Towards an understanding of the information and support needs of surgical adolescent idiopathic scoliosis patients: a qualitative analysis

Background Informed decision making for adolescents and families considering surgery for scoliosis requires essential information, including expected outcomes with or without treatment and the associated risks and benefits of treatment. Ideally families should also receive support in response to their individual concerns. The aim of this study was to identify health-specific needs for online information and support for patients with adolescent idiopathic scoliosis who have had or anticipate having spinal surgery. Methods Focus group methodology was chosen as the primary method of data collection to encourage shared understandings, as well as permit expression of specific, individual views. Participants were considered eligible to participate if they had either experienced or were anticipating surgery for adolescent idiopathic scoliosis within 12 months, were between the ages of 10 and 18 years of age, and were English-speaking. Results Two focus groups consisting of 8 adolescents (1 male, 7 female) and subsequent individual interviews with 3 adolescents (1 male, 2 female) yielded a range of participant concerns, in order of prominence: (1) recovery at home; (2) recovery in hospital; (3) post-surgical appearance; (4) emotional impact of surgery and coping; (5) intrusion of surgery and recovery of daily activities; (6) impact of surgery on school, peer relationships and other social interactions; (7) decision-making about surgery; (8) being in the operating room and; (9) future worries. Conclusion In conclusion, adolescents welcomed the possibility of an accessible, youth-focused website with comprehensive and accurate information that would include the opportunity for health professional-moderated, online peer support.


Background
Scoliosis surgery is the most common elective paediatric orthopaedic procedure. Patient decision making about surgery involves weighing the risks of surgery relative to families' perception of the current deformity and the possibility for future progression. Conflicting research regarding surgical outcomes and the risk-benefit ratio of spinal surgery for adolescent idiopathic scoliosis invites further consideration for patients and families [1,2]. Accordingly, the decision to undergo surgery is an important and difficult one for adolescent patients and their families. For those who elect to proceed, significant support is required throughout the decision-making process and surgical experience [3]. Thus, two essential and related requirements for patients considering spinal surgery are accessible and relevant information and ongoing support [3].
Failure to fully address patients' and families' health information needs is frequently noted in the literature across health conditions [4][5][6][7][8][9][10][11]. Given resource restrictions in the usual outpatient setting, clinicians are typically unable to completely satisfy these informational needs. As a result, many families turn to the internet to increase their knowledge and seek support. However, current online resources provide variable, conflicting and often untrustworthy information, so even if families can find relevant information; they are unsure which information to trust [12].
E-health, defined as the application of the internet and related technologies in health care to improve access, efficiency, effectiveness, and quality of care, has the potential to partially address the unmet needs of patients and their families and augment clinical relationships [13][14][15][16][17][18][19][20]. A key issue for the development of appropriate and useful web content is to determine the needs of the user. The purpose of this study is to determine: (1) the perceived information and support needs of adolescents with scoliosis; and (2) how these reported needs for information and support can be addressed using internet technology for the development of a web-based interactive intervention.

Methods
Adolescent patients, selected from the orthopaedic clinic of The Hospital for Sick Children (SickKids), Toronto, were considered eligible to participate if they had either experienced or were anticipating surgery for adolescent idiopathic scoliosis (AIS) within 12 months, were between 10 and 18 years of age, and were English-speaking. Of the 20 potential participants identified as meeting eligibility criteria, 11 consented to participation, 6 refused to participate due to lack of interest and 3 could not be reached. The refusals were comparable to participants in regards to age (mean: 15 years of age: range 12-17 years of age), cultural background (22% African American, 78% Caucasian), and distance from hospital (mean: 50 km; range: 30-126 km).
A diverse sample of 11 participants who ranged in age (mean: 16 years of age; range: 10-18 years of age), sex, cultural background (9% Asian; 27% African American; 64% Caucasian) and distance from hospital (mean: 38 km; range: 5 km-113 km) participated in the study. Ethics approval from the Research Ethics Board at the Hospital for Sick Children (Toronto, Ontario) was obtained prior to study initiation. Informed consent was obtained from all participants prior to study participation and all participants were informed that focus group transcripts would be cleaned of identifying information to maintain anonymity and necessary steps would be taken to ensure participant privacy and confidentiality. All participants identified themselves to be regular computer and internet users. They identified keeping in touch with friends, playing online games, and researching school projects as the primary reasons for use of the internet.
The first focus group consisted of 5 participants (1 male and 4 female) and the second of 3 participants (all female). Three participants (1 male, 2 female) took part in one-on-one telephone interviews. Although the sample was predominately female, this number is reflective of the distribution of sex relative to AIS. Table 1 provides participant demographics and clinical data.
Focus groups were used as the primary method of data collection, as this forum encouraged both individual per- spectives and the development of a shared understanding of the perceptions of adolescent patients [21]. One-onone telephone interviews were held with those participants who were unable to attend focus groups due to scheduling conflicts or distance from hospital. Focus group size was chosen in accordance with the guidelines outlined by Merton et al. [22]. Focus groups were 85 to 110 minutes in length (mean = 97.5 minutes) and were facilitated by a research coordinator (MSW) with extensive focus group facilitation experience. A note-taker and observer were present to capture group dynamics and ensure that comments were not overlooked or misinterpreted. A semi-structured interview guide (see Appendix 1) was used to focus the discussion, while eliciting individual views and description of experiences [23]. An emergent website table of contents (see Appendix 2) and preliminary structural mock-up, based in part on the research team's prior experience and a thorough critical analysis of other websites and the literature, were also presented during focus groups and phone interviews to elicit feedback regarding content preferences and the flow and desired presentation of information and support.
Focus groups and telephone interviews were audiorecorded, transcribed verbatim and analyzed using NVivo http://www.qsrinternational.com qualitative research software. Transcripts were subjected to content analysis, concept saturation and theme generation, using 'long interview' qualitative research techniques [24]. Key concepts, categories and emerging themes were inferred from participants' comments. Based on established techniques for demonstrating rigor in qualitative research, trustworthiness of findings was verified through: (i) team coding clarification and consensus; (ii) referential adequacy through sufficient inclusion of text quotes as interpretation verification; (iii) member checking, and (iv) peer debriefing among team members and appropriate clinical and web technology consultants [25].

