Caregiving burden and quality of life of pneumoconiosis caregivers in Hong Kong

Tang, Wai Kwong; Yip, W.M.; Lum, C. M.; Xiang, Yu‐Tao; H, Lee; Ungvari, Gabor S.

doi:10.1016/j.hrtlng.2010.04.011

Cited by 9 publications

(11 citation statements)

References 35 publications

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“…To capture patients’ needs and illness experience better, a purposive criterion sampling will be adopted. As the needs of patients and the caregiving demand are largely determined by the functional status of the care recipients (Tang et al, ), this characteristic will be used as the criterion to recruit participants for this study. The Modified Barthel Index‐Chinese version (MBI‐C) (Leung, Chan, & Shah, ) will be used for rating the level of physical dependency.…”

Section: The Studymentioning

confidence: 99%

“…In Hong Kong, since the introduction of the statutory Pneumoconiosis Compensation Scheme in 1981, more than 5,000 cases have been diagnosed since then (Pneumoconiosis Compensation Fund Board, ). Although this number is less alarming compared with developing countries, the progressive disabling symptoms in these patients substantially impair the quality of life of patients and their family (Tang, Lum, Ungvari, & Chiu, ; Tang et al, ).…”

Section: Introductionmentioning

confidence: 99%

“…Another major stakeholder who contributes to effective management of pneumoconiosis in the family context is the informal caregivers. The gradual disability of the patients implies their more important roles in supporting disease management and holistic care when the disease progress to a more advanced stage (Tang et al, 2011). Family caregivers are always regarded as an invaluable informal care resource in the social care delivery system.…”

Section: Introductionmentioning

confidence: 99%

“…Despite informal care is an invaluable resource for patients with pneumoconiosis, support to family caregivers is minimal. According to an earlier study conducted in Hong Kong, caregivers of patients with pneumoconiosis reported moderate to high level of caregiving burden (Tang et al, 2011). This not only renders them as 'invisible patients' but also jeopardizes the quality of care they are providing for their care recipients.…”

Section: Introductionmentioning

confidence: 99%

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The experience of patients and family caregivers in managing pneumoconiosis in the family context: A study protocol

Tam

2019

Journal of Advanced Nursing

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Aim This study aims to explore the illness experience and needs of patients with pneumoconiosis and the caregiving experience of their respective family caregivers. Design This is an exploratory qualitative study. Methods Participants will be recruited during the annual patient interview with purposive sampling. Those with a confirmed diagnosis of pneumoconiosis for at least 1 year will be eligible. Patients with different levels of physical dependency will be recruited. The respective family caregivers of these patients, who are ≥21 years of age, assuming the role as primary caregivers of a pneumoconiosis patient will also be invited to join. In‐depth interviews will be conducted in patients’ home separately for patients and their caregivers and a home environment assessment will also be undertaken. The interview data will be transcribed verbatim, managed with the software NVivo 11 and analysed with content analysis. The ethical approval has obtained, and this study is supported by a research grant from the Pneumoconiosis Compensation Fund Board of Hong Kong on 14 August 2018. Discussion This study will advance the knowledge on how pneumoconiosis patients and their family caregivers manage the disease in the family context. The findings of this study can inform the development of a family‐oriented care model to support the pneumoconiosis patients and their family caregivers to manage this condition better. Impact Statement Pneumoconiosis is the most common type of occupational lung disease in the Chinese population. These patients require long‐term comprehensive services and support to assist their disease self‐management. However, little is known about how these patients and their family caregivers manage the disease in the family context. The current study addresses this gap by exploring patients’ illness experience and their family members’ caregiving experience, which is timely to inform the design of family‐oriented model of care to support this clinical cohort. Clinical Trial Registration This study has been registered at http://ClinicalTrials.gov (NCT04022902).

