Procedure

For the purpose of the current survey, questionnaire packs were sent to a preselected sample of people, according to the study inclusion criteria, with instructions on how to fill out the survey and return it in the enclosed envelope. Mail surveys have historically been one of the cheapest and most efficient methods of survey distribution. As the researcher does not administer the survey, there are no issues with interviewer bias, and also the survey is taken in private with the assurance of anonymity. Therefore, there is likely to be less social desirability bias and discomfort talking about private issues. However, a mail survey is not

without drawbacks. Due to the fact that the survey is self- administered, participants cannot ask for clarification, meaning there is no way of definitely controlling the order the questions are answered in. In addition, many participants will not fill out the survey, either because they have poor literacy or vision, or simply because they cannot be bothered. In addition, this group of people does not represent an equal distribution of the sample, so the sample may be less representative than it was intended to be. As a solution to deal with sample bias, this research study requested the participants to read the study information sheet before making a decision about whether to take part in the study, to make sure they understood why the research was being carried out and what it would involve for them. They were also asked to submit a question if anything they read was not clear, or if they wanted more information they could contact the researcher at any point. Moreover, an attempt was made to provide appropriate instructions along with easy and understandable wording and format.

On behalf of the Principal Investigator (PI), a member of the Rehabilitation Research Group (RRG) forwarded the invitation pack to the ARP members. This included: the study invitation letter, information sheet, reply form (including contact details) and a freepost envelope sent to the ARP members. This was in order to protect the identity of the ARP participantsand for data protection and confidentiality reasons.

Interested ARP members returned the PI reply form and confirmed that they agreed to take part in the study. The PI screened their eligibility. If they were eligible the researcher then informed the RRG member which panel members were willing to participate in the study, so that study participation was logged on the ARP database. Then, for those who met the eligibility criteria, the PI posted the second package to their address. This included the consent form, freepost envelope, a booklet and the cover letter. The participants were asked to sign the consent form and complete the questionnaires within the next seven days and return them to the PI in the freepost envelope enclosed. The same process was undertaken for the NRAS members.

Additionally, the PI discussed the feasibility of recruiting via the NRAS with the Director of External Affairs in collaboration with NRAS’ Chief Executive. In the meantime, the PI applied to obtain approval from the University of Salford’s Ethics Committee. Subsequent to obtaining approval from the University Ethics Committee the following steps took place via NRAS.

A brief explanation of the study, including: the study advert together with the PI’s contact details (name, email address and phone number) was posted on the NRAS website. Those who were interested in participating then contacted the PI directly by email. Afterwards, the PI forwarded the same invitation pack to the NRAS members. These included: the study invitation letter, information sheet, reply form (including contact details) and a freepost envelope. Interested NRAS members returned the PI the reply form and confirmed they agreed to take part in the study. The PI screened their eligibility. If they were eligible then the PI entered their details into the NRAS database and posted the second package to the individuals address.

The PI maintained a study database of all people who agreed to participate in order to track their progress through the study. A thank you letter was sent to the participants following their contribution to the study. Information about the study participants was kept confidential and managed according to the requirements of the Data Protection Act, the Research Governance Framework for Health & Social Care, Ethics Committee Approval and University of Salford Research Governance Procedures. Identifiable data obtained via telephone, email or reply forms (such as name and address) was accessed and used only by the research team at the University of Salford. This was to enable the questionnaires to be mailed out to participants correctly and for reminders to be sent if necessary.

Each study participant was assigned a unique participant number. A master list of participant numbers and addresses was maintained on a study database securely stored on the University of Salford’s server. A database (names, addresses and telephone numbers) of those participants that requested a study pack was maintained. Progress through the study was tracked in order to ensure the timely mailing of questionnaires and reminders. This was password protected on a secure file storage area on the University of Salford main server. This was only accessible by the PI and the research team who were directly engaged in the project at the University of Salford. The Principal Investigator was the custodian of the data. Dr. Peter Eachus was lead supervisor for this project. The participants were informed that they would not be identified in any future publications. Source data and databases were stored securely and kept confidential. People were identified by numbers only in statistical records and on questionnaires. Data analysis (SPSS) files only identified participants’ survey IDs. Paper versions of the questionnaires and reply forms were stored in separate locked cabinets.

2.7. Ethics

The survey involved collecting an extensive amount of data on participants to determine their demographic: RA clinical; physical health function and psychosocial variables. The project required ethical approval from the University of Salford’s Ethics Committee as the study involved human participants. The study pack which included the invitation letter, consent form, information sheets and reply forms was submitted with the protocol for review and approval by the University of Salford Research Ethics Committee. Consequently, the project obtained the required ethical approval from the university’s Ethics Committee.

This study was conducted according to the standards of the University of Salford Research Ethics Committee regulations and the University of Salford (College of Health & Social Care) Research Governance policies and procedures. Therefore, the participants were informed that there could be a potential risk of distress caused to them while completing the psychological questionnaires included in the study. In accordance with the Code of Ethics and Conduct (British Psychological Society, 2014), the researcher ensured that all participants in the study were provided with an information sheet describing the elements of the study and sufficient information to make a decision about their participation in the study, and they were reminded of this information at the beginning of the survey questionnaire. The participants consented freely to the study on the basis of adequate information. Therefore, the participants were free to withdraw or modify their consent during the data gathering phase. Any data they had consented to submit up to the time of withdrawal was used. The participants were informed that reliable and valid questionnaires would be used to gather the data.

If participants had a concern about any aspect of this study, they were directed to speak to the PI or a member of the research team who did their best to answer all their questions. If they remained unhappy and wished to complain formally, they could do so to Dr. Peter Eachus, in the School of Health Sciences, who was the lead supervisor for this project. They were also informed that if they felt disquiet /upset during completing the questionnaires then they could contact their GP.

Participants were informed that any data they provided would be kept confidential. No identifying data was included in any report arising from the study. Participants were informed that they could withdraw from the study at any time. They could do so at any time

during the completion of the paper questionnaire by not returning it in the freepost envelope enclosed; the data would not then be submitted. Any data they had consented to submit up to the time of withdrawal was used.