3.3 Data management
3.3.3 Response formats
The completeness of responses on information on the care recipients was good with missing values per data item being less than 5%. However, the completeness of responses on information on the carers was poor with a very high percentage of missing values, especially when responses depended on whether the responding carer was a family or non-family carer.
This included, for example, factors influencing caring role and difficulties encountered in providing oral hygiene care. Such responses were filtered, selecting only family carers or only non-family carers and a summary information provided but no further analysis carried out.
Skip questions (G4 to G9, Appendix 6) were also filtered to select responses only from carers who were involved in the provision of oral care for their care recipients.
45
Several data items were recoded or collapsed for analyses.
• Carer’s age was grouped as ≤ 44, 45–54 and 55+ years.
• Care recipient’s age was grouped as 18–24, 25–34 and 35–44 years.
• Due to a very low response on country of birth for the carers and care recipients, country of birth was removed from analysis.
• Individuals coded as living alone were few in number and included as living in the community.
• Source of income for carers was dichotomised into wages or salary and carer allowance/payment/other.
• Source of income for care recipients was dichotomised into disability support pension and worker’s compensation/other.
• Self reported general health was reduced to three categories – very good-excellent, good, and poor-fair.
• As there had been no change in the living arrangement for almost 90% of the care recipients in the last five years, residential movements were not considered for analysis.
• From the list of primary (main) disabling conditions, spina bifida, quadriplegia and head injury were grouped together as ‘Other primary disabling condition’. People with Down syndrome were included in the intellectually disabled category but not those with Autism as they do not uniformly have intellectual disability.
• Number of carers providing care was grouped as 1 carer, 2–4 carers and 5+ carers.
• Three types of communication were analysed – verbal, non-verbal and little or no effective communication.
• Two types of ‘relationship to main care recipient’ were identified – family carers and non-family carers.
• Length of contact was entered in months and converted to years for analysis.
• Number of care recipients under charge was grouped as 1 care recipient and 2+ care recipients.
• For toothbrushing frequency for both the carers and care recipients, several times a week, less than once a week and once a day were recoded as once a day or less, labelled as infrequent toothbrushing.
• Time to clean teeth/dentures per session was coded as ≤ 1 minute, 2–5 minutes and ≥ 6 minutes.
46
• Cleaning ability of carers was dichotomised to able to clean all teeth and able to clean only some teeth.
• Frequency of dental visits among care recipients was initially described as never had a dental visit, only with a dental problem, every 2 years, every year and every 6 months and don’t know. Later the first two categories were collapsed as “never/only with a problem”, every 2 years and every year collapsed as ‘every 1–2 years’. Only six people responded ‘don’t know’ and so were treated as missing.
• Dental check-up/treatment pattern was described as without sedation, with sedation and under general anaesthetic. Never had a dental treatment was treated as missing.
• Frequency of dental visits among the carers was also recoded as ‘never/only with a problem’, ‘every 1–2 years’ and every 6 months.
• Responses for effects of caring role on carers (satisfied, stressed, angry, frustrated, weary/lack of energy, muscle pain in neck/back/limbs) were dichotomized to ‘not at all/rarely’ and ‘sometimes/fairly often/very often’.
• A summary score was calculated for the five individual questions on negative effects of caring role on carers – stress, anger, frustration, weariness/lack of energy and muscle pain in neck/back/limbs, which was recoded as one or more negative effects for scores over 20 (response of agree, strongly agree).
• For weekly hours of care provided by carer, ‘< 20 hours’ and ‘20–39 hours’ was collapsed as ‘< 40 hours’ and labeled as low weekly hours of care, ‘40–100 hours’ was labeled as medium weekly hours of care and ‘> 100 hours’ was labeled as high weekly hours of care.
Food
As there were several carers who responded that their care recipients ‘never’ ate anything by mouth, a new category 0= never was added. Then, responses for each food item were recoded as follows:
0 = never = 0 times a week
1 = less than twice a week = 1.5 times a week 2 = 2–4 times a week = 3 times a week 3 = 5–7 times a week = 6 times a week
4 = more than once a day = 10.5 times a week
Then, individual food items were combined into 3 categories of food as follows:
• The frequency of sweetened tea/coffee and flavoured milk (Milo, chocolate milk, Nesquik, etc.) were combined as frequency of sweet drinks.
47
• The frequency of soft drinks, cordials and juices were combined as frequency of acidic drinks.
• The frequency of biscuits, cakes, puddings, chocolate – and sugar-based confectionery, sweetened dairy products (ice-cream) and syrups, jams, and sweet spreads were combined as frequency of sweet solids.
A summary variable was computed for the frequency of different types of food (sweet drinks, acidic drinks, sweet solids), ranging from no such food to low, moderate and high.
Oral Health Impact Profile (OHIP)
Four questions were asked from the Oral Health Impact Profile (OHIP). They were:
How often during the last year, has your main care recipient…
Had trouble sleeping (psychological disability) Had pain and discomfort (physical pain) Had unsatisfactory diet (physical disability) Been irritable (social disability)
…because of a dental problem?
Response options were on a 5-point Likert scale, never= 1, rarely= 2, sometimes= 3,
‘fairly often= 4 and very often= 5. ‘Sometimes’, ‘fairly often’ and ‘very often’ were coded as negative impact on quality of life. It was felt that the many ‘don’t know’
responses were meaningful, for example as an indicator of the care-providers awareness of the care recipients’ everyday experiences. Therefore, they were retained and reported as a sixth category. For all other associations, the “don’t know” responses were treated as
“missing”.