RMP clinic. If so, they were to complete questions about the length and content of their most recent interaction with a volunteer, and to rate their satisfaction with the interaction on 12 items. These items assessed the patients' perception of volunteers' competence, communication skills, interpersonal qualities, and availability on a scale of 1-5, with 1 being “poor” and 5 being “excellent.” In addition, patients completed a brief demographic questionnaire. Questionnaires took 5 to 10 minutes to complete. HBB volunteers recorded a shift log for every shift that they completed in the RMP. In these shift logs, HBB volunteers described, for each of their interactions with patients during their shift, who they interacted with (eg, patient, patient's companion, both, or unknown), the duration of the interaction, and its content. In addition, HBB volunteers completed a brief demographic questionnaire.
Data analysis Descriptive statistics were calculated to provide information about the participants' characteristics, and the quantity and quality of the interactions with HBB volunteers. To explore for associations between interactions with HBB volunteers and demographic variables, the χ 2 test and Student t test were used. All tests were 2-sided, with P = .05 used to determine statistical significance. A content analysis was conducted to categorize the support provided by HBB volunteers as documented by them on the shift logs.
Volunteer support to radiotherapy patients
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were married (133, 73%), and half were Canadian born (93, 51%). The most common cancer types were breast (45; 25%) and prostate (26, 14%). During the 3-month data collection phase, all 33 HBB volunteers who were assigned to the RMP completed shift logs for a mean of 7 (SD 4.8) shifts each, resulting in 224 shift logs. Of the 33 participating HBB volunteers, 28 also agreed to complete a demographic questionnaire. Of these, the majority were women (18, 64%), with a mean age of 35 years (SD 18.5; range, 19-73). Ten participants were Canadian born, 8 were from Asia, 4 from Europe, 2 from Africa, and 2 from South America. Also, the majority indicated that they had a personal connection to cancer prior to volunteering, with 13 (46%) having supported a family member or friend with cancer in the past, and 4 (14%) having a previous cancer diagnosis.
Patients' experience and satisfaction with HBB volunteers Of the 182 participating patients, 93 (51%) recalled meeting a volunteer in the RMP clinic. The χ 2 and Student t analyses, conducted to determine whether patient-related characteristics (eg, gender, age) were associated with the recall of interactions with HBB volunteers, demonstrated only one statistically significant positive association, which was between the number of clinic visits and the recall of interactions with an HBB volunteer (P b .05). Of the 93 participants who recalled meeting a volunteer, most (54%) recalled spending 10-30 minutes with the volunteer (see Table 1). During the interaction with the HBB volunteer, over half of the 93 patients recalled that more than 1 type of support was provided. The 2 most common support types provided were “listening and caring” (72%) and “information on services” (53%). The 2 most valuable types of support were “navigation” (35%) and “listening and caring” (22%). On a scale of 1-5, patients provided high ratings in terms of their satisfaction with the HBB volunteer service. All 12 items, but 1, had ratings ≥ 4. The only item with a rating b 4 asked about patients' satisfaction with the HBB volunteers' “help with communication with staff.” No statistically significant associations were found between patient characteristics and the quantity and quality ratings of the interactions with HBB volunteers.
Results HBB volunteers' documentation of interactions Participants' characteristics Out of 209 patients approached by the research assistant, 182 (87%) agreed to participate and completed the study questionnaires. Of the 182 participating patients, 82 (45%) were men. The mean age of participants was 59 years (standard deviation (SD) 15.2; range, 20-90), most
Analysis of the 224 shift logs produced by the HBB volunteers indicated that HBB volunteers interacted with 2 to 20 patients (mean 7, SD = 2.5) per 3-hour shift, resulting in the documentation of 1595 interactions. Most interactions (94%) were initiated by HBB volunteers and almost half (47%) included both patients and their
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Practical Radiation Oncology: October-December 2012
Table 1 Patients' experience and satisfaction with Healing Beyond the Body volunteers' support (n = 182)
Discussion
Variable
