Impact of Aphasia on Health and Well-being

Abstract

This discussion paper considers the impact of aphasia on health and well-being, and following an in-depth exploration of relevant literature, provides suggestions for appropriate nursing interventions in respect of this relatively common condition following stroke.

The introduction states that effective communication is essential to holistic care and positive outcomes for individuals affected by aphasia. However, when verbal communication is absent, nurses fail to adequately utilise alternative strategies so that the standard of nurse/patient communication is frequently poor.

The discussion introduces the Theory of Human Scale Development. This theory emphasises that quality of life depends as much upon self-actualisation and relation-building as on physical health. The theory is used as a framework within the discussion in order to highlight the significance of communication to quality of life, and how its loss has profound psychological and social consequences. By utilising the theory, the discussion demonstrates that nursing care delivery must address loss of self-actualisation and relationship-building abilities, as well as physiological communication skills.

The discussion reflects upon how aphasia results in ‘loss of self’, and how the situation is exacerbated by inadequate healthcare communication strategies such as nurse-controlled conversation, ‘talking-over’, and ‘elderspeak’. Suggestions are offered regarding more appropriate strategies. Efficacy of family input is considered; nursing competence regarding language practice therapies is discussed, and the ‘quest approach’ is explored.

Next, the discussion reflects upon the impact of aphasia on relationships. Aphasia denies access to support networks and results in isolation, stress, and loneliness. The individual’s predicament is worsened by negative nursing responses such as communication filtering and avoidance tactics. The discussion reflects upon positive nursing strategies, which alleviate effects of aphasia on individuals’ social health. Concept analysis and self-awareness exercises as methods of enhancing compassion skills are explored. The social model of disability is discussed in order to highlight the benefits to individuals of environmental adaptations. Also, the social benefits of aphasia-group affiliation are discussed.

The discussion concludes by emphasising that fundamental human needs involve social and psychological as well as physical aspects. Nursing interventions must therefore address all needs in order to provide holistic care in its fullest sense.

Key Words

Aphasia: nursing: relationships: self: Theory of Human Scale Development

Summary Statements

What is already known about this topic

• Good communication between nurses and patients is essential to the provision of quality healthcare that protects patients’ rights, autonomy and choice.
• Aphasia compromises nurse/patient communication leading to discrimination in health services, suboptimal care, poor long-term outcomes, and restricted rights.
• Communication difficulties faced by individuals with aphasia risks ‘loss of self’, and diminishes the beneficial impact of social integration on health.

What this paper adds

• The multifarious impact of aphasia on the lives of individuals with the condition must be recognised and acknowledged by nurses.
• During their day-to-day nursing activities, nurses can facilitate the immediate communication needs of individuals with aphasia.
• Nurses can initiate aphasic individuals’ abilities to function independently and autonomously in the wider world via supporting the maintenance of personal identity and social integration.

Introduction

It has long been acknowledged and purported that good communication is essential to the provision of quality healthcare as it is integral to effective clinical assessment, health promotion, and patient choice and autonomy. Models of communication and research studies (Peplau, 1952; Fosbinder, 1994; Charlton et al, 2008) suggest that care delivery and health outcomes are improved when nurses use communication as a reciprocal interaction to express concern and commitment, and in return invite trust and human connection. These texts demonstrate that proficient interpersonal skills transform patients from objective clinical tasks to individuals meriting empathic, holistic care.

However, because most communication strategies depend upon speech, the expediency of interpersonal relationships becomes severely compromised for individuals who experience aphasia as a consequence of stroke. Indeed, although the World Health Organisation’s (2001) definition of communication impairment encompasses verbal, non-verbal and graphic abilities, Finke et al’s (2008) systematic review finds that nurses continue to focus on stroke patients’ inadequate ability to verbally meet communication needs. Non-verbal messages are assigned a secondary, supporting role, and are therefore not adequately exploited as legitimate alternative strategies. The subsequent poor standard of professional/patient communication, described as ‘appalling’ in the United Kingdom’s National Sentinel Stroke Audit (Intercollegiate Stroke Working Party, 2009, p.12) has serious ramifications. O’ Halloran et al’s (2008) literature review suggests that health professionals’ inability or unwillingness to effectively engage with individuals affected by aphasia leads to discrimination in stroke services, suboptimal care, poor long-term outcomes, and restricted rights.

