INTRODUCTION

This chapter discusses the psychosocial facets of chronic illness. People have unique and sometimes very complex lives. Chronic conditions need to be addressed in the context of a person’s life and it should be acknowledged that no one knows that life better than the person who lives it. This expertise in one’s own life is an essential component in forming therapeutic partnerships from which care can be orchestrated.

Notions of recognising the diversity amongst people, including cultural differences, empowerment, collaborative decision-making and person-centredness are explored with regard to people with a chronic illness.

CHRONIC ILLNESS IS A BIT LIKE CRICKET

If chronic illness was a sport it might be test match cricket, while an acute illness might be the 100 m sprint. These two events have much in common; they are both sport, involve physical competition, include spectators and competitors, have a beginning and an end and have defined rules. They are also very different. Cricket can last for five days (and still be a draw) where the sprint can be over in 10 seconds. The analogy works for illnesses in several important ways. One way is that a small error or a tactical decision in the sprint can have immediate and permanent consequences on the result, while in a five-day test match, there are many twists and turns and it is hard to say that any one error is directly responsible for the outcome and that tactics may be changed many times to respond to the circumstances. In chronic illness, as in cricket, there is time to make decisions, review them and try different approaches without immediate and permanent consequences.

ILLNESS VERSUS DISEASE

Purists will tell you that cricket is more than a sport. They say that it is the sound of leather on willow, white flannel on green fields surrounded by picket fences, good sportsmanship and gentlemanly conduct. It is debatable whether these are really prominent, defining features, but it is true to say that to a cricket aficionado, there is more to cricket than the game itself. In other words, to cricket lovers, the lived experience of cricket involves more than just the game.

It is often the case that when talking about an illness there is an emphasis on a particular disease or condition. This view is perhaps dominant within a Western culture because of the prominence of the biomedical lens through which we observe health-related phenomena. The biomedical model focuses on the structure and functions of the parts of the body and on the pathophysiology of particular medical conditions. Illness, however, is much broader than the features of a particular disease. The notion of illness addresses all the aspects that encompass the lived experience of someone with a chronic disease (Asbring, 2001; Larsen, 2006). In this regard it is important that the lenses through which we look at chronic conditions encompass the much broader aspects of the life of the individual.

It is important to recognise factors that affect not only body systems, but also the psychological and social elements of a person’s life. This extends to the different perspectives and unique attributions of an individual in response to their chronic illness (Caress et al, 2001) and incorporates aspects related to their lives, but external to the disease, such as carers, families and physical environments (McMurray, 2007).

The biomedical model places a strong emphasis on ‘curing’, which does not fit comfortably with the person with a chronic illness or disability (Fennell, 2003). For these people a cure is usually not possible and any attempts to orient treatment towards a cure may ignore the fuller human experience. There is another parallel to cricket here. In cricket matches, sometimes the aim is not necessarily to win the match but to avoid a loss by eking out a draw.

Caring for someone with a chronic illness is different from caring for someone who needs nursing care for a short period of time and is likely to resume their previous life afterwards. In acute episodes treatment decisions are often made by the healthcare professional as the need for decisive action is often great and the consequences of delay may be profound (Montori et al, 2006). There may be little opportunity for patient participation under these circumstances. Patients often adopt the ‘sick’ role and are happy to follow orders so that they may get well (Montori et al, 2006). The healthcare team, rather than the patient, often takes responsibility for the management of the condition.

In the acute context, the aim of the treatment is to cure the disease and allow life to continue without the illness or condition, while treatment decisions for chronic conditions aim to incorporate the illness into their life, to minimise the impact of the disease and allow participation in life to the fullest extent. Treatment decisions for a person with a chronic illness may not result in ‘cure’ but may result in healing. Taylor (1995) describes healing as ‘progress on a forward path, that moves one closer to a fuller sense of self, whether it be towards improved health or towards a peaceful death’ (Taylor, 1995, p. 100).

