In summary, the ICF (WHO, 2001) provides a conceptual framework to describe Hank's functioning and disability at a particular moment in time. However, it does not provide a way to conceptualize how current level of functioning and disability, such as difficulty participating in relationships or difficulty reading complex information, may influence health and well-being over time. Is there another conceptual model that offers guidance in regard to potential long-term consequences?
Applying the SDH to Hank's story helps determine the possible long-term consequences
The social determinants of health
The SDH model provides a different conceptualization of health: one that identifies the social factors that influence health and well-being in the long term (Solar & Irwin, 2010). The SDH may provide a better account of the factors contributing to Hank's dramatic change in circumstances from being a successful executive, living with his wife and children with financial means and several social networks, to being an unemployed recipient of a disability pension, living in shared accommodations where he does not feel comfortable or safe. The SDH model, as depicted in Figure 3, states that social factors (such as the socioeconomic and political context, and a person's subsequent social position) directly influence a person's material, social, psychological, and biological circumstances, which in turn influence a person's health and well-being (Solar & Irwin, 2010). According to the SDH, it is not simply that disease or injury causes poor health and well-being; rather, it is the complex interplay of social factors that determine the likelihood that an individual will experience disease or injury that leads to poor health and well-being.
A wealth of evidence world wide demonstrates how different social factors influence population health and well-being (Commission on Social Determinants of Health, 2008). For example, mortality rates for both men and women steadily increase as poverty increases; this pattern is evident both within individual countries and across different countries (Commission on Social Determinants of Health, 2008). Mortality rates are related to ethnicity, education, and income. For example, indigenous Australians live approximately 16 years less than non-indigenous Australians (Commission on Social Determinants of Health, 2008). In the United States, men with a low education live on average 6.5 years less than men with university degrees (Davidson, 2015). Similarly, women on low incomes live on average 5 years less than affluent women (Davidson, 2015). As Davidson (2015) states, some differences in population health, such as health differences due to genetic factors, may be unavoidable. These differences are called health inequalities. However, if the variations are avoidable, like the variations in health described earlier, then they are no longer considered to be health inequalities but health inequities (Davidson, 2015). Health inequities occur because of the way society is structured and the way in which resources are distributed within society (Commission on Social Determinants of Health, 2008).
The SDH model proposes that there are structural determinants of health such as the socioeconomic and political context that influence social position in society. The socioeconomic and political context is proposed to influence a person's access to education, income, and occupation. The socioeconomic and political context may also have differential impact on people, depending on their gender and ethnicity. These structural determinants are hypothesized to effect intermediary determinants of health such as a person's material circumstances, psychosocial factors, and behaviors. The health system in which an individual finds himself or herself is also considered an intermediary determinant of health because it influences a person's access to health services, such as the specific criteria around access to health care and health care resources (Solar & Irwin, 2010). Apart from an individual's behaviors and biological factors, all the other factors in the SDH model are environmental factors. Some factors such as material circumstances and psychosocial networks are part of a person's immediate environment, whereas factors such as the socioeconomic context, the political context, and the health care system are part of a person's broader environment. Can the SDH model be applied to individuals such as Hank, to explain the series of events that occurred to him after his stroke and aphasia?
Applying the SDH to Hank's story
The SDH is a cyclical model that depicts how an individual's health and well-being are influenced by structural and intermediary determinants of health. Therefore, in applying the SDH to Hank's story, the authors acknowledge that there were structural and intermediary determinants of health already operating that had influenced Hank's health and well-being prior to his stroke. These included the prevailing Australian socioeconomic and political context at the time (e.g., Australia is a stable democracy; it is a wealthy, developed nation; free public health care is available), as well as Hank's prestroke social position (e.g., white male, high school educated, high status occupation, and high income), his preexisting material circumstances (e.g., whether or not he could afford safe comfortable housing, healthy food, adequate clothing), the degree of social cohesion (e.g., the safety of his neighborhood), psychosocial circumstances (e.g., his social networks, his stress levels), behavioral circumstances (e.g., the extent to which he ate well, slept well, and exercised), and biological factors (e.g., his preexisting medical conditions). The application of SDH to conceptualize the consequences of aphasia over time begins at Hank's discharge from formal rehabilitation services approximately 3 months after his stroke and consider the possible interplay of social determinants of health from this time on. Although all social determinants influence health and well-being, the particular social determinants thought to play a key role in influencing Hank's health and well-being are highlighted in Figure 4.
