Mindfulness consultant Eunice Yu reminds us that self-care reaches beyond the physical body.
Published On: Oct 27, 2021
Last Updated On: Oct 27, 2021
People with atopic dermatitis (AD) are known to be impacted with the physical symptoms of AD in addition to sleep disturbance, depression, anxiety and quality of life impairment. Less research has been done to understand AD’s impact on caregivers.1,2 Caregivers can be involved in multiple aspects of patient care and symptom management including: managing treatment regimens, coordinating provider appointments, care decision-making and emotional and mental support.3 Studies on the impacts of AD on patient caregivers are beginning to emerge, the earliest of which indicate that AD patients’ family members and caregivers experience time-consuming treatment regimens, household changes and great relational and financial impacts associated with high stress.4,5 Caregivers may also miss work or experience decreased work productivity.3 A survey of 235 pediatric AD caregivers6 revealed that:
One parent described AD as a “nonstop and never ending nightmare.”6 Here we will discuss the current research on caregiver burden in AD and opportunities to support caregivers in their important care role, and as an individual also impacted by this chronic disease. Because little to no research has specifically looked at caregivers of adults with AD, or other familial care partners, such as spouses, this article focuses on caregivers of pediatric AD patients. However, research on caregivers of aged patients is crucial since “research with other conditions like dementia and cancer has shown that several factors related to age predict greater degrees of depression and stress in caregivers” according to Katrina Abuabara, MA, MSCE of the University of California, San Francisco. Caregivers in the context of AD are frequently parents of the around 10.7% of pediatric patients (17 and under) with AD in the United States (U.S.).7,8 Caregivers can also be defined as adults in relationships with the up to 10.2% of adult patients with AD.9
The first studies published on the effects of AD on families were conducted in the early 2000s. Caregivers (n=49, mostly mothers) experienced reduced quality of life associated with: 1) increased severity of their child’s condition (13%); 2) high use of nonmedical products (over-the-counter products, special clothes and food, air filters) for their child’s condition (21%, p < 0.01); and 3) financial concern about the child’s condition (18%).4
A U.S. study of the financial burden of childhood AD found that among 82 caretakers surveyed during a medical office visit for their child, the mean monthly personal cost of AD was $274. Of the $274 spent monthly, $75 was from direct costs (medical visits, medications and other products) and $199 was from indirect costs (time missed from work, childcare costs).10
Sleep deprivation is also a huge burden experienced by caregivers of patients with AD. In responses to polling and a survey in the “More than Skin Deep” study, sleep ranked third among the top three most problematic symptoms (itch, skin appearance, sleep deprivation), with more caregivers of children with eczema rating the symptom of sleep disturbance among the top three (48%) compared to adults with eczema (22%).11 Sleep loss can influence nearly all aspects of life including emotional state, mood, well-being, ability to concentrate and ability to take initiative. A group of 12 parents of children less than two years old with AD described tiredness, fatigue, anxiety and guilt. Some of these parents described impaired cognitive function, such as memory deficits and an increased sensitivity to stress and sound. Just hearing their children’s voices provoked stress. Parents changed their routines and behavior (went to sleep earlier, slept during the day, cancelled plans in order to sleep) to compensate for sleep loss.12
A much larger study conducted in the United Kingdom of 13,988 mother-child pairs followed from birth for 11 years found that mothers of children with AD reported difficulty falling asleep, subjectively insufficient sleep and daytime exhaustion throughout the first 11 years of childhood.13 Of these mothers, 5% to 12% reported sleeping fewer than six hours per night, 18% to 20% reported early morning awakenings, 12% to 13% reported difficulty falling asleep, 38% to 43% reported subjectively insufficient sleep and 6% to 10% reported daytime exhaustion during the first 11 years of their child’s life.13
Some studies on caregiver burden in AD have also found that caregiving for a pediatric AD patient can add stress to spousal relationships and reduce the ability of parents to pay attention to siblings.5 A recent review of literature3 concerning impacts on families with children affected by AD acknowledged, however, that many studies on the topic were decades old and that large-scale studies have not recently been done. Nevertheless, the review found effects on parent-child relationships, particularly the need to constantly keep the affected child from scratching. With increased parental focus on a chronically ill child, siblings may experience jealousy, envy and feelings of loneliness. These effects have been described anecdotally in AD, but not thoroughly explored.
