Impact of Caregiver’s Burden of Children with Asthma: A Systematic Review

Abstract

Background: Caregiver stress can have a number of detrimental effects, such as physical health problems, mental health difficulties, and a lower overall quality of life. Stress among caregivers is a public health concern because of its relation to higher costs for the person, family, and the healthcare system. Aim: The aim of this review is to analyze the impact of caregiver burden of parents who have a child with asthma. Methods: The electronic databases PubMed, Cochrane Library, and the Web of Science databases were searched to access related articles. Searching was understood and the articles published between 2011 and 2020 were selected. The search terms used in databases were "Caregiver Burden" [Mesh] OR Caregiver Burdens [tiab] OR Care Burden [tiab] OR "Social Support" [Mesh] OR "Stress, Psychological" [Mesh] OR Psychological Stresses [tiab] OR Psychologic Stress [tiab] OR Psychological Stressor [tiab] OR AND "Quality of Life" [Mesh] OR Health-Related Quality Of Life [tiab] OR Health Related Quality Of Life [tiab] OR HRQOL [tiab] AND “Asthma" [Mesh] OR Bronchial Asthma [tiab] OR childhood asthma [tiab] AND "parents/education" [MeSH Terms]. The quality evaluation of the studies was performed by independent reviewer utilizing Joanna Briggs Institute Critical Appraisal Checklists’. Results: Initially, 46 studies that met the searching strategies stated above were found on databases. Eighteen of them remained following the analysis of their abstracts according to inclusion criteria. All the articles were published in English and out of them 18 studies were of descriptive design. Conclusion: Caring for an asthmatic child obviously has a negative influence on parents as caregivers. One of the study’s most notable findings is that asthma affects both the youngster and his primary caregiver. Second, there is a scarcity of information on interventional strategies for asthmatic children’s caregivers. Appropriate caregiving intervention programmes targeted at promoting caregiver well-being will be necessary in the future. The goals of these programmes should be to help parents improve their disease management abilities, their quality of life, and their daily routines. All of the planned initiatives will surely improve the quality of life for both parents and children.

Introduction

In India and throughout the world, asthma is one of the most prevalent chronic childhood illnesses and is a major public health concern. In the past decade, there has been a multifold increase in the incidence of bronchial asthma.^[1] The increasing industrialization of urban areas is the primary reason for the rise in air pollution and environmental smoke.^[2,3] Most kids who have asthma start having symptoms when they are very young.

The term "caregiving" refers to the emergence of a compelling concern for the actions of caring and their outcomes.^[4] It is a way of communicating with people that allows us to learn about other people’s perspectives and experiences. It is a form of assistance for those who need it. It can take the form of help, support, and relief as well as assistance in improving one’s quality of life when faced with illness, disability, or life-threatening situations.^[5] Caregiver’s burden is described as the extent to which a caregiver’s mental or physical health, social life, or financial situation has suffered as a result of caring for a relative. Caregivers’ burden is influenced by their physical, social, and financial circumstances. Patients who are suffering from the ailment receive not only immediate care but also psychosocial assistance from caregivers.^[6]

Because health care is shifting to outpatient and public-based services as a result of advances in medicine, parents must play a more active role in the caring method.^[7] As a result of rising parental duties, many research have focused on assessing parents’ demands, analyzing their conquering and problem-solving capacities.^[8] The aim of this review is to analyze the impact of caregiver burden of parents who have a child with asthma.

