Helping Others: Reasons for Participation in Service User Involvement Initiatives from the Perspective of Adolescents and Young Adults with Cancer

Abstract

Purpose:

Service user involvement, which implies involvement in decision-making processes important for organizing, developing, and evaluating health care, is sparsely investigated from the perspective of adolescents and young adults (AYAs) with cancer. Thus, the purpose of this qualitative study was to investigate AYAs' reasons for participation in service user involvement initiatives during their cancer course.

Methods:

Data from 12 semistructured interviews with AYA cancer patients and AYA cancer survivors aged 16–29 years were analyzed using thematic analysis. The participants had been involved in one or more service user involvement initiatives in “Kræftværket,” a youth support center and social organization for AYAs with cancer in Copenhagen, Denmark.

Results:

Four main themes with matching subthemes were identified: Community (Being together, Developing together, and In the same boat), Normality (A new normal and Something to do), Contribution (Something at heart, Support to other AYAs, and Improving the health care system), and Codetermination (Real participation and Influence on one's own everyday life).

Conclusion:

Participating in service user involvement initiatives had a positive impact on the illness course of AYAs with cancer as the participation recreated a feeling of normality, codetermination of one's own everyday life, and met a wish for altruism in terms of helping others.

Introduction

Service user involvement can be defined as the involvement in decision-making processes important for organizing, developing, and evaluating health care.¹ Service user involvement in health care has become more and more widespread during the last decades, but the involvement of adolescents and young adults (AYAs) is still a relatively new field in many countries, despite recommendations in several international guidelines for AYAs with chronic conditions.^2,3 Furthermore, service user involvement is described as a part of youth-friendly cancer services that aim to take AYAs' views into account in the planning and development of cancer health care services.⁴

Within the area of service user involvement, AYAs are most often involved in research,⁵ however, involvement in the development of patient-oriented mobile health (mHealth) tools is also increasing.^6,7 Most studies have addressed the involvement process in terms of the level of participation, focusing on real versus symbolic participation.⁸ When it comes to research in youth involvement in the field of cancer, we still know very little, even though the youth-friendly cancer guidelines call for participation. Furthermore, youth-oriented support initiatives aimed at AYAs with cancer need to be evaluated.⁹ The reasons to participate in service user involvement among AYAs with cancer comprise one of the areas that remains unexplored.¹⁰

The main point of this study is service user involvement focusing on a range of initiatives for AYAs with cancer experience from the personal perspectives of the users. The initiatives are anchored in Kræftværket, a youth support center and social organization for AYAs (15–29 years) with cancer. Kræftværket is centrally located at the University Hospital Rigshospitalet in Copenhagen, Denmark and aimed for AYAs getting in- and outpatient treatment as well as survivors during their reintegration into life after cancer.⁹ The initiatives cover app workshops (development of an app aimed at improving the quality of life and the course of AYAs with cancer), book workshops (development of a book with knowledge and advice for newly diagnosed AYAs), youth panel meetings (meetings four times a year, at which decisions are taken to move forward with new ideas at Kræftværket), and decisions taken on a closed Facebook site (e.g., for posting of events and activities at Kræftværket).

The study grew out of an interest in AYAs' reasons to put time and effort into service user involvement initiatives in a period of life characterized by physical, social, and existential challenges. Moreover, it is relevant to obtain knowledge about how to ensure young patient's commitment to service user groups, as it might affect the quality of outcome as well as teach us what to emphasize when recruiting participants and organizing future initiatives. Thus, our research question was: What reasons do AYAs have to participate in service user involvement initiatives during their cancer course?

Methods

Data collection

Data consisted of 12 individual interviews collected from February to March 2018 at Copenhagen University Hospital, Rigshospitalet in Denmark. A semistructured interview guide was used, and the wording of some of the questions was: Why did you participate? What motivated you to participate? Were there specific reasons why you participated? Moreover, the interview guide contained questions related to two other substudies: The impact of service user involvement, and general experiences of service user involvement from a theoretical perspective of participation. These substudies will be published later. The interviews were conducted by S.H., who has experience interviewing AYAs with chronic conditions including cancer. The interviews, which were performed in Danish, lasted between 19 and 28 minutes. Data were transcribed verbatim, and quotes were subsequently translated into English.

Recruitment and participants

Participants were recruited from Kræftværket. Inclusion criteria were AYA cancer patients and AYA cancer survivors aged 15–29 years who had participated in at least one of the service user involvement initiatives (youth panel meetings, app workshops, or book workshops) during cancer treatment at the University Hospital Rigshospitalet in Copenhagen. Exclusion criteria were AYAs younger than 15 years and older than 29 years and AYAs with no experience of involvement in the service user initiatives. The participants were recruited via a written query posted on Kræftværket's bulletin board and on Kræftværket's closed Facebook site. A total of 12 AYAs responded to the query, 6 women and 6 men, mean age 24.2 years (Table 1).

