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Recruitment of Medically Fragile Children and Adolescents: Lessons Learned From Qualitative Research

2012; Elsevier BV; Volume: 27; Issue: 1 Linguagem: Inglês

10.1016/j.pedhc.2012.08.001

1532-656X

Regena Spratling,

Adolescent and Pediatric Healthcare

Section EditorRita H. Pickler, PhD, RN, PNP-BC, FAANCenter for Professional ExcellenceCincinnati Children's Hospital Medical CenterCincinnati, Ohio Rita H. Pickler, PhD, RN, PNP-BC, FAAN Center for Professional Excellence Cincinnati Children's Hospital Medical Center Cincinnati, Ohio Conducting research presents both anticipated and unanticipated challenges for researchers. These challenges can be compounded when studying children and adolescents because they warrant careful consideration in research as a vulnerable population. Anticipated challenges can be addressed in study design and implementation; however, challenges that are not anticipated cost researchers time and energy. Researchers can benefit from shared information and lessons learned in conducting research to enhance the research process for all persons involved. These lessons learned often are not documented, and little is known about the recruitment challenges in studying a child or adolescent population. This article is a report on recruitment experiences with a unique population of medically fragile children and adolescents from two studies (Spratling, 2011Spratling, R. (2011). The experiences of medically fragile adolescents who require respiratory assistance (Doctoral dissertation, Georgia State University). Retrieved from http://digitalarchive.gsu.edu/nursing_diss/13Google Scholar; Spratling, in pressSpratling, R. (in press). The experiences of medically fragile adolescents who require respiratory assistance. Journal of Advanced Nursing, http://dx.doi.org/10.1111/j.1365-2648.2012.05979.x.Google Scholar; Spratling et al., 2012Spratling R. Minick P. Carmon M. The experiences of school-age children with a tracheostomy.Journal of Pediatric Health Care. 2012; 26: 118-125Abstract Full Text Full Text PDF PubMed Scopus (7) Google Scholar). The goal is to highlight the challenges in recruiting medically fragile children and adolescents so that others can learn from these experiences. The population of study was medically fragile children and adolescents, a subset of children with special health care needs who have complex chronic health conditions and often depend on technology and specialty care (Buescher et al., 2006Buescher P.A. Whitmire J.T. Brunssen S. Kluttz-Hile C.E. Children who are medically fragile in North Carolina: Using Medicaid data to estimate prevalence and medical care costs in 2004.Maternal Child Health Journal. 2006; 10: 461-466Crossref PubMed Scopus (41) Google Scholar; Gordon et al., 2007Gordon J.B. Colby H.H. Bartelt T. Jablonski D. Krauthoefer M.L. Havens P. A tertiary care-primary care partnership model for medically complex and fragile children and youth with special health care needs.Archives of Pediatric and Adolescent Medicine. 2007; 161: 937-944Crossref PubMed Scopus (164) Google Scholar). The research to date on this population has been focused primarily on the families of medically fragile children and adolescents. The new studies were focused on the experiences of the children and adolescents themselves. An initial pilot study explored the experiences of school-age children with a tracheostomy. Specific aims of the study were to gain an understanding of the daily lives of the children, their experiences with family and schoolmates, and how the children perceived health care and care by nurses (Spratling et al., 2012Spratling R. Minick P. Carmon M. The experiences of school-age children with a tracheostomy.Journal of Pediatric Health Care. 2012; 26: 118-125Abstract Full Text Full Text PDF PubMed Scopus (7) Google Scholar). A purposive sample was used to select child participants who had experienced a tracheostomy and were able to answer questions without assistance from parents. Eligible child participants were identified by health care providers in a clinic who cared for children with tracheostomies. A recruitment flyer was mailed to the parents of potential participants. They were asked to contact the researcher by e-mail or phone if they were interested in having their child participate in the study (Spratling et al., 2012Spratling R. Minick P. Carmon M. The experiences of school-age children with a tracheostomy.Journal of Pediatric Health Care. 2012; 26: 118-125Abstract Full Text Full Text PDF PubMed Scopus (7) Google Scholar). The number of eligible participants identified for this study was 10 (Spratling et al., 2012Spratling R. Minick P. Carmon M. The experiences of school-age children with a tracheostomy.Journal of Pediatric Health Care. 2012; 26: 118-125Abstract Full Text Full Text PDF PubMed Scopus (7) Google Scholar). Of the 10 families contacted by the researcher, six families agreed to participate. The study yielded five interviews (with children ages 7 to 11 years). One child did not participate because of time and travel constraints; the child lived approximately 4 hours from the clinic, and the child's school and extracurricular activities limited available time for the child to meet with the researcher. Despite the researcher's willingness to travel and flexibility regarding a time to meet with the child and the parent, this child did not enroll in the study. Thus study recruitment was 50% of the number of identified eligible participants. The researchers learned lessons from this study that evolved into the design and implementation of the subsequent