Academic journal article Hong Kong Journal of Psychiatry

Experience of Caregiving in Caregivers of Patients with First-Episode Psychosis

Academic journal article Hong Kong Journal of Psychiatry

Experience of Caregiving in Caregivers of Patients with First-Episode Psychosis

Article excerpt


Objectives: This study aimed to investigate the experience of caregiving, the relationship between demographic and clinical variables and the dimensions of the experience for caregivers managing patients attending a First Episode Psychosis Clinic in Hong Kong.

Participants and Methods: Caregivers of 139 patients with first-episode psychosis completed a locally validated Experience of Caregiving Inventory, a 66-item self-report questionnaire measuring positive and negative appraisals of the caregiving experience. Patients' psychopathology was assessed using the Positive and Negative Syndrome Scale.

Results: Patients' functional levels correlated significantly with negative appraisal levels. Female patients were significantly associated with positive appraisal levels. A linear regression analysis revealed that a negative symptom score, a history of deliberate self-harm, and a family history of psychiatric illness emerged as significant predictor variables.

Conclusion: The results indicate that caregivers in Hong Kong are distressed by difficult behaviours and patients' negative symptoms.

Key words: Caregivers; Psychotic disorders; Questionnaires


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The burden of mental illness imposed on caregivers has been studied for more than 4 decades. Hoenig and Hamilton1 classified the caregiver burden into objective and subjective aspects. Objective burden refers to the events that disrupt family / household life owing to the patient's illness.2 These judgements are largely based on hypothetical situations.3 Subjective burden refers to the caregiver's personal appraisal of the situation and the extent to which individuals perceive that they are carrying a heavy load.4 There are different approaches for measuring the subjective burden.5-7 The stress-coping model8 is conceptualised as an appraisal of demands. Stressors included the patient's illness, behaviours, disabilities, and perceived disruptions to the caregivers' life. Coping is defined as the cognitive and behavioural efforts aimed at controlling the demands imposed by the stressors.

Appraisal can be influenced by mediating factors such as the caregiver's personality, quality of family relationships or degree of social support. The outcome is the result of an interaction between the appraisal by the caregiver and the caregiver's coping strategies.

Studies have demonstrated that the caregiving burden is a robust predictor of psychological distress.3,9-12 The negative appraisal, as measured in the Experience of Caregiving Inventory (ECI)3, has been proven a strong predictor of caregiver morbidity.9,12,13 The positive potential of the caregiving experience has been relatively neglected. Caregivers report positive aspects in their personal experience such as feelings of gratification, love, and pride.14,15 Greenberg et al16 reported that patients provide substantial help and companionship to their families.

Family members of first-episode patients experience distress and difficulties.17 One of the first studies on caregiving in first-episode psychosis18 categorised 77% of the studied caregivers as 'psychiatric cases'. Tennakoon et al11 reported that 12% of caregivers present with psychiatric morbidity. Caregivers are distressed by difficult behaviours and negative symptoms in participants11 and also by disorganisation symptoms.19 Chinese caregivers also encounter significant difficulties and suffer distress when taking care of their ill relatives.20-22 In a cross-cultural study, the disruption of family relationships caused by the patient's mental illness was more severe in Chinese families than their Malay and Indian counterparts.23 Taking care of male patients, being a female caregiver, patients' difficult and bizarre behaviours, negative and positive symptoms were all related to caregiving distress in relatives of schizophrenic patients. …

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