Twenty-seven participants were recruited − 15 from phase one (9 Female; 6 male) and 12 from the second phase (6 female, 6 male). Participant ages ranged from 23 to 73, with a mean age of 46. Socio-economic status, as measured by the NS-SEC showed a range, with 3.7% of participants being postgraduate students, or from ‘higher managerial and administrative’, ‘intermediate technical’, ‘semi-routine service’, ‘semi-routine clerical’ or ‘routine operative’ occupations, 7.4% from ‘lower managerial and administrative’ occupations, 11.1% from ‘intermediate clerical and administrative’ occupations, 18.5% from ‘higher professional traditional’ and ‘higher professional new’ occupations, and 22.2% from ‘traditional lower professional and higher technical’ occupations.

The modified version of the Wilson and Cleary model [24] is presented in Fig. 2. Six main overarching domains emerged from the interviews: symptoms; changes in everyday life; social impacts; psychological impacts; identity; and overall impact and quality of life. The final domain (‘overall impact and quality of life’) is distinct from functional and social impacts, as it includes overall perceptions and concerns with gum health (overarching views and ratings of gum health for example) rather than functional and social impacts which are rooted in more specific contexts and examples (e.g. having to eat food more slowly, avoiding smiling or laughing around people). A summary of the most common and perceived impactful items from the framework can be seen below, with a selection of quotes to illustrate these experiences (Tables 1, 2, 3, 4, 5 and 6). Despite the wide variety of symptoms, for simplicity the results are presented separately for gingivitis participants (with less severe symptoms – bleeding, inflammation, tender gums) and periodontal participants (with more severe symptoms – pain, receding gums, bad breath, swollen gum, loose teeth).

Fig. 2

Modified Wilson and Cleary model populated with data from the interviews

Symptoms

Bleeding was the most common self-reported symptom, with varying frequency, extent, duration, and locations where bleeding occurred. While concern varied, most participants recognised bleeding as a sign something was not right. Participants from both groups rationalised bleeding initially but became more concerned the longer it lasted. Common triggers included brushing and flossing. The visual nature of blood was concerning, even more so on rare instances when blood was seen on periodontal participants’ food in social situations. Several periodontal participants also described a bad or metallic taste when symptomatic. One periodontal participant described seeing pus in their gums, causing confusion and shock, while one gingivitis participant also reported the presence of pus. Gum recession was more often associated with increased symptom severity in periodontal participants, and sometimes attributed to oral health habits, ageing and wear and tear. Although several gingivitis patients reported gum recession this was less extensive. For some participants, particularly periodontal, recession proved a concern, given fears it could not be reversed.

Symptoms were occasionally referenced interchangeably (e.g. reddening, inflammation and swelling), or linked to other outcomes – for example, links between swelling and pus, pain, sensitivity, discomfort and reddening. Numerous sensations were described, including “sore”, “pain”, “irritated”, “sensitive”, “uncomfortable”, “tender”, and “throbbing”, sometimes together and sometimes interchangeably, with painful experiences likened to toothache on occasions by several periodontal participants. The presence of pockets, loose teeth, tooth loss and throbbing were all described by participants with more severe symptoms. Pain and discomfort were reported roughly equally by both groups, but sometimes used interchangeably with “discomfort” and “tender” among gingivitis participants. Unique symptoms for gingivitis participants included one-time mentions of ‘fluffy’ teeth, ‘furry’ tongue, and weight loss for one individual whose gingivitis stopped them eating for a short period. Additionally, fear of symptoms and progression was generally greater among gingivitis participants.

Although less common, bad breath was perceived to greatly impact periodontal participants who experienced it. For one participant this played on their mind in meetings, or when meeting new people at work, while another described its effect on everyday interactions such as hugging or having to face people when paying. Mechanisms to mask the smell included gum, mouthwash, extra deodorant and even smoking according to one periodontal participant, which was seen as preferable to anyone noticing bad breath. Some periodontal participants were able to accept severe symptoms such as loose teeth, citing hereditary factors and the conditions inevitability. While most participants with advanced symptoms were keen to avoid this stage, one periodontal participant described wanting to get loose teeth removed quickly to minimise impacts on their life.

Table 1 Example participant quotes—symptoms Changes in daily life

Participants from both groups avoided certain foods, or changed to foods requiring less chewing to avoid aggravating their gums, or getting food stuck between their teeth which led to further complications and symptoms. For gingivitis participants this included crusty bread, peppercorns, seeds, popcorn and steak, while periodontal participants mentioned nuts, pork scratchings, raw vegetables, toast, spinach and rice. Apples, chewy meats, crisps, hard fruits and toffee were mentioned by both groups. Other changes included where participants chewed in their mouth, often associated with flare-ups of symptoms, experienced by both groups but more commonly by periodontal participants. Several participants (two periodontal, one gingivitis) reported feeling that they ate more slowly when symptomatic to compensate, with one periodontal participant associating this with feeling self-conscious around others. Issues with chewing were only mentioned by gingivitis participants, while those with more severe symptoms were more likely to describe difficulties drinking in certain parts of their mouth.