Methods

The electronic databases PubMed, Cochrane Library, and the Web of Science databases were searched to access related articles. Searching was understood and the articles published between 2011 and 2020 were selected. Additionally, the reference lists of each article were scanned because it might have been missed in database searches. The search terms used in databases were "Caregiver Burden" [Mesh] OR “Caregiver Burdens” [tiab] OR “Care Burden” [tiab] OR “Care Giving Burden” [tiab] OR “Caregiver Burnout” [tiab] OR “Caregiver Exhaustion” [tiab] OR "Socioeconomic Factors" [Mesh] OR “Socioeconomic Factor” [tiab] OR “Standard of Living” [tiab] OR “Living Standard” [tiab] OR “Living Standards” OR “Social Inequalities” [tiab] OR "Social Support" [Mesh] OR "Stress, Psychological" [Mesh] OR “Psychological Stresses” [tiab] OR “Life Stress” [tiab] OR “Life Stresses” [tiab] OR “Psychologic Stress” [tiab] OR “Psychological Stressor” [tiab] OR “Psychological Stressors” [tiab] OR “Psychological Stress” [tiab] AND "Quality of Life" [Mesh] OR “Health-Related Quality Of Life” [tiab] OR “Health Related Quality Of Life” [tiab] OR “HRQOL” [tiab] AND “Asthma" [Mesh] OR “Bronchial Asthma” [tiab] OR “childhood asthma” [tiab] AND “Children” [tiab] OR "Child" [Mesh] AND "parents/education" [MeSH Terms]. In databases, all the articles meeting inclusion criteria were carefully examined based on their abstract and title.

Quality assessment of the studies was done by using “Joanna Briggs Institute Critical Appraisal Checklists.”^[9] This checklist includes eight items. The sample questions from the checklist for the assessment of descriptive studies are following: “Were the criteria for appraising studies appropriate?” Responses included; “yes,” “no,” “unclear,” or “not applicable.” The options at the last section of the checklist, “include,” “exclude,” and “seek further info” demonstrated the final decision of the author.

Inclusion and exclusion criteria

The studies must have met the following inclusion criteria:

The studies were published between 2011 and 2020 and were published in English, the participants must be parents—mother, father, or both (parents who have a child with asthma) and subject of the studies must be pediatric asthma which includes descriptive, prospective, or retrospective observational, experimental, or quasi-experimental studies. All studies must allow online access to the full text of the article.

Following exclusion criteria has been adopted:

It includes review of literature or case reports, the child’s having another health problem besides asthma, and the studies developing or testing scales.

Results

Initially, 46 studies were found on databases, which met the searching strategies stated above. Eighteen of them remained following the analysis of their abstracts according to inclusion criteria. All the articles were published in English, and 18 of the studies were descriptive in design [Table 1].