The present descriptive study examined the psychosocial support provided by in-clinic HBB volunteers to radiotherapy patients, based on both patients' and volunteers' perspectives. Our findings indicate that the HBB volunteer program represents a unique delivery system of support that has the potential to offer basic psychosocial support to a large number of patients receiving radiotherapy. Although some research suggests that younger patients suffer from greater distress, 20 and that the desire for emotional support is greater in female than male cancer patients, 21 we found no difference in the perceived benefit of this program to men or women or in different age groups. Patients' data indicated that more than half of patients undergoing radiotherapy recalled that they had interacted with an HBB volunteer, and all provided high ratings on the support that they received from these volunteers. Patients' interactions with HBB volunteers typically lasted between 10 and 30 minutes, in which patients typically identified receiving more than 1 type of support from the HBB volunteers. In most (72%) of the interactions, patients identified feeling supported by the “listening and caring” demeanor of the HBB volunteer. The importance of such demeanor for patients has been consistently highlighted in previous studies on the experience of patients undergoing radiotherapy. 22-25 These studies demonstrated that patients appreciate interactions in clinics in which staff are perceived as caring and prepared to take time to listen and to acknowledge the hardship of radiotherapy. Such emotionally supportive interactions served to reduce the patients' sense of isolation and boost their self-esteem, 22 and enabled patients to feel more calm, reassured, 23 and valued as individuals. 24,25
Had an interaction with a volunteer Length of interaction b10 min 10-30 min N30 min Number of support types provided Type of support provided Navigation of the hospital Physical assistance Listening and caring Information on the clinic Written educational resources Information on services Satisfaction ratings Helpfulness Willingness to listen Making waiting time less stressful Attention to your comfort Creating a comfortable environment Sensitivity to privacy Provision of information Interest in you Provision of comfort Respect Time devoted to you Help with communication with staff
93 (51%)
34 (37%) 50 (54%) 7 (9%) 3 (mean); 1.9 (SD); 1-6 (range) 44 (47%) 43 (46%) 67 (72%) 32 (34%) 45 (48%) 50 (53%) 4.18 (mean); 1-5 (range) 4.19 (mean); 1-5 (range) 4.10 (mean); 1-5 (range) 4.15 (mean); 1-5 (range) 4.10 (mean); 1-5 (range) 4.07 (mean); 1-5 (range) 4.06 (mean); 1-5 (range) 4.14 (mean); 1-5 (range) 4.29 (mean); 1-5 (range) 4.55 (mean); 1-5 (range) 4.29 (mean); 1-5 (range) 3.83 (mean); 1-5 (range)
0.91 (SD); 0.98 (SD); 1.02 (SD); 0.96 (SD); 0.93 (SD); 0.96 (SD); 1.08 (SD); 0.94 (SD); 0.88 (SD); 0.75 (SD); 0.92 (SD); 1.67 (SD);
companions, or only companions (see Table 2). Similar to the patients' reports, the HBB volunteers reported that most interactions lasted between 10 and 30 minutes. HBB volunteers were asked to describe the nature of the support they provided. Content analysis indicated that most interactions (70%) involved more than 1 type of support. The most common support type was “information and navigation” (1127; 71%); followed by “emotional” (755; 47%), “diversional” (336, 21%), and “physical/practical” (274; 17%) support. Almost half of the interactions (648; 41%) were supplemented with written educational resources. Common examples of each of the support categories are provided in Fig 1.
Table 2 Healing Beyond the Body volunteers' documentation of support Variable Who was contacted? Patient Patient's companion Both Unknown Gender of main contact(s) Female Male Both Who initiated contact? Patient/patient's companion Volunteer Length of interaction b10 min 10-30 min N30 min
No. (%) 851 281 454 9
(53%) (18%) (28%) (1%)
728 (46%) 281 (32%) 454 (22%) 97 (6%) 1484 (94%) 423 (27%) 874 (55%) 290 (18%)
Practical Radiation Oncology: October-December 2012
Figure 1
Volunteer support to radiotherapy patients
e27
Common examples of Healing Beyond the Body volunteer support by type of support.
Similar to patients' reports, HBB volunteers' shift logs indicated that their interactions involved more than 1 type of support. Content analysis to categorize the support that was documented on their shift logs identified 4 dimensions of support: information and navigation, emotional support, diversional support, and practical/physical support. All 4 dimensions of support are ultimately interrelated and serve to create and maintain a caring and human contact with patients. 18 In addition, all 4 dimensions of support may improve the experience of the waiting area and the waiting period during radiotherapy. This potential contribution of the HBB program is important given that the quality of the waiting experience is highly correlated with patients' satisfaction with care and emotional distress. 26-28 In the study by Catania et al 27 on the waiting experience of outpatient cancer patients, most patients reported that they experienced waiting in clinics as too long, boring, distressing, and physiologically troubling, and indicated that there was a high emotional cost of this time spent in a waiting area. Patients also indicated a desire to use their waiting time in a more constructive and efficient manner through organized educational and diversional activities. The need to overcome boredom and for social interactions may be especially significant for those who travel away from home for radiotherapy, and who may be more likely to experience loneliness and social isolation. 10 Our data from HBB volunteers' shift logs also demonstrated that almost half of their interactions involved patients' informal caregivers, who accompanied the patients to the hospital, and that one fifth of their interactions were exclusively with patients' companions. This degree of involvement with companions on their own may be unique to radiotherapy settings, because compan-
