Study design

In accordance with the larger EquitAble project, a qualitative approach, based within the

phenomenological paradigm was followed for this formative study. Semi-structured interviews were used to facilitate the interview process and to ensure that similar topics were covered during

interviews but also allowing the pariticipants to express their own views and experiences (Bless & Higson-Smith, 2000). These interviews were conducted to gather personal recollections from deaf people regarding their experiences with regard to accessing health care services and health care information.

3.5 Instruments

Two semi-structured interview guides, one for deaf health care service users and one for health care service providers and key informants, were used to facilitate the interview process (see Appendix A & B). As discussed in previous sections (for example section 3.5.2), the deaf population has been found to present with lower literacy levels and limited vocabulary, therefore it was decided that interviews would elicit more in depth description of experiences compared to questionnaires. The semi-structured interview guides for users and providers were the same as those used in the larger EquitAble study. Users were conceptualised as people or households who use healthcare services within the study sites and these questions were formulated to explore the users’ perceptions and experiences of their

knowledge about the healthcare system, and/or the site, and/or one of the vulnerable groupings in the area. The provider guide was mainly used to facilitate the interviews with key informants although depending on the role of the key informant certain aspects from the user guide were also included. The user questions focused on: a) understanding of health, health related issues and health needs; b) issues around access to the health care facilities, including issues on patient satisfaction, transport and costs; c) the participants’ understanding of vulnerability in general and their own vulnerability; d) additional questions for people presenting with a disability included questions on rehabilitation

services and assistive devices. The provider guide broadly focused on a) an understanding of equitable healthcare access, vulnerability and disability; b) treatment of people with disabilities and knowledge of relevant policies and regulations; c) experiences of providing health care services at the facility, including job satisfaction, morale and challenges faced.

All interviews were digitally recorded with prior consent from participants. 3.6 Participants

Participants were made up of both users of health care services and key informants. 3.6.1 User population

The user population of this study were deaf people living and/or working at departments/workshops of the NID in Worcester.

3.6.2 Key informant population

The key informants were persons who had knowledge about the health care services provided in Worcester, the deaf population of Worcester and the area of Worcester.

3.6.3 Criteria of inclusion and exclusion

User participants had to be deaf (deaf or hard of hearing) and working and/or living at one of three NID departments (Lewensruimte, Shalom Old Age home or NID College) in Worcester. Hard of hearing participants were those participants who had hearing loss and could understand us and have a conversation without the help of an interpreter, although they were still offered interpreter services. Participants also had to have used formal health care services over the course of their life, preferably in the area and preferably public health care services, however participants that used private health care services were not excluded so as to understand whether experiences were similar between these two different types of services. Participants from the NID College were from other African countries and were also included to get an idea of whether barriers and facilitators for deaf people could be an universal experience.

3.6.4 Sample characteristics

Of the 16 users that were interviewed, seven were male and nine female. There were eight participants from Lewensruimte, six participants from the NID College, who came from South Africa, Zimbabwe, Dubai, Botswana and Zambia, the remaining two participants were residents of the Shalom Old Age home. The majority of the participants had severe hearing loss, while three participants were hard of hearing two of which did not use an interpreter during the interview process. Two of the participants were deaf and mildly intellectually disabled and one was deaf, blind and mildly intellectually

disabled. In line with the larger EquitAble project the age of participants was divided into certain categories; 0-4, 5-14, 15-19, 20-34, 35-49, 50-64, 65-79, 80 and older. As six of the participants were interviewed from the NID College the main age group of the participants was between 20 years and 34 years of age. Five of the participants were aged between 35 years and 49 years, while one

participant was between 50 years and 64 years. The two participants from Shalom were aged between 65 years and 79 years.

3.6.5 Participant recruitment

As this phenomenological part of the overall EquitAble project was designed to elicit helpful qualitative information and to inform a more systematic survey looking for overall trends at a later stage, participants were recruited for this study by purposive sampling, with the help of staff at NID. Lewensruimte was approached to take part in the bigger EquitAble study and from there two other departmental heads of NID joined in with this smaller study (NID college and Shalom Old Age Home). The departmental personnel each recruited participants that they felt would be able to

participate in this study and also explained to the participants broadly what the study would be about, obtaining provisional consent also informing them of a time slot for their interviews.

Three key informants were purposefully sampled for their specific knowledge of health care services in the area and the deaf population of the area. The breakdown of the key informants was as follows:

• A healthcare provider for many years with extensive knowledge of the health care system in the area and a parent of a deaf child,

• A CODA who was also one of the interpreters for our interviews, and

• A social worker and interpreter at NID with extensive knowledge of difficulties faced with the health care system, especially mental health.

In the end a total of 16 users and 3 key informants were interviewed. Details of participants are provided in Table 1.

Table 1

Study Participants

Participant code# Participant Type Department of NID Male / Female Age category Impairment SA-170310-W-

HU-BC User Lewensruimte F 20-34 Deaf

SA-170310-W-

HU-ML User Lewensruimte F 20-34

Deaf, Blind and intellectual disability SA-170310-W-

HU-MM User NID College F 20-34 Deaf

SA-180310-W-

HU-JK User NID College F 20-34 Hard of hearing

SA-170310-W-

HU-JK User NID College F 20-34 Deaf

SA-170310-W-

HU-CS User Lewensruimte F 35-49*

Deaf and mild intellectual disability SA-170310-W-

HU-CS User Lewensruimte F 35-49*

Deaf and mild intellectual disability SA-160310-W-

HU-ML User Lewensruimte F 50-64 Deaf

SA-170310-W-

HU-ML User

Shalom Old Age

Table 1 Continued

Participant code Participant Type Department of NID Male / Female Age category Impairment SA-180310-W-

HU-MM User NID College M 20-34 Hard of hearing

SA-180310-W-

HU-JK User NID College M 20-34 Deaf

SA-180310-W-

HU-SHB User NID College M 20-34 Deaf

SA-170310-W-

HU-JK User Lewensruimte M 35-49 Hard of hearing

SA-160310-W-

HU-ML User Lewensruimte M 35-49 Deaf

SA-170310-W-

HU-LM User Lewensruimte M 35-49* Deaf

SA-170310-W-

HU-ML User

Shalom Old Age

Home M 65-79 Deaf SA-130510-W- KI-JK Key informant M No known impairment SA-170310-W- HP-SHB Key informant F No known impairment SA-270510-W- KI-JK Key informant M No known impairment Note: * reflects an estimation of the participants age. # participants code have been adjusted to maintain anonymity.

3.7 Procedure

Both interview guides used during the interview process were designed to be used during an hour to an hour and a half, face to face interview. Prior to interviews taking place, participants were informed about the study and consent was obtained, both to proceed with and to digitally record the interview.

All interviews were conducted in the preferred language of the participant with the assistance of trained interpreters, where needed.

All participants were provided with an interpreter unless they indicated that they did not wish to use an interpreter during the interview. Interpreters were either the participant’s carer or staff members of the NID.

All interviews were conducted by the Worcester fieldworkers; 4 students of Stellenbosch University (3 Honours and 1 Masters), 1 international colleague from Sintef (Norway) and 2 fieldworkers from the Worcester area. All fieldworkers were trained before data collection on the interview process and the interview guides.