There are myriad reported impacts on AD’s impact on family dynamics. In the literature review with regard to parents3, normal family activities, such as playing outside with children, giving baths, or taking pictures were classified as exhausting and difficult. Many parents of children with AD reported rarely spending time together without their child. Sleep deprivation and co‐sleeping may contribute to decreased intimacy between spouses or partners. Experiences with one affected child can reduce parents’ having more children for fear of having to care for other children with the same ailments. Disagreements commonly arise between parents on the best way to handle their children’s difficult‐to‐manage condition, sleeping arrangements and disciplinary methods, which can ultimately result in increased spousal/partner tension. Unsolicited comments and criticism about parenting styles from extended family and society at large can also increase stress and guilt in parents of pediatric AD patients.3 Dr. Abuabara said of responses from the “More than Skin Deep” survey11 that “mental impacts on caregivers included feelings of uncertainty, burnout, helplessness, sorrow, guilt and frustration watching their loved one suffer but not being able to cure their condition. Caregivers described anxiety and concern regarding the disease course, triggers and best methods for prevention and treatment. Impacts were similar among those caring for adults and those caring for children (after taking disease severity into account).” Being a caregiver of an AD patient impacts every facet of life (Figure 1).
Caregivers often have key roles in communicating what AD does to the person they are caring for and actively participating in medical visits and administration of medication. Caregivers regularly assess the severity of the disease in the patients they are caring for and whether treatment regimens are working (and are influencers in adherence to treatment plans).
A recent (2020) systematic review of literature sought to uncover and synthesize views and experiences of AD patients and their caregivers.14 Common themes that emerged were that eczema patients and caregivers experience frustration with the widespread belief that eczema is mundane, knowing that the disease has significant physical and psychosocial impact and is difficult to manage. Patients and caregivers experienced exacerbated frustration when they felt they were given conflicting and/or insufficient information and advice from health professionals, family and others.14 Caregivers also did not always understand that eczema can be a chronic condition requiring long-term treatment, instead expecting that use of medication would result in a cure.14
A recent study assessed similarities between physician-rated and caregiver-perceived disease severity in children with AD.15 Interestingly, 27.7% of caregivers underestimated their child’s AD severity, while 10.8% overestimated the severity of AD compared with physicians. The same study also found that physicians often describe AD in a medical or physical way, whereas caregivers describe AD from a psychosocial and emotional wellbeing standpoint. This difference in the perception of AD can extend to parents compared to patients as well. A 2021 study evaluating the perception of AD severity by parents vs. their adolescent children with AD (399 parent/adolescent pairs)16 found that AD severity (evaluated by the patient-oriented eczema measure (POEM)) was found to be mild in 57.6%, moderate in 32.8% and severe in 9.5% as rated by the adolescent patients. Parents underestimated the AD severity as evaluated by the adolescent in 37.1% of cases and overestimated in 14%. It is important to note that caregivers often underestimated AD severity as described by both physicians and patients themselves in these studies.
