Data Collection Procedures for PNES

In an effort to select a sample of HCPs to participate in the PNES part of the study, I forwarded a request to the HPCNA for a list of service providers in Namibia. I was informed that such a list could be compiled, but that it would require some effort and time on their behalf. After several attempts to secure such a list, I reverted to the telephone directory to identify possible participants for the study. The Namibian telephone directory lists approximately 180 GP

entries, of which the majority included e-mail addresses. Obtaining information on specialists such as psychiatrists and neurologists proved much simpler due to their limited numbers.

Once the list of possible service providers had been compiled, I identified the

participants who would be invited to participate in the qualitative and quantitative phases of the data collection process. Preference was given to specialists such as psychiatrists and

neurologists. The remainder of the list comprised of GPs with specializations and finally

psychologists with a particular interest in neuropsychology. Telephone directory listings for GPs indicated specific specialization areas such as family practitioner, occupational health, avionics, obstetrics and psychiatry. The Motor Vehicle Accident Fund (MVA) in Namibia makes use of psychologists in private practice to render services to patients who have been injured in motor vehicle accidents. The MVA provided a list of service providers (psychologists) who had service contracts with them. Psychologists who choose to consult for the MVA specializes in

neuropsychology and trauma counselling and I opted to include them in the sample for this reason. The final list consisted of 100 candidates who were invited to complete the survey and 28 candidates who were invited to participate in the interview phase of the study. Data collection started during September 2015 and was completed during in 2016.

3.4.1 HCPs’ perceptions of and experiences with the management of PNES.

Twenty-eight HCPs were invited to participate in the qualitative phase of the study. This included two neurologists, five psychiatrists, ten psychologists and 11 GPs. An e-mail including a short description of the purpose and relevance of the study and an invitation to participate was sent out. The following documentation was attached to the mail: (1) informed consent form (see Appendix B1), (2) biographical questionnaire (see Appendix B2) and (3) semi-structured interview questions (see Appendix B3). This was followed by a telephone call to ensure that the relevant documentation had been received and to enquire whether the HCP would be prepared to participate in the study. If the HCP agreed to take part in the study, a meeting was arranged at a time and place that suited the HCP. Participants were either met at their consulting rooms, their homes or at the researcher’s office.

Semi-structured interviews were conducted with 15 participants. The total number of interviews ultimately depended on theoretical saturation, and by the fifteenth interview, themes started to repeated and no new information was emerging (Lincoln & Guba, 1985).

Before conducting the interview, the relevance and purpose of the study were explained to the HCP and questions regarding the research were answered. The HCP was then asked to read and sign the informed consent form (see Appendix B1) and to complete the biographical questionnaire that explored the HCPs’ qualification, speciality, years in practice and location (see Appendix B2). The researcher asked the HCPs’ permission to record the interview for the

transcription process. Once permission had been obtained from the HCP, the researcher commenced with the interview (see Appendix B3). The semi-structured interview consisted of broad, open-ended questions that were based on the ILAE PNES Task Force survey for HCPs. This survey was developed to explore the diagnostic and treatment practices of HCPs. It was adjusted to gather detailed information and personal opinion regarding the diagnosis and treatment practices used for PNES in Namibia. Participants were prompted to elaborate on their perceptions and experiences during the interview process.

The following questions were used to guide the interviews: 1. Tell me about your work with patients with PNES.

2. What are the complexities involved in making a diagnosis? 3. What are, in your experience, the main causes of PNES?

4. What are, in your opinion, the main challenges that healthcare professionals face when dealing with patients with PNES?

5. What makes it easier (or will make it easier) for you as a health provider to address patients with PNES?

Probing techniques were used during the interviews to obtain as much information as possible from each participant. Interviews lasted approximately 40 minutes. Each interview ended by thanking the HCP for their time and willingness to participate in the study. Participants were informed that a transcript of the interview would be e-mailed to their personal e-mail address to enable them to verify and correct any information.

3.4.2 Current diagnostic and treatment practices for PNES in Namibia.

The ILAE PNES TF Survey for HCPs was used to collect quantitative data. The survey was developed by the ILAE PNES TF to gather information on diagnostic techniques and treatment practices used by HCPs in the management of PNES. The purpose of the survey is to collect data for descriptive purposes and it is therefore not standardized. The survey is available in the public domain and consists of 36 multi-item scales (see Appendix B5). The following five dimensions are measured: (a) professional role of the HCP and their exposure to PNES; (b) diagnostic service for patients with PNES; (c) management of PNES; (d) aetiological factors; and (e) problems accessing healthcare.

An e-mail with a description of the purpose and relevance of the study was sent to 82 GPs, three neurologists, five psychiatrists and ten psychologists (a total of 100 participants) in Namibia, requesting them to complete the survey. The official letter of invitation to HCPs (see Appendix B4) was attached to the mail that indicated the link to the electronic survey, which was created on Survey Monkey (see Appendix B6). The electronic survey included two sections that covered the informed consent section of the questionnaire (see Appendix B1). The informed

consent was divided across two sections in the electronic survey due to word limits in Survey Monkey. Participants were also given the option of printing and mailing the questionnaire if it could not be completed electronically.

Thirteen of the e-mails were undeliverable, and 25 responses were received from the remaining 87 invitations, a response rate of 28.74 per cent.