Schizophrenia is a psychiatric disorder, which is characterised by slow functional deterioration and episodes of relapse or acute exacerbation of psychotic symptoms. The mean age of onset in early adulthood, deterioration in patients’ activities of daily living and ability to sustain employment, and the propensity of the disorder to affect insight leave many patients requiring assistance and care for an extended period of time.

At the same time, the global push for the deinstitutionalisation of these patients has resulted in an increase in responsibility for care to be supplied by the family and its members.^{1,2,3,4,5,6,7} Unfortunately, there is also evidence worldwide that this policy of deinstitutionalisation, and the rate thereof, has not been matched by a sufficient increase in community mental health resources everywhere, that is, resources that can assist both patient and family. This is especially true in developing countries where insufficient financing severely restricts the development of these community resources. In essence, governments worldwide are entrusting the long-term care of their patients with schizophrenia to family members. The question is, ‘how much do these family members know about the disorder or how to manage people who suffer from it?’ Are they equipped for the task? The literature suggests that they are uninformed and ill-equipped.^6,8 In this context, studying the impact of caregiving on these families therefore becomes especially relevant.⁹

Caregivers of patients with childhood onset chronic psychiatric disorders such as autism spectrum disorders, who are usually the parents, realise at an early stage that there will be a responsibility for them to care for their child for the rest of their lives in most cases. They therefore tend to adapt accordingly as the child grows up and experience a comparatively slow change to their lives and expectations regarding their ill child.

On the other hand, major neurocognitive disorders tend to affect the elderly. There is therefore a sudden responsibility thrust upon carers (in this case, mostly spouses or children) that requires a dramatic adjustment to their lives; however, because of the life expectancy associated with illnesses that present with the disorder, it is a comparatively short-term responsibility.

Patients with schizophrenia can often have a normal childhood and adolescence before suddenly, unexpectedly and often dramatically becoming ill. Because of the age of onset, care responsibilities are suddenly thrust upon mostly parents, even before they have come to terms with the shock of the sudden, dramatic onset of the illness. It often comes at a time when they would expect their child to gain independence and when they themselves are at an age when retirement could have been considered. The lowering of expectation for the future of their child, along with the new, long-term care responsibilities, tends to weigh heavily on these parents, requiring a dramatic adjustment to their lives and subjecting them to unique symptoms and behaviours, which become increasingly difficult to manage, especially for people of their age. Resultant negative effects on the family are not surprising.

There has been research into the problems these families face, especially in the context of continuing deinstitutionalisation. Before these families can be helped, one needs to first identify and understand the problems they experience.

Caring for family members with schizophrenia subjects caregivers to mostly negative experiences, which in turn negatively impact the caregivers themselves. Table 1, ‘second column, provides information and examples of how caring for family members with schizophrenia can negatively impact the caregivers themselves. These negative aspects experienced by patients’ relatives as a consequence of their caregiving role are collectively known as ‘burden’.¹⁰ Attempts have been made in the literature to better define ‘burden’ as the existence of serious psychosocial and emotional problems, difficulties or negative events,⁴ stressful situations or significant life changes that influence the family member of an ill relative.¹¹ It has also been defined as the extent to which caregivers perceive their emotional and physical health, social life and financial status as suffering as a result of caring for a relative.¹²

Burden can be classified according to the affected party. For example, family burden is the burden experienced by the family as a unit,^12,13 while individual burden is experienced by a single caregiver or individual member of a family.

Burden is not only the objective demands associated with caring but also the caregivers’ subjective reaction to them.¹⁴ Reference is therefore made to objective burden being the practical problems, difficulties and concrete and observable negative effects the illness has on family life resulting in significant life changes.^{10,12,15,16,17,18} On the other hand, subjective burden is the extent to which caregivers actually feel burdened because of the situation,¹⁶ resulting in psychological reactions and affecting well-being.^{10,12,15,16,17,18}

For examples of objective and subjective burden experienced, and described, by family members or caregivers, see Table 1.

Objective and subjective burdens have a direct influence on each other. For example, decreased participation in social activities as a result of having to spend many hours caring for an ill relative can lead to increased depressive symptoms, which, in turn, can lead to a decreased drive to participate in social activities.

Research has revealed that family members caring for relatives with schizophrenia experienced significantly higher levels of objective and subjective burden than those caring for relatives with chronic physical illnesses or other chronic psychiatric disorders such as depressive disorders, bipolar disorders and obsessive–compulsive disorder.^4,10,17 Severe objective and subjective burdens increase the global burden experienced. Parents of patients with severe and permanent psychosocial functional impairments have been shown to have a constantly high level of global burden.¹⁶

Many factors have been identified which can either increase or decrease the severity of burden experienced (Table 2).

Caregivers rarely voice the burden experienced,¹⁹ resulting in professionals often not being fully aware of the negative impact of caring for a mentally ill relative on caregivers. As this burden has now been intensively researched and is better understood, awareness will increase and these family members should receive the help they deserve in an attempt to decrease the burden experienced.