The assessment of disease severity by a caregiver can greatly impact treatment adherence of the patient.17 When it comes to a treatment regimen, parents want to know, “Does it work and is it safe?”17 A total of 86 parents of children with AD (average 6.2 years old with moderate to severe AD) responded to a survey about medical adherence. Around half (54.7%) reported that their children were taking or applying medications as directed by physicians. A total of 30.2% reported their child taking less medication than prescribed and 12.8% reported ceasing medication use altogether.17 Parents reported worrying about side effects, a perception that the treated symptoms went away, or that the medication was not helping. Parents said they thought their treatment adherence would increase if they had a clearer indication of effectiveness (55.8%) and access to research or evidence about benefit and side effect profile (14%). For example, with topical treatments such as corticosteroids, caregivers expressed uncertainty around application, duration, and frequency of use. Since physician–patient interactions can be brief, patients and caregivers perceive that they are alone to figure out application involving various potencies and times of use for different areas of the body.18
Collectively, achieving the best outcomes of AD care requires factoring in the unique perspectives of caregivers and their lived experience, and how it may differ from those of care providers and even patients themselves. All three participants (physicians, patients, and caregivers) can and should take part in healthcare decisions.
While certain aspects of the caregiver role and associated impact are less easily alleviated, research points to the need and opportunity to enhance caregiver/healthcare provider communication as a potential starting point to help.4,14,18 Dr. Alan Schwartz, PhD, of the University of Illinois, Chicago says, “Because eczema is such a constant and exhausting condition for both children and patients, dermatologists and primary care physicians treating children with eczema who show concern for the caregiver are likely not only to enhance the caregiver’s wellbeing but to improve trust and reduce life barriers that lead to more effective treatment of the eczema itself.” In fact, published data found that perceived disease severity was found to be a driver of reduced caregiver and family quality of life, but both perception of severity and family impact improved if a family interacted with a health care specialist about the disease rather than a general practicioner.4
Newer resources such as EczemaWise can help caregivers identify and track symptoms outside the doctor’s office so that this information is all in one place and can be used at the point of care to facilitate care conversations and treatment decision making. Caregivers, patients old enough to make assessments, and medical professionals can also use assessment tools in the practice setting to track disease changes over time and develop interventions that can both improve patient outcomes and reduce caregiver burden.4 In addition, action plans, which help caregivers and patients evaluate symptoms and associate actions to take for each symptom have long been used successfully in asthma patients and could be valuable for eczema, even though treatment regimens are often more complicated in eczema than asthma.19,20 Korey Capozza, MPH and founder of Global Parents for Eczema Research echoes the need for additional support stating “There is a lot of work that still needs to be done around configuring healthcare for eczema patients. Dermatologists, out of necessity, do not have much time during each medical visit. There isn’t time to ask the caregiver how they are doing, nor would there be resources to help find answers. There needs to be a reorientation of how care happens for these families. A model more like occurs with other chronic diseases like diabetes would be helpful where nurse educators sit down with parents, walking them through how to treat the disease at home.”
Self-care and support for caregivers is also crucial. The importance of “me time” for caregivers cannot be underestimated and require caregivers to have a support network.12 Dr. Schwartz says, “There are established practices in pediatrics about screening new mothers for post-partum depression, and that’s a good model for thinking about how doctors can attend to the needs of caregivers as well as their patients.” Indeed, the American Academy of Pediatrics recommends that clinicians provide family-oriented care that addresses the needs of the entire family and promotes family functioning to optimize child outcomes. It has been suggested that clinicians caring for children with AD should screen for caregiver sleep disturbances and fatigue, engage caregivers in discussion about their emotional health, and consider offering resources for psychosocial support, particularly in cases of more severe disease.13 Additional resources can also include organizations focusing on caregivers of aged adults (oriented toward caregivers of patients with dementia or cancer but may be applicable) and health care institutions that have social workers and case managers available to patients. While resources for caregivers of AD patients are beginning to exist, more are needed.
Caring for an AD patient can result in tremendous burden for the caregiver encompassing every aspect of their lives. Limited research has explored the dimensions of caregiver burden for patients of all ages or explored the various types of caregiving roles that may exist for AD patients. Since caregivers can be assessors of disease severity and influencers of treatment adherence, understanding a patient’s family structure or extent of a support network as well as increasing caregiver support and education should be key components of medical interventions for AD patients. More studies are needed to understand both the caregiver burden and the impact that caregiver intervention can have on AD patient outcomes.
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