Background
Responses to illness and disability are diverse and shaped by a complex interplay of culture, community context and personal factors. The ways in which people respond to illness and disability may impact their long-term outcomes [
1] as these responses influence decisions about intervention. Responses may include how families react to disability, including how they self-help, and where they seek help for the person with a disability. An understanding of what people do to help themselves and their families, and whether and when people choose to access particular services, is useful in planning and adapting rehabilitation services to make them relevant to local contexts.
The development of responsive and relevant rehabilitation services is particularly crucial in low and middle-income countries
1 (LMICs), including those of sub-Saharan Africa (SSA) where many people with disabilities (PWD) continue to lack access to basic rehabilitation services [
2‐
5]. Scaling up rehabilitation is on the global agenda, with recent calls by the World Health Organization for countries to address severe rehabilitation workforce shortages, and improve service co-ordination, funding and facilities [
6,
7]. In response to the World Report on Disability [
8], the World Health Organization’s ‘Global Disability Action Plan 2014–2021’ targets improvements to rehabilitation services and supports for people with disabilities [
7]. The recent high-level meeting, ‘Rehabilitation 2030 - A Call for Action’, brought together stakeholders from across the globe to discuss the ways forward, and included a commitment by participants to work towards developing the rehabilitation workforce relevant to each country context [
9]. Workforce shortages, and challenges in achieving an appropriate skill-mix amongst rehabilitation workers, are well documented barriers to the development of appropriate rehabilitation services [
10,
11].
Rehabilitation services for people with communication disabilities (PWCD) are particularly challenging in SSA [
12‐
14], despite broad estimates suggesting that between 25 and 49% of PWD may experience some form of communication disability
2 [
15,
16]. In SSA, community-based rehabilitation (CBR) workers frequently lack training in communication disability [
8,
17]. The availability of speech-language pathologists
3 (SLPs), professionals who provide communication disability rehabilitation in High Income Countries
1 (HIC), has been virtually non-existent, with many countries across SSA reporting few, if any, SLPs in-country [
18,
19].
Wickenden outlined a range of conditions that may indicate readiness for the development of communication disability rehabilitation services in LMICs, including the development of the profession of speech-language pathology (SLP) [
20]. These included a range of indicators related to political stability, economic development, and governance; development indicators – including health, education, mortality, and morbidity outcomes; implementation of key human-rights conventions; growing disability awareness and activism; and the existence of a range of specialized skills and services in related fields. Ghana is a lower middle-income country [
21], well-placed to develop rehabilitation services for people with communication disability. It is a well-recognised leader in West Africa, in key areas including economic development and freedom of speech [
22]. It has a policy of universal primary education [
23], has demonstrated steady improvements in health care [
24] and is a signatory to the Convention on the Rights of Persons with Disabilities [
25]. Significant challenges remain in the organisation and delivery of rehabilitation services [
26,
27]. Both health-related rehabilitation services and CBR approaches have been adopted in Ghana [
27], although both approaches continue to be significantly underdeveloped, with concerns about poor uptake of CBR services by PWD, and a paucity of professionals, including physiotherapists, occupational therapists and SLPs, to provide health-related rehabilitation [
28]. The SLP workforce in Ghana reflects the wider workforce challenges across SSA [
18] with estimates of approximately five practising SLPs [
29,
30] providing services in a country of 27 million people [
31]. During the past decade, training for SLP has commenced in a number of sub-Saharan African countries [
14], including Ghana [
30].
While development of the SLP profession is a laudable goal in increasing rehabilitation services for PWCD in SSA, it requires critical examination [
32]. SLP is a profession based on Eurocentric cultural beliefs and practices [
32,
33] Eurocentrism emphasizes cultural beliefs and values originating from European or “western” cultures, often to the exclusion of other worldviews [
33]. Eurocentric beliefs are reflected in the approaches to rehabilitation used by the SLP profession. For example, Western parenting approaches including parent-child style of play are often used in SLP. Geiger [
34] highlighted the need for communication rehabilitation to adopt culturally-specific approaches in the African context, building on existing and culturally relevant resources and practices.
In Ghana, as in much of SSA, Eurocentric approaches to the management of disease and disability have been adopted, however traditional beliefs and the use of traditional interventions also continue to commonplace [
35‐
37]. Spiritual beliefs regarding disability causation and treatment are widespread in SSA, including Ghana [
29,
37,
38] with a number of traditional responses being linked historically to neglect, abuse, and infanticide [
39‐
41], however a mix of beliefs is likely to be present in the community, influenced by a variety of factors including the adoption of religion and Western lifestyles [
29,
42].
Traditional interventions and religion appear to play a key role in the lives of people with disability in SSA [
38,
43]. Kassah [
44] described the situation for PWD in Ghana, where “the shrines of traditional healers and spiritual churches become the abodes of the stigmatized” (p 70), as belief in the potential for cure of a number of disabilities, including intellectual disability, remains strong [
29]. The desire for curative solutions to disability is unsurprising as, despite growing awareness of the rights of PWD in Ghana [
42,
45], stigma associated with disability continues to be widespread [
44,
45].
