A Questionnaire Survey on Adolescent and Young Adult Hiroba,a Peer Support System for Adolescent and Young Adult Cancer Patients at a Designated Cancer Center in Japan

Abstract

Adolescent and young adult (AYA) cancer patients have few opportunities to interact with peers in the hospital. AYA Hiroba, a peer support system for AYA cancer patients, was launched and held regularly at the National Cancer Center Hospital in Japan. This questionnaire survey was conducted to investigate the degree of satisfaction and opinions of AYA cancer patients regarding this program. Participants reported that the content was satisfying and useful. Their impressions suggested that AYA Hiroba is potentially effective for promoting interaction with the same generation, change in mood, and acquisition of information.

Introduction

Opportunities for adolescent and young adult (AYA) cancer patients to meet peers are reportedly helpful.¹ Support received from other AYA cancer patients is important for this age group in helping them cope with their illness.² AYA cancer patients reported that the opportunity to meet other survivors of similar age is more important than the support they receive from family and friends.³

AYA support groups that have been developed to date have used several different peer-support formats, including weekly face-to-face meetings, online groups, weekend retreats, conferences, and adventure therapy trips. These activities promote the successful achievement of age-related developmental tasks and positive psychosocial growth.⁴ AYA cancer patients should be offered access and opportunities to participate in these programs.

In Japan, more than 20,000 AYA patients are newly diagnosed with cancer each year, representing about 2.3% of all people diagnosed with cancer in the country. Various clinical departments provide medical care for AYA cancer patients because there are few AYA cancer patients per designated cancer center and the primary cancer site varies.⁵ AYA cancer patients experience anxiety during the course of treatment, such as before diagnosis, notification of the diagnosis, and initial treatment. However, AYA cancer patients currently have few opportunities to interact with patients of the same generation in the hospital. It is necessary to establish an in-hospital peer support system.

The National Cancer Center Hospital (NCCH) is a high-volume cancer center that treats more than 1000 AYA patients with newly diagnosed cancer each year. An in-hospital peer support system for AYA cancer patients named AYA Hiroba was launched in 2016. It includes a multidisciplinary AYA team to support their diverse needs. AYA Hiroba provides get-together opportunities for AYA cancer patients at NCCH. Hiroba originally means the place or space to gather in Japanese. The purpose of this survey was to investigate the degree of satisfaction and the effect of the peer support system on AYA cancer patients at a designated cancer center in Japan.

Methods

AYA Hiroba

Table 1 shows the contents of AYA Hiroba. It is held monthly for 1 hour. Participants are AYA cancer patients 15 to 39 years of age who are inpatients or outpatients at NCCH. No reservations are required, and participation is voluntary. Patients who participate in the session may talk freely about any theme they wish. Sometimes they talk about movies they watched recently, their favorite music, taking exams, getting a job, getting married, or how to deal with the side effects of anticancer drugs and the effects of treatment on reproductive function. Talking about illness with friends and coworkers or how to interact with family members are frequent topics. Two facilitators from the AYA support team participate each time to create conversation opportunities so that even patients who meet for the first time can easily communicate with each other. AYA Hiroba functions as a place where participants can feel at ease. The facilitators observe the following policies according to the facilitator's manual: (1) remain polite and follow the rules listed in Table 1; (2) try to make everyone feel welcome and talk to the whole group; (3) take off hospital coats; (4) minimize feedback and respond constructively using “I” messages (e.g., saying “I felt” so that you can point things out gently); and (5) invite questions and opinions from participants.

Table 1.

Contents of Adolescent and Young Adult Hiroba

[Date, time, and place]

Second Thursday of every month

One hour (15:00–16:00)

At the Patient Support Center of the National Cancer Center Hospital

No reservations are required

[Public relations]

Leaflets based on various opinions gathered from participants posted inside the hospital, including the outpatient department.

Leaflets may also be distributed to inpatients by AYA support team staff.

