Home Essential support Caregivers – an undervalued and underutilized essential

Caregivers – an undervalued and underutilized essential


On August 26, Elizabeth K O’Donnell and colleagues reported a prospective study showing that caregivers of patients with multiple myeloma experienced psychological distress across the disease continuum, particularly anxiety. The study adds to previous evidence showing that caregivers often suffered from greater psychological distress and impaired quality of life than the patients themselves. Although they provide an essential service, caregivers are still seen as an informal aspect of healthcare and their views and needs tend to be relegated.

According to the National Alliance for Caregiving’s 2020 report, 21% of the US adult population had caregiving responsibilities, that is, helping someone who is ill or disabled in their social network with activities of daily living. Unsurprisingly, most caregivers are women, employed part-time or full-time, and caregiving is unpaid work in most cases. Caregivers are often overwhelmed with the burden of their role and are emotionally and physically drained with worry about their loved one. Caregiving challenges include lack of time for self, financial hardship, sleep deprivation, and fear of asking for help, which can lead to isolation, depression, and anxiety, such as research shows. Although most hospitals, NGOs and patient organizations have resources for caregivers that emphasize the importance of self-care and support networks, there is little information available on interventions or public policies. , and little research on the social, health and economic effects of caregiving. . With aging populations and the increasing burden of debilitating chronic diseases in high-income countries, the role of caregivers should be recognized as economically and functionally important.

Primary caregivers also have a role to play in shared clinical decision-making. Although there are cultural variations regarding how physicians interact with patients and caregivers globally, research suggests an underutilization of caregivers during the decision-making process. In a series of video analyzes of clinician-patient-caregiver interactions, most caregivers’ involvement was self-triggered and clinicians did not address the preferred level of caregiver involvement. In contrast, most patients and caregivers value and expect caregivers to participate in decision-making, according to a nationwide survey of 990 patient-caregiver pairs. Not involving caregivers in this process seems ethically unacceptable, as they are directly affected by the decisions made and are already subject to a huge emotional burden. Therefore, a more inclusive communication model, similar to those used with caregivers of pediatric patients, could be applied to adult clinics to ensure caregiver engagement.

In hematology, caregivers are a key element in the successful delivery of complex treatments, such as cell therapies, particularly in outpatient settings. It is necessary for anyone undergoing these therapies on an outpatient basis to have a clear caregiver support plan. Caregivers must take the patient to daily visits and may not be able to work, as they must stay with the patient for most of the day and night and must always be available. Caregivers are encouraged to take personal time while the patient makes daily hospital rounds. However, despite the demanding tasks of caregivers, formal support programs are rare. A series of interviews with 17 primary caregivers of ambulatory hematology patients identified caregiver well-being and a collaborative caregiver-healthcare professional relationship as key to ensuring benefits for all. Indeed, some of the latest guidelines from the American Society of Hematology include the assessment of burdens on caregivers as part of critical outcomes for decision-making.

Although awareness of the essential work carers do is growing, there is little societal support, with many countries in the Organization for Economic Co-operation and Development (OECD) still lacking basic policies to facilitate this work. basic and unpaid. Public policies could address several needs of caregivers, including paid care leave, fair and flexible working hours, and putting in place anti-discrimination protections for caregivers. While equally essential to a working society, care leave is less frequently available than parental leave, with only 19 (53%) of 36 OECD countries offering paid family care leave, compared to 24 (67%) offering paid parental leave. Awareness campaigns, such as International Caregiver Day on November 26, can be used to push for these policies. At the clinic, we encourage all healthcare professionals not to miss the opportunity to include the primary caregiver in the shared decision-making process, recognizing their lived experience and crucial role in patient care. .

To learn more about the study of caregivers of patients with multiple myeloma see Adv of blood 2022; 6: 4967–74

To learn more about the series and survey on the involvement of caregivers see Patient Education Tips 2014 ; 96: 302–07 and Psycho-oncology 2013; 22: 2624–31

To know more pediatric patient care see BMC Pediatrician 2017; 17: 146

To know more caregivers of hematological patients see Int J Environ Res Public Health 2020; 17: 4036