Climbing the "ladder of participation": engaging experiential youth in a participatory research project.

Funk, Anna ; Van Borek, Natasha ; Taylor, Darlene 等

In Canada, approximately 150,000 youth aged 15-25 years are estimated to be street involved. (1) "Street involved" is defined by the United Nations as "Any boy or girl ... for whom the street in the widest sense of the word ... has become his or her habitual abode and/or source of livelihood, and who is inadequately protected, supervised, or directed by responsible adults". These youth are at risk for many negative health outcomes, including HIV, hepatitis C and sexually transmitted infections, addictions and overdoses, due in part to corresponding high-risk behaviours involving sexual practices and substance misuse. (2-4)

In Vancouver, British Columbia, approximately 16% of young persons who inject drugs are infected with HIV, and 57% with hepatitis C. (5) Injection drug use is reported by 41% of youth in a cohort of Vancouver street youth who use an illicit drug in addition to marijuana, and 36% of street youth surveyed in another Vancouver-based study. (6,7) The Youth Injection Prevention (YIP) Project aimed to obtain the perspectives of street-involved youth in Vancouver regarding youth injection and prevention behaviours. The results will contribute to an understanding of factors, supports and services that can prevent youth from injecting drugs and promote youth resiliency. In order to best obtain the youth perspectives on these topics, experiential youth were hired to facilitate the focus group discussions. "Experiential", in this case, meant experience with street entrenchment and/or illicit drug use. The inclusion of experiential youth as co-researchers placed the YIP project within the range of research described as participatory research (PR).

Participatory research and youth involvement

PR, in its various forms, is an increasingly popular method of research in public health. (8-15) The aim of PR is to engage individuals who have personal experience of the research topic as co-researchers and implementers. Some of these PR projects have involved marginalized youth in areas of relevance and importance to them. (9-13,15)

"Youth PR" studies have been criticized as involving youth as "tokens" or as research subjects, resulting in low levels of youth self-advocacy and empowerment. (16) In previous studies, youth co-researchers and peer helpers were engaged based simply on age similarity rather than their life experience or ability to relate. (12,17-20) Full involvement of marginalized youth in participatory research requires that they be involved in all aspects of the research process from inception to dissemination. (16) Unfortunately, few research projects involve truly experiential youth, while even fewer involve these youth at a level of engagement where they are empowered by their participation. (12,20)

Roger Hart's "Ladder of Youth Participation" is a modelling tool that describes 8 possible levels of youth participation in the context of research projects (see Figure 1). The creation of the ladder in 1992 was part of a global drive for participation, with the purpose of being a directive tool for this relatively unknown field. (21,22) It has been used previously to evaluate youth participation in research, including youth participation in harm reduction interventions involving illicit drug use. (20,23) The rungs at the bottom of the ladder, which consist of manipulation, decoration, and tokenization of youth in research projects, are considered "non-participatory". Through figurative "climbing" of the ladder, participation occurs with increased engagement and active involvement.

The Youth Injection Prevention Project

The main objectives of the YIP project were to explore the factors that street-involved youth identify as preventing themselves and their peers from injecting, and factors that promoted resiliency. These themes were explored through focus groups with street-involved youth. Involvement of youth with personal experience and insights as co-researchers was expected to increase relevance and validity in the process and interpretation of the findings, as well as potentially providing research capacity and personal growth. Youth co-researcher participation in the project was intended to involve focus group moderation, note-taking and validating the research findings. This paper describes how youth co-researcher participation in the YIP project evolved from the initial intent--shown as climbing a metaphorical "participatory ladder"--and the successes, challenges and lessons learned during this process. Ethical approval for the YIP study was obtained from the University of British Columbia/Providence Health Care Research Ethics Boards.

Climbing the ladder of participation

Community organizations providing service to street-involved youth and interested in collaborating on the YIP project were identified during the funding proposal development. These organizations distributed the youth co-researcher job description and encouraged appropriate youth to apply. Ten youth, most of whom were experiential, were hired to conduct the focus groups. Although the intent of the project was for youth to co-facilitate the focus groups, we did not know if this would be feasible and what role the youth would be able to take. At the beginning of the project, the youth according to Hart's ladder would be classified as non-participatory, i.e., rungs 2 (decoration) and 3 (tokenization).

