Health Care
“I just answer ‘yes’ to everything they say”: Access to health care for deaf people in Worcester, South Africa and the politics of exclusion

https://doi.org/10.1016/j.pec.2013.12.006Get rights and content

Abstract

Objective

To explore whether there are other factors besides communication difficulties that hamper access to health care services for deaf patients.

Methods

Qualitative methodology using semi-structured interviews with 16 deaf participants from the National Institute for the Deaf in Worcester and 3 Key informants from the Worcester area, South Africa.

Results

Communication difficulties were found to be a prominent barrier in accessing health care services. In addition to this interpersonal factors including lack of independent thought, overprotectedness, non-questioning attitude, and lack of familial communication interact with communication difficulties in a way that further hampers access to health care services.

Conclusion

These interpersonal factors play a unique role in how open and accepting health services feel to deaf patients.

Practice implications

Health care services need to take cognizance of the fact that providing sign language interpreters in the health care setting will not necessarily make access more equitable for deaf patients, as they have additional barriers besides communication to overcome before successfully accessing health care services.

Introduction

It is well established that deaf1 patients face particular challenges regarding communication with healthcare providers, and this is probably a key reason why deaf people use health care services differently from the general population [1]. Tamaskar et al. [2] found that deaf and hard of hearing people were more likely than others to avoid health care providers because of, among other factors, lack of communication and lack of available interpreters. This is consistent with other reports that deaf people see doctors less often [3], [4].

Steinberg et al. [1] examined the accessibility to health care for deaf people (mainly American Sign Language (ASL) users) and found that they had both positive and negative experiences. The positive experiences were found in situations where medically experienced interpreters were used, where health care providers used sign language and where providers made an effort to improve communication. The main barrier was found to be problems with communication, which elicited feelings of fear, mistrust and frustration with the health services. Patients felt afraid of the consequences of miscommunication between themselves and their health care providers, and this often led to patients harbouring feelings of mistrust towards providers and towards the services as a whole. Deaf interviewees, furthermore, felt that some providers did not respect their intelligence, motivation and desire to be actively involved in their health care understanding and decision-making [1], [5].

Communication barriers experienced by deaf people operate as a constant throughout their lives in a hearing world, and at a range of levels, including the individual, interpersonal and systemic levels, all of which come into play in health care communication [6]. In busy health care settings where there is a culture of rapid diagnosis, treatment, use of services and minimum interaction time with the patient, access for deaf people is further compromised [6]. When dealing with hearing personnel who do not speak sign language, deaf people need longer appointment times in order to be understood and to understand treatment options and decisions. Where health services do plan for the extra time needs, deaf patients may feel unusually stressed and through not wishing to be burdensome may try not to be demanding. Paradoxically, this understandable response on their part may contribute further to communication failures which may in turn further hamper or discourage subsequent attempts in accessing health care services in a timely manner [7].

Looking at the interpersonal level it appears that previous communication failure experienced by deaf people, in all their relationships, clouds their perception of communication and generates feelings of for example, shyness and insecurity. These interpersonal factors lead in turn to a lack of ability/will to enter into better communication with others therefore in some instances just distancing themselves completely. This has problems in successfully accessing health care services and appropriate treatment.

All the above issues take on a greater salience in low and middle-income countries where services are fewer, and personnel more stretched in terms of their patient loads. Health care services in South Africa, for example, are characterized by long waiting times and shortage of both staff and medication [8]. Those that are hit hardest by this situation are the most vulnerable population groups and amongst them disabled people [9], [10], [11], [12].

Despite these facts, the vast majority of research on access to health care for deaf people has been conducted in wealthier countries. In this article we contribute to filling this evidence gap by reporting on barriers and facilitators to health care services and health care information experienced by deaf people in a small town in South Africa. The data were collected as part of a larger study on access to health care for people from vulnerable populations in four African countries, known as the EquitAble project (for more information see www.equitableproject.org).

Section snippets

The study site

Worcester is a small town situated 96 km outside of Cape Town in the Western Cape province of South Africa. Worcester has historically provided comprehensive services for deaf children and adults through a number of organizations including the National Institute for the Deaf (NID), the organization through which we recruited study participants. The NID is one of the oldest and largest non-profit organizations, dating back to 1881, and the only facility in South Africa and Africa that provides

Results and discussion

Unsurprisingly, communication factors were found to be at the core of participants’ difficulties in accessing appropriate health care. What was clear though was that these issues did not occur in isolation. As we shall show, for our participants, interpersonal factors combine with communication challenges in a mutually reinforcing negative cycle. Shyness, insecurity, and lack of independence (consequent of living an institutionalized/sheltered life) all seem to be important. Communication

Conclusion

The results of this study, as with other studies, indicated that communication problems in different forms constitute most significant factors affecting access to health care services for deaf participants [1], [5], [16], but that there are additional factors arising from a history of exclusion and disempowerment which has resulted in an internalization of being excluded and disempowered. These factors, as shown in this analysis include lack of adequate communication within the family, not

Acknowledgements

This research was funded by the European Commission Framework Programme 7; Project Title: Enabling Universal and Equitable Access to Healthcare for Vulnerable People in Resource Poor Settings in Africa; Grant Agreement No. 223501. We thank all the participants in the study, the health authorities, and our colleagues Gubela Mji, Richard Vergunst, Hasheem Mannan, Surona Visagie, and Mac MacLachlan. All opinions expressed in this article are those of the authors alone and not those of any other

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