title: There are a few things you did not ask about my pain: writing on the margins of a survey questionnaire.
abstract: This qualitative study is a secondary analysis of comments written on survey questionnaires about pain mailed to community-dwelling persons with spinal cord injury (SCI) or amputation. Narrative comments were added by 54.1% of 797 respondents. The purpose of this study was to determine the characteristics of those who wrote comments and to understand what was being communicated in their comments. A qualitative content analysis was used to identify the major themes, subthemes, and thematic categories in the unsolicited comments. The overarching theme was desiring dialogue with the researcher. Presenting themselves as experts on living with pain because of a chronic disabling condition, respondents described personal experiences of living with pain, coping with pain, and educating others about pain. Examining comments and narratives written in the margins of quantitative survey questionnaires can add value to and extend understanding of survey findings and implications.
authors.affiliation: Biobehavioral Nursing and Health Systems, Department of Rehabilitation Medicine, University of Washington School of Medicine, Seattle 98195-7266, USA. cwarms@u.washington.edu
authors.forename: Catherine A
authors.initials: CA
authors.lastname: Warms
authors.forename: Helen M
authors.initials: HM
authors.lastname: Marshall
authors.forename: Amy J
authors.initials: AJ
authors.lastname: Hoffman
authors.forename: Erica J
authors.initials: EJ
authors.lastname: Tyler
mesh_terms: D000203:Activities of Daily Living; D000223:Adaptation, Psychological; D000671:Amputation, Surgical / Q000009:adverse effects* / Q000534:rehabilitation; D001294:Attitude to Health; D002908:Chronic Disease; D006233:Persons with Disabilities / Q000523:psychology* / Q000534:rehabilitation; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D033262:Narration; D015205:Northwestern United States; D024802:Nurse's Role; D015404:Nursing Methodology Research; D010146:Pain / Q000175:diagnosis / Q000209:etiology / Q000517:prevention & control / Q000523:psychology*; D010147:Pain Measurement / Q000523:psychology / Q000592:standards; D010351:Patient Discharge; D036301:Qualitative Research; D011788:Quality of Life; D012017:Referral and Consultation; D013119:Spinal Cord Injuries / Q000150:complications* / Q000534:rehabilitation; D011795:Surveys and Questionnaires