Expressed emotion (EE) can be interpreted as a complex pattern of interaction between the patient and his or her family that at the same time represents the general conditions and consequences of the mental illness.¹⁶

It changes over time and is influenced by circumstance – it decreases after a patient is discharged from hospital and then slowly increases again.³³ EE is measured through five variables that reflect carer attitude: hostility, critical comments, positive comments, emotional over involvement (EOI) and warmth.³⁴

These variables collectively, but not individually, influence relapse rates.²⁹ Families that tend to be hostile, critical and emotionally overinvolved are said to be high expressed emotion (HEE) families,^3,19,29,35 while families that tend to be positive, empathetic, calm and respectful, with low levels of emotion, are said to be low expressed emotion (LEE) families.¹⁹ Families with HEE tend to believe that the symptoms can somehow be controlled by the patient³⁵

Warmth, previously seen as an attribute of LEE, has been found to be an unreliable variable of EE because high levels of warmth (which is positive) are accompanied by EOI, while low levels of warmth are accompanied by an increase in critical comments – EOI and criticism both being variables in HEE (which is negative).³⁵

EE is a transcultural phenomenon and a very reliable predictor of relapse in schizophrenia.³ HEE is the third most common cause of relapse behind non-adherence with medication and drug abuse with 50% of patients discharged back to HEE families soon relapsing compared to a 21% relapse rate after discharge back to an LEE family.³⁵

Another negative finding is that levels of EE are highly resistant to change, with short educational interventions having no influence on levels of EE or EOI.⁶ HEE is especially resistant, with intensive interventions required to decrease levels of EE, even then it is often unsuccessful. Recent evidence does, however, indicate that although levels of EE can temporarily decrease with intervention, the levels return to the prior levels of HEE within 3 years, probably coinciding with a decrease in the level of functioning of the patient. There is contradictory opinion as to whether interventions have any effect on EE.^3,33 However, proper family psycho-education not only on the illness but also on the subject of EE is essential. Advice on the need to discontinue practices that lead to HEE and EOI – such as criticism of the patient (for instance, for ‘being lazy and sitting around doing nothing’ when in fact he/she experiences negative symptoms of schizophrenia) and intrusiveness (through invasion of the patient’s privacy and emotional and symptomatic probing) – should be given to families.

Mental health care resources and levels of service delivery vary greatly worldwide; yet there are definite similarities in the experiences of family members of mentally ill patients dependent on mental health care service. Negative experiences and complaints are in all likelihood highly subjective and generalised. However, whether or not these complaints are fair is another point of discussion. They merit our attention if we wish to succeed in our quest of helping these families. Table 3 presents common complaints about resources, service delivery and mental health care professionals.

Most families of patients with schizophrenia believe that they received inadequate information regarding the illness of their relative,^{19,20,21,25,27,36} early warning signs of relapse, effects of medication and ways of coping with bizarre and violent behaviour.⁸

Another complaint is that the police do not know enough about mental illness, are badly trained and make fun of patients.²⁷

It is a poor reflection of service delivery when the families believe that they receive more support and information about mental illness from self-help groups than from mental health care professionals.²² It has also been proved that the lack of community mental health resource centres and perceived support from mental health care departments increase levels of burden experienced by families of patients with schizophrenia.¹⁹ In most areas of South Africa, there is currently a distinct lack of community resources to deliver services that can contribute positively to the lives of these families.

There are difficulties experienced by patients with schizophrenia and caregivers and families which are shared, but there are also difficulties which are unique to each. The difficulties are complex, and it is suggested that they should be addressed both individually where appropriate and together where possible. One can thereby categorise the focus of service delivery into the following sections:

Helping the patients

Apart from specific rehabilitation programmes for patients, which result in fewer health and economic problems and decreased family burden and disruption of social lives of caregivers,¹⁵ there are examples of interventions and programmes that consist of different combinations of strategies aimed at family members of patients with schizophrenia. There is evidence of their efficacy, but they are not always being readily implemented.^10,20,25

Interventions and programmes are built around psycho-education (PE) and cognitive behavioural therapy (CBT) and involve elements such as problem-solving and coping strategies.^10,28 Religious coping is an interesting form of coping that can be implemented in interventions as it has been shown to decrease burden. Believers indicate that feeling that a ‘Creator’ was in control decreased the level of distress and increased their hope for the future.²⁸ Interventions need to be implemented early; otherwise, relatives will develop fixed views that might be difficult to change.⁶

PE is focussed on providing patients and families with information about early signs of relapse and effects of medication. Research indicates that families tend to not find the information too complicated to understand.²²

CBT is aimed at increasing optimism. Some programmes with the most robust evidence for efficacy are outlined below.

Families of patients with schizophrenia experience high levels of burden and receive very little information about the illness, how to cope with their mentally ill relative or related matters such as EE. They are subsequently rendered largely ill-equipped to deal with these challenges and problems. By providing more information and resources, and implementing programmes designed to address these problems, families of patients with schizophrenia can experience higher levels of support and empowerment and lower levels of burden. Furthermore, families need to be psycho-educated about the negative effects of patient criticism and intrusive behaviours which increase levels of HEE and EOI, both of which are detrimental to patients and increase relapse rates.