When an individual is faced with a health or capacity challenge through an illness, ageing or disability, the experience for that person is individual and should be respected.
What individuals may be experiencing on the outside may be different to their internalised world, and may include interwoven aspects of sensory, emotional, cognitive and behavioural elements.
Lumby (1994) believes that experience is knowing about the world and the individual’s relationship with the world, rather than an emotive concept.
The theories supporting this include Piaget’s schemas, Kelly’s personal construct theory and Vygotsky’s social constructivism theory, which similarly represent an individual‘s perceptions of an experience that are formed and resurface at later stages in life.
Additionally, Freud’s instinct and drives theory and Rossouw’s neuropsychotherapy theory depict experience from increasing pleasure and avoiding pain, however individuals with health challenges are experiencing a conflict with these theories. Moreover, the complex interaction of an individual’s experience of health or capacity challenge can be represented through the biopsychosocial-spiritual model of illness.
How internal experiences of illnesses, disability or ageing may be constructed can be explained by many psychological theories. Each theory suggests that an individual takes the input from the health challenge and internalizes it to become the unique experience of each individual.
Possible Psychological Theories
Possible theories that explain the process of the individual include developmental schemas, personal construct theory, neurobiology, drives and instincts from a Freudian perspective and social constructivism.
Piaget explains his theory on developmental schemas as ideas about the world that are formed from a young age and used to understand and to respond to situations (Piaget, 1954). A health challenge that is experienced at an early age can create a schema through internalising the experience, which is stored so if future health challenges arise, these schemas are re-experienced.
To a young person, a health challenge may look completely different to the same experience at an older age. This may create reactions in the older adult whereby the reaction does not appear to be congruent with the experience.
Likewise, George Kelly’s personal construct theory depicts that individuals form constructs about the how the world works from their experiences (Kelly, 2003). These constructs are then used to predict and anticipate future experiences, which in turn determine an individual’s behaviours, feelings and thoughts. Furthermore, Vygotsky’s social constructivism theory shows that individuals learn in response to interactions with their social environment (Vygotsky, 1978). This suggests that individuals experiencing a health capacity issue may learn about how they relate to world through the experience of illness.
Freud’s theory on instinct and drives depicts that individuals strive for maximising gratification and minimising guilt and punishment (Freud, 1959). He believes life is in conflict between instincts and drives, which makes an individual move toward earlier states of development.
Similarly, Rossouw’s (2014) model of the base elements of the theory of neuropsychotherapy suggest a basic need, after safety is established, of pain avoidance and pleasure. With these two theories in mind, an individual’s experiences with a health capacity may generally be psychically painful, therefore that individual may experience more pain than pleasure, and more guilt and punishment than gratification.
The Biopsychosocial-Spiritual Model
The biopsychosocial-spiritual model of care suggests that an individual’s experience in care is a complex interrelationship between biological, psychological, social and spiritual components and may influence the experience of illness.
Sulmasy (2002) suggests the model is based on the individual’s disruption of homeostasis through changes to interpersonal and extrapersonal relationships. The individual’s relationship with their physical body and its processes, and their relationship between their emotions and physical body, are defined as interpersonal relationships; while extrapersonal relationships include the effects of the environment on the individual (Sulmasy, 2002). Furthermore, each aspect of the model can interact and work together in a way to alter the experience of illness.
The biopsychosocial-spiritual model can explain various factors that may influence the experience of illness. This perspective includes viewing individuals from a holistic stance whereby the biological, psychological, social and spiritual aspects are investigated to gauge the experience of the individual’s perspective of the illness.
Internal factors specific to the individual may include birth order, attachment patterns, limbic system, anxiety, and being in tune with sensory experiences. For example, from a biological perspective, studies show that later birth order results in a more severe form of schizophrenia (Gaughran, Blizard, Mohan, Zammit & Owen, 2007). Similarly, groups of children with chronic conditions like cystic fibrosis and congenital heart disease were less often secure as infants than a control group, and showed more disorganised attachments than their peers (Goldberg, Gotowiec & Simmons, 1995).
From a psychological perspective, the limbic system in the brain in closely linked with the socio-emotional processing and self-regulation. The default brain is the limbic system, which behaves irrationally as it loses the prefrontal cortex, reduces blood flow in the limbic system. Attitude toward illness is one pathway whereby subjective disease severity impacts psychological functioning in adolescents and young adults with allergies (Molson, Suorsa, Hullman, Ryan & Mullins, 2011).
Additionally, internal sensory processes have shown to be related to how individuals experience and interact with the environment. Sensitive responses to environmental stimuli might result in behaviours that decrease social experience, quality of life and recovery. For example, Pfeiffer, Brusilovskiy, Bauer and Salzer (2014) found adults who self reported as having low levels of sensory sensitivity, reported lower social activity levels and slower recovery from serious mental illnesses.
Physical Illness and Mental Health
The process of a disease on mental health has been shown to have an effect on the experience of illness. This may include unbounded illness whereby the individual perceives themselves as different to others.
