Parents’ and carers’ experiences of self-managing their child’s constipation: An online survey and nested qualitative interview study

Problem

Constipation affects 1 in 3 children in the UK. Symptoms can be distressing and have significant impact on the child’s and parent/carer’s quality of life. Managing symptoms early can reduce this impact. Parents/carers report reluctance to seek help from healthcare professionals and difficulty finding self-management support. We are conducting a UK-based needs assessment to inform the development of an accessible intervention to provide self-management support. Our key research questions are:1. What are parents/carers’ beliefs about their child’s constipation and attitude toward existing support resources?2. How are barriers and facilitators to self-management experienced by parents/carers and what does successful self-management look and feel like from their perspective?

Approach

This is a mixed methods study including survey and qualitative interviews.An online survey with parents/carers of children aged 6 months to 5 years has examined beliefs about constipation and attitudes toward existing support resources. The survey was distributed through charity partners, social media (free and paid advertisements) and community advertising (including nurseries, play centres). Semi-structured qualitative telephone interviews with a purposively selected sample of up to 30 survey respondents are being conducted to further explore barriers/facilitators to self-management and experiences of accessing support for their child’s constipation. The survey content and interview topic guides were developed in collaboration with public contributors and charity partners. Interviews are audio-recorded, transcribed verbatim and analysed using Reflexive Thematic Analysis.

Findings

Recruitment will be completed in February 2024. To date 300 participants have completed the survey and 22 interviews undertaken. Line-by-line coding of interview transcripts has identified preliminary findings centred on: parents/carers’ need to feel heard and listened to when seeking primary care support; their active role in daily management and the impact this has on family routines; the role of stigma around poo; concern about the long-term impact of constipation on their child’s development; the long-lasting process of noticing, navigating, and responding to the child’s toileting or bowel patterns; emotional reactions to seeing their child struggle; and desire for an answer to their child’s symptoms. Parents/carers report trying a range of management approaches and sources of support, but welcome a comprehensive resource that can provide practical support and management options in one place. Full results will be available at the conference.

Consequences

These findings identify and prioritise the knowledge, tools and support parent/carers need to enable them to manage their children’s constipation. This will inform the content and development of a new resource.