Table 1.

Participants

Gender	Age (when the interview took place)	Diagnosis ^a	Education (current or last completed)
Male	24	Hematologic	Undergraduate
Male	27	Hematologic	Undergraduate
Male	26	Hematologic	Primary school
Female	29	Hematologic	Postgraduate
Female	18	Oncologic	Primary school
Male	21	Hematologic	Undergraduate
Female	27	Oncologic	Undergraduate
Female	29	Hematologic	PhD
Male	21	Oncologic	Undergraduate
Male	16	Hematologic	Primary school
Female	29	Oncologic	Undergraduate
Female	23	Hematologic	Undergraduate

Hematologic cancers: leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma; Oncologic cancers: breast cancer, testicular cancer, neuroendocrine cancer, brain cancer.

Permission to conduct the study was granted by the Data Protection Agency (2012-58-0004). The participants received a summary description of the project a few days before the interview was held informing them about the aim of the study, electronic recording of the interview, and anonymity in the publications. Written informed consent was obtained from all participants, including parents for the participant who was younger than 18 years.

Analysis

Data were analyzed using a thematic analysis approach according to Braun and Clarke.¹¹ Coding of text involved reading and rereading of the transcriptions to identify and categorize concepts across data. Concepts relevant to the research question were highlighted in the margin of the transcriptions and then sorted into themes and subthemes. S.H. did the initial coding, which was repeated by the last author K.A.B. and subsequently discussed thoroughly between S.H. and K.A.B. Then, S.H. and K.A.B. met with the coauthors H.P., L.L.H., M.H., and C.L.V. to discuss and rearrange themes and subthemes. Any disagreement in the coding and categorizing of data was discussed until agreement was reached.

The author-group consisted of experts in the field of adolescent medicine, pediatric and adult hematology and oncology, and qualitative research. To ensure validity and reliability, themes in the interview guide were developed based on research in the field. We collected data systematically using the interview guide, and participants were asked the same range of questions. However, we allowed participants to bring forward unforeseen topics that could add new knowledge to the field. Validity was further enhanced by verbatim transcriptions, which were performed by the interviewer S.H. immediately after the interviews were held.

Results

The results of the analysis suggest four main themes: Community, Normality, Contribution, and Codetermination with matching subthemes as described in Table 2.

Table 2.

Themes, Subthemes, and Quotes

Themes	Subthemes	Quotes
Community	Being together	Quote 1:
		“You come to the lunch meetings just as much for talking together” (interview 1).
		Quote 2:
		“It's pleasant to go there, and it's nice to meet about something else, so there is definitely some fellowship in doing it that also helps with motivation” (interview 7).
	Developing together	Quote 3:
		“I could tell that being a part of it, it actually moved amazingly much, we were a bunch that used it a lot and were present for all these workshops” (interview 8).
		Quote 4:
		“It clearly does something for the community, that you are part of a group together and decide various things that might happen” (interview 12).
	In the same boat	Quote 5:
		“That you were divided into groups with others who had different illnesses and also were at different age levels, I think, gives a really good dynamic in these things” (interview 7).
		Quote 6:
		“We're all in the exact same boat right now and everything is so insecure and so frightening, but we're also quite sure that we'll come out on the other side, it's just that it gives an incredibly strong fellowship” (interview 4).
Normality	A new normal	Quote 7:
		“When you are used to rolling up your sleeves and contributing, and then not being able to, it's really horrible […] like a new normal” (interview 2).
		Quote 8:
		“You're also sitting with other people that make you feel normal” (interview 5).
	Something to do	Quote 9:
		“Your calendar can really fast get really empty for a long, long time, because you mustn't work because you can't go to school, and it's important to come out among others, too” (interview 1).
		Quote 10:
		“I was too sick to continue my studies, for example, so there was nothing everyday-wise, there was really nothing to wake up to besides those chemo treatments, right? So it's excellent to […] meet up somewhere and try to be a little productive” (interview 4).
Contribution	Something at heart	Quote 11:
	Something at heart	“I really think I had something to say; I had some opinions about how I thought things should be when you could finally have influence over something; then I liked it because I did, indeed, think I had something relevant to say” (interview 8).
	Support to other AYA	Quote 12:
		“If it helps others, then I might as well just be someone who helps it along quicker […] at least to make it easier for them” (interview 10).
		Quote 13:
		“[Helping others] is the consistent thread; it's like the goal” (interview 6).
	Improving the health care system	Quote 14:
		“Confusion in the system and my negative experiences started long before I came to the hospital […] so for a long time my illness had been overlooked […] so if I could help in some other ways, it would be just awesome […]” (interview 11).
		Quote 15:
		“I don't think anyone makes an active effort to hold onto those who have an enormous wealth of experience, the ones who've been through the process and become cured. I contacted the youth coordinator about it and asked about making a kind of mentoring plan, and that's what made a huge incentive for me to participate in the workshops” (interview 9).
Codetermination	Real participation	Quote 16:
		The all-of-a-sudden being asked to contribute and getting some responsibility, that means something to all of us, it means you're taken seriously” (interview 2).
		Quote 17:
		“You could see that it actually put some things in motion; it meant something, and you could in fact make a difference” (interview 8).
	Influence on one's own everyday life	Quote 18:
	Influence on one's own everyday life	“I like to have influence over my own daily life and what happens around me […]; when I just lay in my department, I don't feel like I have control over my everyday life, and I feel that I get some co-decision-making ability” (interview 3).

