The oral care experiences of palliative care patients, their relatives and healthcare professionals.

Abstract

Background: Oral symptoms in a growing number of people receiving palliative care are often neglected. Dental professionals are not always involved in palliative care and research on oral care of palliative care patients is scarce. Oral care is often inadequately delivered to palliative care patients while oral health problems can affect quality of life.

Aims: To explore the experiences of palliative care patients, their relatives/carers and frontline healthcare professionals regarding the oral care received or provided.

Methods: Blogs and discussion forums were used as the data source. Data were analysed using thematic analysis. Subsequently a qualitative systematic review was conducted. Studies exploring the oral care experiences of adult patients, their relatives/carers or healthcare professionals were included. Finally, a qualitative study was performed in a hospice and four palliative care patients, four relatives and four healthcare professionals were interviewed. Transcripts were analysed using thematic analysis.

Findings: The study of blogs and discussion forums identified three themes: ‘symptoms’, ‘procedures’ and ‘emotions’. Oral care was provided as a reaction to oral symptoms, rather than pro-actively, to improve quality of life. The qualitative systematic review identified that comfort seemed to be the goal of providing oral care. Patients, relatives and healthcare professionals reported different challenges in oral care. The psychological implications of patients were not able to speak, taste and swallow. The impact of oral symptoms and poor oral health did not seem to be acknowledged by relatives and healthcare professionals. The qualitative interview study revealed three themes: ‘performing oral care’, ‘effects on oral health’ and ‘enablers and barriers to oral care’. Interpretation of these themes contributed to the understanding of the essence of the phenomenon being studied: the participants’ experiences of oral care. Relatives and healthcare professionals shared the view that oral care was important to deliver holistic person-centred care. They relied on past experiences of caring, but both groups perceived that education and training were lacking. Patients reported poor access to dental care. Barriers to self-care or other oral care was patients’ fatigue as experienced by all study participants.

Conclusions: The data from the three studies highlighted what the oral care experiences of palliative care patients, their relatives and healthcare professionals are, within a context. Despite some commonalities, the oral care experiences tended to be different between the three groups. Oral care was considered an important part of delivering holistic care. Good oral care practices were identified that might be transferable to other settings where palliative care patients are cared for.