JRSM >
Volume 94, Number 11 >
Pp. 563-566
1
Department of Urology, Taunton and Somerset Hospital, Taunton, Somerset TA1
5DA, UK
2
Department of Psychology, Royal College of Surgeons in Ireland, Dublin,
Ireland
3
Department of Surgery, University of Bristol, UK
Correspondence to: Jonathan Rees
 | INTRODUCTION |
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 TOP INTRODUCTION INSTRUMENTS FOR MEASURING...RESEARCH FINDINGSCONCLUSIONSREFERENCES |
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| INSTRUMENTS FOR MEASURING PARTNER QUALITY OF LIFE |
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TOPINTRODUCTIONINSTRUMENTS FOR MEASURING...RESEARCH FINDINGSCONCLUSIONSREFERENCES |
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| RESEARCH FINDINGS |
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TOPINTRODUCTIONINSTRUMENTS FOR MEASURING...RESEARCH FINDINGSCONCLUSIONSREFERENCES |
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Perhaps the most striking research finding is a tendency for the partner's quality of life to be worse than that of the patient. Kornblith et al.11 found that wives of patients with prostate cancer reported greater psychological distress than did their husbands. This finding is echoed in the work of Cliff and MacDonagh who designed a questionnaire specifically to measure psychosocial morbidity in prostate cancer patients and their partners3. Cancer-related distress was very common and significantly more severe in partners than in patients. Treatment-related worries and concerns about physical limitations and pain were also more common among partners. Weitzenkamp et al.18 reported that the spouses of patients with spinal cord injuries had higher levels of depression, measured on the Center for Epidemiological Studies Depression Scale (CES-D), than did patients. The excess manifestations of depression were both somatic (appetite loss, sleeplessness) and affective (feeling ‘blue’, crying). Two studies looking at cancer patients in palliative home-care settings found that anxiety and depression were more common among partners19,20 and that many partners attempted to disguise their feelings. Caregivers of rheumatoid arthritis patients have also been shown to have lower health status scores than do healthy controls, particularly on emotional, mental health and general health status scales21. The level of morbidity in caregivers was only slightly less than that found in individuals with major depression.
| Box 1 Problems for partners Fear of the future Depression and/or anxiety Deterioration in partner relationship and/or sex life—decreased interest and enjoyment Concern about suffering of patient Implications of caregiving role on own health (particularly in the elderly) Fatigue/sleep deprivation Social disruption—either through looking after spouse or unwillingness to attend social functions alone Financial difficulties—patient and/or partner unable to continue working, expense of private care and adaptations to home
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Partners who are carers face numerous difficulties (Box 1). They may feel socially isolated and find it a struggle to combine the caregiving role with other responsibilities such as looking after the family. Caregiving can have great financial implications, especially for lowincome families: one or both partners may be forced to give up work and costly alterations to the home may be required. Certain diseases present special challenges. Partners of patients with subarachnoid haemorrhage, for example, are often afraid to leave the patient alone, especially if they witnessed the initial event, and many partners express fear of having sex, particularly if the original haemorrhage occurred during sexual intercourse9. Spouses of patients with Alzheimer's disease describe a feeling of limbo—not widowed but not married either—which can persist for many years17. Partners of stroke patients found that the physical dependency, cognitive and communication deficits and psychological symptoms of their spouses meant that the spouse ‘was not the same person’. This led to partners' describing a decrease in their marital satisfaction although, by contrast, most patients claimed they had no marital difficulties22. Another study, looking at partner morbidity in patients with benign prostatic enlargement, found that despite the benign nature of the disease 71% of partners were worried that their spouse had cancer and 59% were worried about the possibility of their partner requiring an operation4.
Carers' judgments
One important issue is the possible impact of the level of burden on the
partner's perception of the patient. Partners are often asked to make proxy
decisions on behalf of patients, such as those who are incompetent by reason
of mental retardation, mental illness, brain damage or dementia. These
judgments can be influenced by the partner's own interests—that is, a
partner may covertly request care and treatment options he or she wants for
the patient, rather than those the patient would select if free to choose.
This situation is likely to be compounded by the fact that the reliability and
validity of doctors' and nurses' assessments of patient quality of life are
even lower than those of partners or other proxy
assessors23.
This dilemma is directly relevant to the clinical management and institutionalization of incompetent individuals, where it is often difficult to balance the needs of the patient and the needs of the partner. One example is the use of neuroleptic medication to reduce agitation in demented patients. Such treatment may well improve the partner's quality of life but often at the cost of decreased mobility, decreased engagement and further compromised cognitive functioning for the patient. Coen, having reviewed the studies addressing this issue, concluded that the level of burden and its impact on the quality of life of the partner must be taken into account when considering proxy judgments of patient quality of life6.
Factors influencing partner outcomes
Nijboer et
al.24 looked
at factors associated with mental health outcomes in caregivers and divided
them into three categories—characteristics of the caregiver,
characteristics of the patient and characteristics of the care situation.
Characteristics of the caregiver
Partners bear a larger proportion of the burden of care than do other
primary
caregivers25.