ions cannot accompany patients to the treatment area, and, therefore, must remain in the waiting area, where they can interact with HBB volunteers. Informal caregivers experience significant burden and distress while supporting a loved one during radiotherapy 29-31 and the opportunity to have one-on-one conversations with HBB volunteers may have a profound impact on them, although their perspective of the HBB service was not evaluated in the present study. Analysis of the HBB volunteers' shift logs indicated that almost all of their interactions with patients were volunteer initiated. This may be because the HBB volunteer service was relatively new in the RMP and patients had limited awareness of the HBB volunteers' role and responsibilities. Increased familiarity of patients and staff with the HBB service and increased exposure of HBB volunteers to patients during the period of treatment may increase its utilization or recall by patients. This may help to explain the observation that the number of clinic visits was associated with greater recall by patients of their interactions with an HBB volunteer. This may also explain the fact that the lowest patients' satisfaction rating was assigned to the HBB volunteers' contribution to communication with staff. It is possible that a repeated assessment of the HBB volunteer service would reveal better integration of HBB volunteers with the clinic staff and a greater role in facilitating patient-staff communication over time. Limitations of the present study included that it focused only on the perspectives of patients and volunteers, and evaluated the HBB volunteer service when it was still relatively new in the RMP. In addition, the study was based on patients' ability to recall meeting an HBB volunteer and it is possible that some patients interacted
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with an HBB volunteer but did not recall this interaction, or that some incorrectly indicated that they had previously met an HBB volunteer. In future studies, we plan to examine the perspective of additional stakeholders, such as clinic staff and family caregivers, to determine in what ways this volunteer program can support them. We also hope to explore whether the support provided by HBB volunteers can be maximized by tailoring it to the needs of different patient groups, as previous research has indicated that information and support needs of patients may be shaped by demographic factors such as age, gender, socioeconomic status, and by their cancer diagnosis. 32 Radiotherapy often involves daily visits for several weeks, which may be a highly stressful circumstance for patients and families. However, the frequency and duration of treatment may provide unique opportunities for professional staff and volunteers to interact with and offer support to patients. Our current study demonstrated that an ethnically and age diverse group of trained volunteers can effectively provide clinic-based psychosocial support and information to a high proportion of radiotherapy patients. Such a volunteer program may be a nonstigmatizing and feasible means of meeting the psychosocial needs of many patients who may not require or want professional psychosocial support. 11 It may also be a valuable resource for radiation therapy clinics in the provision of patient-centered care.
Practical Radiation Oncology: October-December 2012
6.
7.
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9.
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Acknowledgments We acknowledge contributions by Anne Rydall, Andrea Chan, and the Research Development Seminar of the University Health Network for comments on a preliminary version of the manuscript. Also, we thank Maja Regehr and Margo Kennedy for their help in designing and completing this project. Lastly, we thank the RMP staff and the study participants who so kindly gave their time and effort to help us improve our HBB program.
16.
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19.
References 20. 1. Sims MJ, Rilling WS. Psychosocial management of distress in interventional radiology patients with cancer. Tech Vasc Interv Radiol. 2006;9:101-105. 2. Chen AM, Jennelle RL, Grady V, et al. Prospective study of psychosocial distress among patients undergoing radiotherapy for head and neck cancer. Int J Radiat Oncol Biol Phys. 2009;73: 187-193. 3. Hahn C, Dunn R, Halperin E. Routine screening for depression in radiation oncology patients. Am J Clin Oncol. 2004;27:497-499. 4. Luutonen S, Vahlberg T, Eloranta S, Hyväri H, Salminen E. Breast cancer patients receiving postoperative radiotherapy: Distress, depressive symptoms and unmet needs of psychosocial support. Radiother Oncol. 2011;100:299-303. 5. Frick E, Tyroller M, Panzer M. Anxiety, depression and quality of life of cancer patients undergoing radiation therapy: A cross-