How might structural determinants influence Hank's long-term health and well-being?
The SDH leads to reflection on how structural determinants of health may have influenced Hank's health and well-being after his stroke, subsequent aphasia, and reduced mobility. That is, were there any factors in the environment related to government and reflected in Australian macroeconomic, social, and/or health policies that impacted Hank's health and well-being? Did Australian cultural and societal norms and values regarding stroke and disability affect Hank? Two structural determinants that influence a person's social position, income, and occupation are considered later.
Hank's stroke, aphasia, and reduced mobility meant that he could no longer participate in a high-status, high-income job. His inability to resume his prestroke occupation had many consequences, including a dramatic reduction in income. However, government policy did play a role. Although considerably less than the income he had previously received, Hank received some income through a government-funded disability pension. This pension also entitled him to a concession on the cost of some essential services, such as electricity. The overall value of this pension would determine the extent to which it served as a protective factor for Hank's health and well-being.
There was also a government service to support people with acquired disabilities to find employment. However, it is important to consider whether there were any environmental factors operating within these government services that created barriers for Hank, given his aphasia. Specifically, did the people responsible for finding Hank employment after his stroke understand what aphasia is? Were they able to communicate with him in a way that revealed his competence (see Kagan, 1995)? It is unknown if the disability employment staff had an understanding of aphasia and provided Hank with a supportive communicative environment or not. Instruction in aphasia and supportive communication may have benefited their assessment of his capabilities and the work opportunities he was offered.
How might intermediary determinants influence Hank's long-term health and well-being?
The SDH proposes that social position, indicated by occupation and income, has a direct bearing on intermediary determinants of health such as psychosocial factors, material circumstances, and access to health care. The SDH may be useful when considering the long-term impact of these environmental factors on Hank's health and well-being. The authors aim to initiate a conversation within aphasiology regarding the long-term impact of aphasia that can inform future research, service planning, and delivery, and resource allocation.
The SDH model suggests that the fall in Hank's social position as a result of his loss of occupation and income may have resulted in a range of negative psychosocial consequences. These might include living with the stress of debt, the loss of his work-related social network, the loss of the school social network, and the breakdown of his marriage. It is also important to consider the interactions among aphasia, the environment, and these psychosocial consequences. Whereas the environmental supports provided to Hank were unknown, the SDH can prompt clinicians to consider what they might need to be. For example, if there were a communicatively accessible financial counselling service, Hank and his wife would have been able to get financial advice and support in a way that Hank could understand. This support might have been in the form of supporting Hank to continue to be involved in making financial decisions and/or giving him the opportunity to be involved in appointing someone to assist with these decisions.
Similarly, as Hank and his wife experienced their relationship deterioration, communicatively accessible relationship counselling services might have meant that they would have been able to get the psychological and emotional support that they needed. The consequences of losing his job and his income also meant that Hank lost important social networks. Environmental factors related to the knowledge, skills, and attitudes of family, friends, school colleagues, as well as work colleagues become critical. Having communication partners with the skills and knowledge to support a person with aphasia in conversation (Simmons-Mackie, Raymer, & Cherney, 2016) and having opportunities to develop new social networks (see Howe, this issue) may have provided Hank with a communicatively supportive social network. The loss of social networks alone can be detrimental to feelings of belonging and overall health and well-being (Dalemans, de Witte, Wade, & van den Heuvel, 2010).
