Development of a Psychological Well-Being Scale for Family Caregivers in Palliative Care

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Psychological Well-being of Caregivers in Palliative Care

Since the beginning of the modern hospice movement, the patient and family caregiver have been considered the unit of care because they have to face the physical and psychological adversities associated with advanced cancer. These adversities contribute to the vulnerability of both the patients and their caregivers, causing psychological distress, which in turn has a significant impact on their quality of life (QOL). Serving caregivers in palliative care is also justified as these individuals provide the major practical and psychological support for patients, such that their well-being will unavoidably have a significant impact on patients. (1-4)

The concept of psychological well-being encompasses the widely accepted concepts of QOL, caregiving stress, and burden. While QOL is usually defined by one's level of functioning and subsequent impact on various life aspects, (5) caregiving stress and burden focus on the specific impact of caregiving. (6) Like spiritual well-being, psychological well-being comprises all aspects of a person's experiences including relationships with one self and others. It includes one's need to find life meaning and a sense of connectedness with oneself and others. Perhaps, the difference between spiritual and psychological well-being is that the relationship with a transcendent dimension and superior powers emphasised in spiritual well-being is not included in the concept of psychological well-being. (7,8) With respect to factors affecting the psychological well-being of caregivers, Gaugler et al (9) noted that if caregiving stress was not well managed, it would spread and influence other aspects of the caregiver's life, as secondary stressors. Other researches pointed out that perceived social support, caregiver guilt and perceived caregiving competence can help predict the caregiver's burden and QOL. (6,10,11) Various emotions could result from these stresses, which include resentment, overload, feeling trapped, loss, hopelessness, anxiety, depression, emptiness, fear, helplessness, loss of control, uncertainty and guilt. (12-14) Moreover, the psychosocial and somatic adjustment of cancer caregivers might also be compromised. (10,15) Some researches even showed that spouses and caregivers could actually experience more psychosocial problems than the patients themselves. (16-18)

However, as caregivers usually put patients' needs first, they might not be willing or find it easy to express their own needs, especially those which differ from the patients'. Many caregivers have no contact with professionals or access to support or services for themselves. (19,20) Previous findings suggested that health care professionals might not recognise caregivers' emotional needs, and thus, caregivers of patients receiving palliative care might be left almost entirely alone in terms of services. (19,21) Ahmed et al (22) also described services for caregivers as crisis intervention, meaning that services only respond to situations where caregivers were at risk of apparent breakdown. According to the National Institute of Clinical Excellence (NICE), the well-being of both the patients and their caregivers were closely related, and that the caregivers of patients with advanced cancer were vulnerable to psychological distress. Thus, explicit and separate assessment of caregivers' needs was of crucial importance in the provision of comprehensive palliative care to enhance the QOL for both parties. (23) Recommendations from NICE are consistent with recent research findings, which suggest that given the health consequences of caregiving, caregivers of patients with advanced cancer benefit from prospectively defining their needs. (24) Specifically, caregivers have to cope with medical, practical, psychosocial, and spiritual uncertainty in preparing for death and bereavement. Communication to address their uncertainty was found to be a useful strategy in assisting them to process information and complete important tasks for management of such uncertainty. …