Theory of Human Scale Development

To avoid the suboptimal care of patients with aphasia, nurses must realise the necessity of effective communication to health and well-being. If nurses are to be motivated to explore, improve and exploit communication strategies as therapeutic tools, they must, in the first instance, understand the devastating impact of aphasia on quality of life. An analysis of aphasia in relation to the Theory of Human-Scale Development (Max-Neef et al, 1991) helps to illustrate its effect on the individual.

According to the Theory of Human-Scale Development, quality of life depends upon the satisfaction of nine classes of interrelated ontological fundamental human needs (figure 1). Of these, only ‘subsistence’ relates to physical health, the others being concerned with psychological and social issues associated with the sense of ‘self’ and relationships. Because quality of life correlates with the number of satisfied needs, if a synergic satisfier (one satisfier that satisfies multiple needs) such as the ability to fluently verbally communicate, is removed, the impact on life quality is devastating (figure 2). Charmaz’ (1983; 1995; 1999) symbolic interactionist perspective reaches similar conclusions. These grounded theory studies of chronic illness demonstrate that the ‘self’ is developed and maintained via self-actualisation and social relationships. Where illness reduces individuals’ participation in society, and prompts negative reactions from others, feelings of discreditation and loneliness follow. Individuals’ beliefs that they are encumbrances on society rather than valuable contributors, lead to suffering and the ‘loss of self’. It is essential, therefore, that rehabilitative therapies should result in a synergic effect so that ‘self’, relationships, and thus quality of life are improved and maintained to the highest possible level (figure 2).

However, many individuals with aphasia bemoan the fact that health professionals consistently focus on physical, biomedical definitions which view the condition as synonymous with physiological stroke events, rather than separate aphasia disability experiences (Liechty and Heinzekehr, 2007; Shadden et al, 2008; Wertheimer, 2008). This leads to the dismissal of psychological and social aspects of communication impairment and a thwarting of attempts to address them. Thus, the biomedical perspective, which defines aphasia as an inability to use or comprehend language as a consequence of injury to the cerebral cortex, results in the comment, ‘I have aphasia’, generating the response, ‘You mean you had a stroke’ (Liechty and Heinzekehr, 2007, p.316). But, as Liechty’s autobiographical account illustrates, aphasia is not an ‘objective condition’ but a ‘subjective reality’, and focusing on the physiological brain damage both ‘de-emphasises the pain that aphasia causes’ and ‘denies the continual struggles faced’ (p.316).

Liechty’s experience suggests that a psychosocial definition is more appropriate to describe the full extent of the consequences of aphasia to the individual. Sundin et al’s (2000) wider definition describes the condition as a defect in the use of language which causes extensive damage to psychological and social well-being resulting in isolation and depression. This study suggests that understanding the meaning of the illness for the individual rather than concentrating on the underlying physical causes, is the true initiator of holistic healing. O’ Halloran et al (2008) agree. This systematic review proposes that a biomedical perspective impoverishes care delivery because attributing communication breakdown to the disease process reduces nurses’ responsibility and motivation to develop ongoing communication strategies. The review suggests that a psychosocial perspective where nurses view communication impairment as an illness experience as well as a medical phenomenon, promotes the idea that difficulties result from impaired interaction between nurse and patient. This increases nurses’ feelings of responsibility to overcome communication barriers and seek out the individual behind the disease.

It is apparent, then, that reference to the Theory of Human-Scale Development helps to illustrate how a professional attitude which attempts to satisfy all fundamental human needs, not just the physical need of subsistence, subsequently leads to richer, more meaningful outcomes.

Although fundamental human needs are to an extent, interrelated (figure 1), they are broadly split into three categories. The discussion paper will explore the impact of aphasia by focusing on self-actualisation and relationship needs.

Self-Actualisation Needs

Impact of Aphasia on the ‘Self’

Rogers’ (1967) personality theory states that self-concept and self-perception are fundamental components of personal identity. He proposes that because life-meaning and behaviour are essentially purposeful, individuals require freedom to make choices, and create and develop their own personalities, in order to construct a valid presence in the world. Of course, language is the core of this process of self-construction. Without language, the ability to narrate lived experiences is lost. The individual cannot inform the world who and what he/she is, or understand who and what others are, hence is unable to find an appropriate place in the scheme of things.

