Implications for practice and research

• Given our ageing demographics and cost of healthcare, we need to expand our holistic approach to the patient's caregiver(s), if we expect the delivery of more community-based care.

• Future research should evaluate outcomes of community-based outreach palliative care teams on caregiver distress regardless of diagnosis.

Context

Heart failure (HF) is predicted to increase by 46% from 2012 to 2030 in the US.1 Patients with HF often have other chronic comorbidities. Given our ageing population and with better treatments, the prevalence of heart disease, as well as other chronic diseases, will continue to rise. Patients with HF often have long and frequent hospital stays, and there is no cure.1 ,2 The costs related to cardiovascular disease are in the billions.1 We are relying more on family and friends to provide care in the home. Based on survey data, most caregivers are between the ages of 45 and 64, and quite often have a number of responsibilities in addition to their caregiving role.3

Findings

There were three main themes that emerged from the data which included: (1) competencies related to the provision of healthcare; (2) maintenance of compassion; and (3) the importance for ongoing selfcare. Caregivers were seeking reassurance about the care given being done right, making mistakes with regards to medications and in their judgements about how much the patient could or should do. There were feelings of uncertainty related to their role as family member and care provider. Caregivers often described their ongoing struggles in remaining compassionate and maintaining patience. Additionally, many felt stressed in trying to balance the many responsibilities involved.

Commentary

Despite the findings being from 2005 to 2007, the importance of focusing attention on care for the caregivers cannot be overemphasised as its importance continues today, and will only increase over the next several years. The results of this study demonstrate some of the needs identified by caregivers. Caregivers want support in terms of coaching, active feedback and having a reliable resource person who they can contact with questions and concerns. This remains consistent in the results of more recent research findings regardless of the patient's chronic disease diagnosis.3–5

Healthcare providers play a vital role when providing care to medically complex patients. We need to include the caregiver within the unit of care in our assessments to improve outcomes.4 ,5 Having knowledge of what caregivers often encounter, healthcare practitioners can support caregivers by providing the needed information and education, allowing time for questions, providing psychological support and encouraging guilt-free ‘me time’. Additionally, being aware of local resources, as well as online resources, in order to facilitate referrals and/or direct caregivers to the most appropriate resources is important.

Governments also have an important role related to policy development and funding allocation for services and research. A report by Health Quality Ontario6 outlined similar challenges encountered by caregivers. The report provides a number of recommendations, which are currently being implemented in Ontario, from health system transformation to individualised interventions supporting caregivers. These initiatives, as well as other research recommendations consistently identified in research articles on caregiver burden and distress, need dedicated funding and evaluation strategies to ensure that these are responding and addressing caregiver needs.