Background: Functional constipation is the most common chronic disorder in childhood with a great impact on family life. Treatment focuses on the behavioural nature of the disorder with toilet training and laxatives, with the goal of daily stool passage without difficulties. Management of care is predominantly carried out at home by parents, making them key partners in the paediatric care.

Aim: The overall aim of this thesis was to explore and understand childhood functional constipation through the experiences of parents.

Design and method: This thesis comprise two studies based on a phenomenological research method and design with an inductive reflective lifeworld approach using qualitative individual interviews to gather data. A theoretical framework was used in the analysis to further elucidate the findings.

Findings: Shame was the essential finding, providing the reason parents acted in certain ways and the result of the same actions. Study I showed that everyday life was put on hold due to the time and effort invested in the adaptations demanded by the constipation. This left the parents feeling lonely, guilty, and fighting frustrating battles as they tried to gain control by being always one step ahead. Study II showed that giving constipation treatment resulted in parents questioning their parental identity. Treatment needed to be affirmed, as doubt and second thoughts sometimes made parents give treatment against their own will as well as defying their child’s will, bordering on feelings of being abusive. The findings were interpreted in the light of theories of illness beliefs and good parenting beliefs, suggesting belief systems are the path into the parents’ feelings of shame. Re-evaluating the beliefs might diminish failure to adhere to treatment regimens.

Conclusions: This project shows that functional constipation is like other childhood chronic illnesses in respect of its importance and impact on everyday family life. Shame is a prominent feature of functional constipation experiences. However, the shame felt might be mitigated by targeting and re-evaluating the belief systems that form the lifeworld of the parents and family.

Background

This thesis investigates the multifaceted experiences and outcomes associated with childhood functional constipation, a condition that significantly affects children’s health and family life. Drawing on one quantitative and three qualitative studies, the research provides an increased understanding of how children and families navigate the challenges of diagnosis, treatment, and daily life with a child suffering from functional constipation.

Aim

The overall aim was to inform a more child- and family-centred perspective to functional constipation care by exploring the experiences of parents and children, and to evaluate a clinical treatment programme.

 Methods

Study I is a retrospective cohort review of medical records with pre-post intervention measurements. Children participating in a structured bowel management programme in a secondary outpatient clinic between 2015 and 2022 were recruited. Clinical variables were compared between the recovered and the unrecovered groups to identify predisposing characteristics and predictive factors for recovery.

Studies II and III have a qualitative design, presents interviews with parents about their experiences of having a child with constipation and of giving treatment at home. The same data set of 15 parents were used for both studies. The Reflective Lifeworld Research approach originating from phenomenology was used during analysis.

Study IV, also qualitative, presents interviews with 20 children aged between 6 and 14 about their experiences of having constipation and receiving treatment. Reflexive thematic analysis was used during analysis.

Findings

The first study demonstrates significant improvements in bowel function and symptom relief among children following the intervention. Structured care helped 44% of therapy-resistant children to reach cure or self-management abilities within six months. The study underscores the value of integrating clinical protocols with family education and support.

The second study reveals how childhood constipation disrupts family routines, emotional well-being, and social interactions as treatment support requires considerable attention and strength. Parents report feelings of frustration, helplessness, and isolation, often compounded by limited support from healthcare professionals. The findings highlight the need for more empathetic child and family-centred care strategies.

The third study uncovers the emotional and practical challenges involved in managing medication routines, feelings of abuse and inadequacy, while trying to maintain adherence. The study emphasises the importance of clear communication and sustained support to empower parents in their caregiving roles because they might question their parental identity.

The fourth study presents the child’s perspectives on functional constipation with associated treatments. It presents a close and realistic narrative of procrastination of toilet visits, fear of exposure of leakage in social situations, rectal enemas as both awful and relieving, and hope, while striving for control.

Conclusions

Together these studies offer a holistic understanding of childhood functional constipation, bridging the gap between clinical outcomes and family experiences. Families deal with physical symptoms, psychological defences, fear of social judgment, and struggles with treatment. This thesis offers actionable insights for children, parents, clinicians, and researchers to improve the quality of constipation care for children and their caregivers.