Another important intermediary determinant of health is a person's material circumstances, such as housing (Solar & Irwin, 2010). This prompts a number of important questions around how a range of environmental factors, such as the accessibility of legal services and the availability of advocacy services, may have contributed to Hank's financial situation and the quality of his housing. Although Hank did not mention it explicitly in his story, thinking about the relationship between aphasia and the social determinants of health may prompt clinicians to consider what, if any, communicative support Hank received during the complex, legal process of divorce and how this might have affected the amount of money he received as part of the financial settlement. This is important because it would have had implications on many aspects of his life, including the quality of rental accommodation he could afford. A better financial settlement might have made the difference between living in a place where he felt safe or in a place where he did not feel safe.
Another environmental factor relates to the presence of advocacy services. There are no advocacy services for people with aphasia in Melbourne. If Hank had had access to an advocate, he might have been able to find affordable and acceptable accommodations for himself. Alternatively, an advocate might have been able to help him find a shared house where he felt both physically safe and psychologically comfortable. An advocate might also have supported Hank when more complex communication situations arose such as understanding his rights and responsibilities as a tenant, negotiating with his housemates on bills, negotiating with the landlord about getting stair-rails in place, and negotiating car repairs with the mechanic.
The health care system
Another intermediary determinant of health is the health care system itself (Solar & Irwin, 2010). The SDH provides a way of explaining how access or a lack of access to the health care system can serve to protect a person's health or further compromise it. Health care policies determine who is able to access health care and the cost of this access. Given that Hank was in receipt of a disability pension and living in Australia, he would have received free transport to hospital, free hospital care, and free inpatient rehabilitation. A publically funded health care system facilitates access for all Australians to basic health care. However, on his admission to hospital with a broken ankle, the SDH model prompts clinicians to consider whether there were any environmental factors that could have influenced Hank's access to this health care given that he had a preexisting aphasia.
A recent metasynthesis of the environmental factors that influence health care for people with communication disabilities based on observations in Melbourne hospitals (O'Halloran et al., 2012) identified that there are no systems in place to detect patients with preexisting communication disabilities, and there are no systems in place to equip health care providers with the knowledge, skills, and resources to support people with communication disabilities to participate in their health care. It is possible that health care staff were not aware that Hank had aphasia, that the SLPs were not aware of Hank's admission, and that staff did not modify the information they provided him about the assessment and treatment of his broken ankle. Ineffective communication might have placed Hank at risk of a preventable adverse event in hospital (Hemsley, Werninck, & Worrall, 2013) and might have undermined an optimal recovery (Street, Makoul, Arora, & Epstein, 2009).
In summary, the SDH model prompts consideration of the effect of aphasia and the environment beyond communicating in a particular activity or participating in a certain event. It encourages consideration of how aphasia, as a chronic condition, may make an individual more vulnerable to a set of conditions, such as poorer housing and fewer social supports, which, in turn, place him or her at greater risk of poorer health and well-being over time. For clinicians and researchers, the SDH identifies some environments that may be particularly important to target in order to enhance and protect the long-term health and well-being of people with aphasia. These include government policies, employment, income, education, psychosocial networks, and health care environments. The SDH also prompts new questions in terms of how aphasiologists define and measure the success of aphasia interventions. Finally, it highlights the need for support services for people living with aphasia when life circumstances change. Below, the authors review the research evidence to explore the relationship between aphasia and the structural and intermediary social determinants of health.
PART 3: IS THERE EVIDENCE OF A RELATIONSHIP BETWEEN APHASIA AND SDH?
This section provides an overview of the research evidence in relation to aphasia, the communicative environment, and SDH. The authors have not identified any studies that apply the SDH model to aphasia and its consequences. However, as described later, some literature exists examining aphasia and these health and well-being determinants.
