The humanistic burden on caregivers of cancer patients: how can we support them
“Informal” and unpaid caregivers, mostly family members, play a crucial role in supporting cancer patients. This may mean ensuring patient comfort and helping with daily activities such as going to the doctor, helping with hygiene, serving meals, administering medicines, maintaining medical records, coordinating services and care. Or it may be giving emotional and spiritual support. Without caregiver support, the care would need to be provided by either a paid professional or the healthcare system and the social care system.
This support can affect in a very positive way the patient. On the other hand, caregivers may experience unmet needs in their day-to-day lives, such as difficulty balancing their own needs with those of the patient. This “burden” for the caregivers may have negative implications for their health and emotional well-being and it can lead to overwork excessive stress or even to depression.
Humanistic burden
A study titled «The humanistic burden associated with caring for patients with advanced non-small cell lung cancer (NSCLC) in three European countries—a real-world survey of caregivers» evaluated the humanistic burden on caregivers and their important role. [1] Humanistic burden is a concept that encompasses the total impact of a state or condition including emotional, life quality, social, interpersonal, health, and productivity aspects with the aim of capturing a holistic overview of the experienced burden.
A total of 141 physicians participated in the study, which was conducted in France, Germany, and Italy between 2015 and 2016. The caregivers provided to the patients, on average, 29.5 hour of support/week. The type of care provided ranged from emotional support and encouragement to help with eating and finances. Over half of caregivers were the patients’ only care provider. At the time of the survey, about one third of caregivers were in fulltime employment, 8.8% were in part-time employment, and 8.3% were unemployed.
The study demonstrated that informal caregivers provided the majority of support for patients with advanced NSCLC and that their caregiving activities imposed a significant humanistic burden. Caregivers play a vital role in reducing the burden on the health care system and often experience psychological and emotional distress, disruption of daily routines, and financial hardship as a result of their caregiving responsibilities
Few studies aimed to understand the needs of informal caregivers of people with cancer. Communication barriers between caregivers and healthcare professionals and caregivers and patients may limit opportunities for caregivers to seek support for their own needs. There is little personal space for caregivers’ needs over cancer patients’ needs.
Digital health technology
In a recent article, digital technology was considered as a possible tool that can be used to address carers' needs. Caregivers noted the potential for technology to improve their support networks and decrease feelings of isolation in the caring role, by linking carers experiencing similar situations [2]. Participants reported that technology, such as smartphone applications, might be appropriate for improving information and support needs. The study, however, highlighted the reluctance of caregivers to recognize their own needs and maintain home life, while providing care for the patient.
Another study showed decreased burden of caregivers by providing information about the health of the cancer patient through electronic files [3].
In conclusion, technology may provide an opportunity to deliver support to caregivers, who comprise a vulnerable group of people. Both studies concluded that further research is needed to develop digital health services in order to support caregivers and reduce their burden.
Reference:
[1] Wood R et al (2019). The humanistic burden associated with caring for patients with advanced non-small cell lung cancer (NSCLL) in three European countries – a real-world survey of caregivers. Supportive Care in Cancer 27:1709–1719, doi.org/10.1007/s00520-018-4419-3.
[2] Heynsbergh N, et al (2019). Caring for the person with cancer and the role of digital technology in supporting carers. Supportive Care in Cancer 27:2203-2209, doi.org/10.1007/s00520-018-45-3-8..
[3] Fauer AL, et al. Impact of a health information technology tool addressing information needs of caregivers of adult and pediatric hematopoietic stem cell transplantation patients. Supportive Care in Cancer 27:2103-2112, doi.org/10.1007/s00520-018-4450-4.
