"They Need to Realise the Impact it Has on the Patient." Living with Constipation: The Views of Palliative Care Patients and Carers

Constipation is a leading symptom among palliative care patients and can cause physical, psychological, and social suffering. However, there is a dearth of research exploring the perspectives of specialist palliative care (SPC) patients and their carers who are living with constipation. This study aims to explore the patient and family experience of the assessment and management of constipation when using SPC services.
Qualitative, semi structured interviews were conducted with thirteen patients who were diagnosed with constipation, and five family carers, from one SPC unit in the United Kingdom. Data was analysed using thematic analysis.
Constipation impacted participants physically, socially and psychosocially. Symptoms included, severe pain, embarrassment and restrictive lifestyle. Prior to entering SPC unit patients and caregivers had private control of the management of constipation however upon admission to hospice this control was made public and transferred to SPC staff remit. Yet unless initiated by the patient the symptom was rarely discussed by staff.
Inconsistencies are evident in the experience of assessment and management of constipation within a single SPC unit. It was a long-enduring and distressing symptom for patients and families, therefore, should not be given a secondary symptom status by staff. Educating staff in communicating with patients about the symptom, and including the family in decision making, may help address the anxiety experienced by patients and their carers. Involvement of the wider multi-disciplinary team was linked with more positive experiences of constipation assessment and management