Shadden’s (2005) literature review describes this predicament as identity theft, a state of affairs in which individuals with aphasia are ignored and invisible. However, Kagan’s (1995) ‘masking of competence’ model refutes this, proposing that the individual is transformed rather than rendered invisible by aphasia. The model states that because communication impairment makes it difficult to perceive the individual’s functional mind, it becomes difficult to envisage capacity. With capacity hidden, the individual is transformed from a person to a mere physical presence and is often viewed as a burden with little social value. According to Charmaz (1983), witnessing one’s former self-image ‘crumbling away’ is itself a ‘fundamental form of suffering’ (p.168). Time and again, autobiographical narratives refer to the pain experienced when the ‘self’ is reduced by an assumption that language loss is synonymous with the loss of intellectual and cognitive abilities (Neal, 1988; Bauby, 2008; Liechty and Heinzekehr, 2007). Bauby (2008) summarises the feeling thus, ‘[They] left no doubt that henceforth I belonged on a vegetable stall and not to the human race’ (p.90).

Buber (1958) refers to this objectivising of people as an ‘I-It’ relationship (as oppose to an ‘I-Thou’ relationship defined by its reciprocal and mutually respectful nature). Aphasia renders the establishment of a nurse/patient ‘I-Thou’ therapeutic relationship particularly challenging, because sharing and understanding become difficult to achieve. Unfortunately, this often results in ‘I-It’ communication within the healthcare arena, which in nursing, is intrinsic to detached task-orientated care. According to Gordon et al (2008), this denies individuals with aphasia the freedom to control and direct their own lives. Gordon et al’s (2008) observational study concludes that staff control conversations and focus dialogue on their own nursing-task goals. The study’s use of conversation analysis demonstrates that patients rarely initiate conversations and therefore have little influence over topics. In addition, due to heavy reliance on the sequential context of dialogue in order to maximise understanding, individuals with aphasia find it difficult to alter the course of conversation to suit their requirements. Such asymmetrical, task-orientated communication is neither therapeutic or responsive to holistic needs. This results in a reduction of the ‘self’ and a denial of individuals’ rights to participate in their own care or in the creation of their own future. According to Wertheimer (2008), curbing the freedom to express the ‘self’ commonly leads to feelings of entrapment. Wertheimer’s (2008) detailed analysis of post-subarachnoid haemorrhage experiences suggests that language difficulties and loss of control during hospitalisation contribute to depression, and dreams and hallucinations, which frequently involve images of imprisonment and dictatorial authoritarianism.

The negative impact of nurse-controlled conversation is exacerbated further by persistent occurrences of ‘talking over’ patients. Flegel’s (2008) short article acts as a reminder that ‘talking over’ is unethical because it contradicts health professionals’ codes of conduct that stipulate patient autonomy is paramount during care delivery. Quoting Kant’s (1785) argument that autonomy depends upon the hypothesis that all individuals have unconditional worth, Flegel (2008) believes that ‘talking over’ signifies to patients that their presence is of no consequence and therefore they are not autonomous.

‘Elderspeak’ also diminishes autonomy. This speech style is generally used as a means to communicate with elderly patients, but research confirms that it is commonly used by nurses when encountering individuals with physical, cognitive and communication disabilities (Kemper et al, 1998; Williams et al 2004; Melton and Shadden, 2005). Williams et al (2004) describe ‘elderspeak’ as a demeaning mode of communication similar to baby talk that features exaggerated, simplified, repetitive language. Because ‘elderspeak’ stereotypes elderly and disabled patients as incompetent and incapable, individual potential and progress may be ignored, thus reducing control and the sense of ‘self’ even further.

Reactions to Loss of ‘Self’

Unsurprisingly, individuals with aphasia struggle to instigate the fight to rescue the ‘self’, and often surrender to discreditation. Charmaz’ (1983) explanation that self-concept depends upon reflected images of the ‘self’ by others is confirmed by Simmons-Mackie and Damico (2008). This study of communication therapy sessions suggests that external negative responses to individuals with aphasia leads to internal negative perceptions of the ‘self’ and a silencing of the ‘voice’. Poor nurse communication techniques based on task-orientated conversation, ‘elderspeak’ and ‘talking over’ compound this internalisation process. According to Ryan et al’s (1986) seminal literature review and subsequent theory of ‘dependency over-accommodation’, implications of incompetence and diminished capacity which arise from such condescending speech styles lower individuals’ confidence and self-esteem. This increases dependency and passive acceptance of care, and consequently promotes feelings of worthlessness and powerlessness. Parr et al (2003) agree. This literature review reports that individuals faced with inadequate communication attempts of service providers, feel so diminished that they often apologise for their own existence.