[Facilitators]

Two staff members from the AYA support team participate.

The AYA support team consists of a doctor, nurse, clinical psychologist, pharmacist, nutrition manager, and hospital play staff.

[Target]

Cancer inpatients and outpatients of the AYA generation, 15–39 years of age.

(There is flexibility about allowing patients close to the age cutoffs (e.g., age 14 or 40 years) to participate in sessions.

[Content]

Participants will decide on discussion topics and share their opinions.

[Steps]

Sessions will proceed in accordance with the facilitator's manual, as set out below:

(1) Write name (or nickname) on a name tag and put it on clothing

(2) Self-introduction (if not comfortable with disclosing full names, nicknames will do)

(3) Participants will decide on discussion topics and get started

(4) Complete questionnaire at the end of the session (voluntary)

[Topics]

In general, the participants of each session decide on topics and discuss freely. It could be a challenge to start a conversation when people meet others for the first time. Participants can use a lottery to decide on topics prepared in advance by the AYA support team. One topic can be related to illness or treatment, and another topic can be related to daily life.

[Details of topics chosen by lottery]

Illness and treatment:

Who was the first person you told about your diagnosis?

Can you talk about your illness with your friends?

Are there any changes that you have noticed since your diagnosis or the start of treatment?

Is there anything that made you feel uncomfortable during your time in the hospital?

Is there anything that makes you feel joy or that you look forward to during your hospitalization?

What do you do for refreshment or a change during your hospitalization?

Is there anything you wish you could have done in the hospital?

Daily lives:

Are there any topics that you want to hear opinions about from other participants?

Is there anything special that you want to share or recommend to other participants?

Is there anything that you recommend to buy or do at the convenience stores in the hospital?

What are your recommendations regarding the hospital's restaurants?

What music do you recommend listening to when you feel down?

What are your tastes (about your partners)?

What would you do with the money if you win a fortune in a lottery?

Is there anything you got addicted to within the past year?

[Participation rules]

(1) You will never be forced to talk about anything you do not feel comfortable sharing with other participants.

(2) Do not disclose anything you heard or learned from AYA Hiroba.

(3) Do not criticize other participants' opinions. Show respect.

AYA, adolescent and young adult.

Questionnaire survey

A questionnaire survey was conducted at the end of each AYA Hiroba session. Information collected in the questionnaire survey included: (1) age, (2) gender, (3) cancer type, (4) treatment type (inpatient or outpatient), (5) number of times participating in the session (first or multiple times), (6) thoughts about session timing (“hard to participate,” “easy to participate,” “start time should be changed”), (7) session duration (“too long,” “just right,” “too short”), (8) session frequency (“once a month,” “twice a month,” “once a week,” “other”), (9) satisfaction with the content (“very good,” “good,” “not very good,” “not good”), and (10) usefulness (“very useful,” “useful,” “not very useful,” “not useful”). In addition to these questions, a free-text field for impressions about AYA Hiroba was included. The anonymous, self-reported original questionnaire form was given after each session. Responses were collected by facilitators in a return envelope. The survey lasted from October 2017 to March 2020.

This survey was approved by the NCCH Ethics Committee (approval number: 2019-215). It was conducted in accordance with the principles of the Helsinki Declaration. Consent was obtained by filling out the questionnaire.

Analysis

Simple tabulation was performed for the 10-question items. Differences in the number of times participating in the session (first or multiple times) and contents of survey responses were compared using the chi-square test. The free-text descriptions were classified based on similarities and differences using the KJ method⁶ by three clinical psychologists and a psychiatrist on the AYA support team.

Results

From October 2017 to March 2020, AYA Hiroba was held 30 times. A cumulative total of 161 patients participated. Clinical characteristics of the respondents are shown in Table 2. Fifty-three males (32.9%) and 108 females (67.1%) with a median age of 31 (range 14–40) years attended. Eighty-three subjects (51.6%) attended two or more times, and 105 subjects (65.2%) were inpatients. Cancer types (excluding duplications) were sarcoma (n = 29, 37.2%), leukemia (n = 7, 8.9%), malignant lymphoma (n = 7, 8.9%), embryonic cell tumor (n = 6, 7.7%), and other (n = 24, 30.8%). Five respondents (6.4%) left this question blank.