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Section: The Studymentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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The experience of patients and family caregivers in managing pneumoconiosis in the family context: A study protocol

Tam

2019

Journal of Advanced Nursing

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“…An understanding of the daily challenges inherent in this progressive and multifaceted chronic respiratory disease and the associated family caregiving are crucial to inform an effective model of care for this clinical cohort. However, previous studies have mainly adopted a quantitative approach to study the effects of pneumoconiosis on patients' well-being and rehabilitation needs (Chan et al, 2015;Han et al, 2014;Tang et al, 2006), and studies of caregivers have also been limited to identification of their burden level and risk factors (Tang et al, 2011). Few studies have examined their lived experience with this chronic condition.…”

Section: Introductionmentioning

confidence: 99%

The Lived Experience of Patients and Family Caregivers in Managing Pneumoconiosis

Tam

2021

Qual Health Res

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The daily challenges of patients with pneumoconiosis and their caregivers in living with and providing care for this disease remain unexplored. As guided by the interpretive description, we found that pneumoconiosis patients suffered from highly anxiety-provoking symptoms and physical debilitation, which evoked high levels of distress and sense of impending death. The reduced functional capacity disrupted patients’ role functioning and self-esteem. The perceived stigma of the embarrassing symptoms and treatments further disrupted their self-concept and social lives. Providing care for pneumoconiosis patients was demanding and burdensome, which jeopardized family caregivers’ physical, emotional, and social well-being, and the relationship strain with the patients added further frustration to them. The perceived caregiving gain supported them to fully engage in daily caregiving. To improve the well-being of pneumoconiosis patients, a comprehensive empowerment-based dyadic care model is required to optimize adaptive behavioral changes and self-esteem, and improve self-efficacy in disease management for this cohort.

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Development of a multimedia intervention to improve pneumoconiosis prevention in construction workers using RE-AIM framework

Chen

Wong

Law

et al. 2021

Health Promotion International

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Summary Pneumoconiosis is a common occupational lung disease among construction workers. Educational interventions targeting specific ethnic groups of construction workers are of benefit for pneumoconiosis prevention. The aim of this study was to develop a multimedia educational intervention for pneumoconiosis prevention for South Asian construction workers, and to evaluate its feasibility, acceptability and effectiveness in increasing knowledge of pneumoconiosis, modifying beliefs about pneumoconiosis, and enhancing intention to implement measures for its prevention among the workers. This evaluation was performed using the Reach-Effectiveness-Adoption-Implementation-Maintenance framework. A one-group design was adopted and intervention mapping was used to guide the process of intervention development, while the Health Belief Model guided the development of intervention content. The intervention was delivered at construction sites, ethnic minority associations and South Asian community centres. Data were collected via surveys completed at pre-intervention, post-intervention and 3 months after the intervention. A total of 1002 South Asian construction workers participated in the intervention. The participants reported a moderate-to-large increase in knowledge, perceived susceptibility, perceived severity, perceived benefits, cues to action and self-efficacy (Cohen’s d: 0.37–0.89), a small reduction in perceived barriers (Cohen’s d = 0.12) and a moderate improvement in attitudes and intention to practice (Cohen’s d: 0.45, 0.51) at post-intervention. A follow-up survey of 121 participants found that the implementation of preventive measures appeared to increase. Overall, the findings demonstrate that the implementation of a culturally adapted multimedia educational intervention could be an effective approach to improving knowledge, self-efficacy and intention regarding pneumoconiosis prevention among South Asian construction workers.

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Caregiving burden and quality of life of pneumoconiosis caregivers in Hong Kong

Cited by 9 publications

References 35 publications

The experience of patients and family caregivers in managing pneumoconiosis in the family context: A study protocol

The experience of patients and family caregivers in managing pneumoconiosis in the family context: A study protocol

The Lived Experience of Patients and Family Caregivers in Managing Pneumoconiosis

Development of a multimedia intervention to improve pneumoconiosis prevention in construction workers using RE-AIM framework

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