The youth and academic researchers developed a bilateral agreement of respect and expectations. During the initial training, four youth who needed to focus on other priorities left the research team; six youth remained with the team until focus group completion. Of these six youth aged 19 to 24 years, three were female, one identified as having Aboriginal ancestry and two had previously injected drugs.

The youth co-researchers provided input into the interview and focus group guides for face validity (rungs 5 and 6, consultation and shared decisions). The project coordinators designed and led the qualitative research methods training which consisted of three general aspects: 1) how to lead focus groups and take field notes, 2) sensitivity training and 3) community partner site visits to familiarize the youth co-researchers with the sites where the focus groups were held. The sensitivity training helped the youth develop an awareness and understanding of themselves, of group dynamics, and of their behaviour and role within both the team and the focus groups. Mock focus-group training sessions were held in which the youth and project coordinators performed role playing.

[FIGURE 1 OMITTED]

In addition to the formal training sessions, optional team-building activities occurred, including movie nights, bowling, and participation in community events. These activities improved team cohesion and allowed the coordinators to better understand the youth co-researchers' needs and growth within the project. The youth were encouraged to reflect and discuss their learning and achievements throughout the project. During the training and development of the YIP project, the youth co-researchers were involved at participatory levels on the metaphorical ladder rungs 4 and 5.

The training enabled the youth co-researchers to co-facilitate the focus groups, with one youth moderating discussions and a second taking field notes. The YIP team conducted 10 focus groups with 45 street-involved youth and these were audio-recorded. The project coordinator or assistant coordinator attended the focus groups to provide support. Throughout the data collection, the YIP youth co-researchers were involved at rungs 4 and 5 of Hart's ladder. The youths' pre-determined roles in data collection as focus group moderators and note-takers were consistent throughout the project, although their skills and confidence increased.

The initial plan was for the project coordinators to code the focus groups transcripts. However, the youth requested training in the basics of qualitative analysis methodology. The youth were provided with quotes from the transcripts; they grouped similar concepts on poster boards and identified and named themes. Themes identified by the youth were compared with those identified by the study coordinators and these were discussed to develop consensus. By initiating their own participation in creating the coding framework, the youth were situated on rungs 6 and 7. Not all focus group transcripts were coded by the youth and continued involvement at this level was based on their motivations, skills and interests.

Oral presentations of the preliminary findings were accepted at two Canadian conferences. The youth requested to co-present at these conferences; as youth attendance was not included in the initial proposal, no funding was allocated. The youth co-researchers therefore took the initiative to organize two fundraising activities: a presentation and silent auction of donations solicited from the community and a "drag show" performed by one of the youth co-researchers. To reduce the registration costs, the youth volunteered at the conferences and one youth received a scholarship.

The project coordinators accompanied four youth co-researchers to the Canadian Conference on AIDS/HIV Research and two other youth presented at the Canadian Public Health Association conference. Each youth, with input from the coordinators, chose the quotes to correspond with the themes they presented. Presentation practice sessions were held prior to the conferences. Preliminary findings and experiences at the conference were shared with the community partners at a "community forum". Youth's overall involvement in this stage is described as being on the metaphorical ladder rungs 7 and 8.

Further dissemination

Once the youth's official involvement in the project was complete, youth continued to be engaged in activities to disseminate results. These activities included: 1) a presentation in a masters of public health qualitative research course at a local university, 2) the creation of a "how to involve experiential youth in research" video--the story board and editing of the video, including interviews with the YIP team, were co-led by a youth co-researcher, and 3) a successful application for a grant to disseminate the study findings through a video. (24)

This paper is informed by a review of the researchers' field notes and the minutes from the team meetings and debriefing sessions, semi-structured interviews with the youth at the completion of the project, and insights shared during the making of the "how to involve experiential youth" video.

DISCUSSION

The progression of youth participation seen throughout the YIP project can be metaphorically linked to the climbing of a participatory ladder, similar to that created by Roger Hart. (21) In our study, we found that the youth co-researchers moved between various levels of participation in a way that was not predicted in the initial design of the project. The ease with which youth were able to exert their autonomy in project involvement, and the ability of the project coordinators to gauge appropriate project involvement of the youth at each stage, were made possible through the flexibility of the project as well as through mutual understanding between the youth and project coordinators, which was strengthened through training and team-building sessions.