study. These lessons included a better understanding of the type and depth of data that can be obtained from children of different ages, as well as the limitations of data posed by inclusion of only children with a tracheostomy. The subsequent study explored the experiences of medically fragile adolescents requiring respiratory assistance (Spratling, in pressSpratling, R. (in press). The experiences of medically fragile adolescents who require respiratory assistance. Journal of Advanced Nursing, http://dx.doi.org/10.1111/j.1365-2648.2012.05979.x.Google Scholar). Respiratory assistance was defined as being dependent upon respiratory assistance such as tracheostomies and ventilator support, mechanical ventilation via a tracheostomy, or positive airway pressure support via a face mask (i.e., bi-level positive airway pressure). This study aimed to gain an understanding of the adolescents' daily lives; their experiences with family, friends, and school; their future plans; and their experiences with nursing care. The purposive sample included adolescents who were 13 to 18 years of age and were able to participate without parental assistance (Spratling, in pressSpratling, R. (in press). The experiences of medically fragile adolescents who require respiratory assistance. Journal of Advanced Nursing, http://dx.doi.org/10.1111/j.1365-2648.2012.05979.x.Google Scholar). Eligible adolescent participants were identified by health care providers in hospital-based clinic and office settings. In addition, nurses and respiratory therapists at the clinics and offices aided in identifying eligible participants. A recruitment flyer was mailed to parents that included information about the study for both the parent and the adolescent. Interested participants were instructed to contact the researcher by e-mail or telephone. In addition, reminder flyers were mailed, flyers were posted for providers in the office, and the researcher made herself available at the office settings. The initial estimate for potential participants in the clinic and office was 40. However, only 18 eligible participants were identified, and 11 participants were recruited. Thus the number of participants was approximately 25% of the initial estimate of eligible participants, and actual recruitment was greater than 50% of the actual number of eligible participants. The focus on health care providers as “gatekeepers” to access of parents and adolescents proved to be a valuable strategy in recruitment.The lessons learned from this study revealed the need for a broad range of recruitment strategies. The focus on health care providers as “gatekeepers” to access of parents and adolescents proved to be a valuable strategy in recruitment. The lessons learned from the first study built a foundation for recruitment in the subsequent study, enhancing participation and ultimately the success of the study. The focus on health care providers as “gatekeepers” to access of parents and adolescents proved to be a valuable strategy in recruitment. Recruitment strategies were directed toward potential participants and their parents and health care providers. The recruitment strategies included mailings, flyers, and information sessions. Another recruitment strategy was researcher flexibility and availability. All these strategies were found to be successful in the recruitment of child and adolescent participants. Mailings were sent to families of eligible participants. These mailings contained a brief overview of the study and contact information for the researcher. The mailing also included information directed toward the adolescents. If no response was received, a reminder mailing was sent 3 weeks after the initial mailing. Four participants were recruited using this approach, including two participants who immediately telephoned or sent an e-mail message upon receiving the initial mailing and two participants who sent an e-mail message or telephoned months after the initial and reminder mailings. One of the mothers who contacted the researcher months after the mailings stated that this was on her “to do” list and she had just now had the chance to make contact about her adolescent participating in the study. Information sessions were offered to providers in the clinic and office settings to enhance their awareness of the study. An information session at the office included a brief presentation of the study and a handout that summarized the study during a provider meeting. At the clinic, providers and clinic staff were met with individually to discuss the study. During this time, most eligible participants were identified for recruitment in the study. This approach also invested the providers and staff in the study. Flyers were posted in areas accessible to providers only to remind them of the study at the time they were seeing patients who might be eligible. For example, flyers were posted at the desk of each nurse as a reminder when they were speaking to parents of eligible participants over the phone. The providers were instructed to contact the researcher regarding eligible participants; the researcher then contacted potential participants by mail. Aiming flyers at providers was deemed a better approach for identifying eligible participants because of limitations that were found in posting flyers in areas visible to the adolescents and their families. For example, the clinic setting hosted multiple clinics throughout the week, and thus the flyers had to be posted and removed on a constant basis because institutional review board approval specified that the clinic was to be used for recruitment. Although no participants were identified