Each subtheme is represented by at least one quote in the table.

Community

Being together

Being with other AYAs was a primary reason to sign up for the user involvement initiatives for many of the participants. The participants explained that a cozy atmosphere (Danish: “hygge”), getting out among others, and the interaction with other AYAs were motivating (quotes 1 and 2).

Developing together

Some of the AYAs were motivated by working together on projects and developing the projects together. Furthermore, the time perspective was short, which meant they could see the results of their decisions within a reasonable period, and they could see how their efforts could make a difference for others (quote 3). Moreover, it was motivating to decide all together because it gave a stronger sense of community (quote 4).

In the same boat

It was highly motivating for the participants to sign up for the user involvement initiatives because they were sure to discover a shared understanding from the other participants. The special community that occurred with the other AYAs in the groups was described as unique and as something that they could not find among friends outside the hospital. Moreover, the community consisted partly of being within the same age range and partly of being diagnosed with cancer (quote 5). There was a great deal of uncertainty associated with living with cancer, and in the user involvement groups, participants could meet others in the same uncertain and scary situation they experienced, which provided very strong group cohesion and reason for being together (quote 6).

Normality

A new normal

Living with cancer was described as a new form of normality, in which youth life was suddenly far from the way it used to be because, among other things, it was more difficult to contribute and make an effort for yourself and others. Therefore, for some participants, the reason for participating in the service user initiatives arose because of the opportunity to do some of the normal everyday activities recognizable from their previous life (quote 7). Also, some of the AYAs felt more normal among other AYAs with cancer (quote 8), which made it attractive to attend youth panel meetings and workshops.

Something to do

Several participants found that their lives went on pause when they were diagnosed with cancer and that they had too much time to do nothing. Their calendar became empty because they could not work or go to school. Therefore, youth panel meetings and workshops were meaningful events to put into the calendar to fill it out with something to do, and the argument “just something to do” represented a major motivation factor (quote 9). Moreover, the participation made the days more everyday-like because the AYAs had to show up and be productive (quote 10).

Contribution

Something at heart

Several of the participants were motivated to participate in the service user initiatives because they had something specific at heart, either ideas they would like to spread to others or experiences that made them want to improve existing conditions (quote 11). They described their motivation with words like “I like to give input,” “I want to make others wiser,” “I have opinions I would like to share with others,” “I have something relevant to say,” and “I would like to share my experiences.”

Support to other AYA

Several AYAs explained that one of the primary reasons for participating in the user involvement initiatives was altruism in terms of considerations to other AYAs, giving back to others and making a difference for AYAs diagnosed with cancer at a later point (quotes 12 and 13). This desire usually arose on the basis of their own negative experiences with a system that they wanted to improve or because of a wish to develop new exciting initiatives for other AYAs with cancer.

Improving the health care system

Some of the AYAs were motivated by wanting to improve the health care system either with reference to concrete ideas they wanted to implement or because of their own health care experiences that they wanted to address (quotes 14 and 15).

Codetermination

Real participation

Most AYAs felt that they were invited to join the service user groups on the basis of an equal dialogue with health care professionals. It was a strong motivational factor to be assigned responsibility and codetermination, as was meeting health professionals who listened and took one seriously (quote 16). Several of the AYAs who had participated in workshops or youth panel meetings often returned to attend again because they could see the ideas presented in the groups were brought into reality, and thus their participation made a difference for others (quote 17). This short way from idea to action as well as seeing one's ideas become real seemed to be very motivating.