Additionally, how the individual got the illness, as in sudden accident, or a longer term of illness for example a tumour, or many operations, may affect the experience of the illness.
It has been shown that individuals with unbounded illnesses, that is, out group issues where the illness is physically visible, affects their mental health. A recent study by Lambert and Keogh (2015) found children and young people with long term health conditions like diabetes, epilepsy and asthma, can experience feelings of being different physically, socially and psychologically. The review found that children experience restrictions and adjustments in everyday life aspects and treatment regimens, and find that communication including disclosure, stigma and support are affected. Due to these experiences, children with long-term conditions are more susceptible to low self-esteem, body image, social role definition and peer related issues (International Diabetes Federation, 2013). This has been shown to result in difficulties in emotional coping and they are at increased risk of psychological disorders (Petersson, Simeonsson, Enskar, & Huus, 2013).
Likewise, how the illness began in an individual has been shown to affect their mental health. A study by Miyabayashi and Yasuda (2007) investigated how sudden death and prolonged death affected the general health, depression and grief of bereaved spouses and parents in Japan. Findings indicated that sudden death including suicide, accidents and acute illnesses had a greater effect on general health and depression. Interestingly, differences among groups were greater for emotional reactions than for physical distress, with suicide showing to be the greatest bereavement.
Relationships and social support have been linked with physical health conditions. Studies show that low levels of social support for individuals, indicate higher mortality rates especially for conditions like cardiovascular disease (Rutledge et al, 2004).
A study by Zhang, Norris, Gregg and Beckles (2007) found that social integration affects mortality from diseases like diabetes, while social interactions between family and friends was a predictor of self-reported disease outcomes in individuals with diabetes, hypertension, arthritis and emphysema (Tomaka, Thompson, & Palacios, 2006).
Additionally, social support has been shown to influence health behaviours (Umberson, 1987). For example, a study of cancer survivors found lack of support or loneliness can negatively influence health behaviour adherence (Thompson, Littles, Jacob & Coker, 2006). Health behaviour adherence includes both supportive and controlling behaviours; for example, partners that showed supportive behaviours predicted better mental health, while controlling behaviours showed poor mental health and health behaviours in partners during cardiac rehabilitation (Franks, et al, 2006). This indicates that support to ill partners should be gentle and not controlling, in order to motivate behavioural changes to have a more positive effect on the experience of illness.
The drugs taken and their side effects have an effect on the experience of illness – for example, drugs like corticosteroids have been shown to lead to disturbances in emotions in patients on haematological treatments (McGrath, Patton & Janes, 2008).
Knowledge regarding similar brain functions for illnesses, for example major depressive disorder and chronic pain, have shared neurophysiological mechanisms (Psychiatric Times, 2009). This indicates the importance of including knowledge of drug treatments and side effects, in order to be aware of and listen to the experience of the individual’s illness. In order to access the individual’s experience of illness, a psychologist may pursue individual sessions with clients or in-group sessions. They may also work within interdisciplinary teams in order to access all aspects of the experience of illness; during individual or group sessions, psychologists may access the client’s experiences using assessment tools assessing quality of life.
Likewise, multidisciplinary care is an approach to patient care whereby planning for and monitoring the care throughout the patient’s recovery or treatment is done within a team environment (Mitchell, Tieman & Shelby-James, 2008). Professionals from a range of disciplines work together to help the individual as extensively as possible; for example, doctors, specialist doctors and nurses all provide treatment and care for an individual with illness, and they all play a role in the experiences of illness for an individual. The team may all work under the same company or may come from varied organisations including private practice.
As the individual’s condition changes, the team will vary depending upon the psychosocial needs of the individual (Mitchell, Tieman & Shelby-James, 2008). Additionally, the ability to contextualise the client’s illness, for example an understanding of the client’s story of illness, and working treatment around the client’s context, will ensure a more productive outcome.
Furthermore, the individual’s treatment may be integrated within the multidisciplinary setting to provide many different approaches, including but not limited to, supportive counselling, behaviour analysis, gestalt therapy, and CBT.
In summary, experience of an illness in an individual is based on the individual’s perception of the how their internal world is represented. This may be formed from an early age through schemas and can have an effect on how they experience illness later in life.
In order for a psychologist to best guide an individual, listening to their lived experiences holistically using the biopsychosocial-spiritual model and gauging a benchmark for their subjective wellbeing, can have the best effect for accessing their experience of illness.
Author: Cassandra Gist, BPsych (Hons), MPsych, MAPS.
Brisbane Psychologist Cassandra Gist has a Masters in Health Psychology, and is able to treat clients aged from two years old right through to adulthood. She is experienced in working with Aboriginal and Torres Strait Islander communities, and children and families affected by Autism Spectrum Disorder.
To make an appointment with Brisbane Psychologist Cassandra Gist, try online booking – Loganholme or call M1 Psychology (Loganholme) on (07) 3067 9129.
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