By reflecting on the impact of aphasia on self-actualisation needs, it seems that the nursing role in care delivery should involve supporting the individual to both recover the pre-aphasic ‘self’ and connect this ‘self’ to the new disabled identity. In order to achieve this, the nurse must firstly get to know the patient as a person, then secondly, empower that person to regain the creativity, confidence and freedom required to control his/her own life.

Nursing Implications – Use of Family

Liaschenko and Fisher (1999) identify ‘person knowledge’ as integral to the establishment of effective therapeutic communication and holistic care. The acquisition of this knowledge involves knowing the patient’s private biography with a view to revealing the unique individual. Where aphasia inhibits direct verbal interaction between nurse and patient, family and friends can relay information and re-construct much history, therefore contributing to the satisfaction of a range of fundamental human needs.

According to Williams and Davis (2004), this indirect narrative is invaluable as it allows the nurse to participate in individualised communication when speaking directly to the patient. This deters any tendency for task-focused interaction or ‘elderspeak’, which in turn, reinforces the individual’s sense of ‘self’. There are barriers to implementing such interaction however. Paradoxically, despite, for example, British Government calls for improved professional/patient/carer communication (Intercollegiate Stroke Working Party, 2009), some studies report that nurses’ efforts to personalise care by informal chat with patients and families are thwarted by sociopolitical systems that prioritise task completion over ‘person knowledge’. (McCabe, 2004; Speed and Luker, 2004). Also, Fairburn’s (1994) study of attitudes to visiting hours reports that nurses often feel patients and relatives resent staff presence as an intrusion upon their private time together.

Perhaps the use of patient diaries can help overcome these barriers. Combe’s (2005) introduction of diaries in the intensive care setting demonstrates that by encouraging families to produce ongoing written narratives, which are left at the patient’s bedside, readily accessible relevant information concerning what is significant and individual to the patient is made available. This data can be utilised and built upon in later nurse/patient interactions. Research into the use of diaries in aphasia care should therefore be undertaken.

Families are also useful when nurses are trying to ascertain the individual with aphasia’s immediate concerns and opinions. Goodwin’s (1995) well-cited case study illustrates that needs are more easily interpreted when relatives, familiar with the individual’s gestures, facial expressions and idiosyncrasies, and who share common social contexts with him/her, are on hand to translate. Indeed, Finke et al’s (2008) systematic review finds that, where nurses are prepared to ask families for suggestions, or written directives, regarding the meanings of the individual’s non-verbal strategies, communication is much more efficacious.

In terms of advocacy, Hedberg et al’s (2008) study of multi-disciplinary care-planning meetings demonstrates that an in-depth knowledge of the individual with aphasia’s life and views, equips family members to act as advocates in the negotiation of care needs and future plans. The research therefore concludes that nurses require training in how best to involve relatives in the decision-making process in order to ensure individual needs remain salient.

While the recommendation to involve families in the communication process is essentially sound, much of the proposing nursing literature quoted above nevertheless fails to fully explore the potential risks to patient autonomy of relying heavily on alliances with relatives. Translation literature (Englund-Dimitrova, 1997; Bradby, 2001; Leininger and McFarland, 2002) confirms that any form of interpretation via a third person amplifies the chances of misinterpretation. However, the risk is further heightened by relatives’ conscious or subconscious propensity to distort, omit or add to the patient’s messages and opinions in order to address their own concerns. Shadden et al’s (2008) review of autobiographical narratives reports that, while the well-being of patients is the central concern of most families, disability caused by stroke has a significant negative impact on the lives of all close family members. This may result in the interpretation of aphasic communication being influenced by the intermediary’s own slanted perspectives. Thus, relatives’ feelings of guilt, fear, stress, and fatigue may filter out some of the true messages that the individual with aphasia is trying to express. Ryan et al (1986) offers a more cynical consequence to family advocacy by suggesting that it may undermine the individual’s power to control situations, and can even disguise the sense of ‘self’ by recreating and redefining elements of the individual’s history, personality and wishes during the advocacy process.

