Burden among caregivers for children with asthma: A mixed-method study in Guangzhou, China

Guo, Miaolan; Gao, Guozhen; Guo, Jinlan; Wen, Litao; Zeng, Liting

doi:10.1016/j.ijnss.2015.10.004

Cited by 14 publications

(13 citation statements)

References 27 publications

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“…These severe attacks differ distinctly from some other conditions that have a more chronic disease trajectory [ 14 ] and place psychological demands on carers, leading to anxiety, depression, stress, fear, helplessness and exhaustion. These findings are consistent with data from patients with severe asthma [ 3 ] and parents of children with asthma [ 22 ] who feel emotionally burdened due to the disease's unpredictable nature. The importance of including both the patient and carer in a person-centred model of care is essential to reduce the sizeable burden associated with respiratory disease, especially severe asthma [ 27 ].…”

Section: Discussionsupporting

confidence: 90%

“It's like being on a roller coaster”: the burden of caring for people with severe asthma

et al. 2021

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IntroductionFamily carers and significant others play a fundamental role in the well-being of people with severe asthma. This study aimed to investigate the challenges faced by family carers/significant others of people with severe asthma, to understand if there is an unmet need and to explore coping strategies.MethodsCarers of people with severe asthma were invited to participate in a face-to-face or telephone interview. Semi-structured interviews were conducted until reaching data saturation of themes. The 20 interviews were recorded, transcribed and analysis of data followed an inductive thematic approach.ResultsWe report three overarching emergent themes:(1) “Caring role impacts”: centred around the negative and positive impacts of caring on carers' well-being; (2) “Unmet needs”: encapsulated the support needs participants desired and were categorised into unmet: informational, biopsychosocial needs, and carers' involvement in decision making; (3) “Coping strategies”: central to the range of tools and positive approaches in dealing with caring demands.DiscussionCaring for someone with severe asthma can be burdensome and may negatively affect the physical and psychosocial health of the carer. Various coping strategies are used to manage the demands of these caring roles. Carers of people with severe asthma expressed a need for information, biopsychosocial, and involvement in care decision making support. Tailored support services that are sensitive to their needs may improve their quality of life and encourage healthcare providers to value and acknowledge the important contribution that carers make.

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Section: Discussionsupporting

confidence: 90%

“It's like being on a roller coaster”: the burden of caring for people with severe asthma

et al. 2021

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“…Overall lower WHOQOL-BREF scores may be the result of overwhelming responsibilities and a struggle to balance work and life. The current trend in Jordan to minimize inpatient hospital days and manage the sick child at home requires more involvement of mothers in the care of their children and may require time away from work thereby lowering the income ( Dowdell, 2004 ; Guo et al., 2015 ; Koehler et al., 2014 ). Furthermore, families experience financial burden caused by the recurrent attacks of chronic illnesses requiring unpredictable emergency room visits ( Fagnano et al., 2012 ; Koehler et al., 2014 ).…”

Section: Discussionmentioning

confidence: 99%

Quality of life of working and non-working Jordanian mothers caring for chronically ill child and its associated factors

Gharaibeh

2021

Heliyon

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Background Balancing work-life and routines of daily life gets complex when a child is chronically ill. Aim This study aimed to examine the QOL of working and non-working mothers caring for children with a chronic illness in Jordan and determine predictors of QOL of working mothers. Design Descriptive comparative cross-sectional design. Method Data from 164 mothers who cared for a child with a chronic disease were collected. The World Health Organization Quality of Life – BREF (WHOQOL-BREF) was used to collect the data on physical, psychological, social relationships, and environment domains. Results The quality of life of working mothers was significantly lower than those of non-working mothers on all domains of WHOQOL-BREF. Mother's working status, monthly income, evaluation of their own health explained 41% of the variance. Social, family and employer support may help them overcome the challenges of caring for a child with a chronic illness and maintain good QOL.

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“…In the present study, one-third of caregivers reported had no burden [Figure 1], though ZBIS shows emotional, financial, and future of the child-related worries [ Table 1 ] which was similar to studies done by Asadullah et al ., Kidman and Thurman and Guo et al . [ 7 8 9 ] This may be because caring for own sick child is considered more as social responsibility in the Indian setting. HIV-associated social stigma and isolation may limit caregivers' willingness to seek assistance from formal agencies, for themselves or their families.…”

Section: Discussionmentioning

confidence: 99%

Caregiver's burden of children living with HIV on antiretroviral therapy at an urban setup

Inamdar

Kosambiya²,

Modi

2021

Indian J Community Med

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Context: Availability of antiretroviral therapy (ART) has helped to decrease morbidity and increase the longevity of children living with Human Immunodeficiency Syndrome (CLHIV/CLHA). These children require the special involvement of family members for adherence to care and support programs. Long-term caregiving stress can result in physical, social, emotional, and medical consequences for both the caregiver and the CLHIV. This study explores the burden and needs for support among CLHIV caregivers. Methods: A cross-sectional study was conducted at an ART Centre of Tertiary level Health Care Institute among 126 caregivers of CLHIV pretested and piloted semi-structured questionnaire and Zarit Burden Interview Scale (ZBIS) were employed to assess study objectives. Descriptive statistics and caregiver burden scoring were calculated. ZBIS score of 22 and above were considered additional burden for caregivers. Results: Mean age of caregivers was 34 ± 7.15 years. Among 126 CLHIV caregivers, 116 were female, while 110 had positive HIV serostatus. Ninety-seven percent disclosed their and the child's status to one or more family members. Mean caregiver ZBIS was 25 ± 7.08 with 71.5% caregivers having mild-to-severe levels of burden. Around 85% of caregivers knew correctly about four routes of HIV transmission although 8.7% had misconception regarding HIV transmission. Conclusions: ZBIS assessment shows emotional, financial, and future of child-related burden among CLHIV caregivers. There were gaps in the knowledge about HIV transmission, care and support needs of the CLHIV. The acquisition of HIV from parents in CLHIV suggests the need of strengthening the prevention of parent-to-child transmission program in Indian settings.

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Burden among caregivers for children with asthma: A mixed-method study in Guangzhou, China

Cited by 14 publications

References 27 publications

“It's like being on a roller coaster”: the burden of caring for people with severe asthma

“It's like being on a roller coaster”: the burden of caring for people with severe asthma

Quality of life of working and non-working Jordanian mothers caring for chronically ill child and its associated factors

Caregiver's burden of children living with HIV on antiretroviral therapy at an urban setup

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