Table 1 - Summary of literature results

Authors	Purpose	Samplesize	Datacollectionmethods	Design	Care givers age	Childrenage	Instrument	Outcomes
Kan et al. (2020)	To find out the relationship between parental self-efficacy and quality of life	252	Bluetooth-enabled inhaler sensor	Randomized controlled trial	30–48	9.3 ± 3.4	Pediatric Asthma Caregiver’s Quality of Life Questionnaire (PACQLQ),	Findings suggest that improving parental confidence on when and how to use their child’s asthma medications, particularly during an asthma attack, might be clinically meaningful in enhancing parent’s quality of life
							Parental Asthma ManagementSelf-Efficacy Scale (PAMSES)
Shaikhan et al. (2020)	To assess the QoL among caregivers ofasthmatic children in Qatar	330	Verbal consent	Cross-sectional study	37.4 ± 7.4	3–13	Paediatric Asthma Caregiver Quality of Life questionnaire	Provision of needed support to caregivers and effective approach to controlling asthma are recommended to improve the quality of life of caregivers
							Beck Depression InventoryPaediatric Asthma Control and Communication Instrument
Sloand et al. (2019)	To better understand family social support and test its association with medication adherence, asthma control, and Emergency Department (ED) use	371	Written informed consent and assent obtained from parents and adolescents younger than 18 years of age	Randomized controlled trial	Not specified	12–18	Perceived Family SupportScale (PFS)	Study underscores the importance of family social support in understanding the extent of adolescents’ self-management, particularly medication adherence
							Horne’s Medication Adherence Report Scale (MARS)
							Asthma control test
Everhart (2018)	To compare primary and secondary caregiver QOL within families of children with asthma and determine the potential importance of including secondary caregiver QOL in clinical and research settings	118	Written informed consent was obtained from caregivers and assent from children	Blinded for review	38.68 ± 5.32	7.71 ± 2.13	Hollingshead Index	Primary caregiver QOL was significantly lower than that of secondary caregiver QOL (mean overall QOL of 5.85 versus 6.17, P < 0.05). Better medication adherence was associated with higher primary caregiver QOL (ρ = 0.22, P = 0.02); secondary caregiver QOL, not primary caregiver QOL, was positively associated with child QOL (ρ = 0.20, P = 0.03)
							Pediatric Asthma Quality of Life Questionnaire (PAQLQ)
							Asthma severity test
							Paediatric Asthma Caregiver’s Quality of Life Questionnaire (PACQLQ)
							Brief Symptom Inventory (BSI)Impact of the Family Scale (IOF)
Avcil (2018)	To investigate the associations of asthma with the psychological profile (depression and anxiety) of children with asthma and their mothers as well as the attitudes of these mothers toward their children and their family relationships	64	Interview	Cross-sectional study	35.45 ± 5.89	7.72, 10.67±2.39	Children’s Depression Inventory (CDI)	Depression and anxiety scores weresignificantly higher in the mothers of children with asthma than in those of the comparison group.There was correlation between an increasing number of emergency department visits and increasing depression in the mothers of children with asthma
							Childhood Anxiety Sensitivity Index (CASI)
							Beck Depression Inventory,the State-Trait Anxiety Inventory
Rioseco (2017)	To examine if caregiver’s depressive symptoms are associated with poor asthma control and abnormal immune responses in school-aged children	87	Written informed assent and consent form	Cross-sectional case-control study	Not specified	8.23 ± 2.15	Child Asthma Control Test (cACT)	Result found that depression in primary caregivers is associated with uncontrolled asthma in Chilean school children, but that association was no longer significant after accounting for ICS use.
							Beck Depression Inventory-II (BDI)
Bellin (2017)	Examine relationships between home and community risk experiences and life stress would be moderated by caregiver level of social support	300	Informed consent	Randomized controlled trial	Not specified	5.59 ± 2.71	Crisis in Family Systems (CRISYS)	Lower QoL is related with higher life-stress Poorer asthma and emergency services are the significant determinants for caregiver’s lower quality of life
							Asthma Severity Test
							Visual Analog Scale (VAS)
Melissa (2017)	To explore the chronicity of depressive symptoms in a sample of 276 low-income inner-city mothers of children with high-risk asthma	300	Interview	Randomized controlled trial	Not specified	5.56 ± 2.19	Epidemiologic Studies–Depression Scale	Data highlight the chronic nature of depressive symptoms in low-income mothers of children with poorly controlled asthma
							Visual Analog Scale (VAS).
							Social Support–Emotional/Informational Scale