Ideally, healing occurs within an ongoing partnership between the healthcare team and the person with a chronic illness, the patient taking an active role in setting goals and carrying out the decisions. The partnership between healthcare professionals and patients allows the choices to be revisited and revised on an ongoing basis.

An awareness of the biopsychosocial and cultural experiences associated with chronic illness is useful in order for the healthcare professional to be able to give appropriate and sensitive care. Biopsychosocial factors can be described as the combination of biological (factors affecting the function of the body, related to symptoms and treatment), psychological (thoughts, emotions and behaviour, related to self-concept, body image and sexuality) and social factors (interactions with others, the extent of support and place within a community). Recognising that these factors interact and shape the patient’s experience of a chronic illness help us to understand that the experience is unique for each individual. Valuing this unique, lived experience of the person with a chronic illness will assist in moving beyond the biomedically oriented concepts of nursing practice to engage in more holistic approaches.

A PERSON IN THE CONTEXT OF THEIR LIFE

The overall social context within which a person lives includes their cultural background, socio-economic status, employment, social networks and physical living environment. These are all significant factors in describing the lived experience of someone with a chronic illness. In other words, people come from diverse backgrounds and the lived experience of their life is a unique expression of this.

Each person has unique personal characteristics and circumstances that may inform their response to a chronic illness. Among the personal characteristics that may make one person’s response to a chronic illness very different from another’s are creativity, life skills, values, world view and the ability to adapt to change. Among the circumstances that are of influence are the broad range of social factors that make up life in a society. For example, economic aspects of people’s lives have implications for individuals, their families, and for society; low socioeconomic status and unemployment have been seen to be determinants of ill-health and if a family has a physically or mentally ill family member the risk is multiplied (McMurray, 2007).

Our culture plays a large part in determining our perceptions of health, illness and disability. Awareness of cultural diversity and the provision of culturally competent care are very important in caring for people with a chronic illness (Drew, 2008). Culture influences our beliefs and values and determines, in large part, our behaviour.

In addition to culture, people have social roles beyond that of simply a person with a chronic illness. There are many roles in life that are essential to describing who we are (Asbring, 2001). A person with diabetes is not only a person with a chronic illness: they may also be a father, a carer, a daughter, a boss, a banker or a cricketer. Who we are is more than the sum of our ills.

Given that these roles describe our different connections with social networks, it is important to consider the people that a person with a chronic illness may have around them in their life. What sorts of relationships do they have with the people that are around them? The presence of people who can provide support to someone with a chronic illness is another factor that influences the lived experience of someone’s life (Swallow & Jacoby, 2001). It is important to consider what support and care is available to people with a chronic illness, but also to consider what is expected of them.

Carers of people with a chronic illness may need support as well. These people bring valuable knowledge and expertise into the lives of people with chronic illnesses, but it is often the psychosocial needs of the carer that come to the fore in allowing the ill person to be adequately cared for. It is important to recognise the needs of carers as well as the needs of the patient (Miller & Timson, 2004; Öhman & Söderberg, 2004).

MODELS

You have seen that people are different and are influenced by a wide range of factors. Chronic illnesses are also very different and the course of an illness may be very different for each individual. A person with a chronic illness will go through many changes throughout the course of their illness. The way people adapt to their illness or disability has been extensively researched and models of psychosocial adaptation to chronic illness and disability have been developed.

Chronic illness models or frameworks describe the experience of adaptation, deterioration and rehabilitation and refer to the impact of the illness on all involved. They can be described as a dynamic process that integrates elements such as the patient’s past experience and coping and cognitive ability, as well as the patient’s social networks, their environment and the availability of resources (Livneh & Parker, 2005). In this dynamic process ‘most individuals appear to move toward renewed personal growth and functional adaptation’ (Livneh & Parker, 2005, p. 18).

Two models will be mentioned here. Both models are useful as they provide an opportunity to be person-centred in our healthcare delivery.

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