Taking the ‘burden’ out of caregiver burden
Ageing populations and rising numbers of people with chronic conditions mean more and more people are becoming informal caregivers. When new treatments are developed, regulators should take into account the value they bring to these carers, as well as the patients themselves, suggest Sarah Kilgariff and Laura Grant.
Sarah Kilgariff and Laura Grant
New treatments can bring positive outcomes for patients, such as improved health status, health-related quality of life and longer life expectancy. However, a longer life expectancy, particularly for an ageing population, is not without complications such as the potential for an array of chronic and disabling conditions, for which patients may require support and care. Moreover, the trend towards more sedentary lifestyles, even in younger people, can lead to earlier onset of chronic and disabling conditions. As a result, there is a growing need for caregivers to support and care for people of all ages.
The role of caregiver has existed within the family structure for centuries, yet the concept of measuring the ‘burden’ associated with this role only emerged in the 1960s1.
Analysis of the 2011 UK Census figures showed an increase in the number of unpaid caregivers living in the UK from approximately 620,000 to 6.5 million in just 10 years2, an 11% rise since the previous Census in 2001. Furthermore, as some individuals who provide care for relatives and close friends may not consider this role as ‘caregiving’, perceiving it as their natural or given responsibility, it is possible that the actual number of unpaid caregivers may be underestimated, their experiences unmeasured and their needs unmet.
Why conduct research with caregivers?
The growing number of individuals with caregiver/caring responsibilities has initiated an increase in the volume of research in this area. Caregiver research may be of interest to multiple stakeholders, including pharma companies, payers, regulators, clinicians and caregivers themselves. Measuring the impact of disease on the caregiver, as well as the patient, provides greater evidence of the societal worth of new drugs. The financial, time and emotional costs associated with caregiving, as well as impact on the caregiver’s own health and quality of life have been a focus for existing research3.
Defining the role of a caregiver
A clear definition of a caregiver is essential for research, but the diversity and changeability of the caregiver role make this challenging. The role of a formal or paid caregiver, such as a health care assistant, is well defined, yet there is no such characterisation for informal or unpaid caregivers.
An individual who receives care from an informal caregiver could be living with a range of concomitant diseases or disabilities, which might vary in severity and the subsequent need for assistance. Caregiving responsibilities may range from short-term arrangements, with minimal need for assistance, to full-time, live-in caregivers for patients with limited independence and mobility. The relationship of the caregiver to the person they provide care for can be a spouse, child, family member, friend or neighbour. Additionally, the health needs and age of the caregiver may vary significantly (e.g. elderly caregiver caring for elderly spouse or young adults caring for a parent). As a result, the role of the informal caregiver is often ill-defined.
Furthermore, identifying the impacts associated with the caregiver experience can be challenging. Caregiving has been associated with psychological, physical, social and financial impacts, which have been linked to depression and a reduction in quality of life4,5. Despite these impacts, informal caregivers themselves may not describe their role as ‘burdensome’ and instead talk positively about their role. Caregivers may perceive a personal responsibility for the wellbeing of the patient and often work long hours with little support to ensure that the patient is cared for. Consequently, informal caregivers can be reluctant to discuss any negativity associated with the role, for fear of appearing uncaring. As a result, it is likely that the true level of ‘burden’ may be underestimated.
Overcoming the challenges
In order to try to establish a more accurate reflection of the caregiver experience, discussion with informal caregivers should be handled carefully. It is important that research takes into account the following challenges imposed by measuring the caregiver experience:
• Use of the word ‘burden’: It should never be assumed that the caregiver role is a burden. Since some caregivers may not describe their role as being ‘burdensome’, it is essential to avoid using this term in any communication with the caregiver, as this may reduce the openness of their responses.
• Interpersonal relationships: Caregivers may not want to give the impression that they feel any negativity towards the person for whom they care, particularly if there is any possibility that this will be fed back to the individual. Whenever possible, it is also important that research is conducted away from the person that the caregiver provides care to.
• Establishing a rapport: Focusing on the positive aspects of caregiving is important. This may allow the caregiver to relax into the discussion and naturally elicit honest discussion of the more challenging aspects associated with caregiving.
• Novel data capture: Real-time data capture, using methods such as mobile apps, as opposed to retrospective data capture, can add value beyond traditional research methodologies by achieving an instant reaction to an event, free from the constraints/formalities of structured research settings. These novel methodologies may be more likely to accurately capture the true impact of being a caregiver.
• Cultural differences: These can influence the way that caregivers perceive and respond to their responsibilities. Factors such as caregiver coping strategies, levels of distress, acceptance of the disease, attitudes towards clinicians and towards help offered from others may vary between cultures. In cultures where it is traditional for elderly parents to live with, and be cared for by, their children, the concept of ‘caregiver burden’ may even seem alien. Therefore, such differences should be considered when conducting any research to ensure cultural diversity is respected, particularly when referring to a potentially challenging topic.
Caregiver burden is a significant aspect of the wider disease experience which is often overlooked in the evaluation of new treatments. It is important to understand how various diseases and illnesses can impact not only the patient, but also the informal caregivers of those patients. This should be considered by pharma companies when making decisions regarding the development of new treatments and interventions, by regulators when approving treatments and payers when providing access to these new treatments.
About the authors:
Sarah Kilgariff and Laura Grant are Senior Research Associates at Adelphi Values UK. As part of the Patient-Centered Outcomes team they work on the development and validation of patient-, clinical- and observer-reported outcomes assessments. Sarah and Laura have experience of working across a range of therapeutic areas and have a particular interest in qualitative research with caregivers.
Sarah has an MSc in Health Psychology from Staffordshire University and a BSc (Hons) in Psychology and Biology from Keele University.
Laura has an MSc in Clinical and Health Psychology from the University of Manchester and a BSc (Hons) in Psychology from the University of Liverpool.
1. Hoffmann R L, Mitchell A M. Caregiver burden: historical development. Paper presented at: Nursing Forum 1998.
2. Chris White O. 2011 Census Analysis: Unpaid care in England and Wales, 2011 and comparison with 2001. 2013.
3. Zivin K, Christakis NA. The emotional toll of spousal morbidity and mortality. The American Journal of Geriatric Psychiatry. 2007;15(9):772-779.
4. Nayak M G, George A, Vidyasagar M, Kamath A. Quality of life of family caregivers of patients with advanced cancer. IOSR Journal of Nursing and Health Science. 2014;3(2):70-75.
5. Nguyen D L, Chao D, Ma G, Morgan T. Quality of life and factors predictive of burden among primary caregivers of chronic liver disease patients. Annals of gastroenterology: quarterly publication of the Hellenic Society of Gastroenterology. 2015;28(1):124.
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