When friends or neighbors care for seriously ill people: In the NOCA study, an MHH team is investigating their situation.
Family members and friends often care for seriously ill people—in the neighborhood and among friends. Image source: pixabay / alanajordan
Relatives usually take care of seriously ill people. However, a friend, neighbor, or someone from their social circle often takes on this care—either in addition to the relatives or even on their own. What motivates them? What tasks do they take on? How do they experience their situation? These and similar questions are the focus of the NOCA study, which was conducted by a team from the Hannover Medical School (MHH) in cooperation with the University Hospital (UK) Erlangen. To this end, the research team surveyed 82 caregivers via questionnaire and interviewed 20 caregivers in person.
Caregivers play an important role
More than five million people in Germany require long-term care. Most are cared for at home, and one in ten is cared for exclusively by a non-relative. “Caregivers therefore play a major role in providing care. And yet there is hardly any scientific data on this,” explains Associate Professor (PD Dr.) Dr. Franziska Herbst fromthe MHH Institute of General Medicine and Palliative Medicine, explaining the background of the NOCA study (Non-Relative Caregivers of People with Terminal Illnesses: Experiences, Needs, and Contribution to Care). The project leader and her team wanted to use the study to gain initial insights into caregivers. Their findings revealed the following: Caregivers are mostly women and, on average, 57 years old. Most identify as friends, others as neighbors, and a few as acquaintances or “others,” such as coworkers.
From emotional support to help around the house
The analysis of the questionnaires revealed that the types of assistance provided are very diverse. “Emotional support—for example, through conversation or simply keeping them company—was the most frequently cited form of help, at 97.6 percent,” says Catharina Münte of the MHH research team. Also ranking high are assistance with mobility outside the home and the coordination of external nursing and support providers. Furthermore, family members and close friends assist with using media, household tasks, taking medication, and handling bureaucratic matters. As for motivation, most family members and close friends care for the seriously ill person primarily because they have an emotional bond with them. This was reported by 85.4 percent of them. Another common reason is that “caring for someone makes you feel good.” Many also act out of a sense of moral obligation.
Stress and positive experiences
On average, family members care for the ill person for about ten hours per week. Do they perceive their involvement as a burden? There are significant differences among the individual respondents on this point; some feel “very” burdened, while others feel only “a little” burdened. “Citing that providing care takes a toll and leads to physical exhaustion were both mentioned as burdens by 46.3 percent of respondents,” explains Catharina Münte. Furthermore, being torn between caring for the seriously ill person and the demands of one’s own daily life is a burden. Alongside these stresses, however, caregivers also experience positive aspects: for 64.6 percent, these include both an improved relationship with the person who is ill and an increase in knowledge. 56.1 percent reported a deeper examination of their own values.
Desire for support
As part of the NOCA project, caregivers were also asked about their own needs. It became clear that half of them would like more opportunities for self-care to balance out their caregiving responsibilities. About 44 percent would like to receive more support from healthcare and social service professionals, and 39 percent from friends and family members of the person with the illness. There is also a desire for more easily accessible information about medical and psychological support services.
One of the first studies in germany
The study included adult caregivers who currently provide at least four hours of unpaid care per week to a person with a serious or life-limiting illness, or who have done so in the recent past. The study is one of the first in Germany to focus on caregivers. “With our study, we aim to draw scientific attention to this important group of people,” says PD Dr. Franziska Herbst. “We hope that it will serve as a foundation for further research and promote discussion of the topic.” The NOCA study conducted by the MHH and the University Hospital Erlangen was funded by the German Research Foundation (DFG) with a total of 317,000 euros.
Text: Tina Götting