Chapter 1: Introduction and background
I sought to recruit a diverse sample of participants from three stakeholder groups: adults with CD; adult household members; and healthcare professionals who work with adult coeliac patients. Seventy-three participants were recruited using seven recruitment methods (Table 4.1). Not all seven recruitment methods were employed for all three stakeholder groups.
Table 4.1 Number of participants recruited from three stakeholder groups using seven recruitment methods
Recruitment method Adults with coeliac disease with varying levels of adherence to
a gluten-free diet Household members Healthcare professionals All participants Adherent Partially- adherent Non- adherent Total 100 invitation letters posted by Coeliac
12 (80%) 4 (22%) 0 16 (47%) 10 (48%) N/A¹ 26 (36%)
13 invitation packs distributed by Norfolk and Norwich University Hospital (NNUH)
1 (7%) 1 (6%) 0 2 (6%) 0 3 (17%) 5 (7%)
Press release in local newspapers² 0 8 (44%) 1 (100%) 9 (26%) 8 (38%) N/A¹ 17 (23%)
Advertisements on Coeliac UK website² 0 3 (17%) 0 3 (9%) 2 (10%) 1 (6%) 6 (8%)
Advertisement on University of East Anglia (UEA) website²
2 (13%) 2 (11%) 0 4 (12%) 1 (5%) N/A¹ 5 (7%)
E-mail to the British Dietetic Association (BDA) gastroenterology specialist group
N/A¹ N/A¹ N/A¹ N/A¹ N/A¹ 12 (67%) 12 (16%)
112 invitation packs posted to GP practices
N/A¹ N/A¹ N/A¹ N/A¹ N/A¹ 2 (11%) 2 (3%)
Total4 15 (100%) 18 (100%) 1 (100%) 34 (100%) 21 (100%)3 18 (100%)3 73 (100%)
1. N/A indicates that recruitment did not take place for a particular stakeholder group using the method indicated (e.g. Healthcare professionals were not sent invitation letters posted by Coeliac UK).
2. Once I had recruited sufficient adherent participants through the Coeliac UK invitation letter and Norfolk and Norwich University Hospital (NNUH), I stopped inviting adherent adults with CD to participate and only invited partially-adherent and non-adherent adults with CD.
3. Percentages have been rounded up and, therefore, do not always appear to add up to 100% 4. Total shows the sum of participants and the percentage values in each column
4.2.1 Recruitment of adults with coeliac disease
and adult household members
Five methods were employed for recruiting adults with CD and adult household members.
Over one third of the participants who were recruited for this study responded to invitation letters distributed by Coeliac UK. Thirty-two Coeliac UK Members returned completed reply slips and information packs were posted to them along with a household member’s pack. Twenty-five adults with CD and 11 adult household members returned a reply slip.
To avoid over-recruitment of adults with CD who adhere to the GFD, rejection letters (Appendix 33) were posted to nine adults with CD. It was not necessary for me to send rejection letters to household members, partially-adherent adults with CD or non-adherent adults with CD as I did not receive an excessive number of volunteers from these groups.
I contacted all eligible volunteers to arrange face-to-face meetings to gain informed consent and to invite the recruited participants to complete a short questionnaire (Appendices 15, 16, 18 and 19). During the face-to-face meetings, some participants with CD advised me that they did not live with another adult and others told me that their household member/s had chosen not to be involved in the study. One female participant with CD requested that her daughter, who also has CD, was recruited for the study. An
invitation pack was sent to the participant’s daughter and she was also recruited. A female Coeliac UK Member and her spouse were excluded because she was diagnosed with the related condition, dermatitis herpetiformis, and not CD, which did not fit with the inclusion criteria (Chapter 4).
Information packs were distributed to adults with CD and adult household members by Norfolk and Norwich University Hospital (NNUH).
Two NNUH patients with CD (one adherent and one partially-adherent) volunteered and were recruited following the distribution of 13 information packs during consultations with healthcare professionals. No adult household members responded to the invitation packs handed out at NNUH.
Advertisements were placed in two local newspapers, on the University of East Anglia website and on Coeliac UK website.
Once a sufficient number of adherent participants with CD had been recruited, I invited partially-adherent and non-adherent adults with CD and adult household members to participate in the study. Following advertisements in two local newspapers (Appendix 26), on the UEA website (Appendix 28) and Coeliac UK’s website (Appendix 27), I received telephone calls and e-mails from people expressing an interest in taking part. Fifteen people were excluded at this stage: 13 adults with CD who were adherent to the GF diet; and two people who had not received a
positive CD diagnosis. Information packs were posted to 26 adults with CD and 12 adult household members who matched our inclusion criteria (Chapter 3). Ten adults with CD and one adult household member did not respond to the information pack. Despite having already recruited a sufficient number of participants who adhere to the GFD, I recruited a further two adherent participants who replied to the advertisement on the UEA website. These participants had very recently been diagnosed with CD and this increased diversity in the group of adherent participants, many of whom had been diagnosed for many years.
4.2.2 Recruitment of healthcare professionals
Four methods were used to recruit healthcare professionals.
Information packs distributed to healthcare professionals by NNUH
Following the distribution of 22 information packs to healthcare professionals at NNUH, I received three responses from healthcare professionals who were all recruited for this study.
Invitation packs posted to GPs and Practice Nurses in Norwich
The method that resulted in the least number of participants recruited (n=2) was the distribution of 112 invitation packs to GP practices. One GP and one Nurse Practitioner volunteered to take part and were recruited for the study.
156 Advertisement on Coeliac UK’s website
One healthcare professional responded to the advertisement on Coeliac UK’s website (Appendix 27) and was recruited for the study.
E-mail sent to the British Dietetic Association’s gastroenterology specialist group
Fourteen healthcare professionals responded to the e-mail sent to the British Dietetic Association’s (BDA) gastroenterology specialist group. Rejection e-mails were sent to two healthcare professionals because they lived and worked in Scotland, which did not fit the inclusion criteria for this study. Twelve healthcare professionals were successfully recruited following the BDA e-mail.