Resource use
In this chapter we report the results from the parental resource use questionnaire, including the number of appointments and the support received in minutes from each health-care, social services or educational professional. From the HCP questionnaire we report on training to provide support and perceived confidence in providing support.
A total of 21 out of 103 questionnaires were received from parents or carers (response rate 20%; see Appendix 1). The average age of children was 2 years 3 months and 16 out of 21 had a GFT. The mean number of appointments over the previous 12 months was 2.25, none of which had been arranged to discuss PSS. When asked if they would have liked such an appointment, nine caregivers said no, seven said yes and three did not know.
Eight out of 21 respondents completed the question on appointments and support, with five reporting receipt of PSS over eight appointments. A summary is set out in .
Reported time spent on PSS during the previous 12 months: parent reports
Parents reported between zero and four appointments where they discussed psychosocial issues, with time spent on emotional support lasting up to 60 minutes, averaging at 32.5 minutes. In terms of the unit cost of the HCPs’ time, the time spent on PSS ranged in cost from £0.00 to £317.37 per child per year, with an average of £76.42 per family for the year at 2017 prices.73
Respondents were asked who they went to for PSS the last time they had a worry or anxiety about their child’s feeding. The replies were school nurse or dietitian (n = 5), community clinic (n = 3), doctor or community nurse (n = 2), online support (n = 1), SLT (n = 1) and a social group (n = 1). Three respondents reported that the issue they sought support for was resolved, 17 reported that it was partially resolved and one reported that it was not at all resolved. Only one respondent reported that a HCP had offered the opportunity to speak to another parent but that they did not take it up because they were already in contact with a parent. Twelve out of 21 (57%) reported that they would have liked such an opportunity, eight (38%) reported that they would not and one (5%) did not know.
Satisfaction with care
When asked about their satisfaction with the support received the last time they had a worry or anxiety about their child’s feeding, 16 reported being fairly or very satisfied, three reported being partially satisfied, one reported being not very satisfied and one reported being not at all satisfied. When asked about their overall satisfaction with the care related to their child’s GFT or feeding problems, eight reported being fairly or very satisfied, six reported being partly satisfied, four reported being not very satisfied and one reported being not at all satisfied.
Health-care professionals’ confidence and training in providing psychosocial support
A total of 31 out of 109 questionnaires were received from HCPs (response rate 28%), who were asked about how confident they were in providing PSS to families using a five-point Likert scale as well as about what training, if any, they had received to do this. Responses (including type of professional) are provided in and .
Respondents by profession
Confidence and training in providing PSS
Few of the HCP respondents (7/31) had received specialist training for PSS. Among these, specialist training for PSS was usually part of medical or formal professional training. Only one nurse (the only one to report being very or fairly confident) had received training and this was provided by the NMCN CEN (online and DVD training). There was a tendency for those with more confidence in providing PSS to have received relevant training. These results support the interview data from phase 2, during which a lack of specific training was identified.
Willingness to pay
A total of 168 respondents started the survey. Among these, 148 consented to their data being used for the purpose of research. A total of 103 completed the rating of service A (usual care) and 96 completed the rating of service B (enhanced support involving some provision for access to a psychologist and a more formalised approach to peer parental support) (see Chapter 3). Respondents were asked how much they would value a package representing the current provision and one representing the enhanced provision. Because parents would not be asked to pay for this PSS, and we did not wish to imply that they would, we used the preferred term ‘value’. illustrates the types of respondent – professional or parent – who completed the survey. The majority of respondents were HCPs (72%).
Background of respondents
provides information about respondents’ household composition. Report Supplementary Material 7 provides additional demographic detail including sex, age, education level, employment status, annual household income, country of residence and ethnicity.
Respondents were predominantly female (96%), aged between 25 and 54 years (85%), residing in England (80%), living with a partner (70%) and in paid employment (81%); 86% had a degree at either bachelor’s or master’s level and the majority were from the higher-income brackets. This reflects that the survey was completed mainly by HCPs.
sets out the frequency of values, expressed in Great British pounds, attached to service A, which represents usual care for PSS, and service B, which represents the enhanced package.
Frequency of values assigned to services A and B
represents the change scores in the values respondents assigned to services A and B and demonstrates that most people’s scores changed between 0 and 300 when valuing the two different services in favour of service B.
Change scores assigned to services A and B.
sets out the means, standard deviation (SD) and 95% confidence intervals (CIs) of values assigned to services A and B. Because a preliminary analysis indicated that the data were skewed, a non-parametric Wilcoxon signed-rank test was used to measure the difference in values between the two services. The median ranks for service B were significantly higher than those for service A, demonstrating a preference for enhanced support with involvement of a psychologist and parental peers, which was statistically significant (n = 96; p < 0.001).
Mean values assigned to services A and B
A two-sample t-test (unequal variances assumed) was used to assess whether or not there was a significant difference in WTP between parents and HCPs. Mean WTP for service A (carers, £252.17; HCPs, £262.33; p = 0.8090) and WTP for service B (carers, £306.52; professionals, £395.89; p = 0.0519) showed no significant difference in WTP between them. There was also no significant difference in WTP by household income group for service A (p = 0.5550) and B (p = 0.6852) using a one-way analysis of variance.
Conclusion on use of resources for psychosocial care
The number of parents or carers responding and reporting discussion on psychosocial issues during routine appointments was small and, as a result, the evidence on service costs to the NHS, social services and educational services is not strong. This reflects the challenge of researching a relatively small population. Those who responded may have been motivated to respond if they had experienced more discussion around PSS and so may have had higher than the average contact. The average estimate of costs is £76.42 per child per year at 2017 prices,73 with the highest single estimate being £317 for one child for 1 year. These figures suggest that the implementation of PSS into regular appointments would possibly add a percentage point to overall costs. In a previous study,28 we reported the overall net costs of GFT placement compared with pre-gastrostomy costs to be £147.96 per week per child at 2002 prices.28 This is equivalent to £10,500 per year at 2017 prices.73
We were not able to estimate value in terms of quality of life (to estimate opportunity cost to services) but instead provided WTP estimates, which were intended to assess the societal value of the services. When the cost estimates were compared with the estimates of WTP, which were £259.00 (95% CI £227.73 to £292.05) for scenario A (n = 96) and £374.00 (95% CI £344.14 to £404.82) for scenario B, it becomes clear that these values far exceed the costs estimated from our sample. However, a limitation of these values is that they can be biased by the respondents’ ability to pay. This was analysed in the analysis of variance, which showed no significant difference in WTP by household income.
Psychosocial support during appointments was provided by a range of HCPs, including doctors, nurses, teachers, dietitians, OTs, SLTs and health visitors. Appointments took place in hospitals, at GP practices, at community health centres and at schools. The professionals involved received salaries from different budget sources, there being no central budget for this care. Costs of support were therefore spread between a number of budgets. Parental peer support was valued but not offered consistently. Apart from our previous study on costs of gastrostomy,28 there is very little information on resource use and none for PSS for this cohort of children and families. Future studies may be required.
