Sources of stress for carers
A life-limiting illness can impact the wellbeing and function of an entire social network. The term carer in palliative care refers to someone who is giving support to a person with a life-limiting illness. This can be a relative, husband / wife, partner, child, parent or friend. Their role can incorporate practical, educational, psychological, spiritual, financial or social strategies (as determined by unmet needs and carer(s) choice) with the intention of enhancing the person’s quality of life and optimising their function. Evidence shows that carers who care for people with life-limiting illnesses can be adversely affected if they are not adequately prepared for, or don’t have the resources to undertake, the caregiving role..
Sources of stress for carers include:[3-5]
- Uncertainty about treatment
- Lack of knowledge about care
- Role changes in the family
- Strained financial resources
- Physical restrictions
- Threats to own health, wellbeing and sense of self
- Lack of social support
- Fear of being alone
- Inability to plan other aspects of their life because of uncertain prognosis
- Emotional and physical burnout.
Caring for people with life-limiting illnesses can provide personal and physical challenges for carers. However, many carers report positive experiences. They find that there is meaning to their caregiving role and get satisfaction from knowing that they are doing a good job. They can also feel closer to the person they are caring for. 
Carer distress can be reduced if needs are assessed early and community supports are introduced when they are required.
Recommended strategies to manage the stress and maximise the rewards of carers include: [3, 7, 8]
For the majority of people with life-limiting illnesses, home is the preferred place of care. Factors determining the level of community services required to care for a person at home include:[9, 10]
- Availability and ability of the caregiver
- The person’s physical illness, particularly their level of mobility
- The physical environment of the home
- The level of health and social services available
- The nature of the relationship between the person and their caregiver.
The Carer Support Needs Assessment Tool (CSNAT) is a licensed, evidence-based tool that helps to determine the support that caregivers can need when they are supporting a person with a life-limiting illness. Carers can use this tool to indicate further support they need to care for someone at home, as well as support for their own health and wellbeing within their caregiving role. It is short and simple to use for both carers and practitioners.
Care of a person with a life-limiting illness at home can become an all-consuming experience that engulfs carers’ daily lives. There can be periods throughout the course of the illness where home care becomes difficult. In these situations, respite care and other support mechanisms should be considered.
Respite represents a category of services that provide an alternative care arrangement so that the family caregiver can have time away from care responsibilities. Carers can use respite time to rest, attend to personal needs or in some cases continue their employment. Respite care offers the carer a break from the caring role and helps to minimise the burden and strain on them. Respite care can be provided either within the home environment or in a different care setting (for example, a specialist palliative care unit).
Bob’s condition is deteriorating and he is finding that most day-to-day activities are becoming increasingly difficult. Margaret admits that “it’s been very hard” and says, “I know I should be stronger but I can’t”. She is visibly upset.
The GP explores the options for care and respite with Bob and Margaret.
- What are Bob’s main concerns?
- How would you respond to these concerns?
- Discuss some of the reasons why Bob is concerned about using respite care.
- What concerns does Margaret express to their GP?
- What other concerns could carers have about caring for a family member at home, or about using respite care?
- Consider your specific healthcare profession. What options can you provide to support Bob and Margaret at home?
- Research support services that are available for carers in your local area.
- Hudson, P. and R. Hudson. A comprehensive and practical resource for family carers of a person with a life limiting illness who needs palliative care. 2012 [cited 2017 26 May]; 2nd edition:[Available from: http://www.pallcarevic.asn.au/library-media/supporting-a-person-who-needs-palliative-care-a-guide-for-families-and-friends/.
- Otis-Green, S. and G. Juarez, Enhancing the social well-being of family caregivers. Seminars in oncology nursing, 2012. 28(4): p. 246-255.
- Therapeutic Guidelines Ltd, Support for families and carers in palliative care. 2019: Melbourne.
- Veloso, V.I. and V.A. Tripodoro, Caregivers burden in palliative care patients: a problem to tackle. Curr Opin Support Palliat Care, 2016. 10(4): p. 330-335.
- Kulkarni, P., et al., Stress among Care Givers: The Impact of Nursing a Relative with Cancer. Indian journal of palliative care, 2014. 20(1): p. 31-39.
- Antony, L., L.S. George, and T.T. Jose, Stress, Coping, and Lived Experiences among Caregivers of Cancer Patients on Palliative Care: A Mixed Method Research. Indian journal of palliative care, 2018. 24(3): p. 313-319.
- Russo, F., The Givers. Scientific American Mind, 2016. 27(6): p. 28-37.
- Morris, S.M., et al., Family carers providing support to a person dying in the home setting: A narrative literature review. Palliative medicine, 2015. 29(6): p. 487-495.
- Hawley, P., Barriers to Access to Palliative Care. Palliative Care, 2017. 10: p. 1178224216688887.
- Bluebond-Langner, M., et al., Preferred place of death for children and young people with life-limiting and life-threatening conditions: a systematic review of the literature and recommendations for future inquiry and policy. Palliative medicine, 2013. 27(8): p. 705-713.
- Zarit, S.H., et al., Exploring the benefits of respite services to family caregivers: methodological issues and current findings. Aging & mental health, 2017. 21(3): p. 224-231.