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sectional study in a community hospital outpatient centre. Eur J Cancer Care. 2007;16:130-136. Brix C, Schleussner C, Füller J, Roehrig B, Wendt TG, Strauss B. The need for psychosocial support and its determinants in a sample of patients undergoing radio-oncological treatment of cancer. J Psychosom Res. 2008;65:541-548. Krischer MM, Xu P. Determinants of psychological functioning in patients undergoing radiotherapy: A descriptive study. J Psychosoc Oncol. 2008;26:1-13. Hammick M, Tutt A, Tait DM. Knowledge and perception regarding radiotherapy and radiation in patients receiving radiotherapy: A qualitative study. Eur J Cancer Care (Engl). 1998;7:103-112. Zeguers M, de Haes H, Zandbelt L, et al. The information needs of new radiotherapy patients: how to measure? Do they want to know everything? And if not, why? Int J Radiat Oncol Biol Phys. 2010: doi:10.1016/j.ijrobp.2010.09.032. Fitch MI, Gray RE, McGowan T, et al. Travelling for radiation cancer treatment: Patient perspectives. Psycho Oncol. 2003;12: 664-674. Fritzsche K, Liptai C, Henke M. Psychosocial distress and need for psychotherapeutic treatment in cancer patients undergoing radiotherapy. Radiother Oncol. 2004;72:183-189. Dinkel A, Berg P, Pirker C, et al. Routine psychosocial distress screening in radiotherapy: Implementation and evaluation of a computerised procedure. Brit J Cancer. 2010;103:1489-1495. Mitchell AJ, Kaar S, Coggan C, Herdman J. Acceptability of common screening methods used to detect distress and related mood disorders—preferences of cancer specialists and non-specialists. Psycho-Oncol. 2008;17:226-236. Söllner W, DeVries A, Steixner E, et al. How successful are oncologists in identifying patient distress, perceived social support, and need for psychosocial counselling? Br J Cancer. 2001;84:179-185. Ellis J, Lin J, Walsh A, et al. Predictors of referral for specialized psychosocial oncology care in patients with metastatic cancer: The contributions of age, distress, and marital status. J Clin Oncol. 2009;27:699-705. Carlson LE, Angen M, Cullum J, et al. High levels of untreated distress and fatigue in cancer patients. Br J Cancer. 2004;90: 2297-2304. Kadan-Lottick NS, Vanderwerker LC, Block SD, Zhang B, Prigerson HG. Psychiatric disorders and mental health service use in patients with advanced cancer: A report from the Coping with Cancer Study. Cancer. 2005;104:2872-2881. Nissim R, Regehr M, Rozmovits L, Rodin G. Transforming the experience of cancer care: A qualitative study of a hospital-based volunteer psychosocial support service. Support Care Cancer. 2009; 17:801-809. Brédart A, Razavi D, Delvaux N, Goodman V, Farvacques C, Van Heer C. A comprehensive assessment of satisfaction with care for cancer patients. Support Care Cancer. 1998;6:518-523. Rodin G, Lo C, Mikulincer M, Donner A, Gagliese L, Zimmermann C. Pathways to distress: The multiple determinants of depression, hopelessness, and the desire for death in metastatic cancer patients. Soc Sci Med. 2009;68:562-569. Clarke SA, Booth L, Velikova G, Hewison J. Social support: Gender differences in cancer patients in the United Kingdom. Cancer Nurs. 2006;29:66-72. Gamble K. Communication and information: The experience of radiotherapy patients. Eur J Cancer Care (Engl). 1998;7:153-161. Halkett G, Kristjanson L, Lobb E. If we get too close to your bones they'll go brittle: Women's fears about radiotherapy for early breast cancer. Psycho-Oncol. 2008;17:877-884. Long LE. Being informed: Undergoing radiation therapy. Cancer Nurs. 2001;24:463-468. Hinds G, Moyer A. Support as experienced by patients with cancer during radiotherapy treatments. J Adv Nurs. 1997;26:371-379.
Practical Radiation Oncology: October-December 2012 26. Rondeau KV. Managing the clinic wait: An important quality of care challenge. J Nurs Care Qual. 1998;13:11-20. 27. Catania C, De Pas T, Minchella I, et al. “Waiting and the waiting room: How do you experience them?” Emotional implications and suggestions from patients with cancer. J Canc Educ. 2010;26: 388-394. 28. Aitini E, Sempreboni A, Aleotti P, et al. Anxiety levels in cancer patients and life sound experience. Tumori. 2007;93:75-77. 29. Stenberg U, Ruland CM, Miaskowski C. Review of the literature on the effects of caring for a patient with cancer. Psycho-Oncol. 2010;19:1013-1025.
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30. Fletcher BS, Paul SM, Dodd MJ, et al. Prevalence, severity, and impact of symptoms on female family caregivers of patients at the initiation of radiation therapy for prostate cancer. J Clin Oncol. 2008;26:599-605. 31. Iconomou G, Viha A, Kalofonos HP, Kardamakis D. Impact of cancer on primary caregivers of patients receiving radiation therapy. Acta Oncol. 2001;40:766-771. 32. Rutten LJ, Arora NK, Bakos AD, Aziz N, Rowland J. Information needs and sources of information among cancer patients: A systematic review of research (1980-2003). Patient Educ Couns. 2005;57:250-261.
