Psychological aspects of care

In managing any physical health problem it is important to consider not only the biological mechanisms involved in the disease process but also the impact of that condition on the individual person, and the extent that the individual person influences the process of the illness. This broader approach to managing an illness is based on the biopsychosocial model (Engel 1980), which recognizes that an individual’s psychological and social worlds are key influences on both the process and management of illness. An illustration of this is the patient with coronary heart disease whose behaviour of smoking, eating a high-fat diet and living a stressful lifestyle may contribute to both development and progression of the disease. This approach to health problems contrasts with the more traditional biomedical model which views illness management purely in terms of the biological mechanisms at work. This chapter therefore aims to discuss some of the key psychological and social issues pertinent to cardiac and respiratory conditions. In doing this an illness trajectory approach i.e. from diagnosis to death, is taken with issues specific to both paediatric and adult populations highlighted throughout.

GIVING A DIAGNOSIS

There is a great deal of anxiety among health care professionals at the prospect of holding a meeting with a patient or parents to give a medical diagnosis. The anxiety stems from anticipation of the reactions produced by the bad news. The prediction is that the recipients will display high levels of distress and the deliverer of the bad news will be the target of their emotions. It is important to remember that the meeting to disclose diagnosis has a very specific purpose and there is no need to ensure that all angles are covered at this first meeting. The patient and/or parents are unlikely to remember much about the content of the meeting and more about the manner in which the information was given (Brewin 1991, Bush 2001, Quine & Pahl 1986). There has been much written on how to deliver ‘bad news’ but it is important to remember that there are two key aims for the content of the disclosure meeting:

1. To clearly state the confirmed diagnosis.

2. To inform about immediate treatment plans.

Much of the information given will not be taken in initially; it can be given at follow-up meetings when the patient/parents are ready for it and when it is relevant to their own or child’s needs.

Impact of diagnosis in childhood

Diagnoses of cardiorespiratory conditions made within the first few months of life have a particular impact as they come at a time when parents are feeling intense emotions towards their newborn infant, and they are asked to assimilate the information that their baby has a potentially life-limiting illness such as cystic fibrosis (CF) or heart problems. Parents who had been prepared for acquiring childrearing skills now must learn nursing and medical skills and incorporate a group of uninvited strangers comprising the medical team. Clearly, this time will be one of stress and sorrow for parents and a frequently asked question is: ‘Does a diagnosis of a medical condition given early in the child’s life carry with it a risk for damage to the parent–child bond?’

Simmons et al (1995) conducted a study to evaluate whether the mother–child bond was affected when the child has CF. They used Ainsworth et al’s (1978) gold standard assessment of mother–child attachment, which examines the infant’s behaviour following separation and reunion with mother, to compare a group of children with CF against healthy controls. Their findings revealed that the majority of infants (60.5%) demonstrated a secure attachment with mother, with some showing an insecure–avoidant pattern where the child shows little distress on separation and actively avoids the mother on reunion. A small number show insecure–resistant patterns where the child shows extreme distress on separation and then a mixture of contact and rejection on reunion, generally being very unsettled. There were no significant differences in rates of insecure attachments found from the healthy controls, but the implications are that those children with insecure attachments to a primary caregiver will be vulnerable at times of stress.

This suggests that the parent–child instinctive drives to form a bond are not affected by the diagnosis of CF and the same could be said to be true for other cardiorespiratory conditions. Concerns have been raised that the infant diagnosed with CF via newborn screening techniques may harm the mother–child attachment by disrupting the relationship with the disclosure of a life-threatening illness in an infant that had not displayed any symptoms of disease (Young et al 2001). Studies that have begun to examine that question have found no evidence to support this hypothesis (Boland & Thompson 1990). It has been reported, however, that mothers of children diagnosed by newborn screening have higher frequencies of ‘at -risk’ scores for parenting stress than mothers of traditionally diagnosed children (Baroni et al 1997) though these authors suggest that the significant variables influencing maternal well-being are the way in which the diagnosis is communicated and subsequent parental support.