Influence on one's own everyday life

Codetermination also had an impact on the AYAs' lives. Influence on their everyday lives was a great motivation for some of the participants because they felt they regained control which they had lost during hospitalization (quote 18). The opportunity to make use of those initiatives decided at the meetings (e.g., events in Kræftværket) was not directly a motivation factor for the participants. It was more the participation itself and the participation process that seemed motivating.

Discussion

In this qualitative study investigating AYAs' reasons to participate in service user involvement initiatives during a cancer course, we found that the possibility to contribute and codetermination were perceived as weighty reasons. Few studies have been carried out on this topic. However, gaining confidence, feeling a sense of achievement, altruism, and helping hospital staff have shown to be reasons why young people participate in service user involvement projects.^12,13 Notably, altruism was rediscovered in our study as most participants expressed a wish to help future AYA cancer patients. Furthermore, this is in line with a study on adult cancer patients participating in service user initiatives where the possibility of improving existing services motivated the participants.¹ More research on service user involvement in adult oncology and hematology shows that participants were motivated to participate by the possibility to tell their own specific cancer story about challenges throughout their cancer course.¹⁴ In our study, we also found that community with other AYAs with cancer influenced everyday life and normality, and the participation almost had a therapeutic effect. Positive outcomes of being involved as service users are well known, including therapeutic benefits resulting from increased social interaction.^15,16

In this present study, being assigned the responsibility of meeting health professionals who listened and took one seriously was perceived as a sign of a high level of involvement, which seemed motivating. The participants could see their ideas and suggestions for new initiatives being implemented, which gave them a feeling of high involvement and control over aspects of the work. This contrasts with a study on adult rheumatoid patients' reasons for participating as service users. These patients felt seen and heard, but without the power to make decisions.¹⁷ A reason why the participants in our study felt a high degree of involvement might be that the health professionals involved played a retracted role primarily as observers during the workshop sessions and only as coordinators during youth panel meetings. In the aforementioned study on adult rheumatoid patients, however, the participants in the user groups created a distinct community by being in the same situation.¹⁷ This is in line with our study where the participants were motivated to participate in the service user involvement initiatives by being together with other AYAs.

Moreover, normality in terms of being together with like-minded peers, getting a sense of everyday life, and doing something meaningful was perceived as a strong motivation for all AYAs to participate in the service user initiatives in our study. This is in line with existing studies showing that contact with peers with cancer creates a mutual sense of support and care.^18,19 In summary, the service user involvement initiatives in Kræftværket met some of the personal needs and wishes that AYAs with cancer have called for in previous studies, including contact with other cancer patients of the same age and maintaining everyday life and normality.²⁰

Strengths and limitations

All 12 participants in this study provided rich descriptions about reasons to participate in Kræftværket's service user involvement initiatives. The participants consisted of six women and six men with a broad age representation (16–29 years), and they represented seven different cancer diagnoses, which are among those most often affecting AYAs in Denmark.²¹ We did not observe any notable differences in types of responses due to gender, ages, or diagnoses. However, the oldest AYAs often deepened their responses more, thus, generally these interviews lasted longer.

Even though our sample represented diversity due to gender, age, and diagnoses, 9 out of 12 participants were in training at the university level or had completed higher education. It supports a well-known problem in research; the difficulty of attracting those with lower socioeconomic and educational backgrounds.²² Moreover, Kræftværket is the first department for AYAs with cancer in Denmark based on organizational user involvement.²³ Therefore, the study is limited to this single institution with a relatively small sample of AYA patients. The results might have looked different if AYAs from other institutions had participated, but unfortunately this was not possible.

Another limitation of the study should be taken into consideration as more of the coauthors (H.P., L.L.H., and M.H.) were involved in the service user initiatives analyzed in the study, which could lead to potential biases. However, interviews, transcriptions, and primary analysis were conducted by S.H. and K.A.B., who were not involved in the service user initiatives in Kræftværket, and scientific roles, attitudes, and biases for those involved were discussed during the process of writing this article.

Conclusion

In conclusion, we found that the reasons to participate in service user involvement initiatives were driven by the following outcomes for the participants: a feeling of normality, codetermination of one's own everyday life, and altruism in terms of helping others. In summary, participation had a positive impact on the illness course of AYAs with cancer. Also, our study has implications for practice in terms of planning service user involvement initiatives. We learned that AYAs with cancer liked to participate in groups with a nice and cozy atmosphere comprising other AYAs in the same age range with cancer. Furthermore, the AYAs appreciated space to create ideas and being productive without interference from health professionals. Future research is recommended for the betterment of service user involvement, including clarifying AYAs perceptions of the level of involvement.

Footnotes

Acknowledgments

Thanks to all participants in the study for their time and willingness to participate and to the Danish Child Cancer Foundation for the funding of the project.

Author Disclosure Statement

No competing financial interests exist.

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