Exploring the structural determinants of health and aphasia
Within the SDH model, structural determinants of health refer specifically to “interplay between the socioeconomic–political context, structural mechanisms generating social stratification and the resulting socioeconomic position of individuals” (Solar & Irwin, 2010, p. 28). As such, the authors begin by discussing the evidence regarding the citizenship experiences of people with aphasia, and the environmental factors that influence their access to government services. The structural determinants of health both influence and are influenced by an individual's socioeconomic position. The most important indicators for socioeconomic position are occupational status, level of education, and income level (Solar & Irwin, 2010). To further illustrate the impact of aphasia on these indicators of socioeconomic position, the following provides an overview of the literature in relation to the influence of aphasia and the environmental factors that influence access to education.
Aphasia, civic engagement, and access to government agencies
Citizenship is “a concept which encompasses connection to wider society, rights and responsibilities, and the capability for exerting power and influence” (Mackenzie, Bennett, & Cairney, 2011, p. 187). People with aphasia largely define citizenship in terms of community involvement, although some suggest a broader definition involving dealing with government agencies (Mackenzie et al., 2011).
Findings from interviews with people with aphasia suggest that their desire for civic involvement is driven by a wish to engage in activities beyond the home, and by a desire to act as agents for change for both themselves and others in the populations they represented (Mackenzie et al., 2011). An investigation by Howe et al. (2008a) found that the environmental factors that influenced the community participation of people with aphasia included (a) awareness of aphasia; (b) opportunity for participation; (c) familiarity; (d) availability of extra support for communication; (e) communication complexity; (f) message clarity; and (g) time available for communication. However, little is known about the relationship between environmental factors and participation, or the impact of environmental level interventions on the participation of people with aphasia.
The ability of people with aphasia to engage with government agencies has been reported to be fraught with challenges. As an example, people with aphasia have been found to experience difficulties accessing services through Centrelink (Booth, 2012), the public interface of the Australian Government's Department of Human Services responsible for the provision of social security payment to, among others, people with disabilities. In interviews about their experiences with this government agency, people with aphasia reported that additional time, accessible interactions, information and processes, and service relationships with individualized approaches were needed to facilitate their engagement, but that none of these things was currently being provided.
Aphasia and access to education
The notion of access to education is important in addressing both equity within the education system, and opportunities that seek to grant equal opportunities in employment beyond course completion (Santiago, Tremblay, Basri, & Arnal, 2008). There has been very little research on the environmental factors that influence access to education for people with aphasia. The number of people with aphasia who make the decision to either enter or return to higher or further education following the onset of aphasia is unknown.
Existing literature on the experiences of people with aphasia in the educational sector describes both experiences in which the challenges of trying to access education lead to withdrawal (e.g., Parr, Byng, Gilpin, & Ireland, 1997) and those in which academic success was achieved despite these challenges (e.g., Bruce, Parker, & Renfrew, 2006; Parr et al., 1997). That is, in addition to the person's language impairment, the findings reported in the literature revealed environmental barriers experienced by people with aphasia in the educational setting. These barriers can grossly be categorized into two areas: (1) poor awareness of aphasia and its consequences within the education sector and (2) a lack of responsive and flexible systems to support the needs of people with aphasia in educational settings. These categories are explored in further detail later.
Poor awareness of aphasia and its consequences within the education sector
To meet the needs of people with aphasia in an educational context, their needs must first be understood clearly by the educational provider. When staff have a lack of awareness or understanding about a student's disability, students are more likely to have negative educational experiences (Holloway, 2001). Facilitating an understanding of aphasia within educational settings is likely to be made difficult by a poor public awareness and understanding of the aphasia in the community (Code et al., 2016). The “invisible” nature of aphasia may mean the obligation of disclosure and seeking accommodations lies with the student with aphasia (Mullins & Preyde, 2013), a process that has been reported as difficult for individuals with a variety of disabilities and may be made more difficult for people with aphasia as a result of their linguistic deficits.
