Development of an online information and support resource for adolescent idiopathic scoliosis patients considering surgery: perspectives of health care providers

Macculloch Radha, Nyhof-Young Joyce, Nicholas David, Donaldson Sandra, Wright

Description

Adolescents with idiopathic scoliosis who are considering spinal surgery face a major decision that requires access to in-depth information and support. Unfortunately, most online resources provide incomplete and inconsistent information and minimal social support. The aim of this study was to develop an online information and support resource for adolescent idiopathic scoliosis (AIS) patients considering spinal surgery. Prior to website development, a user-based needs assessment was conducted. The needs assessment involved a total of six focus groups with three stakeholder groups: (1) post-operative AIS patients or surgical candidates (10-18 years) (n = 11), (2) their parents (n = 6) and (3) health care providers (n = 11). This paper reports on the findings from focus groups with health care providers. Methods Focus group methodology was used to invite a range of perspectives and stimulate discussion. During audio-recorded focus groups, an emergent table of website content was presented to participants for assessment of relevance, viability and comprehensiveness in targeting global domains of need. Specifically, effective presentation of content, desired aspects of information and support, and discussions about the value of peer support and the role of health professionals were addressed. Focus group transcripts were then subject to content analysis through a constant comparative review and analysis. Results Two focus groups were held with health care providers, consisting of 5 and 6 members respectively. Clinicians provided their perceptions of the information and support needs of surgical patients and their families and how this information and support should be delivered using internet technology. Health care providers proposed four key suggestions to consider in the development of this online resource: (1) create the website with the target audience in mind; (2) clearly state the purpose of the website and organize website content to support the user; (3) offer a professionally-moderated interactive support component; and (4) ensure accessibility of website information and support by considering the age, gender, reading level and geographic location of potential users. Conclusions Health care providers collectively identified the need for the development of an online information and support resource for adolescents considering surgery for AIS and their families and described the proposed website as a positive and needed adjunct to current clinical care.

Informations

• Publié par: biomed
• Publié le: 01 janvier 2010
• Nombre de lectures: 13
• Langue: English

Extrait

MacCullochet al.Scoliosis2010,5:13 http://www.scoliosisjournal.com/content/5/1/13

R E S E A R C H Open Access Research Development of an online information and support resource for adolescent idiopathic scoliosis patients considering surgery: perspectives of health care providers

1 21,3 11 Radha MacCulloch*, Joyce Nyhof-Young, David Nicholas, Sandra Donaldsonand James G Wright

Background Adolescent idiopathic scoliosis (AIS) is a structural lateral curvature of the spine arising during puberty in other- wise normal children [1]. While epidemiologic studies

* Correspondence: [e-mail] 1 The Hospital for Sick Children, Toronto, Ontario, Canada Full list of author information is available at the end of the article

estimate 1-3% of adolescents (10 to 18 years) will develop scoliosis, only 1-5% of these adolescents will receive spi- nal instrumentation and fusion for progressive curvature of more than 40°-50°. The clinical course of untreated scoliosis as an adult is controversial [1]. However, signifi- cant curves can cause deformity, increased frequency (although not necessarily severity) of back pain,

© 2010 MacCulloch et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Com- mons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduc- tion in any medium, provided the original work is properly cited.