Hence, although it is helpful to use family knowledge to obtain patient information, nurses must recognise that individual’s needs may not be adequately supplied by biased intermediaries. Nurses must therefore be able to use their own disinterested objective strategies to reach an understanding of the individual with aphasia’s meaning.

Nursing Implications – Competence

Theory and research which explores the meaning of caring (Halldorsdottir and Hamrin, 1997; Brilowski and Wendler, 2005; Chang et al, 2005) states that a fundamental strategy when nursing any illness is the alleviation of the patient’s fear that nothing can be done to treat the condition. This literature reveals that while patients appreciate expressive caring behaviours, competence when performing instrumental therapies, is considered imperative to a secure caring base. As Halldorsdottir and Hamrin (1997) assert, ‘caring without competence is meaningless’ (p.123).

It is apparent that in aphasia, where preservation of the ‘self’ is at stake, the nurse needs to convey competence and confidence in attitude and execution of language practice therapies, so that the individual with aphasia feels secure in the knowledge that recovery of identity is possible and in hand. Nystrom’s (2009) phenomenological study of interviews and biographies finds that such provision of security via nursing competence encourages patient hope, motivation, and ‘fighting spirit’ (p.2509). Finke et al (2008) believes that nursing competence in language practice therapy requires training in basic speech therapy, familiarity with augmentative and alternative communication, and regular consultations with speech and language therapists. However, currently, none of these schemes are widely implemented. Hemsley et al (2001) suggests this is due to individual and organisational attitude barriers, which view specialised communication techniques as both too time-consuming and beyond the remit of nurses. Finke et al (2008), proposes that time and resources spent on enhancing nurses’ communication competence may prove more efficient than relying on minimal task-orientated interactions. This is because ineffective interactions are at high risk of misinterpretation, ineffective at meeting individual needs, result in frustration, fear and despondency, and may contribute to depression. Also, Nystrom (2009) finds that extended time periods required for personal care support, provide ideal opportunities for skilled practitioners to simultaneously offer language practice (thus reducing rehabilitation time and resources), while allaying patient fears. A participant in the research is quoted thus, ‘One nurse talked to me while helping me to eat and get dressed…that made me feel calm and secure’ (pp.2507-8).

Nursing Implications – ‘Quest’ Approach

Aphasia traps individuals in the present. Struggling to express details of past achievements, individuals’ situations are worsened by an inability to shape the future. In effect, individuals have lost both identity, and the freedom and creativity to restore it. They have ‘lost their place’ in the world. Nystrom (2009) believes that the optimal method of regaining ‘place’ is to defer to individuals’ pre-stroke identities. An awareness of individuals’ previous competencies, allows the nurse to personalise language practice, communication strategies and conversation by basing subject matters on familiar contexts of family, work, interests, and achievements. This enables individuals with aphasia to grasp meanings more easily, but it also helps to maintain a sense of the old valued, accomplished ‘self’, thus providing a structure on which to base rehabilitation goals.

This method, defined by Moss et al (2004) as a ‘restitution’ approach, is fundamentally flawed because it overlooks the fact that for many individuals, aphasia remains a permanent disability. Preoccupation with the old ‘self’ could therefore lead to a painful mourning for what is lost. It could even exacerbate feelings of worthlessness by highlighting comparisons between past abilities and present inabilities.

Moss et al’s (2004) exploration of online illness narratives purports that a ‘quest’ approach is more psychologically healthy. Here, individuals are encouraged to accept their changed circumstances, and envisage and create a different future. For the nurse, this involves using the individual’s history, not as a source of goals, but a source of interests on which new modified goals can be built. This requires strong multi-disciplinary co-ordination skills to bring patient, nurse, speech therapist and occupational therapist together in order to fully explore interests, resources, potential and progress. Furthermore, according to Vickery et al’s (2009) quantitative analysis of self-esteem scales, the nurse must kindly but firmly guide individuals to a realisation of their limitations so that the risk of disappointment is reduced. However, simultaneously, the nurse should demonstrate motivating and commendatory attitudes that elicit a sense of pride from individuals in their gains and successes, which ultimately increases confidence, self-worth and a sense of freedom.

