NIHR Research for Patient Benefit - STOPtoolkit Phase 1 results: a qualitative exploration of oral health care among stroke survivors living in the community

BACKGROUND/AIMS: Dental disease is highly prevalent among stroke survivors, 48% may have untreated tooth decay and 61% may have gum disease. [1]Little is known about the experiences of stroke survivors with regard to their oral health care; there is a need to identify barriers and facilitators to oral self-care behaviours and access to community services after stroke. The aim this study was to use qualitative methods to explore these experiences in depth with community dwelling stroke survivors and relevant health and social care professionals (HCPs)

METHODS: Semi-structured interviews were carried out with stroke survivors and 3 focus groups were conducted with HCPs.23 Stroke Survivors Stroke survivors were eligible if they were >17 years, had a confirmed diagnosis of stroke (ischaemic or haemorrhagic), had been discharged from hospital for at least 2 months and had on-going self-care needs (defined as having difficultly with at least one aspect of self-care)19 Health and Social Care Professionals HCPs were eligible if they had professional experience of working with stroke survivors in a community setting. Participants were; 6 Speech and Language Therapists, 2 Dieticians, 3 Nurses, 1Occupational Therapist, 1 Physiotherapist, 3Professional Carers and 3 Dental Professionals Thematic analysis was conducted.

RESULTS: Stroke survivors (SS) were aged 28-94yrs, nine were female, all lived in NW England. Average modified Rankin Score was 2.4 (range 1-4).

Knowledge and beliefs: The majority of SS had basic knowledge around oral health care, many beliefs around the consequences of not looking after their oral health related to social presentation (appearance/bad breath), for example: “...it’s still important to...well, it’s the smell, isn’t it. I don’t like bad breath. I can’t stand bad breath. No, it is important, really it is” (SS23)

Routine: Routine appeared to be important in helping people to brush their teeth on a regular basis. The disruption to life caused by stroke tended to have a negative impact on routine and oral care: “When I went into hospital I didn’t brush them at all in the hospital…So when I come out it was easy, the same, carrying on doing the same … I had my stroke in 2011 and you can see I was brushing my teeth every day up till then and then in hospital I didn’t bother, and it’s so hard to get back into” (SS16)

Disability: Although the ability to perform self-care tasks such as teeth cleaning improved over time for some, others had continuing disabilities that impeded their abilities to
care for their own mouths: “After I had my stroke it was a whole different story because I couldn’t open my mouth sufficiently. I lost the use of my dominant hand, cleaning your teeth when you can’t open your mouth and it’s the wrong hand it’s difficult” (SS12)

Training and confidence: HCP staff commented on the lack of training around supporting people with oral health care: “there's nervousness…now, to…clean a mouth. Because we work in a …risk averse environment…so I…if you're dealing with somebody that's got swallowing issues, and they're nil by mouth, and there's aspiration risk, I think…staff would take a lot of training to have the confidence...” (FG1)

CONCLUSION: Stroke can have adverse effects on oral hygiene through the disruption to life causing loss of routine and from the disabilities that survivors are left with. Support however is lacking and could be improved. Following on from this study, a toolkit is being developed to improve support for oral care among stroke survivors.

ACKNOWLEDGEMENTS: We are especially grateful to all those who made this research possible - our participants. A big thank you to the 23 Stroke Survivors (and their families), and the 19 Health and Social Care Professionals who contributed their time and expertise.