Parents of children with a medical condition are at risk for over-protection of their children. A fear of infection can result in parents restricting the physical movements and toys of their young children. Attendance at playschools and nurseries may be denied; possibly even contact with other healthy children may be limited. Studies of the play interactions of parents of preschool children with CF indicate that mothers are much more interfering and less supportive of their children and the child correspondingly shows less persistence and compliance in play activities (Goldberg et al 1995). The child-rearing practices of parents of children with CF may be affected by the overwhelming need to protect the child. All daily interactions from dressing to feeding to bedtimes may be indirectly altered by the diagnosis.

Talking to children about their diagnosis

Originally, developmental theorists sensibly proposed that a child’s understanding of illness would follow a stage approach mirroring the stages of intellectual development proposed by Piaget (1952). Bibace & Walsh (1980) proposed a six-stage approach from phenomenism at the first stage where the child believes that illness is spatially remote from the person who has the illness to the most advanced stage – termed psychophysiological – in which children recognize an interaction between physical and psychological health. As such, a child in the preschool years would be considered as capable only of concrete operations; i.e. their thought processes are tied to the immediately observable cause and effect relationships. Their understanding of illness arises from observed links: when unwell, see the doctor, who will give medicine that will make you better. There is no concept that the illness is physically within them. Clearly, within this theoretical framework there is no room for a concept of illness prevention, which is the level of understanding required for an illness like CF; you are well but take this medicine to prevent you from being ill.

Anecdotal reports that young children with chronic illnesses have developed a precocious comprehension of their own condition and have a much more competent understanding of illness has led to a re-consideration of the applicability of the stage theory which appears too simplistic (Kalish 1996, Springer 1994, Springer & Ruckel 1992). For sick children a more comprehensive understanding of their medical condition comes about by virtue of their frequent experience with hospital and illness (Eiser 1989). Studies have found that even young children can understand and operate the concept of contagion as originating from invisible sources and they can accept germs causing illness (Eiser 1989, Rosen & Rozin 1993) though they do not fully understand the causal processes (Soloman & Cassimatis 1999).

Children with chronic illness are capable of a more sophisticated understanding of their illness than previously thought. However, there is a barrier to effective communication with children. On interview about their condition, children with CF tend to give consistently similar responses to questions irrespective of age; they know that CF affects the respiratory (85%) and digestive (80%) systems, though don’t know why or how and the majority don’t know the importance of nutrition (70%) (Angst 1993). This suggests that they are repeating received information without assimilating true understanding. Children tend to hold a glossary of CF terms that is separate from how it affects them personally. Although they are quite capable of a decent knowledge of their own health and engage in patient–clinician discussions about treatment, the tendency is to avoid this. Children with CF define themselves as ‘healthy’ irrespective of actual health status and this phenomenon is also found in other chronic health conditions: asthma (Frey 1996) and heart disease (Veldtman et al 2001).

This dual comprehension of CF – a knowledge of the physical components of the disease but an unwillingness to apply them to the self – comes about in part from a parental desire to protect the child from the potentially distressing aspects of CF, what Bluebond-Langner (1991) terms a ‘conspiracy of silence’ and in part from the reluctance of CF health professionals to include the child in consultations. Parents are used by children as envoys and information brokers; they act as buffers from unpleasant information (Young et al 2003).

Impact of diagnosis in adulthood

Diagnosis in adulthood, although also often associated with emotional upset, can be different from a parent receiving diagnosis for their child. This is because the adult will often come to the consultation with thoughts and beliefs about the symptoms that have led to the diagnosis meeting. How the individual’s thoughts match the information that is presented, may determine whether the diagnosis is received with acceptance, distress or in some situations relief.