Results
Participants were actively engaged in focus group discussion and shared a range of perspectives. As adolescent patients, participants identified many unanswered questions unique to both their age and health condition and strongly endorsed the need for a customized, web-based informational and support resource. Based on the volume and poignancy of comments made, participants were concerned with: (1) recovery at home; (2) recovery in hospital; (3) post-surgical appearance; (4) emotional impact of surgery and coping; (5) intrusion of surgery and recovery of daily activities; (6) impact of surgery on school, peer relationships and other social interactions; (7) decisionmaking about surgery; (8) being in the operating room, and (9) future worries. See Table 2 for a summary of theme counts.

Recovery at Home
Participants wanted to know about expected after-effects of scoliosis surgery including numbness, stiffness, sensitivity and restricted mobility, and also were interested in tips for easing recovery discomfort. Teens wanted information about how to protect the scar against infection, how to shower, especially in the first few weeks, and sun exposure. One adolescent who had had surgery explained, "For the first month I had to keep a towel over it. Just because I wanted to -I don't know why, I just really wanted to -you were afraid it was going to sting and get infected" (Female participant).
Teens were concerned about insufficient pain control or conversely, dependence on painkillers. One adolescent had felt unprepared for dealing with the pain and discomfort: "I don't think there was anything I could have done to make me more comfortable. But in terms of being prepared, I wasn't really prepared for the pain -even when you get through the pain, you're constantly uncomfortable" (Male participant). Increased tangible support from others, specifically family, was noted as a necessity in recovery; however this sudden dependence was also found to be a challenge for teens.

The Emotional Impact of Surgery and Coping Strategies
The emotional impact of surgery in pre-and post-operative periods and how patients coped with their surgeryrelated thoughts, feelings, and concerns emerged as a significant topic of discussion in all focus groups and telephone interviews. Prior to surgery, adolescents described experiencing a range of emotions, including being "nervous", "excited", "anxious" and described "just wanting to get it done". To cope with their feelings and thoughts pre-surgery, adolescents described talking and spending time with family members or friends, making jokes about sur-gery, reading, listening to music, and educating themselves about the surgery itself. Post-surgery, participants described feelings of irritability, depression, frustration, and anxiety related to being left alone. One teen described transient feelings of regret post-surgery: "I think it was the fact that I was just sitting in that hospital bed and was thinking 'Why did I do this?' From that perspective [of being temporarily immobile] you really don't see the reason why you did it" (Male participant). Patients mentioned the importance of getting up and walking, having visitors in hospital and at home, and going out of the house to spend time with peers as methods of coping during the post-surgical recovery period.

Intrusion of Surgery on Daily Activities
Participants were eager to know how surgery and recovery would affect their daily activities such as sports including yoga, basketball, swimming, and ballet, and travel. The issue of whether the implanted hardware would cause difficulty with metal detection devices at airports and other secure locations was raised.

Impact of Surgery on School, Peer Relationships and Other Social Interactions
Patients also wanted to know how surgery would influence school attendance, social interactions, friendships,

Decision-making Related to Surgery
In general, the possibility of future progression should they not proceed with surgery ultimately influenced participants' decision to undergo surgery. Further, teens identified a desired change in appearance and a wish to "look all the more normal" as influencing their decision. These adolescents valued being able to make the decision independently, but with the support of others, and they wanted to know how others were diagnosed and came to their decisions to have surgery.

