19 September 2016
Caregivers and Families of Critically Ill Patients
In a correspondence in New England Journal of Medicine, the UCPH researchers Jannie Nielsen, Ib Bygbjerg and Susan Whyte highlights that research about how a patient’s health affects and is affected by the well-being of family members should not be limited to high-income countries with well-established health and social care systems. Thus, the challenges for caregivers are even greater low-income settings. Find the answer from the editor below.
To the Editor
The attention to the Perspective article by Wittenberg and Prosser (May 12 issue)1 and the study by Cameron et al., which emphasize that a patient’s health both affects and is affected by the well-being of family members, is timely. Both articles concern high-income countries with well-developed health systems. We want to stress that challenges for caregivers are even greater in low-income settings.2 With the increasing prevalence of chronic noncommunicable diseases, families carry heavy burdens in countries in which health care systems are oriented toward acute care populations. Our research on households in Uganda that include a member with type 2 diabetes has shown the difficulties of providing care. Apart from the high treatment cost and loss of income, household members also experienced stress related to the chronic illness.3 Although Wittenberg and Prosser underscore the negative effects on caregivers’ health, having a household member with type 2 diabetes may also benefit the cardiometabolic health of other members.3,4 We suggested that diabetes education for patients should be family-based and agree that health is a family affair, not least in low-income countries.
Jannie Nielsen, Ph.D., Ib C. Bygbjerg, D.Sci.Med. and Susan R. Whyte, Ph.D.
Dr. Cameron replies
Dhand and Feske present egocentric networks as an interesting approach to go beyond the patient to consider other persons in the patient’s network, including family caregivers, as a priority for planning care. This concept, in addition to models of both patient-centered and family-centered care, requires further research in order to understand how it can be used to optimize outcomes for patients and their family caregivers. This approach goes beyond our article to highlight the importance of understanding the interaction between the key players in a patient’s recovery, including the patient, caregiver, and paid health care professionals. Ultimately, the goal would be to develop and test models of care to address these varied needs and viewpoints while also recognizing that one strategy may not meet the needs of all concerned.
Nielsen and colleagues make an important point. Much of what we know about caregiving to patients with sudden-onset and chronic conditions comes from research that has been conducted in high-income countries with well-established health and social care systems. In a previous study conducted in Canada, we explored the experiences and needs of Chinese-speaking families living in a large urban city and found that many of their experiences and needs were similar to those of English-speaking families in the same region, but they had some unique needs related to language, traditional diet, and medical care.1 This research begins to identify differences in experiences that are related to culture, but more research is needed to examine the influence of the context of care on the needs, health, and well-being of family caregivers. Qualitative research with caregiving populations in low-income countries could further our understanding of the effect of illness on caregivers in this context. Considering the limited resources that are available in the community in low-income countries, it will also be important to examine needs across the care continuum, because care in the community tends to place the largest burden on family caregivers.
Jill I. Cameron, Ph.D. University of Toronto, Toronto, ON, Canada email@example.com
Drs. Wittenberg and Prosser reply
Nielsen et al. draw attention to the likelihood of even higher spillover effects in low-income settings than in high-income settings, but they also highlight the important potential for positive effects on family members. Our research corroborates this point, showing that family members’ self-care improves in order to sustain caregiving activities or because of increased awareness of health risks (such as the use of sunscreen by a child of a parent with cancer).1 Others have found a halo effect of bariatric surgery when family members’ weight and eating habits improve along with those of the patient.2 Recent trials are testing a systems approach to intervention design and implementation that takes advantage of family interactions to improve outcomes (e.g., Ideas Moving Parents and Adolescents to Change Together [IMPACT]; ClinicalTrials.gov number, NCT01514279).3 The complexity of family effects underscores the need to consider health from a family perspective when delivering care and designing interventions.