Our knowledge of how patients think about their health has been influenced by a range of theories over the years (Ajzen 1985, Becker 1974, Leventhal et al 1984). Considerable research exploring patients’ thoughts about physical health problems suggest that for any condition an individual will have a ‘common sense’ understanding about the condition, which has been termed an illness representation (Leventhal et al 1984). This is a set of beliefs that revolves around five key themes. These are:

Identity – which describes the symptoms and label that the individual associates with an illness

Time-line – which is related to how long the condition is thought to last for, i.e. whether it is acute, chronic or cyclical

Consequences – which incorporates thoughts about how serious the condition is and the effect that it will have on the lives of both themselves and individuals close to them

Control – including thoughts about the extent that they as an individual can control their illness and thoughts about whether treatment can control the illness

Cause – beliefs relating to what the person attributes the cause of their condition.

These thoughts are a way for individuals to make sense of any symptoms they experience and will influence the behaviours that they conduct; they may be present even before diagnosis. For example, if an individual has chest pain and identifies it as due to indigestion, they may be unlikely to visit a doctor. However, if the pain was interpreted as a heart attack, a very different response might be expected. Such beliefs are important at all stages of illness from diagnosis to the end stages of a condition and are related to outcomes both physical and psychological. For example, the more chronic in nature the condition is perceived to be, the poorer the psychological reaction to the condition. In contrast if the individual perceives that the condition will be controllable or is caused by factors which may be amenable to change, e.g. by changing lifestyle factors such as diet or exercise, their reaction to the condition is generally more positive (Hagger & Orbell 2003, Moss-Morris et al 2002).

The development of such illness beliefs comes from a range of sources, including:

general lay information about health, such as might be gained through the media or increasingly the internet

information from the social environment, including authoritative advice such as from medical personnel

knowledge of other individuals with similar symptoms

personal experience which relates to the individual’s own previous experience of such symptoms (Leventhal 1984).

The range of sources that feed illness beliefs may explain the variability in reaction to diagnosis of physical health problems and differences in management. Such beliefs must therefore be taken into account at all stages of managing physical illness.

One particularly difficult form of diagnosis in adulthood is that which would normally have been made during childhood, such as late diagnosis of CF. Widerman (2002) reports that CF patients diagnosed as adults can be left feeling confused as often there is uncertainty around diagnosis with perhaps multiple tests before diagnosis is confirmed. Emotional reactions that have been reported include anger, depression, fear and relief (Widerman 2002). For the health care professional working with adults diagnosed with CF over the age of 18, it is important to recognize the significant effect of such a diagnosis and to acknowledge that informational needs may be different from that of a patient diagnosed as a child. Providing time for questions and being alert to the meaning of this for both the patient and their plans for the future, e.g. reproductive health, will be important.

Post-diagnosis

Diagnosis of a chronic medical condition is only the beginning of a potentially long-term relationship between the patient, parents, doctor and a range of other health care professionals. Fundamental to the relationship is good communication and the building of a strong doctor–patient relationship. Unlike the outmoded traditional approach of paternalistic practice, nowadays the shift in the doctor–patient relationship is from prescription to collaboration (Bodenheimer et al 2002, Kuther 2003). Such a patient-centred approach sees the health care professional and patient as the meeting of two experts, the patient an expert on the impact of the illness on their individual lives and the doctor an expert on the clinical management of the condition. Evidence of the benefits of a collaborative or patient-centred approach is demonstrated on a range of outcomes including satisfaction, treatment adherence, quality of life and physical health outcomes (Michie et al 2003). Accurate understanding of one’s own medical condition correlates with less distress, less confusion, improved relationships with the medical team, better adherence to medication and an improved emotional well-being (Rushforth 1999, Stewart 1995, Veldtman et al 2001).

Collaboration may be more straightforward with the adult patient than the child. How to involve the child in such a collaborative relationship is therefore often something the health care professional may need to guide the parents on. This process can be complex and requires ongoing support. Towle and Godolphin (1999) recommend the following guidelines:

develop a collaboration with the parents for ongoing information-sharing with the child

establish the parents’ preferences for managing communication

inform parents of the advantages of including the child as collaborator in their medical treatment

ensure parents have accurate knowledge

avoid jargon and technical explanations

expect that information will be forgotten – ensure repetition at consultations

when speaking to a child, ask them what they know about a subject first, and expand that knowledge using their own words.

Although targeted at involving children in care, these principles apply equally well when the patient is an adult.