Table 2.

Clinical Characteristics of the Respondents

	No. of patients	Proportion of patients (%)
Age, years (median, 31 years)
14–19	24	14.9
20–24	22	13.7
25–29	21	13
30–34	45	28
35–40	47	29.2
Unknown (blank)	2	1.2
Gender
Male	53	32.9
Female	108	67.1
Number of times participating
One	78	48.4
Two or more	83	51.6
Treatment type
Outpatient	56	34.8
Inpatient	105	65.2
Cancer type (excluding duplications)
Sarcoma	29	37.2
Leukemia	7	8.9
Malignant lymphoma	7	8.9
Embryonic cell tumor	6	7.7
Breast cancer	3	3.8
Lung cancer	3	3.8
Malignant melanoma	3	3.8
Colorectal cancer	2	2.6
Brain tumor	2	2.6
Tongue cancer	2	2.6
Neuroblastoma	2	2.6
Cervical cancer	1	1.3
Pharyngeal cancer	1	1.3
Multiple myeloma	1	1.3
Wilms tumor	1	1.3
Placental choriocarcinoma	1	1.3
NUT (nuclear protein of the testis) carcinoma	1	1.3
Von Hippel–Lindau disease	1	1.3
Unknown (blank)	5	6.4

Based on the multiple choice questionnaire responses (Table 3), 139 (89.6%) participants thought that it was easy to participate at the scheduled time (15:00) and 150 (95.6%) participants answered that 1 hour was “just right.” Most of the respondents (n = 79, 50.9%) answered that they would prefer to hold the session twice a month. A total of 119 (74.8%) answered that the sessions were “very good” in terms of content, and 115 (72.8%) answered that the sessions were “very useful.” Furthermore, the proportion of respondents who indicated satisfaction with the content and usefulness was significantly higher among those participating multiple times than among first-time participants.

Table 3.