In the Operating Room
The adolescents were curious about instrumentation. They grappled with questions of whether they would feel the internal implants. Pre-operative adolescent participants also wanted to know what to expect in the operating room on the day of surgery. Specifically, patients wanted information about undergoing anaesthesia, including the time required to induce anaesthetization and if they would feel anything while unconscious. They were interested in a description of the operating room and whether they could bring a personal item into the operating room.

Future Concerns
Adolescents were worried about long-term surgical outcomes including effects on employment, pregnancy, and the possibility of future back discomfort or problems. Although these long-term concerns were identified, they were the least prominent of the themes, emerging the fewest times in the analysis.

Suggestions for Web-based Interaction
Adolescents identified changes or areas for improvement in the content, format and organization of the website mock-up. Adolescents overwhelmingly wanted the website to include an interactive or personalized component. For example, they felt that many of their informational needs could be met through online or virtual "social networking". Specifically, posted biographies or online discussion forums were selected as their preferred methods of online interaction. Participants wanted to share their own stories. This demonstrates the potential importance of social comparison as a coping method and the therapeutic effects of sharing one's personal story with others. Teens suggested including photos of real people who had undergone surgery for scoliosis and photos demonstrating outcome variation of curvature and scarring. One teen, who had been worried about how the surgery would impact his mobility and extracurricular activities, suggested adding "pictures of people actually doing things after surgery", as this would have helped him stay positive and hopeful.
Participants identified that just as the information on the website must be reflective of the unique needs of adolescent surgical patients, the website's design and organization should also be tailored to this particular group. The information should be clear and concise, and presented in a colorful interface with design elements reflecting teenage tastes. It was recommended that information be organized according to differing needs potentially dictated by gender, age, and type of user -patient or parent. As one participant explained, "I think it's [the site] more for the kids, because the parents obviously want to know stuff, but the kids are the ones actually going through it. So they have more questions than parents, I guess".

Discussion
Information about scoliosis surgery is required by patients and families for shared decision-making. Adolescents and families considering scoliosis surgery clearly seek specific information, including the expected outcomes with or without surgery and the potential risks and benefits of treatment. A minority of families seek either complete control over treatment decisions or abdicate decisionmaking control to their physicians [26]. The majority of patients want to share decision-making with their physicians [27]. Clearly, any information provided to patients and families as a prerequisite to effective decision making must be complete, accurate, and individualized.
Although the themes emerging from the focus groups were for the most part expected, the intensity of concern underlying certain themes was unexpected. Post-operative patients expressed serious concern about addiction to analgesics and worried about their self-weaning process during their recovery at home. Patients experienced fear and anxiety the first four to six weeks at home including fear of being alone and fear of waking in the night when family members were asleep. Patients also expressed disappointment in friends and dating partners who were unable to support them during their recovery. These teens indicated an increased emotional dependence on parents during this time and stressed the need for social support during the first month or two following hospital discharge. Based on these findings, an interactive, peer support component should be an integral part of a website designed for adolescent surgical candidates. Although these adolescents would like access to comprehensive information about surgery, they want to hear about it from the perspective of other adolescents who have undergone surgery themselves. An online discussion forum or posted biographies would give teens the opportunity to learn about surgery through the experiences of others, while giving those who have had surgery the opportunity to share their stories with others.
E-health has the potential to partially address the unmet needs of the family. Web-based information can be streamlined according to particular case profiles and population needs [28]. Individuals can access this information whenever and however they wish [13]. Research suggests that the impact of illness-related websites is enhanced by providing full and in-depth information [12] combined with the opportunity for interaction [13,29]. This may be particularly true of adolescents who tend to be relatively active computer users [30] and seldom participate extensively during health-care interactions. To enhance the effectiveness of e-health applications, web-based information and support should be reflective of patients and families information needs and their preferences for content and presentation style.
This study has several potential limitations. First, focus group and interview participants were pre-and post-operative patients from one hospital; and issues in other centres or regions may vary. However, the findings were reasonably consistent across focus groups and interviews, suggesting that the major issues relevant to designing an effective website were identified. Second, the sample size was relatively small. It was, however, representatively diverse. A larger and more diverse sample could uncover a greater range of information needs. However, the participants in this study provided what appeared to be a comprehensive description of needs for information, support features such as a discussion forum, individual peer perspectives and stories, and user-focused design elements. These data are guiding the design of a website for adolescents undergoing surgery and their families. The website will continue to evolve based on feedback received from its users.

Conclusion
In conclusion, adolescents welcomed the possibility of an accessible, youth-focused website with comprehensive and accurate information that would include the opportunity for health professional-moderated, online peer support.
(page number not for citation purposes) • What are the limitations to accessing the computer?
What would be an ideal website?
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