Partners / carers and children of people with cancer are also vulnerable to experiencing distress and need support.4 In particular, spousal caregivers can experience high stress, potential burnout, depressive symptoms, poor health and unmet needs.14 The distress experienced by carers and patients has been reported as equally significant, but key unmet supportive care needs differ. The majority of patients unmet supportive care needs may be psychological, however carer needs can also relate to access to health services and information. Major causes of distress for a carer include:15, 16
- the physical care demands of the person affected by cancer
- dealing with distressing symptoms, such as pain
- uncertainty about the illness trajectory
- fluctuations in the individual's mental status, behavior and personality
- feelings of guilt, unhappiness, depression and emotional upset
- difficulty remaining positive
- perceived lack of information and capacity to undertake carer role
- changes in body image of the person affected by cancer
- changes in intimacy.
Family and carers may have pre-existing concerns affecting their supportive care needs throughout the cancer journey. The following factors are associated with an increased risk of adverse psychological events for carers:17
- increased intensity and duration of caring
- providing over 20 hours of care per week
- meeting a high level of dependency
- preexisting caring responsibilities in addition to the person affected by cancer (e.g. children, elderly parents)
- female gender14
- few supports
- poor health
- unemployment or low income9
- distressed relationships
- a significant change in roles e.g. from “cared for” to “carer”.
Carer support may need to be more system focused, setting the intervention in the context of the carer-patient relationship. Strategies to manage the demands of this assumed role can assist.9
Access Mrs Li’s story 2. List possible concerns Mrs Li’s daughter may experience following her mother’s diagnosis and into the future.
Identify the common concerns experienced by carers of individuals you care for.
Outline your response if a relative such as Mrs Li’s daughter came to you, looking fatigued and teary, stating that she wasn’t coping with caring for her mother.