Rodríguez (2017) [14]	To examine associations among parents’ coping (primary control, secondary control, and disengagement), parental depressive symptoms, and children’s asthma outcomes	78	Interview	Cross-sectional study	38.5 ± 8.6	9.5 ± 3.3	Responses to Stress Questionnaire- Pediatric Asthma version (RSQ)	Parents’ secondary control and disengagement coping are related to children’s asthma outcomes.Secondary control coping may support parents’ mental health and children’s asthma control in low-income urban families
							Beck Depression Inventory-II (BDI-II)
							Asthma Therapy Assessment Questionnaire (ATAQ)
Everhart (2016) [13]	Find out the association between caregiver QOL and child emergency department (ED) use	55	Caregivers and children completed consent and assent forms	Cross-sectional study	Not specified	9.67 ± 1.50	Pediatric Asthma Caregiver Quality of Life Questionnaire (PACQLQ)African American Acculturation Scale-Revised (AAAS-R)Asthma Control Test (ACT)	Less acculturation tied to religious beliefs/ practices and family values (as measured by the AAAS-R) may serve a protective role in reducing the burden low income, urban African American caregivers experience in managing child asthma
Silva (2015) [15]	To examine the direct and indirect links between caregivers’ burden and quality of life	182	Self-report questionnaire	Descriptive	41.06 ± 5.85	10.23 ± 1.27	Revised Burden scaleCOPE Inventory scale	Higher levels of caregiver burden were negatively and indirectly associated with the parents.
							World health organization quality of life scale
Everhart (2015) [16]	To test the relationship between a cumulative risk model and caregiver quality of life (QOL) in pediatric asthma	94	Self report	Descriptive	Not specified	9.97 ± 2.27	Pediatric Asthma Caregiver Quality of Life Questionnaire (PACQLQ)	The cumulative risk model significantly predicted caregiver QOL. Caregivers experience difficulties to overcome with the disease of the child when they expose to multi risks factors.
							Medication Beliefs Questionnaire
Silva (2015)	To test the director indirect association between caregiver burden and QoL through refuse or accept coping	180	Informed consent	Descriptive	41.03 ± 5.77	11.98 ± 2.57	KIDSCREEN-10 index	Higher levels of caregiver burden were negatively associated with the parents’ QoL.
							EUROHIS-QOL 8-item index
							World Health Organization Quality of Life Assessment (WHOQOL-100and WHOQOL-Brief instruments)
Guo (2015) [17]	To assess both quantitatively and qualitatively examined the burden on caregivers of children with asthma.	138	Survey method	Mixed-methods study	40.08 ± 11.46	6.17 ± 3.13	Zarit Caregiver Burden Interview (ZBI)	Caregiver burden (mean ¼ 31.56 ± 14.19) ranged from 24% with no or mild burden, 52% with mild to moderate burden, 22% with moderate to severe burden, and 2% with very severe burden
Sampson (2013) [18]	To conceptualize stress within asthma experiences of caregivers	40	Qualitative semi-structured interviews	Community-based participatory researchDescriptive study	>30	Undefined	Peds QoL Family Impact Module	Caregivers experience stress due to the disease They experience high level of anxiety owing to sudden morbidity and mortality risks
							Zarit Burden Caregiver scale
Cerdan (2012) [19]	To examine the effect of asthma severity of children aged 7–17 years and socio demographic characteristics on the caregiver’s QoL	112	Survey method	Correlational study	39.34 ± 7.71	10.26 ± 2.78	Asthma Severity questionnaire	There was a significant negative correlation between caregiver’s quality of life scores and asthma day symptoms, asthma night symptoms, and asthma exercise symptoms. Asthma severity and other asthma factors increased; caregiver’s quality of life scores decreased.
							Paediatric Asthma Caregiver’s Quality of Life Questionnaire (PACQLQ)
Everhart (2012) [20]	to determine ethnic and site differences in quality of life (QOL) in a sample of Latino (Puerto Rican [PR] and Dominican) and non-Latino white caregivers of childrenwith asthma	787	“Con-sent-to-Contact” formstructured checklist	Cross-sectional study		10.68 ± 2.52	Asthma Functional Severityscale	Latino caregivers may be experiencing a greater level of burden related to their child’s asthma than non-Latino white caregivers.
							Pediatric Asthma Caregiver Quality of Life Questionnaire (PACQLQ)
Crespo (2011) [21]	To test the links between caregiver burden, family environment, and quality of children with asthma and the primary caregiver.	97	Self report	Descriptive	41.77 ± 5.62	12.52 ± 2.48	Family Environment Scale	Parents’ perceptions of family environment mediated the link between caregiver burden and parents’ QoLMore positiveperceptions of family environment were linked to better QoL for parents and children.
							KIDSCREEN-10 Index
							World Health Organization Quality of Life Assessment (WHOQOL
							Revised Burden scale
							Asthma severity test

