Innovations in Research with Medically Fragile Populations: Using Bulletin Board Focus Groups Karen Cook, PhD, RN1,2 Susan Jack, PhD, RN1, Hal Siden, MD., MHSc2,3 Lehana Thabane, PhD1, Gina Browne, PhD RN1 1 McMaster
BACKGROUND A new group of medically fragile young adults are graduating from pediatric palliative care with limited expectations to live beyond early adulthood. To date, there is scarce literature describing their experiences transitioning to adult care. Many describe this experience as falling off a cliff and being disconnected from supportive pediatric health, education and social services.
University, 2 University of British Columbia, 3Canuck Place Children’s Hospice
• New and growing population • Experiences are undocumented • Much to be accomplished with so little time Using traditional qualitative data collection strategies (Face to Face interviews, TC) is difficult because of the complexity of their conditions. Many of these young adults fatigue easily and require 24-hour attendant care; their independent function may be reduced to minimal movement of their index finger to control wheel chairs, computers and phones; use diverse communication abilities such as computer mediated voice recognition, typing or speech; and are geographically dispersed.
PURPOSE This study is an exploration of two uncharted territories: 1. The experiences of young adults with pediatric life threatening conditions living into adulthood, and 2. The development, implementation and evaluation of a novel research strategy to access medically fragile populations.
RESEARCH QUESTIONS 1. What are the experiences (opportunities and challenges) of young adults with pediatric life threatening conditions who have transitioned from pediatric to adult services? 2. What are the most significant supports and factors that will contribute to achieving their developmental goals? 3. What are the advantages and disadvantages of an online focus group designed to engage medically fragile participants with variable communication modalities and abilities, limited mobility, and who are geographically dispersed?
“I chose this pic of a 'future' key on a keyboard because, in my opinion, computers are the future. No matter what physically, I can/do always use computers to express myself”
• Purposeful sample of young adult (19 - 29 years) graduates of a children's hospice with pediatric life limiting conditions. DESIGN • Single descriptive and embedded case study (Yin, 2009) utilizing revelatory and unique cases that explores differences among and between groups of participants. Two groups of four young adults were recruited to participate in a 5 day Bulletin Board Focus Group (BBFG): an asynchronous modification of an online focus group. This innovative strategy:
SIGNIFICANCE
RESULTS (continued)
SAMPLE AND DESIGN
• • • • •
Empowers teens and young adults Enhances group conversation Strengthens research credibility Has no geographical boundaries Accommodates to multiple communication modalities and participants’ needs • Is a modality for CONNECTION
BBFG QUESTION DEVELOPMENT Questions derived from content analysis of: Face to face interviews with young adults, and clinical and online experts; documents; literature review Question Format requires inviting and engaging leads such as videos, short vignettes, and pictorial representations
RESULTS BBFG RESPONSE RATE • Participants averaged 11 posts per day.
AVAILABLE QUESTIONS
AVERAGE % COMPLETED QUESTIONS
38
95
38
97
BBFG QUESTION EXAMPLE “When you think about the future, what kinds of thoughts and feelings come to mind for you?” “Please upload an image or picture that represents your feelings and thoughts about the future. Tell us what your picture or image means to you about the future.”
“I believe that I'll be cured one day and be able to swim with strong muscles”
BBFG BENEFITS
Data Collection: Researcher • • • •
Reduced time and costs Higher retention rates Enhanced theoretical saturation Methodological rigor of data collection • Easier discussion with sensitive topics Data Collection: Participants • Flexible timing • Data collection is an intervention • Time to reflect and answer at their own pace • Text format facilitates a concise discussion • Novel and engaging format Data Analysis • Automatic and accurate verbatim transcripts • Text and video analysis supported within BBFG • Eliminates transcription costs time and errors • More potential for theoretical saturation The greatest strength of the BBFG is that the method is also an intervention. Participants reported they would highly recommend the experience and be willing to participate again: • “I liked the variety of the topics and the way the responses were text or video. I liked how your [sic] notified of new response so it's easy to answer.” • “Some of the topics really made me think and made me question some topics that I didn’t think about before.” An important limitation of this method was participant follow through on discussion threads.
CONCLUSION This paper describes one of the first attempts to employ an innovative research method to access an otherwise inaccessible population. The proliferation of social media, online discussions and text conversations makes this medium familiar and comfortable for young adults. Further, and the diversity of physical limitations and communication modalities among the participants in this study demonstrated the inclusiveness and adaptability of an asynchronous BBFG forum. BBFG discussion groups require intense preparatory anticipation of participant responses. Every question, phrase, image, and uploaded video requires scrutiny for appeal, functionality for a BBFG, and potential to expand and enrich the conversation. The quality of data generated remains dependent on the skills of the researcher and moderator in building an engaging, personalized and coherent discussion over several days using varied mediums. Continued refinement of these methods with other groups of hard to reach participants, more feedback about participants’ experiences, and further understanding of the essence of the online discussion that can extend its purposes beyond a method to an intervention, will continue to add merit to BBFG methodology. This BBFG gave voice to those previously unheard and is a major contribution to intervention strategies and opportunities for meaningful engagement with young adults with pediatric life threatening conditions.
ACKNOWLEDGEMENTS Sincere thanks to all of the young adults who shared their stories and experiences with me and who gave permission to share their stories and photos. I am sincerely honoured, and admire your strength, perseverance and wisdom. Your thoughts and comments were a constant marvel and truly inspirational. This work is dedicated to you with the intent that by telling your stories, transformative system changes will support your courageous and creative life investments.