Overall, we saw the youth climb up the ladder towards increased participation (see Table 1). However, not all youth climbed at the same speed or participated at the same level at each stage of the project. This flexibility in movement between levels of participation allowed youth to determine their own level of involvement based on their ability. This contrasts with predetermining uniform expectations of all youth regardless of their strengths or concerns.

The knowledge and expertise of marginalized youth and other non-academic populations have often been disregarded in other settings. (21,25) Such views are changing and lay community members with real-life expertise are increasingly valued as effective interventionists and co-researchers in their own communities. (11,26,27) Engaging youth with first-hand experience of the research issue has a variety of benefits; it can address issues of trust and respect of the focus group participants and ensure relevance of the research. (9,14,28,29)

Due to many challenges associated with involving non-academic experiential youth in research, some researchers believe that PR is not the most effective method of gathering valid results from marginalized populations. (15) These challenges include time limitations and steep learning curves. (11) To accommodate increasing participation (including training regarding qualitative research and presentation skills and fundraising to enable conference attendance) and differential learning during the YIP project, extra sessions were created and deadlines extended, which had budget implications; this has been noted as a common issue in youth PR. (10,11) Despite this accommodation and as noted in other studies, it was not feasible to fully involve the youth in all aspects of the YIP project, as many methodological techniques were too advanced to teach in our short time frame and not all youth were interested in or capable of long work hours. (11,15,23) Furthermore, some communities and research agencies may not have confidence in experiential youth involvement and expertise, (11) however, this was not evident in the YIP project.

Involvement of youth co-researchers creates a more relevant research project as they bring their realities and their interpretation of the findings is based on experience. It also benefits the youth co-researchers themselves. As found in other PR studies where youth have opportunities to impact their surrounding communities, the YIP youth co-researchers were empowered and developed "pro-health" identities. (11,12,14,17,20,30) The positive outcomes for "at-risk" youth co-researchers in the project were potentially greater than for youth chosen simply for age similarity. (20) Other studies have also found that engagement in public health research and initiatives contributed to youth making positive health and developmental choices, such as re-enrolment in school, reducing/stopping drug use, and addressing behavioural issues. (9,11,30) The YIP co-researchers also gained public speaking experience, research skills, and opportunities to network with public health agencies and organizations, leading to further employment opportunities, appreciation of services available and the gaining of confidence to advocate for themselves and others with service providers; these are common benefits of youth PR. (11-13)

CONCLUSIONS/RECOMMENDATIONS

Hart's ladder is a useful tool to assess the level of participation of youth in a research project. However, youth do not remain static or climb in one direction; instead they may move up and down the ladder. Team members bring varying skills and interests and so climb at different paces; they may also attain different rungs for different activities and components. Youth should be encouraged to climb to the highest level they are able and comfortable to reach. The individual's and team's achievement and growth should be acknowledged but individuals within the team should not be compared.

The team-building exercises that occurred throughout the YIP project were invaluable and led to increased understanding and respect between the youth co-researchers and the project coordinators. As the youth gained confidence in their research ability and developed interpersonal communication skills, they became empowered to advocate for their own needs. To ensure that youth "truly" participate and determine their own level on the ladder of participation, we recommend that future studies involving experiential youth include frequent team-building exercises and evaluations of youth growth within the project.

We suggest that the benefits and challenges of involving youth in participatory research be assessed before embarking on such projects to ensure that both the youth and the research achieve maximum success.