Caregiving seems to have a greater negative impact on female partners,
especially younger
ones26, although
some studies have found males worse
affected27.
Partners who live alone with their spouse and those with lower incomes
experience particular difficulties. In one study of partners of long-term
stroke patients, the highest burden was found in those partners who themselves
had unmet care needs (e.g. psychosocial support) and was not related to unmet
care needs of the
patient28.
Characteristics of the patient
Some studies have suggested a direct link between disease-severity and
partner quality of
life4,12,
others not7.
Research in the elderly suggests that the patient's mental health is more
directly related to negative outcomes in the caregiver than is the patient's
physical
condition29. Coen
et al.23,
studying patients with Alzheimer's disease, found that carer burden was better
predicted by behavioural disturbance than by cognitive impairment.
Characteristics of the care situation
Different care situations may have different consequences for the
partner—for example, those that confine the partner to the house are
more likely to have a negative effect on quality of
life24. Situations
involving personal tasks such as feeding or washing the patient are also
perceived as more burdensome than those requiring non-personal duties such as
doing the
shopping25. When
care is provided over a long period, the quality of the patient—partner
relationship becomes increasingly
important24.
Positive aspects of caregiving
The consequences of caregiving are not exclusively negative. Many studies
have identified positive aspects of the role, with partners describing
increased self-esteem, pride, gratification and feeling closer to their
spouse30,31.
Axelsson suggests that the responsibility of caring for one's ill partner may
confer a sense of ‘meaning’ to life and this in turn may augment
global quality of
life20. In a study
of caregivers of multiple sclerosis patients, many of the partners reported
positive aspects of their roles and described how being a carer had made them
more caring towards
others32. Nijboer
et al. found an inverse correlation between the educational level of
the caregiver and the positive impact of caregiving, those with lower levels
of education being able to derive more self-esteem from
caregiving24.
| CONCLUSIONS |
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TOPINTRODUCTIONINSTRUMENTS FOR MEASURING...RESEARCH FINDINGSCONCLUSIONSREFERENCES |
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Patients and partners may adapt at different rates to their situation and the type and rate of adaptation is likely to be influenced by various factors. There is increasing interest in what has been termed response shift. For example, when individuals experience a major change (e.g. in health state), their internal standards, their values or their conceptualization of quality of life can alter with it33. This adaptation is likely to occur in both patient and partner, but if it happens at different rates this can lead to a divergence in quality of life between them.
| Box 2 Implications for practice Recognize partner burden and offer appropriate support Partner should be present during consultation wherever possible Address partner's concerns as well as patient's—may force couple to air issues not previously discussed Assess carer's needs separately from patient's needs Support for partner may delay or avoid hospital admission of chronically ill patients Consider carer burden when listening to carers' assessments of patient quality of life Provide written information wherever possible Provide point of contact for patient/partner, e.g. support groups
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Since partners show high levels of psychological morbidity, it is important, clinically, that they be given an opportunity to express any difficulties they may be experiencing. This can be achieved in several ways (Box 2), most easily by inviting the partner to attend during medical consultations. Historically, partners have not been formally encouraged to accompany the patient and attendance rates of less than 10% have been recorded in some studies4. This may be because patients do not want their partners to be present or they may assume that partners are not allowed or expected to attend. Once in attendance, the partner should be involved in the discussion and participate in decision-making. Partners may be reluctant to express their own concerns in the presence of the patient and should then be offered a separate consultation; they will often appreciate information about support organizations. For example, the Carers National Association offers many services, including a telephone helpline and over 120 self-help groups across the UK. Specific information for carers of advanced cancer patients is also available from CancerBACUP, in particular the booklet Coping at Home. Crossroads (Association of Care Attendant Schemes) provides attendants to come into the home, offering respite care (Box 3).
| Box 3 Support for partners Carers National Association—helpline 0345 573369 Crossroads (Association of Care Attendant Schemes)—01788 573653; Scotland 0141 226 3793 CancerBACUP—020 7613 2121 or Freephone 0808 800 1234
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A common reason for admission of patients to institutions is the need to relieve the family of its caregiving responsibilities20,34. If partners could be better supported, both in the home and by means of respite care, admission to hospital or nursing home might often be delayed or even prevented. There is some evidence to support this hypothesis: in a study of late-stage lung cancer patients35, provision of home healthcare services allowed patients to maintain their independence for longer, while partners reported recovering sooner after the patient's death than did the partners of patients who had not received such home care. A key point is that social support and respite care must be provided in a regular and planned manner and not just as a response to crises in caring.
Several important questions need to be addressed by further research. Do simple interventions such as those outlined above substantially improve the quality of life of the caregiving partner? If partner quality of life is improved, to what extent does this impact on the wellbeing of the patient? The cost of improving partner support and providing respite care would be considerable, but might it be outweighed in the long term by reducing acute hospital admissions?
The recognition of high levels of partner morbidity demands a more holistic approach to caring for the chronically ill. In the past, the emphasis was on the patient alone, with particular attention to physical outcomes. A broader view must be taken which recognizes the effect of chronic illness on the physical and psychosocial wellbeing of the partner.
| REFERENCES |
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