Stress

Stress and quality of life

According to the findings of the research evaluated in this review, low socioeconomic status, low educational status, poorly managed asthma symptoms, higher rates of healthcare utilization, and being a single parent are all risk factors for the poor quality of life. Everhart et al. used a multi-risk model to assess the caregiver quality of life (socioeconomic status, single vs. two-caregiver households, asthma severity, child QOL, family load, and family stress) and found a non-linear association between the risk model and the caregiver quality of life. Low socioeconomic status, low educational status, poorly controlled asthma symptoms, greater rates of healthcare utilization, and being a single parent are all risk factors for poor quality of life. These are the findings of the studies reviewed in this review. Everhart et al. used a multi-risk model to evaluate caregiver quality of life (socioeconomic status, single vs. two-caregiver households, asthma severity, child Quality of life (QOL), family load, and family stress) and discovered a non-linear relationship between the risk model and caregiver quality of life. As a result, it is possible to conclude that the quality of life of caretakers is influenced by a combination of factors rather than a single aspect. Asthma severity and caregiver quality of life have a negative association. The caregivers’ quality of life diminishes as a result of their work.

Asthmatic children’s caregivers are put under a lot of stress. In the studies, caregiving chores (preventing symptoms, intervening in symptoms), financial strain, parental responsibilities, and personal discomfort were all mentioned as stressors. In studies, caregivers of asthmatic children have been found to have higher stress levels. Income, marital status, and caregiver–child relationships are all risk factors for stress. Regular life stress and asthma management stress are two different types of stress. A lower quality of life is connected to high levels of everyday living stress (unemployment, low income, neighborhood safety, and exposure to community violence) as well as asthma caregiver stress. The scarcity of studies directly addressing caregiver burden is the most serious problem in our research, despite the large number of publications exploring the impact of asthma on parents. This review may provide insight into future interventional trials, by identifying the effects of parental caregiving stress on pediatric asthma.

Discussion

Parenting entails providing daily care for the child. However, providing high-quality care to a child with a chronic disease can be exhausting, negatively impacting both the caregiver’s physical and mental health.^[9] Caregivers face an unexpected, diverse, and challenging experience when caring for a child with a chronic disease. Such an unexpected and complex event may result in a stressful existence and a variety of health issues.^[10,11] Childhood ailments affect both the youngsters and their parents, who are their primary caregivers.

Regardless of the type of disease or the kid’s condition, caregivers must adapt to regular adjustments, such as increased medicine and equipment costs or more time spent caring for the child. In the case of chronic conditions such as asthma, caregivers’ increased responsibility and extra efforts have an impact on their physical and emotional health.^[12]

This review aims to research the experiences of carers who have a kid with a chronic disease. It was discovered that the research analyzed for this review measured caregivers’ quality of life to determine their level of well-being. Because it ensures a broad assessment of well-being across domains of life, quality of life is a widely used measurement technique. The quality of life is a subjective concept that can be interpreted in a variety of ways and encompasses physical, emotional, and social well-being. The most significant drawback of this review is the scarcity of papers directly addressing caregiver burden, despite the abundance of studies examining the effect of asthma on parents. Furthermore, most studies on caregiver burden for asthma are descriptive, and there are not many interventional studies on the topic. By identifying the impacts of parental caregiving strain on pediatric asthma, this review may shed insight into future interventional investigations.

Conclusions

Caring for an asthmatic child obviously has a negative influence on parents as caregivers. One of the study’s most notable findings is that asthma affects both youngsters and their primary caregivers. Second, there is a scarcity of information on interventional strategies for asthmatic children’s caregivers. Appropriate caregiving intervention programmes targeted at promoting caregiver well-being will be necessary in the future. The goals of these programmes should be to help parents to improve their disease management abilities, their quality of life, and their daily routines. All of the planned initiatives will surely improve the quality of life for both parents and children.

Financial support and sponsorship

None.

Conflicts of interest

There are no conflicts of interest.