Received: February 14, 2012

Accepted: April 28, 2012

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Anna Funk, MSc, [1] Natasha Van Borek, MScPPH, [1] Darlene Taylor, BScN, MSc, [1,2] Puneet Grewal, [2] Despina Tzemis, MPH, [1] Jane A. Buxton, MBBS, MHSc, FRCPC [1,2]

Author Affiliations

[1.] British Columbia Centre for Disease Control, Vancouver, BC

[2.] School of Population and Public Health, University of British Columbia, Vancouver, BC

Correspondence: Dr. Jane Buxton, School of Population and Public Health, University of British Columbia, 2206 East Mall, Vancouver, BC V6T 1Z3, Tel: 604-827-4001, Fax: 604-822-4994, E-mail: [email protected]

Acknowledgements: The authors thank the youth co-researchers, the participants, partner organizations, Catharine Chambers, Larissa Coser, and Elizabeth Saewyc for their time and contribution to this work. Funding for this project was provided by the Vancouver Foundation. Further information about the process, successes, challenges, and lessons learned throughout the YIP project are available through a link on the BCCDC Harm Reduction website available at: http://www.bccdc.ca/prevention/HarmReduction/YIPProject/default.htm or through communication with the corresponding author, Jane Buxton ([email protected]).

Conflict of Interest: None to declare.

Table 1. Location of Youth Co-researchers on
the Participatory Ladder Throughout the YIP

Ladder Level      Description        Reasoning          YIP

1. Manipulation   Youth are told     Attract            Preparing the
                  to support a       attention,         proposal and
                  cause or project   increase           decision to
                  and pretend it     likelihood of      include
                  was inspired by    obtaining          experiential
                  them, when it      funding, or        youth.
                  was actually       portray
                  created by         community
                  established        relevance.
                  researchers.

2. Decoration     Youth are asked    Attract            Hiring of the
                  to show support    attention,         youth.
                  for a cause, but   increase
                  researchers do     likelihood of
                  not pretend it     obtaining
                  was inspired       funding, or
                  solely by the      portray
                  youth.             community
                                     relevance.

3. Tokenism       Youth led to                          Hiring of the
                  believe they                          youth.
                  have a "voice",
                  but Attract
                  attention,
                  increase
                  likelihood of
                  their opinions
                  bear little
                  weight in
                  research
                  obtaining
                  funding, or
                  portray
                  community
                  planning or
                  implementation.
                  relevance.

4. Youth are      Youth are well     Youth are given    Youth trained
assigned and      informed of        the experience     to facilitate
informed          their role,        of being           and take notes
                  which is           involved in        at focus
                  inflexible, but    research.          groups; visits
                  false              Potential added    to community
                  impressions are    validity or        sites;
                  not given to       relevance to       instruction
                  youth or to the    research           (re:
                  public.            methodology.       qualitative
                                                        research).

5. Youth are      Youth asked to     Increase in        Developing
consulted and     critique and       validity or        questioning
informed          give advice on     relevance of the   guide; youth
                  projects created   project to youth   feedback (re:
                  by established     communities.       how focus
                  researchers.       Give youth the     groups went
                  Youth are well     experience of      and suggest
                  informed of        being involved     changes for
                  their role and     in research        next focus
                  the effect of      projects.          group).
                  their inputs on
                  the research
                  projects.

6. Adult          Youth invited to   High validity      Performing
initiated and     share in           and relevance of   qualitative
shared decision   decision making    the project to     analysis;
making with       and running of     youth              developing
youth             the project that   communities.       presentations;
                  adult              Give youth the     practising
                  researchers have   experience of      presentations;
                  created. Youth     being involved     presenting at
                  and adult inputs   in research        the community
                  are taken into     projects.          forum.
                  account.
                  Example:
                  participatory
                  action research.

7. Youth          Youth initiate     Project is         Youth request
leading           and run a          relevant to        qualitative
projects          research project   youth              research
and initiating    on their own,      communities.       training;
action            with some advice   Youth are able     youth select
                  and support from   to express their   quotes for
                  adults and other   voices to their    presentations;
                  researchers.       full ability.      youth request
                  Most decisions     Youth gain the     to attend
                  are made by        experience of      conference in
                  youth, and the     creating and       order to
                  adult roles are    running a          present; youth
                  subject to youth   research           lead
                  requests.          project.           fundraising
                                                        activities.

8. Youth and      Youth and adult    Adults grow to     Youth lead
adults sharing    researchers are    understand the     fundraising
in decision       involved in an     youth              activities;
making            equal              perspectives.      youth develop
                  partnership, but   Youth are          funding
                  the project        empowered and      proposal for
                  itself is          are also able to   dissemination
                  inspired by        learn from         video.
                  youth. Decision    established
                  making is split    researcher
                  equally between    expertise.
                  both parties.