Lack of responsive and flexible systems to support the needs of people with aphasia in educational settings
Because of the high-level language demands in educational settings and the communication difficulties inherent to aphasia, people with aphasia may be limited in their capacity to participate in formal education without learning support (Bruce et al., 2006; Parr et al., 1997). Aphasia can restrict a person's ability to engage with the process of education, which is normally conducted in the spoken and written language modalities, including their ability to meet linguistically focused outcome assessment requirements.
Parr et al. (1997) identified a number of specific teaching methods that contribute to educational success for people with aphasia. However, it has been reported that these methods are not commonly employed. Exploration of education service provision to people with aphasia by Jordan and Kaiser (1996) in the United Kingdom identified a number of small-scale examples of collaboration between SLP services and adult education providers to meet the needs of people with aphasia; however, challenges related to conflicting philosophies were identified. Despite this, the value of collaborations between SLPs and academic staff was also identified by Bruce et al. (2006). They suggest that the model and location of SLP services should enable people with aphasia to seek support from SLPs as their educational circumstances and needs change.
Exploring the intermediary determinants of health and aphasia
The structural determinants of health for people with aphasia, as discussed earlier, operate through a series of intermediary determinants of health. Those structural determinants can be considered to influence these intermediary determinants. The main categories of intermediary determinants of health as outlined in the SDH model are material circumstances, social cohesion, psychosocial factors, behaviors, and biological factors. The following section reviews the evidence regarding environmental factors that influence access to interpersonal relationships for people with aphasia and access to the health care system for people with aphasia.
Aphasia and interpersonal relationships
Without the speed or ease of prestroke verbal output, are people with aphasia able to maintain and create new social relationships? Language has been described as the “currency” of relationships (Parr et al., 1997, p. 44). Thus, the loss of language with aphasia deprives the individual of one of the fundamental ways to maintain relationships (Hilari & Northcott, 2006). There is substantial evidence to support the assertion that aphasia has a profound impact on interpersonal relationships, described as a psychosocial factor within the SDH. The effects of aphasia have been described in regard to many different kinds of relationships, including intimate relationships, relationships with children, and relationships with friends.
There are no data available on the number of marital relationships that break down following one person acquiring aphasia. There are some limited studies on the perceptions and experiences of spouses of people with aphasia that suggest that aphasia impacts spousal relationships in positive and negative ways (Michallet, Le Dorze, & Tétreault, 2001; Michallet, Tétreault, & Le Dorze, 2003). Recent research also indicates that many spouses of people with aphasia experience third party disability that may further compromise their ability to support the relationship. For example, family members of people with aphasia are at risk of developing depression (Grawburg, Howe, Worrall, & Scarinci, 2013a, 2013b), deterioration in their own health (Grawburg, Howe, Worrall, & Scarinci, 2014), changes to their own social relationships (Gillespie, Murphy, & Place, 2010), and recreational activities (Le Dorze & Signori, 2010).
Positive and supportive intimate relationships are a powerful contributor to living successfully with aphasia (Brown, Worrall, Davidson, & Howe, 2012). Access to supportive and meaningful relationships was one of the seven themes identified in a qualitative meta-analysis of interview data from people with aphasia, family members, and SLPs (Brown et al., 2012). The authors concluded that their study reinforced “the idea that living successfully with aphasia can only occur within the context of love, acceptance, friendship, and support from others” (p. 146). This research supports the idea that access to and participation in meaningful personal relationships may serve to buffer people with aphasia against some of the negative impacts of aphasia.
Relationships with children appear more resilient to the impact of aphasia. In a study of 83 people with chronic aphasia, 71% reported that they had the same amount of contact with their children following the stroke (Hilari & Northcott, 2006). This is in keeping with evidence from the broader stroke population (e.g., Astrom, Asplund, & Astrom, 1992). However, less is known about the relationships between younger children and their parents, when parents still have caring responsibilities (e.g., Harlow & Murray, 2001).
