Nursing support of family caregivers in end of life care at home

Patients in the end of life phase mostly want to be cared and die at home.
Without the help of family caregivers it would be impossible to remain at home.
Family caregivers are often intensively involved with personal and emotional
care and household tasks and they provide this an average of 26 hours per week.
Many family caregivers of terminal ill patients experience a heavy to severe
burden, especially in the last week of life. Burden may be a risk factor for
burnout and fatigue. Some family caregivers feel insufficiently supported by
professional caregivers. Healthcare professionals like nurses usually focus on
the patient and his needs for care and treatment. They usually involve family
caregivers only when needed in patient care. The position of the caregiver
should not only be seen as 'co-caregiver' but also as 'co-client'. The
important role and needs of the family caregivers should be addressed in
palliative care. District nurses have a unique position in primary health care
to assess family caregivers' needs and to provide supportive interventions
aimed at reducing caregivers* burden. However, little is known about how nurses
can support family caregivers in palliative home care and which interventions
are effective. More research about nursing interventions to reduce burden is
warranted.

Aim:
To evaluate the effects of a structured nursing supportive intervention on
family caregivers in palliative home care.

Question:
What are the effects of a new nurse-led supportive intervention on family
caregivers* preparedness and burden?

We will conduct a cluster randomized trial to evaluate the effect of a new
supportive intervention on the well-being of family caregivers. Twelve home
care services in the southwest of the Netherlands will participate in the
trial. Nurses of six services will be trained in the new intervention and the
others not. After training, participants in the intervention group (with family
caregivers) will receive the new intervention and the control group the usual
care.

Intervention:
The nurses (of the intervention group) will use the Caregiver Support Needs
Assessment (CSNAT)-tool. It is a valid tool for the direct measurement of
family caregivers' support needs in palliative home care. The CSNAT comprises
14 domains in which carers commonly say they require support in relation to
enabling them to care for the patient at home, as well as support for their own
health and well-being.
Completion of the CSNAT tool is the start of a process, existing of 5 stages:
Stage 1: Introducing the CSNAT to the family caregiver.
Stage 2: Carer consideration of needs. Family caregivers will use the CSNAT to
identify domains where they need more support..
Stage 3: Assessment conversation. A conversation between the family caregiver
and the nurse will take place to determine needs and priorities will be
discussed.
Stage 4: Shared action plan. A shared action plan will be create .
Stage 5: Shared review: Review of the family caregivers' needs will be ongoing.
(Aoun et al., 2015; http://csnat.org)

Training:
Therefore nurses will be trained in the use of the CSNAT. The training program
will consist of an e-learning program, two group sessions, and three
intervision sessions (totally 20 hours).

The nurses of the control group will provide care as usual and will not be
trained.

Burden:
Family caregivers (both intervention- and control group) will be ask to
complete the questionnaires (SRB, CRA, PCS) at 2-4 time points:
- at baseline (T0)
- one months after baseline (T1)
- two months after baseline (T2) and
- 4-6 weeks following the patients* death or hospital/hospice admission (T3).
The questionnaires should take around 15-20 minutes to complete.

Risks:
The family caregivers of the intervention group will receive the new
intervention. This means that family caregivers should think about their
support needs and we realize that this can cause emotional reactions.