Women of childbearing age experience the highest prevalence of irritable bowel syndrome (IBS), yet little is known about their psychosocial and parenting needs, which may influence their children’s experience of future gastrointestinal or pain-related conditions. The aims of this study were to conduct qualitative interviews to understand the psychosocial and parenting needs of mothers with IBS who have young school-age children, and to assess mothers’ potential interest in and acceptability of a preventive parenting intervention program. Ten mothers with IBS who have young (age 5–10), healthy children were interviewed. Interviews were coded with thematic analysis and three themes were identified: (1) Guilt about how IBS impacts children, (2) Worry that children will develop IBS, and (3) Already on high alert for children’s health. All mothers expressed interest in an Internet-based preventive intervention and identified tools and strategies they would want included. Results demonstrate that mothers experience guilt about how IBS has impacted their children in their daily lives, concern that they need to pay attention to children’s early signs and symptoms that could indicate gastrointestinal problems, and worry about children developing IBS in the future—suggesting that a preventive intervention may address important concerns for this population.

Background Pain is a predominant symptom of inflammatory bowel disease (IBD), and is influenced by cognitive, emotional and behavioral factors. The cognitive-affective model of symptom appraisal (CAMSA) has been used to understand how youth view symptoms in chronic conditions. We sought to 1) determine how youth with IBD and their parents appraise pain, and how their perspectives fit within CAMSA, 2) explore health care providers’ understanding and communication about pain. Methods Participants included 19 youth ages 10-17 years with chronic IBD pain and their parents, and 5 IBD providers from a gastroenterology clinic. Separate semi-structured qualitative interviews with youth, parents, and providers were conducted. Interview prompts were adapted from CAMSA, previous studies of pediatric pain and symptom monitoring, and a qualitative study in adults with IBD pain. Interviews were analyzed according to principles of reflexive thematic analysis. Results Three key components of CAMSA (IBD Threat, Fear/Worry, Biased Attending) were identified in youth and parent dyads. Some youth showed Biased Attending, including difficulty disengaging, while other youth simply monitored pain. The overarching theme for provider interviews was Gastroenterologists view pain as a secondary (rather than primary) treatment issue. Conclusions CAMSA is potentially applicable to pain appraisal in youth with IBD and their parents. When health care providers communicate about pain, they should consider how symptom uncertainty may be influenced by threat, fear/worry, and biased attending. Further studies are needed to develop and test psychosocial interventions to reduce fear and threat of pain in youth with IBD in partnership with families and providers.