Outside family relations, evidence suggests that aphasia affects the nature and quality of interactions between people with aphasia and their friends (Parr et al., 1997). This manifests in reduced social networks and/or reduced quality of social relationships (Cruice, Worrall, & Hickson, 2006; Davidson, Howe, Worrall, Hickson, & Togher, 2008; Davidson, Worrall, & Hickson, 2003). Hilari and Northcott (2006) found that 64% of 83 people with aphasia interviewed reported reduced interactions with friends and 30% reported having no close friendships whatsoever. This loss of friendship is uniquely attributed to the presence of aphasia rather than the stroke more generally. A survey of people with aphasia in the United States found that 75% felt others avoided them because of their communication difficulty (Sarno, 1997). The evidence to date creates a picture of shrinking social networks, while the nature of aphasia further restricts opportunities and ability to seek emotional and informational support (Davidson et al., 2008). It is still possible for people with aphasia to develop and maintain friendships, but this requires the “two way hard work of friendship” as well as creativity and resourcefulness (Pound, 2013, p. 354).
Aphasia and access to health care
Recent research has addressed the factors that influence the success and failure of communication between patients (including those with aphasia and other communication disabilities) and health care providers across the continuum of health care (Blackstone, Beukelman, & Yorkston, 2015). When patients and health care providers manage to establish shared meaning, positive health care outcomes are likely (Blackstone et al., 2015). Conversely, communication breakdowns within the health care sphere lead to negative health outcomes, increased length of hospital stay, higher rates of readmission, increased costs, an increase in negative events, and a reduction in patient satisfaction (Bartlett, Blais, Tamblyn, Clermont, & MacGibbon, 2008; The Joint Commission, 2013).
Without access to appropriate and relevant communication support, people with aphasia may experience a reduction in their capacity to express their health care needs and actively participate in decisions regarding their own health care (O'Halloran, Worrall, & Hickson, 2012). Poor communicative access within health care can lead to damaging and negative experiences for people with aphasia, including a reduction in the reported satisfaction with the health care experience (Tomkins, Siyambalapitiya, & Worrall, 2013), an increased risk of inappropriate or inadequate service provision (Hemsley et al., 2013), and an increased likelihood of the occurrence of adverse events (Bartlett et al., 2008).
The SDH model offers clinicians and researchers a way to conceptualize the cumulative effect of inaccessible environments on the long-term health and well-being of people with aphasia. The authors are not suggesting that Hank's story is typical for people who acquire aphasia, nor is his story rare. Aphasiologists have much to learn regarding how SDH can enrich approaches to aphasia assessment, decision making around the aims and type of the interventions offered, and measurement of intervention effects.
For SLPs, the SDH may challenge traditional views of the clinician's role in the lives of people with aphasia. Viewing the impact of aphasia decades after the onset emphasizes the importance of understanding the impact of many different environments on people with aphasia. The SDH suggests that SLPs need to work beyond the level of the individual with aphasia in formal rehabilitation settings, to address the vast range of systems, services, and policies that have the potential to damage or enhance the long-term health and well-being of people with aphasia (see McAllister, Wylie, Davidson, & Marshall, 2013).
Hank's life following the onset of aphasia is one example of how many different facets of the environment appeared to influence his health and well-being for the long term. His story illustrates the disconnect between how an individual might present initially in a health care setting (e.g., with a clinical diagnosis of aphasia) and the foreseeable and unforeseeable impacts that aphasia may have on that person's health and well-being in the future. Indeed Hank's story serves to highlight the powerful (at times devastating) domino effect that can result from changes in one aspect of the model (i.e., biological factors), which turns a present-day health condition into a long-term social problem that impacts all aspects of life. Given the chronic nature of aphasia and that limited public health care resources are typically frontloaded to acute care and rehabilitation within the first year poststroke, the SDH poses interesting questions on how clinicians might serve the needs of people with aphasia by recognizing and reducing the environmental barriers to full participation in life to optimize health and wellbeing for the long term.
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Keywords:Copyright © 2017 Wolters Kluwer Health, Inc. All rights reserved.
aphasia; consequences; disability and health; environmental factors; international classification of functioning; social determinants of health