Changing toothbrushes was slightly more common among periodontal participants, who mostly changed to electric brushes, which were generally seen as more effective at tackling symptoms, and occasionally softer brushes to ease stress on the gums. Similar patterns were seen with gingivitis participants, with one also switching to a firmer brush. Changes in technique were found in both groups. While some participants (from both groups) became more vigilant with brushing, others (more often gingivitis participants) felt they should avoid brushing parts of their mouth due to the associated pain, with one participant skipping brushing altogether at certain points. Mouthwash was used by participants in both groups, sometimes to ease or calm gum-related symptoms. Difficulties were noted in flossing by both groups, specifically keeping to routines, and pain and bleeding it brought on. Gingivitis participants seemed to experience less pain or soreness through flossing. Most knew they should floss regularly, with some participants from both groups citing its positive impact. Interdental brushes were seen to lead to less bleeding and were preferred by a number of participants, particularly those with more advanced symptoms.

Table 2 Example participant quotes—changes in everyday life Social impacts

Despite being less common, issues related to social situations were still perceived to impact on participants. Some (more often periodontal participants) described being hesitant to smile at points to avoid others seeing their mouth or symptoms, with photographs being problematic. One gingivitis participant mentioned similar previous issues with laughing. Coping mechanisms were also cited, including one periodontal patient who covered their mouth with a hand in order to prevent anyone seeing their mouth, while another hesitantly talked to people at a 45-degree angle to conceal their breath. Concerns over talking and having to hide symptoms were present among gingivitis participants as well. Both gingivitis and periodontal participants had been concerned about other people noticing their symptoms and what others might think of these, with participants from both groups also having felt self-conscious about their condition at some point. One periodontal participant was concerned their symptoms could affect speech and pronunciation, while others felt conversation flow was interrupted due to pain, and some perceived that personal relationships and intimacy were affected by bad breath.

Table 3 Example participant quotes—social situations Psychological impacts

Many participants (from both groups) felt guilty or bad about their symptoms, sometimes due to infrequent flossing and interdental brushing, or not brushing properly or frequently enough. Some subsequently spent longer brushing than necessary at times to compensate (roughly equal numbers from each group). Some periodontal participants were concerned about the need for additional treatment, sometimes due to health implications, sometimes for financial reasons. Regarding the former, several participants worried about the irreversibility of symptoms, or the worsening of these, along with perceived effects on their quality of life.

Both groups expressed frustration and irritation at having to deal with symptoms and associated habits, with one gingivitis participant expressing frustration at letting their situation get to that point. Periodontal participants who had been less successful at treating symptoms believed it would be hard to improve the overall state of their gums. Despite most participants being able to carry on without symptoms affecting them, some participants perceived that it occasionally impacted their mood, sometimes for extended periods. One gingivitis participant described their ‘miserable’ experience, while several periodontal participants described their ‘depressing’ situation, with another noting how ‘fed up’ they got. Participants from both groups also reported feeling embarrassed when symptoms were visible or active. One gingivitis participant described feeling anxious about other people noticing, while others felt they had been self-conscious even in non-social situations. On occasions increased symptom severity was experienced alongside an air of resignation regarding symptoms and their consequences.

Table 4 Example participant quotes—psychological and emotional impacts Identity

One periodontal participant felt their ‘horrible’ experience negatively affected their ‘self-image’. Comments from some periodontal participants on the perception that symptoms made them feel old aligned with previous statements from both groups on the advancement, or inevitability of symptoms with age, with some gingivitis participants noting associations with being neglectful, amid fears of losing teeth. Perceived activity limitations were noted, more commonly among periodontal participants, including physical activities and daily routines such as work and reading. While most felt their identity and symptoms were separate, some accepted their condition was now part of their identity, with one gingivitis participant linking this to their smile. Acceptance varied from several periodontal participants who seemed slightly disappointed about this, to those who seemed to embrace it, as it represented a healthy mouth or overcoming symptoms or fears. Similarly, while some seemed sad and resigned about their condition, other (often-older) participants were able to accept their situation and tried to get on with their lives.

Table 5 Example participant quotes—identity Overall impacts and quality of life

Fearing tooth loss at some point was common across the continuum, sometimes for aesthetic reasons, while some periodontal participants worried about functional limitations, difficulty eating and quality of life. Most understood this was a potential consequence of advancing symptoms, although those with less severe symptoms were often more afraid of this. Concerns that gum problems could be serious affected participants from both groups. Some periodontal participants described feeling unclean or unhealthy when discussing symptoms, while participants from both groups referenced general perceptions of unhealthiness and having symptoms. Links were also made to other health conditions such as heart disease by several periodontal participants. Some participants (from both groups) saw their symptoms as part of their overall health, with one gingivitis participant making associations with these and other conditions they experienced, describing the body as one system. Symptom severity and impact varied among participants, as did length of time and frequency at which these were experienced. Some had been dealing with symptoms for decades, while for some these had occurred only in recent months.

Table 6 Example participant quotes—overall impacts and quality of life