There is limited research exploring community responses to communication disability in the region. Outside SSA, Hopf et al. [
46] replicated and expanded the method described in this paper, undertaking a community survey of 144 people in Fiji. They found that community members indicated that they would seek information, assess the PWCD, teach new skills, pray and attempt to change behaviours of themselves and others, in response to the communication disability. Community members would reportedly seek help from a range of sources, including both western medicine and traditional services. Within SSA, Semela [
43] described the services that faith healers provide for families in South Africa and discussed the importance of culture and traditional belief in the provision of rehabilitation services for communication disability. This has been supported by more recent research describing the importance of both belief and tradition in service provision for PWD/PWCD [
38,
47].
In Ghana, it is not known how, or if, people who experience communication disability and their families attempt to help themselves or seek help. This exploratory study aimed to describe the variety of self-help actions community members in Accra would undertake, and to examine the range of sectors or professions that community members in Accra would use to seek help, if they experienced communication disability within their family.
Discussion
This qualitative inquiry explored reported self-help and help-seeking behaviours in response to communication disability in Greater Accra, Ghana. It aimed to include a diverse range of participants from across Greater Accra to ensure that a range of community perspectives were considered. Participants were from a range of age groups, broadly consistent with the 2010 census data for Greater Accra [
58]. Both men and women participated in the survey, however there were slightly more male respondents, with 58% of male respondents as compared with the 52% male population identified within Greater Accra [
58]. This may be linked to site selection or to a variety of socio-cultural factors, such as education, confidence or familiarity with surveys. Twi and Ga language speakers were dominant in the sample, consistent with census data indicating that 39.7% and 27.4% of Greater Accra residents identify as Akan or Ga ethnicities [
58]. Inclusion of participants with a wide range of other Ghanaian home languages including Hausa and Ewe indicated ethnic diversity amongst participants. There was a higher proportion of university educated participants, when compared to the general population [
58], which may be related to sites selected or as a result of community members with higher education being more comfortable participating in surveys.
Self help
Results from this study suggest that the community members surveyed would make active attempts at intervention, using a variety of approaches, to assist a person experiencing communication difficulty in their family. This is consistent with Fijian research indicating that people would be likely to attempt a range of self-help actions consistent with their culture [
46]. Previous research from HICs indicates that parents of children with communication disabilities who are aware of issues may take action themselves [
61] and/or undertake a period of waiting, prior to seeking professional help [
62].
Within this study, participants described self-help actions which aimed to effect change within the individual with a communication disability, using specific teaching, herbal remedies, first aid and exercise. Research in other countries also found that parents of children with a communication delay may use direct teaching and imitation, prior to seeking help [
46,
61]. However, the use and acceptance of direct teaching of language and communication skills appears to be influenced by culture [
63,
64] and requires further exploration in the Ghanaian context.
Participants also described changing the physical and communication environments in response to a communication disability. This is also consistent with both results from the Fijian study [
46] and previous UK-based research, indicating that both SLPs and families believed that the environment plays a role in language development [
61]. SLP interventions frequently target the communication environment using a range of approaches. These may include changing interaction opportunities, such as asking questions, and interacting more or less; altering the communicative environment, for example sending the child to school or to use of more stimulating environments; and changing the communication style, for example using gesture or visual cues [
65].
The International Classification of Functioning, Disability and Health (ICF) [
66] outlines a conceptual framework for the biopsychosocial model of disability, with five dimensions interacting to influence human functioning [
67]. Community members in this study indicated they would be likely to use self-help strategies, which focus on both changes within the individual and the environment. Self-help strategies described in this study, which focus on effecting change within the individual, such as direct teaching, are consistent with the ‘body structure and function’ component of the ICF [
66], whilst environmental responses are consistent with the ‘environment’ component of the ICF [
66]. The range of approaches to self-help, described by participants, reflect the diverse influences contributing to communicative functioning and are consistent with the types of interventions used by SLPs [
67].
Importantly, if both direct teaching and environmental interventions are part of current self-help responses to communication disability in Accra, then families may be receptive to, and reassured by, information about ways to enhance their environmental and direct teaching interventions, even before they formally seek help. Community members in this research indicated a desire to both observe and understand their family member’s communication disability or to seek information if their family member was affected, raising the need for accessible community level information on communication disability. Public awareness of communication disability is frequently limited in LMICs [
12,
15,
20] despite evidence of the effectiveness of early intervention for a number of developmental communication delays [
68,
69]. SLPs in LMICs are well-placed to consider how best to support self-help actions taken by families, through provision of community-level education and engagement [
70,
71].