www.practicalradonc.org
Original Report
Can trained volunteers provide psychosocial support to patients undergoing radiotherapy? The perspective of patients and volunteers Rinat Nissim PhD a,⁎, Rebecca Wong MD b , Anthony Fyles MD b , Dhara Moddel MSW a , Camilla Zimmermann MD, PhD a , Gary Rodin MD a a
Department of Psychosocial Oncology and Palliative Care, Princess Margaret Hospital, University Health Network, Toronto, Ontario, Canada b Department of Radiation Oncology, Ontario Cancer Institute, Princess Margaret Hospital, University Health Network, Toronto, Ontario, Canada Received 16 August 2011; revised 9 November 2011; accepted 16 November 2011
Abstract Purpose: Clinic-based psychosocial interventions, including volunteer-based ones, may be a costefficient and acceptable means of integrating psychosocial support into cancer care during radiotherapy. The present study evaluated a new psychosocial volunteer support program in a large radiotherapy clinic. Methods and Materials: Patients were asked to complete a demographic and satisfaction with care questionnaire. Clinic volunteers were asked to report their interactions with patients on shift logs. Results: Of the 182 participating patients, 93 (51%) recalled meeting a volunteer in the clinic, with the 2 most common support types provided being the following: “listening and caring,” and “information on services.” Analysis of 224 volunteers' shift logs indicated that almost all interactions (94%) were initiated by the volunteers, and almost half (47%) involved the patients' companions in the clinic. The most common support type documented was “information and navigation” (71%), followed by “emotional” (47%), “diversional” (21%), and “physical/practical” (17%) support. Conclusions: Trained volunteers can effectively provide clinic-based psychosocial support and information to a high proportion of radiotherapy patients. These findings demonstrate that volunteer support is a feasible means of meeting the psychosocial needs of patients with cancer attending outpatient radiotherapy clinics, who may not require or want professional psychosocial support. © 2012 American Society for Radiation Oncology. Published by Elsevier Inc. All rights reserved.
Sources of support: This research was supported by the Princess Margaret Hospital Foundation. Also, this research was funded in part by the Ontario Ministry of Health and Long Term Care (OMOHLTC). The views expressed do not necessarily reflect those of the OMOHLTC. Conflicts of interest: None. ⁎ Corresponding author. Toronto General Hospital, Eaton North, 9th Floor, Room 232A, 200 Elizabeth St, Toronto, Ontario, M5G 2C4, Canada. E-mail address: [email protected] (R. Nissim).
1879-8500/$ – see front matter © 2012 American Society for Radiation Oncology. Published by Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.prro.2011.11.006
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Introduction Psychosocial support for cancer patients is an essential part of comprehensive oncology care. Such support may be especially important during radiotherapy, in which patients may suffer from pain and other distressing symptoms related to the cancer and its treatment, and may require daily treatment for several weeks. 1 Evidence suggests that cancer-related psychosocial distress, including depression 2-4 and anxiety, 2,4,5 may be significant during radiotherapy, 6 especially at the beginning of treatment. 7 High unmet informational needs were also found to be common in radiotherapy patients, 4,8,9 who also may suffer from the burden of financial costs and travel related to the requirement to attend a treatment facility on a daily basis. 10 Although psychosocial distress and unmet information needs are common in radiotherapy patients, most do not receive psychological support, 11 even when distressscreening tools are in place. 12 Organizational barriers to psychological care for those in need may include the limited psychosocial oncology resources to provide such care or to train clinic staff to address psychosocial issues. 13,14 There are also potential attitudinal biases regarding the benefit of psychological care that may affect referral rates. 15 Patient-related barriers to receiving specialized psychosocial care may include logistical problems in attending a psychological consultation, fear of stigmatization, and language limitations. 11,16,17 In order to better integrate psychosocial support into cancer care during radiotherapy, some suggest developing psychosocial interventions within the clinic setting, especially to relieve sub-clinical depression and anxiety. 11 Such clinic-based interventions, including those provided by volunteers, may be a cost-efficient, practical, and acceptable means of providing psychosocial care to cancer patients. For these reasons, we have developed a new volunteer service, called Healing Beyond the Body (HBB), which offers patients an immediate, in-clinic, and individually tailored response to their psychosocial needs. This program selectively recruits, trains, and supervises volunteers to provide psychosocial support to patients in the waiting and treatment areas of a large cancer hospital. In a previous qualitative pilot study of 15 patients who interacted with HBB volunteers in the chemotherapy day unit, 18 we demonstrated that support from HBB volunteers is highly valued by patients, and that the presence of HBB volunteers enhanced the atmosphere of compassionate and patient-centered care in the clinic area. In addition, no risks or concerns were identified by patients in relation to their interaction with HBB volunteers. The present larger, multi-perspective, quantitative study was designed to evaluate the impact of the HBB volunteer program in the Radiation Medicine Program (RMP) clinic. Our goal was to demonstrate the degree to which this new volunteer service is utilized by radiotherapy patients, and to understand the types of support that this service can
Practical Radiation Oncology: October-December 2012
provide to patients, based on the perspectives of both patients and volunteers.