One further aspect of post-diagnosis care is to recognize the social and emotional impact of the diagnosis. In some situations specific support programmes may be implicated. Sawyer and Glazner (2004) have evaluated such a support programme and suggest the essential components of a post-diagnosis support programme should include:

prompt timing immediately after the diagnosis

engagement of both parents (if involved)

clear, comprehensive communication at all stages

the opportunity for supervised skill development for treatments

the expertise of the multidisciplinary medical team

the provision of written material.

LIVING WITH CARDIORESPIRATORY ILLNESS

Following diagnosis with a cardiac or respiratory condition the adult patient, parent or child will be faced with a number of demands in managing their condition. The challenges inherent in living with a physical illness have been described by Holman & Lorig (2004) as:

having to manage persistent symptoms without cure

continuous medication use

adapting to behavioural changes, e.g. diet/exercise

undergoing changes to social and work circumstances

managing emotional distress

participating in decisions about medical treatment.

Given these significant effects, it is perhaps not surprising that individuals with cardiac or respiratory conditions typically experience reduced quality of life compared with individuals without health conditions (Ekici et al 2006, Garrido et al 2006, Simko & McGinnis 2003). A key objective in working with people with respiratory or cardiac conditions should therefore be helping to improve quality of life while managing these demands.

Behavioural demands

Adherence

Compared with 20 or more years ago, both adults and children diagnosed with cardiorespiratory disease are likely to have a far greater life expectancy. Children with conditions such as CF or congenital heart disease now often live into adulthood. However, maintaining relative health in cardiorespiratory illness is not necessarily straightforward and it is increasingly time-consuming. The main reasons for this improved survival are new surgical techniques and in medical respiratory conditions much more aggressive therapy for the chest (including prescription of daily oral and nebulized antibiotics and regular courses of intravenous antibiotics). In addition daily physiotherapy, exercise and adequate nutrition are often essential to maintain good health (Bilton et al 1992, Durie & Pencharz 1989, Valerius et al 1991, Webb & David 1994).

While these treatments offer greater life expectancy, poor adherence to treatment regimen is perhaps the best-documented area of difficulty in managing chronic cardiorespiratory health conditions no matter what age the patient (Geiss et al 1992, Hillyard 2001). Much focus has been placed on how well individuals follow the advice they are given by health professionals which has variously been termed compliance, adherence or concordance. Generally there is good evidence that in adults, like children, adherence is less than optimal. For example adherence to physiotherapy in CF on a daily basis has been reported to be only 29.5% (Myers & Horn 2006). Other studies (Abbott et al 1994, Conway et al 1996, Shepherd et al 1990) have reported adherence to oral antibiotics to be between 68–93% and exercise to be between 69–75%. Similar findings are found for adherence in other cardiac and respiratory conditions (Hersberger et al 2001). The level of poor adherence to CF treatment, especially with physiotherapy and diet, and to a lesser extent with nebulized therapy (Geiss et al 1992), indicates that patients are making decisions about treatment management based on factors other than purely clinician advice. Patients or parents may deliberately alter treatment regimens according to their own beliefs and personal quality of life assessment, which may not match the aims of treatment held by health professionals. Importantly there is little evidence to suggest that adherence is associated with either the seriousness of the condition or sociodemographic variables such as education levels (Abbott et al 1994, Myers & Horn 2006).

The prescribers of treatment must therefore accept that a degree of non-adherence will be normal. A traditional prescriptive approach will fail to uncover any incompatibility between medical criteria and the patients’ criteria for treatment success. Recent recommendations have suggested that a more fruitful approach, in line with collaborative care, is to understand the patient’s illness behaviours in terms of self-management (Bodenheimer et al 2002). This encom-passes the idea that people manage their condition, including its treatments, in a social and emotional world, and good quality of life is achieved by balancing all of these aspects.

Although adult patients are encouraged to become active collaborators in treatment decision-making, adolescents are not often awarded the same status. A medical relationship with a teenager is more complicated than with an adult above the legal age for consent (Kuther 2003). There are cognitive differences between children and adults in their ability to actively consent to or refuse treatment and this underpins the legal directives.