Typically, SLP services in HICs have adopted approaches which focus on intervention targeting the needs of individuals [
71,
72]. Involvement of SLPs in approaches that develop community-wide education and capacity-building, described above, would suggest a shift in focus for SLP services to a form of public health SLP [
71,
72] with the emphasis on the early intervention efforts of family and other community members. Such community level interventions may be particularly important in LMICs, such as Ghana, where rehabilitation services are extremely limited [
26,
27]. Simply increasing the rehabilitation workforce to provide individualized clinical services, in the form of SLPs or other workers addressing communication disability, will be ineffective in meeting population needs for many years [
19].
Community members indicated that responses to communication disability may include care, nurturing and a range of attitudinal responses. This is consistent with responses, described as behavioural, in Fijian research [
46]. Development of positive attitudinal responses to communication disability are important as communication disability has been associated with stigma in Ghana [
73]. Communication disability rehabilitation services, including SLPs, in LMICs are likely to need to adopt broader roles in supporting PWCD than their counterparts in HICs, which may include awareness raising and activism [
20].
Spiritual activities were described as likely responses to communication disability. Data from this study reveal that community members are likely to respond to communication disability through spiritual activities, including prayer and fasting. Whilst this study did not explore whether the spiritual actions were aimed at cure, or coping, further understanding of how community members use spiritual activities to help-themselves could guide the development of appropriate supports in this area.
Extending this preliminary research, through detailed exploration of self-help activities would be beneficial, in order to begin to build communication disability rehabilitation practices which harness, support and extend community knowledge and practices [
34,
46] and allow the emergence of a more Afrocentric approach to communication disability rehabilitation [
74,
75].
Seeking help for communication disability
Cultural beliefs, including religion, spiritual beliefs and societal norms, influence how people respond to health conditions and seek help for them [
38,
43,
76]. This research suggests that participants would seek help for communication disability across a variety of sectors in Accra, many of which sit outside the Western biomedical paradigms. Results of this study indicate that help-seeking behaviours are consistent with the understanding that disability in Ghana is viewed as multidimensional, with a blending of traditional, religious and Western belief [
44]. Knowing which sectors people may access for communication disability is important, as trust between clients and service providers has been shown to be an important aspect of accepting advice, complying with treatment and achieving behaviour changes necessary for good health [
75,
76]. Siminoff [
77] stressed that “the experience of illness, help-seeking and treatment is not just a biological but also a social process” (p5) and involves relationship building between service users and providers.
Comparing responses when participants were asked directly about their own likely help-seeking behaviours, and help-seeking behaviours they believed others may engage in, indicates the possibility that perceptions around social acceptability may affect responses related to sharing information about help-seeking [
54], and should be addressed sensitively in research in this field.
Results of this research suggest that, in the case of communication disability in Accra, trusted service providers for PWCD are situated in a variety of sectors. For example, if an individual’s first response is to seek advice from their pastor, they may be likely to trust information given by that person, reflecting their cultural beliefs about causation and trajectories of communication disability.
In HICs where health-related rehabilitation services are more readily available, multidisciplinary approaches to rehabilitation are often promoted [
78]. The range of professions inferred in the term ‘multidisciplinary’ is often linked to the Western healthcare sector, including doctors, audiologists and occupational therapists [
78,
79]. In Ghana, an even broader approach to rehabilitation is indicated, involving collaboration across sectors, including Western healthcare, religion and traditional belief. Furthermore, acknowledgement of a more inclusive team across sectors is worthy of consideration in increasingly diverse communities in HICs. As communication disability rehabilitation services develop in Ghana, creating links and establishing dialogue about communication disability across sectors currently accessed by the community may be an appropriate way forward to ensure emerging services fit within the existing service landscape [
80].
Differing beliefs about causation of communication disability may make multisectoral approaches challenging. However, increasing dialogue and collaboration, between SLPs, religious leaders, traditional practitioners, education professionals and community leaders around communication disability, may ultimately mean that families have access to information and support, from the people they trust.
Limitations
This exploratory study provides preliminary information from a sample of participants in one Ghanaian city, and must be interpreted conservatively. Also, it is of note that brief qualitative surveys do not allow deeper exploration of responses.
Participants came from a cross section of the community however this study did not aim to be representative of the population of Accra, or Ghana. The characteristics of the sample may have influenced the content of responses, for example, strong representation of respondents with a university level education. Some groups, not necessarily identifiable from census data, may not have been accessed, for example, parents of children with disabilities, people from very impoverished backgrounds. The use of the two specific hypothetical scenarios may not have elicited all activities that would be undertaken by participants in relation to children and adults with a communication disability. Responses may have been influenced by respondent’s desire for social acceptability.
In an effort consider sample diversity, home language data were treated as a proxy for ethnicity data from the national census [
58], despite home language representing one possible component of ethnicity. In a short survey, it is not possible to ascertain participants’ understanding, or experience with, communication disability, which may have influenced their responses.