Methods and materials Setting The study was conducted at a large urban comprehensive cancer treatment center in Ontario, Canada. The Radiation Medicine Program at this center treats more than 6,500 new patients each year. Data collection for this study continued for 3 months and began following a 5-month implementation phase of the HBB service at the RMP. During the data collection phase, 1 to 3 HBB volunteers were present and actively engaged with patients in the RMP waiting areas at all times during clinic hours. To enable this level of coverage, a cohort of 33 HBB volunteers each worked 1 or 2 weekly shifts of 3 hours on a consistent day of the week. HBB volunteers had no knowledge of which patients consented or refused participation in the data collection aspects of the study. This helped to ensure that all patients received the same level of HBB volunteer care, regardless of their participation in data collection.
The HBB volunteer intervention The primary activity of HBB volunteers is to engage patients and their companions in conversations that allow them to express their emotional, relational, and practical questions or concerns. 18 HBB volunteers are trained to provide emotional and informational support through such conversations. Prior to contact with patients, all HBB volunteers attend one and a half days of group training. Training involves education on the psychosocial needs of patients and their caregivers, coping strategies, hospital and broader system services, indications for referral for professional psychosocial care, policies and procedures, and volunteer-patient boundaries and potential boundary violations. Training also includes enhancement of relevant skills such as the following: empathy, acceptance, respect, cultural sensitivity, confidentiality, active listening, selfcare, and self-reflection. The group training sessions are followed by clinic-specific training about procedures and resources, ongoing supervision and support by HBB social work staff (which include immediate response via pager for any urgent concerns of the HBB volunteers), and regular group debriefing sessions.
Sampling The study received approval from the hospital ethics board, and all participants provided informed written consent. Patients were recruited consecutively by a research assistant, who was not part of the RMP care
Practical Radiation Oncology: October-December 2012
team, in the RMP waiting areas. Eligible patients were those who had a cancer diagnosis, were 18 years of age or older, and were able to read and comprehend English sufficiently to complete the questionnaires. In addition, all HBB volunteers assigned to the RMP were invited to participate in this study by a member of the research team (R.N.).
Measures As part of a larger evaluation of satisfaction with care, patients completed a modified version of the Comprehensive Assessment of Satisfaction with Care scale. 19 This self-report measure was modified to assess the HBB volunteer service. Patients were first asked to indicate if they had an interaction with volunteers during their visits to the RMP clinic. If so, they were to complete questions about the length and content of their most recent interaction with a volunteer, and to rate their satisfaction with the interaction on 12 items. These items assessed the patients' perception of volunteers' competence, communication skills, interpersonal qualities, and availability on a scale of 1-5, with 1 being “poor” and 5 being “excellent.” In addition, patients completed a brief demographic questionnaire. Questionnaires took 5 to 10 minutes to complete. HBB volunteers recorded a shift log for every shift that they completed in the RMP. In these shift logs, HBB volunteers described, for each of their interactions with patients during their shift, who they interacted with (eg, patient, patient's companion, both, or unknown), the duration of the interaction, and its content. In addition, HBB volunteers completed a brief demographic questionnaire.
Data analysis Descriptive statistics were calculated to provide information about the participants' characteristics, and the quantity and quality of the interactions with HBB volunteers. To explore for associations between interactions with HBB volunteers and demographic variables, the χ 2 test and Student t test were used. All tests were 2-sided, with P = .05 used to determine statistical significance. A content analysis was conducted to categorize the support provided by HBB volunteers as documented by them on the shift logs.
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were married (133, 73%), and half were Canadian born (93, 51%). The most common cancer types were breast (45; 25%) and prostate (26, 14%). During the 3-month data collection phase, all 33 HBB volunteers who were assigned to the RMP completed shift logs for a mean of 7 (SD 4.8) shifts each, resulting in 224 shift logs. Of the 33 participating HBB volunteers, 28 also agreed to complete a demographic questionnaire. Of these, the majority were women (18, 64%), with a mean age of 35 years (SD 18.5; range, 19-73). Ten participants were Canadian born, 8 were from Asia, 4 from Europe, 2 from Africa, and 2 from South America. Also, the majority indicated that they had a personal connection to cancer prior to volunteering, with 13 (46%) having supported a family member or friend with cancer in the past, and 4 (14%) having a previous cancer diagnosis.
