Support Needs of Family Caregivers During End-of-Life Cancer Care at Home

Nursing Perspectives

The researchers found that the nurses’ own beliefs and values influenced the way they gave support to family caregivers. Two perspectives on nurse support were identified.

The instrumental perspective describes nurses who focus more on the patients than the family caregivers. In relation to the patient, they see the family caregiver as their partner. The client is the dying patient and the caregiver should never be a distraction from the client.

The relational perspective describes nurses who see a link between the patient and the family caregiver, such that the latter might have both a need for and a role in emotional support, as well as clinical support. Therefore, providing emotional support for the family caregiver is as essential as clinical support for the patient. Interestingly, some nurses with a relational perspective consider the healthcare system to be too patient-oriented and too clinical. ¹

Types of Nursing Support

The nurse participants described a number of activities they considered to be essential for supporting family caregivers who are managing EOL care of their loved one: identify needs, provide practical education, assist with decision making regarding location of treatment and death, offer emotional support, and organize respite care.¹

Identify needs of the family caregiver is ongoing. First at admission to the program, then through more informal conversations while care is being given.

Practical education refers to the on-the-job teaching nurses do when they instruct family caregivers on how to perform practical patient-care tasks. It also refers to discussions about patients’ symptoms and how to cope with them.

Assist with decision making by explaining the ongoing decisions family caregivers have to make, such as whether their loved one should die at home vs at a hospice facility. Nurses can help them understand their options. Sometimes the nurses would invite the general practitioner to take part in these conversations.

Provide emotional support is one of the key roles nurses play in helping family caregivers as they cope with their own emotions and problems, as well as family problems. If some of these needs are beyond the nurses’ expertise, they can refer the family caregiver to other professionals with specialist training in these fields.

Organize respite care is another essential need nurses fulfill to support family caregivers. This includes arranging extra home care, night care, and volunteer support. Volunteers can relieve the family caregiver so they can get some exercise, go shopping, or simply go for a walk.

The researchers conclude that, in terms of supporting family caregivers, nurses should be aware of their responsibilities and take a position on the best way to provide support to those who are managing EOL care for a loved one.¹

References

1. Becqué YN, Rietjens JAC, van der Heide A, Witkamp E. How nurses support family caregivers in the complex context of end-of-life home care: a qualitative study. BMC Palliat Care. 2021;20(1):162. doi:10.1186/s12904-021-00854-8
2. Gamondi C, Larkin P, Payne S. Core competencies in palliative care: an EAPC White Paper on palliative care education – part 2. Eur J Palliat Care. 2013;20(3):140-145.