Relationship Needs

Impact of Aphasia on Relationships

Berkman et al’s (2000) review of social integration theory demonstrates that relationships and affiliations are formidable influences on physical and psychological health. The study explains that relationships provide informational, instrumental (practical), appraisal (decision-making) and emotional support, as well as opportunities for social engagement. All these aspects are essential to the endorsement of meaningful roles, the reinforcement of participation and belonging, and the promotion of affection and pleasure. Charmaz (1983; 1999) reiterates that these factors add to the sense of ‘self’ as a valuable entity.

Any process or condition which leads to alienation, separation or disconnectedness from society, adversely impacts on mental well-being and mortality (figure 2). Generative studies by Durkheim (1952) and Bowlby (1991) suggest that relationships serve to buffer detrimental influences of stressful events. These texts illustrate that when consistent, reliable relationships are absent or damaged, psychological stability is weakened and the risk of depression increases. Berkman’s (1988) hypothesis takes this concept further by suggesting that social isolation is itself a chronic stressor resulting in persistent heightened hypothalamic-pituitary-adrenal (HPA) axis responses which consequently accelerate physiologic aging and functional decline.

Because conversation is pivotal to interaction and relationship building, aphasia inhibits individuals from exploiting the health benefits of social integration. Pound et al (2006) believe that conversation is primarily transactional, enabling individuals to participate within a supportive society consisting of mutually supportive relationships. Aphasia therefore, results in an inability to access support strategies resulting in isolation and stress. For example, appraisal support is compromised because individuals with aphasia are unable to ‘talk problems over’ with friends. Likewise, informational and instrumental support may be inaccessible if individuals cannot express their opinions and needs, nor comprehend disseminated messages.

While Laver (1975) acknowledges the transactional element of conversation, he also emphasises its interactional nature, which allows the development of social connections. He explains that it is a bonding ritual, which explores and categorises social position, conveys intimacy, conspiracy, affection and belonging, and as such, its loss can lead to a devastating sense of loneliness.

For individuals with aphasia, whose health is already severely impaired by stroke, it is imperative that nurses are able to support the relationship-building process, and hence, diminish risks of further health problems associated with social isolation. Ramos’ (1992) research concludes that this is best achieved by establishing ‘reciprocal’ or ‘connected’ nurse-patient relationships which involve the development of emotional and cognitive bonds that persuade the individual to feel the nurse ‘is taking on part of the burden’ (p.503). ‘Reciprocation’ also encourages nurses to perceive coping with illness as a shared responsibility. Pound et al (2006) agree, stating that if professionals acknowledge patients are ‘not solo performers, but part of a company of players’ (p.18), then this idea of joint responsibility is accentuated.

However, poor therapeutic relationship development in aphasia remains a common problem. Perhaps this can be explained by Hindle’s (2003) suggestion that any phenomenon, which undermines nurses’ competence as communicators, leads to the implementation of ‘communication filter’ barriers, such as rationalisation and projection. Sundin et al (2000) believe aphasia is a relationship leveller because both nurse and individual with aphasia have difficulty being understood by, and understanding, each other. This situation is uncomfortable for nurses working in a healthcare social construction that is founded upon competency achievement and proficient practice. Balandin et al’s research (2007) validates this idea. This small qualitative study finds that the undermining of competence and power results in rationalisation and projection in the form of defensive attitudes such as ‘its not my job’ or ‘the patient doesn’t need to communicate’ (p.58). These avoidance tactics have been so widespread that Stockwell (1972) included individuals with aphasia in her list of ‘unpopular patients’.

Reactions to Diminished Relationships

Charmaz’ (1983) research, confirmed by Davidson et al’s (2008) case study, reveals how unwillingness or inability of family, friends and professionals to establish effective relationships with individuals affected by aphasia leads to feelings of rejection. This in turn erodes patients’ perseverance to pursue support and comfort, often resulting in retreat and the seeking of solitude. Lyon (1998) refers to this behaviour as constructive because it provides a ‘protective cocoon’ (p.12) in which individuals can rest and quietly contemplate their situation. Likewise, Shadden et al (2008) believe solitude-seeking is beneficial as it allows individuals to recapture the ‘self’ which appears to bolster self-esteem. The authors quote from a patient interv