Patients' experience and satisfaction with HBB volunteers Of the 182 participating patients, 93 (51%) recalled meeting a volunteer in the RMP clinic. The χ 2 and Student t analyses, conducted to determine whether patient-related characteristics (eg, gender, age) were associated with the recall of interactions with HBB volunteers, demonstrated only one statistically significant positive association, which was between the number of clinic visits and the recall of interactions with an HBB volunteer (P b .05). Of the 93 participants who recalled meeting a volunteer, most (54%) recalled spending 10-30 minutes with the volunteer (see Table 1). During the interaction with the HBB volunteer, over half of the 93 patients recalled that more than 1 type of support was provided. The 2 most common support types provided were “listening and caring” (72%) and “information on services” (53%). The 2 most valuable types of support were “navigation” (35%) and “listening and caring” (22%). On a scale of 1-5, patients provided high ratings in terms of their satisfaction with the HBB volunteer service. All 12 items, but 1, had ratings ≥ 4. The only item with a rating b 4 asked about patients' satisfaction with the HBB volunteers' “help with communication with staff.” No statistically significant associations were found between patient characteristics and the quantity and quality ratings of the interactions with HBB volunteers.
Results HBB volunteers' documentation of interactions Participants' characteristics Out of 209 patients approached by the research assistant, 182 (87%) agreed to participate and completed the study questionnaires. Of the 182 participating patients, 82 (45%) were men. The mean age of participants was 59 years (standard deviation (SD) 15.2; range, 20-90), most
Analysis of the 224 shift logs produced by the HBB volunteers indicated that HBB volunteers interacted with 2 to 20 patients (mean 7, SD = 2.5) per 3-hour shift, resulting in the documentation of 1595 interactions. Most interactions (94%) were initiated by HBB volunteers and almost half (47%) included both patients and their
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Table 1 Patients' experience and satisfaction with Healing Beyond the Body volunteers' support (n = 182)
Discussion
Variable
The present descriptive study examined the psychosocial support provided by in-clinic HBB volunteers to radiotherapy patients, based on both patients' and volunteers' perspectives. Our findings indicate that the HBB volunteer program represents a unique delivery system of support that has the potential to offer basic psychosocial support to a large number of patients receiving radiotherapy. Although some research suggests that younger patients suffer from greater distress, 20 and that the desire for emotional support is greater in female than male cancer patients, 21 we found no difference in the perceived benefit of this program to men or women or in different age groups. Patients' data indicated that more than half of patients undergoing radiotherapy recalled that they had interacted with an HBB volunteer, and all provided high ratings on the support that they received from these volunteers. Patients' interactions with HBB volunteers typically lasted between 10 and 30 minutes, in which patients typically identified receiving more than 1 type of support from the HBB volunteers. In most (72%) of the interactions, patients identified feeling supported by the “listening and caring” demeanor of the HBB volunteer. The importance of such demeanor for patients has been consistently highlighted in previous studies on the experience of patients undergoing radiotherapy. 22-25 These studies demonstrated that patients appreciate interactions in clinics in which staff are perceived as caring and prepared to take time to listen and to acknowledge the hardship of radiotherapy. Such emotionally supportive interactions served to reduce the patients' sense of isolation and boost their self-esteem, 22 and enabled patients to feel more calm, reassured, 23 and valued as individuals. 24,25
Had an interaction with a volunteer Length of interaction b10 min 10-30 min N30 min Number of support types provided Type of support provided Navigation of the hospital Physical assistance Listening and caring Information on the clinic Written educational resources Information on services Satisfaction ratings Helpfulness Willingness to listen Making waiting time less stressful Attention to your comfort Creating a comfortable environment Sensitivity to privacy Provision of information Interest in you Provision of comfort Respect Time devoted to you Help with communication with staff
93 (51%)
34 (37%) 50 (54%) 7 (9%) 3 (mean); 1.9 (SD); 1-6 (range) 44 (47%) 43 (46%) 67 (72%) 32 (34%) 45 (48%) 50 (53%) 4.18 (mean); 1-5 (range) 4.19 (mean); 1-5 (range) 4.10 (mean); 1-5 (range) 4.15 (mean); 1-5 (range) 4.10 (mean); 1-5 (range) 4.07 (mean); 1-5 (range) 4.06 (mean); 1-5 (range) 4.14 (mean); 1-5 (range) 4.29 (mean); 1-5 (range) 4.55 (mean); 1-5 (range) 4.29 (mean); 1-5 (range) 3.83 (mean); 1-5 (range)
0.91 (SD); 0.98 (SD); 1.02 (SD); 0.96 (SD); 0.93 (SD); 0.96 (SD); 1.08 (SD); 0.94 (SD); 0.88 (SD); 0.75 (SD); 0.92 (SD); 1.67 (SD);
companions, or only companions (see Table 2). Similar to the patients' reports, the HBB volunteers reported that most interactions lasted between 10 and 30 minutes. HBB volunteers were asked to describe the nature of the support they provided. Content analysis indicated that most interactions (70%) involved more than 1 type of support. The most common support type was “information and navigation” (1127; 71%); followed by “emotional” (755; 47%), “diversional” (336, 21%), and “physical/practical” (274; 17%) support. Almost half of the interactions (648; 41%) were supplemented with written educational resources. Common examples of each of the support categories are provided in Fig 1.