using the recruitment approach directed toward providers, three participants contacted the researcher by phone after reviewing the mailings and speaking with their provider about the study. Therefore the flyers aided in reminding providers about the study and providing points of discussion between providers and potential participants. The researcher made herself available to potential participants and their parents in the clinic and offices for questions about the study. In addition, if potential participants expressed an interest to a provider about the study, upon making a routine call, the provider or staff would remind the parent of the researcher's availability at the next scheduled clinic visit. Four participants were recruited at the clinic using this approach. The parents and adolescents stated that they had received the mailings and reviewed the information about the study but had not had time to call or plan an interview time. Parents and the adolescent participants noted that conducting the interview at the clinic was convenient with regard to time and location. Researcher flexibility and availability thus was viewed as critical to the recruitment process. In both studies, difficulty was encountered in identifying eligible participants from a small population, and an insufficient database existed from which eligible participants could be identified. This difficulty was also a methodological issue in a qualitative study of adolescent sexual behaviors in Chinese British families (Yu, 2009Yu J. Qualitative research on the attitudes toward teenage sexual behavior of Chinese British families: Methodological issues.Journal of Transcultural Nursing. 2009; 20: 156-163PubMed Google Scholar). Additionally, despite recruitment efforts, a number of eligible adolescents did not participate, and concerns existed that eligible participants may not have been identified. In a study of researchers' experiences with child-focused studies, children with desirable attributes were believed to have been picked for the studies, ultimately affecting the research findings (Powell and Smith, 2009Powell M. Smith A. Children's participation rights in research.Childhood. 2009; 16: 124-142Crossref Scopus (153) Google Scholar). This factor may have been the situation in the present studies as well, although every effort was made to include all those who were eligible. Engaging health care providers and staff and asking them to assist with the study proved to be very effective in recruiting participants for these studies. Davies et al., 2009Davies B. Larson J. Contro N. Reyes-Hailey C. Ablin A. Chesla C. Cohen H. et al.Conducting a qualitative culture study of pediatric palliative care.Qualitative Health Research. 2009; 19: 5-16Crossref PubMed Scopus (21) Google Scholar recommended use of familiar, accessible settings for recruitment and data collection and work with “front-line” providers to aid in recruitment in cultural research. Powell and Smith, 2009Powell M. Smith A. Children's participation rights in research.Childhood. 2009; 16: 124-142Crossref Scopus (153) Google Scholar described health care providers as one of the many gatekeepers who protect children in research; however, these gatekeepers also influence recruitment by encouraging or discouraging participation. Parents' concern for their child or adolescent often delayed their participation in the study until after they discussed the study with their provider and the researcher. Parents' concern for their child or adolescent often delayed their participation in the study until after they discussed the study with their provider and the researcher. The researcher must maintain flexibility with the research process and adapt to the situations that present in the study, keeping the best interests of the child and adolescent participants and their families as the priority. Parents' concern for their child or adolescent often delayed their participation in the study until after they discussed the study with their provider and the researcher. Stevens et al., 2010Stevens M. Lord B. Proctor M. Nagy S. O'Riordan E. Research with vulnerable families caring for children with life-limiting conditions.Qualitative Health Research. 2010; 20: 496-505Crossref PubMed Scopus (41) Google Scholar, in a study of families caring for children with life-limiting conditions, reported that parents deferred the decision about their child's participation in a study until after meeting with the researcher. This finding also was noted in the present study. In retrospect, the published recommendations for future research were directed toward the population of study, excluding the research process as a source of experience and knowledge to share with others. Stevens et al., 2010Stevens M. Lord B. Proctor M. Nagy S. O'Riordan E. Research with vulnerable families caring for children with life-limiting conditions.Qualitative Health Research. 2010; 20: 496-505Crossref PubMed Scopus (41) Google Scholar agreed that few documented examples existed of how researchers approached challenges in research with vulnerable populations. Sharing this information in research findings can aid other researchers and add to the general research knowledge. Recruitment for a study presents challenges, especially in a population of interest that includes medically fragile children and adolescents. Engaging health care providers, parents, and the child and adolescent participants themselves is vital when recruiting participants. The sharing of these challenges by researchers can aid others in recruiting participants and in anticipating the challenges that exist in conducting research.