Improving self-management

Given that individuals make decisions about the management of their illness based on their priorities within their broader day to day life, the role of the health care professional is to support the individual to make informed decisions and address the patient’s identified priorities. Understanding a patient’s or parent’s treatment beliefs is key to this. Studies suggest that thoughts about the necessity of the medication or treatment and secondly concerns about the medication or treatment – e.g. worries about side effects – are particularly important in predicting adherence. In both asthma and cardiac conditions, patients’ greater belief in necessity and lower concerns about medication have been shown to be related to greater adherence (Horne & Weinman 1999). Where concerns outweigh beliefs in necessity then adherence will be lower.

In addition, the meaning associated with treatment is important, particularly as an illness progresses and treatments become more demanding. For example, the requirement of an individual to use oxygen is often associated with an adverse reaction by the patient. Frequently this is less to do with the practicalities of oxygen use, but more significantly the representation of this as an indicator that health is deteriorating. At this point understanding what the treatment represents and aiding adjustment to deterioration in health may be an important factor in facilitating use of the treatment.

Another sort of belief that is associated with self-management is self-efficacy. This refers to the confidence an individual has in carrying out a behaviour (Bandura 1986). Self-efficacy can be developed through successful experience, through verbal persuasion such as from health care professionals or through seeing similar others carry out the behaviour. Generally the higher an individual’s self-efficacy, the better the self-management behaviours (Zimmerman et al 1996) and the better the physical outcomes such as walking distances and perceptions of dyspnoea (Scherer & Schmieder 1997).

The implications of these findings for practice are that in working with patients or parents to improve self-management their beliefs about the behaviour including worries, concerns and self-efficacy must be elicited. This should supplement traditional approaches of general education and advice giving which, although important, are often insufficient for behaviour change (Kolbe et al 1996). Psychological interventions that target beliefs include cognitive behavioural interventions and recently attention has been given to the value of motivational interviewing as a cognitive behavioural strategy to improve adherence (Miller 1983, Miller & Rollnick 1991). Motivational interviewing is a person-centred intervention which views motivation as a fluctuating state which can be targeted through trained health care professionals facilitating individuals to understand and resolve their ambivalence about behaviour change. It also draws on the concept that individuals may vary in their readiness to change behaviour and has been shown to have use in a range of health care settings (Britt et al 2003).

For children and families, techniques such as a Behavioural Family Systems approach (Robin & Foster 1989) lends itself to this sort of problem as it combines the behavioural techniques of skills training with a systemic focus on structural problems in the family, such as weak parental coalitions and negative belief systems. The approach also allows for the alterations of prescribed treatment. The intervention has been evaluated for families with an adolescent with CF (Quittner et al 2000).

Behavioural challenges in childhood

Although the above issues apply to children and adolescents as well as adults, additional behavioural challenges can be seen in childhood as managing treatment demand is mixed with the normal challenges of raising a child. Levels of parental stress, as measured by the Parenting Stress Index (PSI) (Abidin 1986), have been found to positively correlate with reported child behaviour difficulties, as measured by the Child Behaviour Checklist (CBCL) (Achenbach 1992), but not to correlate with severity of illness, number of hospitalizations or time taken for treatment (Simmons et al 1993). The daily demands of childrearing become a major strain especially around 2 years of age when the child begins to assert autonomy. Oppositional behaviour around treatment can be a major difficulty. As observed at mealtimes, parents inadvertently attend to non-compliant behaviours, so increasing perceived behaviour problems and level of stress. When parents face daily challenges to their authority they lose confidence and become coerced into withdrawing their commands for compliance to any instruction whether or not connected with delivering treatment (Patterson 1984). Behaviour therapy, such as behavioural contracting, parent management training and modelling, has been found to be empirically supported as an effective intervention for use with children and parents (Weisz et al 1995). Parent management training, in particular, is advantageous for the medical team as it can be standardized and implemented from a manual by non-psychologists (Kendall & Chambless 1998, Kendall et al 1998).