Table 2 Healing Beyond the Body volunteers' documentation of support Variable Who was contacted? Patient Patient's companion Both Unknown Gender of main contact(s) Female Male Both Who initiated contact? Patient/patient's companion Volunteer Length of interaction b10 min 10-30 min N30 min
No. (%) 851 281 454 9
(53%) (18%) (28%) (1%)
728 (46%) 281 (32%) 454 (22%) 97 (6%) 1484 (94%) 423 (27%) 874 (55%) 290 (18%)
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Figure 1
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Common examples of Healing Beyond the Body volunteer support by type of support.
Similar to patients' reports, HBB volunteers' shift logs indicated that their interactions involved more than 1 type of support. Content analysis to categorize the support that was documented on their shift logs identified 4 dimensions of support: information and navigation, emotional support, diversional support, and practical/physical support. All 4 dimensions of support are ultimately interrelated and serve to create and maintain a caring and human contact with patients. 18 In addition, all 4 dimensions of support may improve the experience of the waiting area and the waiting period during radiotherapy. This potential contribution of the HBB program is important given that the quality of the waiting experience is highly correlated with patients' satisfaction with care and emotional distress. 26-28 In the study by Catania et al 27 on the waiting experience of outpatient cancer patients, most patients reported that they experienced waiting in clinics as too long, boring, distressing, and physiologically troubling, and indicated that there was a high emotional cost of this time spent in a waiting area. Patients also indicated a desire to use their waiting time in a more constructive and efficient manner through organized educational and diversional activities. The need to overcome boredom and for social interactions may be especially significant for those who travel away from home for radiotherapy, and who may be more likely to experience loneliness and social isolation. 10 Our data from HBB volunteers' shift logs also demonstrated that almost half of their interactions involved patients' informal caregivers, who accompanied the patients to the hospital, and that one fifth of their interactions were exclusively with patients' companions. This degree of involvement with companions on their own may be unique to radiotherapy settings, because compan-
ions cannot accompany patients to the treatment area, and, therefore, must remain in the waiting area, where they can interact with HBB volunteers. Informal caregivers experience significant burden and distress while supporting a loved one during radiotherapy 29-31 and the opportunity to have one-on-one conversations with HBB volunteers may have a profound impact on them, although their perspective of the HBB service was not evaluated in the present study. Analysis of the HBB volunteers' shift logs indicated that almost all of their interactions with patients were volunteer initiated. This may be because the HBB volunteer service was relatively new in the RMP and patients had limited awareness of the HBB volunteers' role and responsibilities. Increased familiarity of patients and staff with the HBB service and increased exposure of HBB volunteers to patients during the period of treatment may increase its utilization or recall by patients. This may help to explain the observation that the number of clinic visits was associated with greater recall by patients of their interactions with an HBB volunteer. This may also explain the fact that the lowest patients' satisfaction rating was assigned to the HBB volunteers' contribution to communication with staff. It is possible that a repeated assessment of the HBB volunteer service would reveal better integration of HBB volunteers with the clinic staff and a greater role in facilitating patient-staff communication over time. Limitations of the present study included that it focused only on the perspectives of patients and volunteers, and evaluated the HBB volunteer service when it was still relatively new in the RMP. In addition, the study was based on patients' ability to recall meeting an HBB volunteer and it is possible that some patients interacted
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with an HBB volunteer but did not recall this interaction, or that some incorrectly indicated that they had previously met an HBB volunteer. In future studies, we plan to examine the perspective of additional stakeholders, such as clinic staff and family caregivers, to determine in what ways this volunteer program can support them. We also hope to explore whether the support provided by HBB volunteers can be maximized by tailoring it to the needs of different patient groups, as previous research has indicated that information and support needs of patients may be shaped by demographic factors such as age, gender, socioeconomic status, and by their cancer diagnosis. 32 Radiotherapy often involves daily visits for several weeks, which may be a highly stressful circumstance for patients and families. However, the frequency and duration of treatment may provide unique opportunities for professional staff and volunteers to interact with and offer support to patients. Our current study demonstrated that an ethnically and age diverse group of trained volunteers can effectively provide clinic-based psychosocial support and information to a high proportion of radiotherapy patients. Such a volunteer program may be a nonstigmatizing and feasible means of meeting the psychosocial needs of many patients who may not require or want professional psychosocial support. 11 It may also be a valuable resource for radiation therapy clinics in the provision of patient-centered care.
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Acknowledgments We acknowledge contributions by Anne Rydall, Andrea Chan, and the Research Development Seminar of the University Health Network for comments on a preliminary version of the manuscript. Also, we thank Maja Regehr and Margo Kennedy for their help in designing and completing this project. Lastly, we thank the RMP staff and the study participants who so kindly gave their time and effort to help us improve our HBB program.
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