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Is the hospital sick role a barrier to patient participation?

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VOL: 98, ISSUE: 24, PAGE NO: 35

Mark Faulkner, PhD, MSc, BA, RGN, CertTHEd, MBPsS, andBarry Aveyard, MA, BA, are lecturers at the School of Nursing and Midwifery, University of Sheffield

Sick-role behaviour is an ‘activity undertaken for the purposes of getting well by those who consider themselves ill’ (Kasl and Cobb, 1966). It can involve, for example, seeking medical advice, taking time off work and relinquishing responsibility for one’s own care to friends or family.

The concept of the sick role, first described by Parsons (1951), is extremely broad and its application in the hospital setting is not always simple. Hospitals are complex social environments that can disrupt patients’ natural transition to the sick role (Sarafino, 1998). This is particularly true when patients and health care professionals have different expectations of patients’ hospital role. The current emphasis on encouraging patients to participate in their own care is in direct conflict with one of the obligations of their sick role, which is to unquestioningly comply with the opinions of health professionals.

Why the hospital sick role occurs

According to Parsons (1951), the sick role requires an ill person to fulfil a series of obligations to gain a number of rights. They are obliged to:

- Seek medical advice;

- Cooperate with medical experts and therapists throughout their illness;

- Want to get well as quickly as possible.

In return for fulfilling these obligations they are exempt from social responsibilities and self-care, which are shouldered by family and friends. These rights, however, are granted only when a recognised medical authority, such as a doctor, acknowledges the person’s illness.

Some illnesses do not justify people claiming all the rights of the sick role. For example, minor ailments may be self-treated and should not require time off work. In such circumstances, an inappropriate adoption of the sick role puts a strain on this social contract and may be met with a lack of sympathy from family and carers. This reaction can also occur when people who are genuinely sick fail to follow prescribed medical advice (Parsons, 1951).

In hospital, the fact that a patient needed to be admitted seems to justify the adoption of the sick role: ‘hospitals are for sick people, therefore I must be sick’. Furthermore, hospitals provide patients with many, if not all, their sick-role rights. Being in hospital automatically exempts them from normal responsibilities and routines. Patients’ perceptions that they are not expected to look after themselves may be confirmed by the conspicuous presence of health care staff. It is therefore understandable that patients, in return, fulfil their sick-role obligations by wanting to get better and complying with prescribed treatment regimens.

The hospital sick role is therefore a form of dependence, with patients relying on health care professionals to cater for their physical needs and make decisions on their behalf. This may benefit both patients and staff. Patients have time to rest and recuperate, while staff know that most patients will comply with the treatments they are prescribed.

However, the traditional parameters of sick-role rights and obligations are occasionally challenged. For example, the current emphasis on encouraging patients to participate in decision-making and care is in direct conflict with their sick-role obligation to comply unquestioningly with medical experts and therapists.

Patient participation and the hospital sick role

The growing emphasis on patient participation derives from government policy, professional attitudes towards individualised care and the public’s growing awareness of their rights (Kirk and Glendinning, 1998).

Patient participation can take a variety of forms. Nurses might encourage involvement in decision-making - especially regarding care plans, self-care or self-medication, or even the running of a ward or nursing home by patient groups (Saunders, 1995; Cahill, 1996; Cahill, 1998).

By encouraging their participation, nurses enable patients to develop ‘learned mastery’ of their own care (Peterson et al, 1993). As a consequence, some patients have become increasingly independent within the limits of their capabilities (Blair, 1995; Faulkner, 2001).

Blair (1995) found that patients who took part in developing and evaluating their care-plan goals showed significant improvements in goal attainment compared to those whose goals were developed and evaluated by staff alone. When patients contribute to the decision-making process, they tend to be more satisfied with the decisions made and demonstrate greater compliance and better health outcomes (Greenfield et al, 1988; Brody et al, 1989).

The two patient roles

Patients are being asked to adopt two opposing roles. In the sick role they are passive recipients of treatment and care, while the prevailing health service view emphasises their active involvement in their care. Biley’s (1992) research suggests that patients adopt both roles at different times while they are in hospital: they were unenthusiastic about participating in their care in the initial stages of illness, but as their illness subsided they became more interested in participating in tasks such as filling in menu cards and deciding when to wash.

Inappropriate adoption of the sick role

Although the sick role may not be a barrier to patient participation, some continue with it after their health has improved. A number of reasons have been suggested for this, some of which challenge collaborative approaches to care. Patients may simply refuse to see participation as part of their role, believing that it is their right to be cared for in hospital (Saunders, 1995). Others may not be willing to take responsibility for decisions on treatment, preferring to have someone to blame if things go wrong (Laine, 1997).

Where patients are adamantly against participating, little can be done to persuade them without infringing upon their rights. However, some reasons for the inappropriate adoption of the sick role can be remedied.

For example, some patients may not be aware of the extent to which a condition will affect their lives and fail to recognise the long-term benefits of developing self-care skills (Saunders, 1995). Others may lack the required knowledge to contribute effectively to the decision-making process and worry about making the wrong choices - especially if their condition is serious (Laine, 1997). Some may be trying to delay discharge from hospital because they are afraid of a lack of support in the community and prefer the security of being in hospital (Beckingham, 1995).

In such cases, staff should:

- Try to make patients understand the benefits of participation and give them clear, relevant information;

- Evaluate what patients already understand about their condition, as well as their intellectual ability;

- Give patients simple written or verbal explanations that are sensitive to their individual circumstances;

- Avoid using medical jargon (Cahill, 1996);

- Understand that some may need more support than others when being encouraged to participate in their care.

Stiggelbout and Kiebert (1997) found that most patients preferred to adopt a passive role. This was particularly the case with those who were older, sicker or had a low level of education - the very people who stand to gain most from participating in their care, especially if they have a chronic condition that requires extended or even lifelong treatment (Laine, 1997; Cahill, 1998).

Conclusion

The sick role appears to be played out mainly during the initial stages of illness, when patients lack the physical or mental strength to contribute to their care. Once this phase has passed, many are more willing to participate. However, if their adoption of the sick role continues after the acute phase of illness, it may prevent them from participating. Nurses should explore why patients are maintaining the sick role before encouraging them to participate.

It is also important for nurses to be aware of the extent to which patients want to participate in their care. Otherwise they may participate unwillingly, merely as a way of fulfilling their sick-role obligation to comply with health service staff (Waterworth and Luker, 1990).

It is worth noting that, apart from the sick role, health care professionals may also be responsible for preventing patient participation. Cahill (1996) suggests that if nurses are to facilitate participation they must relinquish some power, control and authority. But Saunders (1995) suggests that nurses might feel threatened by patients having a stronger role. Lamont (1999) comments that even where patients do participate, they will only feel empowered if their voices are both heard and heeded.

As Cahill (1996) concludes: ‘If the government, and nursing policy and practice, is to persist in emphasising a participatory health care approach, there is a need to re-educate not only the public with respect to their expected future roles in health care, but also health care professionals.’

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