Questionnaire Answers

Please choose one of the choices that best describes your satisfaction with items 1 to 5.
	Number of respondents (%)
Number of times participating in the session	First time	Multiple times	Total	p
[1. Thoughts on session timing]
(1) Hard to participate	5 (6.8)	5 (6.2)	10 (6.5)	0.833
(2) Easy to participate	66 (89.2)	73 (90.1)	139 (89.6)
(3) Start time should be changed	3 (4.0)	3 (3.7)	6 (3.9)
[2. Session length]
(1) Too long	0 (0)	1 (1.2)	1 (0.6)	0.279
(2) Just right	74 (97.4)	76 (93.8)	150 (95.6)
(3) Too short	2 (2.6)	4 (5.0)	6 (3.8)
[3. Session frequency]
(1) Once a month	28 (38.4)	36 (43.9)	64 (41.3)	0.699
(2) Twice a month	36 (49.3)	43 (52.4)	79 (50.9)
(3) Once a week	7 (9.6)	3 (3.7)	10 (6.5)
(4) Other	2 (2.7)	0 (0)	2 (1.3)
[4. Session content]
(1) Very good	51 (66.2)	68 (82.9)	119 (74.8)	0.016
(2) Good	26 (33.8)	14 (17.1)	40 (25.2)
(3) Not very good	0 (0)	0 (0)	0 (0)
(4) Not good	0 (0)	0 (0)	0 (0)
[5. Session usefulness]
(1) Very useful	49 (65.3)	66 (79.5)	115 (72.8)	0.045
(2) Useful	26 (34.7)	17 (20.5)	43 (27.2)
(3) Not very useful	0 (0)	0 (0)	0 (0)
(4) Not useful	0 (0)	0 (0)	0 (0)
Free-text answers
[Interaction with the same generation]
I appreciate the rare opportunity to talk with people from the same generation.
It was a great opportunity to have been able to talk with people with other cancer types, but from the same generation.
I got encouraged by the fact that there are many people out there who are fighting cancer and I am not alone.
I am grateful for the opportunity to chat with people from the same generation, whom I rarely encounter.
It was good to have been able to talk with people with the same troubles or concerns.
I am grateful for the fact that I was able to talk with some people from the same standpoint who have the same disease.
It was good to have been able to share information with people from the same generation.
I felt very much encouraged to have people from the same generation around.
[Change in mood]
I felt quite refreshed to have been able to talk about topics that I cannot discuss elsewhere.
It was very helpful to have been able to talk to people other than nurses and doctors.
It was a good refreshment.
Meeting people who are having very difficult times with disease was encouraging.
It was fun.
I could use the session as a place where I feel safe and comfortable in sharing my story.
Since I do not have many chances to talk to others after returning to my parents' house, it was good fun.
It was quite easy to understand and sympathize with other participants. It was very fun.
I laughed!
The session made me feel calm.
I am thankful that I have a place where I can have a nice chat. The topics were fun.
It was good that many people participated in the session. It was very bustling.
It was a good refreshing change of pace to have been able to enjoy chitchat.
It was the first time in such a long time that I talked with someone in person.
I enjoyed having the time to talk and listen to other participants from various backgrounds.
As AYA includes a wide age range, it was fun.
I got stimulated. It was a good use of time.
I got cheered up.
I felt positive after participating in the session. Thank you very much for the opportunity.
[Acquisition of information]
I had many questions, and so did other participants from a wide age range.
I got a lot of advice.
I want to try the tips I learned from other participants on how to manage chemotherapy side effects.
It surely helps improve my quality of life in the hospital.
I was able to ask for others' opinions freely.
I could feel the atmosphere from other hospital wings.
I learned how others cheer themselves up, and I will definitely try.
I cried again today, and today's topics were very helpful for me.
It was good that I was able to talk about anything related to my stay in the hospital, including things
I would like to do during my stay, something I cannot do elsewhere.
It was good to have been able to listen to other participants.
It was a helpful opportunity to share my story.
I got very encouraged by the person who said she was finally able to confess her diagnosis to her friends, as I have not been able to do so yet.
I definitely want to try the recommendations made by other participants.
It was good to hear about the experience of others. I wish I had participated in a session much earlier.
It was good to have been able to hear about what others have on their mind and how they solved their problems.
It was good to hear opinions from various perspectives.
It was good to know the ways others think.
Again, I was able to learn something new.
I felt the session provides us with very valuable opportunity that enables us to talk about various things, not worrying about disease.
Talking about cooking was helpful!
It was good to learn about others' views.
It was helpful to hear everyone's opinions.
I was able to share my concerns.
It was helpful to learn how to cheer myself up.
It was good to hear everyone's story.
I learned a lot about how to spend time at the hospital and about meals.
I was able to learn of systems that I did not know.

Regarding the free-text field of the questionnaire, all opinions were classified into three categories: interaction with the same generation, change in mood, and acquisition of information. The opinions were as follows: “I am grateful for the opportunity to chat with people from the same generation, whom I rarely encounter,” “I felt quite refreshed to have been able to talk about topics that I cannot do elsewhere,” and “It was good to have been able to listen to other participants.”

Discussion

This study was the first survey about a peer support system for AYA cancer patients at a designated cancer center in Japan. This study has two strengths. First, this questionnaire survey identified the needs and challenges of an in-hospital peer support system for AYA cancer patients. Second, the format of the in-hospital peer support system we created could be a model for other hospitals.

Table 2 shows that patients with various cancer types, including rare cancers, participated in the sessions, reflecting the various cancer types in the AYA generation, including rare cancers.^5,7 Inpatients participated more than outpatients. This was thought to be due to the relative ease of access because sessions were held at the hospital. Twice as many females participated as males. This seems to be consistent with the gender distribution of cancer patients in Japan and the results of previous studies.^8,9 According to the Cancer Registry of Japan, in 2016 and 2017, there were more female than male cancer patients over 20 years of age and 80% of cancer patients 20–39 years of age were female.¹⁰ Female AYA cancer patients were reportedly more likely than male AYA cancer patients to describe others' absence during treatment as a source of feeling unsupported.¹¹ Although gender differences in most aspects of personality were pointed out,¹² personality differences between men and women might affect participation.

Based on multiple choice responses to the questionnaire (Table 3), the need for AYA Hiroba is high and the format of this program is generally appropriate. Satisfaction with the content and usefulness of these sessions may motivate further participation. On the other hand, AYA Hiroba faced some challenges. Many people wanted to hold meetings twice a month, but it is difficult to increase the frequency because the facilitators take turns between clinical tasks. As a practical solution, it is possible to ask interested medical staff and volunteers outside of the AYA support team for cooperation. Furthermore, training facilitators among medical staff in the AYA peer support group is needed. However, even if the frequency were increased, this would not help individuals whose schedules do not allow participation. AYA cancer patients consider social media to be useful as a source of information,¹³ and online communities are reported to be useful.¹⁴ Due to the COVID-19 pandemic, AYA Hiroba has been held online since June 2020.

Answers in the free-text field of the questionnaire (Table 3) suggested that AYA Hiroba is not only a place for interaction between members of the same generation, but also a place where mood can be improved and information can be acquired. This result is consistent with findings from previous reports. Peer support interventions were reported to offer opportunities for AYA cancer patients to connect, share experiences, learn from each other, and feel genuinely understood in an atmosphere that encourages age-appropriate activities.¹⁵ The highest proportion of unmet peer support needs for cancer patients involved the information domain.¹⁶ AYA Hiroba functions as a place where they can feel normal, even while they are in the hospital. Sharing feelings among patients of the same generation and coming into contact with various ways of thinking may be opportunities to face illness and treatment. This is also in line with a previous study of online peer support community in the Netherlands.¹⁴ Peer support may be useful for AYA cancer patients, regardless of race or format (face-to-face or online).

This survey has several limitations. First, data were summarized by the cumulative total number of respondents. The main reason is that participation by nickname is allowed; therefore, it was not possible to identify the patients who participated in AYA Hiroba multiple times. The challenge is to balance the identification of individuals for the survey and the ingenuity of making it easier for participants to participate in the sessions. Second, social desirability bias exists. Issues with AYA Hiroba could not be extracted from the free-text responses because there were no negative responses. Third, the effect of the peer support system in terms of satisfaction and usefulness could not be measured quantitatively because this study is a postquestionnaire survey. Further prospective study is needed to evaluate the quantitative effect of the system for satisfaction and usefulness. Finally, all participants were undergoing treatment. What is required for interaction within medical institutions is an issue for further study because it is presumed that interactions between long-term survivors and post-treatment patients occur in and outside of the hospital, for example, in patient groups.

Despite these limitations, our findings potentially contribute to the establishment of an in-hospital peer support system for AYA cancer patients at other hospitals.

Conclusion

This survey revealed that there is a great need for AYA Hiroba, an in-hospital peer support system for interaction among AYA cancer patients. The participants were highly satisfied with this program. Further high-quality evaluation and the establishment of a peer support system for AYA cancer patients that could be held at other hospitals are needed.

Footnotes

Acknowledgments

The authors are grateful to all members of AYA support team at NCCH and all AYA cancer patients who participated in this survey.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

This study was supported by the National Cancer Center Research and Development Fund (30-A-13 and 2021-A-14), JSPS KAKENHI (grant number JP 20K16566), Project Mirai Cancer Research Grants, and funding from the Foundation for Promotion of Cancer Research in Japan.

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