Informal caregiving in COPD: A systematic review of instruments and their measurement properties

Cruz, Joana; Marques, Alda; Machado, Ana; O’Hoski, Sachi; Goldstein, Roger; Brooks, Dina

doi:10.1016/j.rmed.2017.05.002

Cited by 11 publications

(18 citation statements)

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“…7,8 However, this population of patients with COPD is especially at risk of mortality and of increased consumption of resources and therefore, the detection of problems in their social sphere, paying special attention to the situation of their caregivers, should be prioritized. 1,2,12,[14][15][16] Fourth, some limitations are associated with the questionnaires and scales we used to detect overburden, although the Zarit scale has been used previously in a similar context 13 and was validated for use in Spanish 8,29,30 to assess emotional, physical, social, and economic factors. Finally, only the degree of kinship/relationship with the COPD patient and sex of the caregivers was included and so other variables such as age or the presence of comorbidities may have also influenced the perception of increased overburden.…”

Section: Discussionmentioning

confidence: 99%

“…According to the academic literature, this term refers to anyone who does not belong to the formal healthcare services system who attends to the care needs of a dependent and who does not receive any financial compensation for the help they provide. [7][8][9][10][11][12][13]…”

Section: Design and Settingmentioning

confidence: 99%

“…11,12 However, unlike other chronic diseases, this aspect is not well studied for COPD, and the scarce literature available on this topic is very heterogeneous or qualitative in nature, thereby limiting its usefulness for interpretation. 7,8,13 Although multiple questionnaires to detect caregiver overburden are available 13 and their use is recommended in many institutional documents, [14][15][16] they are not routinely applied in clinical practice. 4,11 In addition, until now, little robust and impartial work has been done to study the variables from the clinical or social sphere of COPD patients that would allow the burden of their caregivers to be reliably predicted.…”

Section: Introductionmentioning

confidence: 99%

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Sociodemographic and Clinical Variables Related to the Overburden of the Informal Caregivers of Patients Hospitalized for Chronic Obstructive Pulmonary Disease Exacerbations

Fernández-García¹,

Represas-Represas²,

Ruano-Raviña³

et al. 2021

COPD

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Objective: To increase our knowledge of the patient variables related to the overburden of the caregivers of patients with acute exacerbations of chronic obstructive pulmonary disease (AECOPDs). Methodology: This was a cross-sectional study of patients with severe COPD who have informal caregivers. We performed a multivariate analysis of sociodemographic (economic situation, care, dependence, social risk, and use of social services) and clinical (degree of dyspnea, previous hospitalizations, disease impact, pulmonary function, and comorbidity) factors and related these to the burden of informal caregivers, as evaluated using the Zarit scale.Results: The study included 91 patients, age 72.6±8.7 years and 80 were male (89.7%); the mean modified Medical Research Council dyspnea scale (mMRC) score was 2.5±0.8; mean FEV 1 was 39.5 ± 13.2%; and 70 patients (76.9%) were dependent for basic activities. Of the informal caregivers, 90 (90.9%) were women, 49 (49.4%) were partners or spouses, and 29 (29.6%) were daughters. The mean Zarit questionnaire score was 51.4±14.2, with 63 of carers (69.2%) perceiving some overburden, and 34 (37.4%) describing the overburden as mild-moderate. The variables related to informal caregiver overburden in the multivariate study were the previous use of social resources [OR = 8.1 (95% CI = 1.03-69.9); p = 0.04], degree of mMRC dyspnea 3-4 [OR =4.7 (95% CI = 1.7-13.2); p = 0.003], and two or more admissions for AEPOC in the previous year [OR = 4.5 (95% CI = 1.7-13.2); p = 0.003]. Of the informal caregivers of patients who had presented two or more of these variables, 92.3% perceived an overburden. Conclusion:The variables associated with overburden are easily accessible in patient medical records, or can be obtained by interviewing patients or their relatives. This information would allow to detect and assess the overburden of informal caregivers to provide an early warning of this problem.

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Section: Discussionmentioning

confidence: 99%

Section: Design and Settingmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Sociodemographic and Clinical Variables Related to the Overburden of the Informal Caregivers of Patients Hospitalized for Chronic Obstructive Pulmonary Disease Exacerbations

Fernández-García¹,

Represas-Represas²,

Ruano-Raviña³

et al. 2021

COPD

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“…Interventions for patients with and without caregivers are required to optimize COPD management. Both clinicians and researchers are increasingly studying informal COPD caregiving; the prevalence of severe disease continues to rise, associated with substantial health, social, and economic impacts [23]. Healthcare systems must economically optimize the quality of life of COPD patients.…”

Section: Discussionmentioning

confidence: 99%

The health-related quality-of-life of chronic obstructive pulmonary disease patients and disease-related indirect burdens

Choi

Yang

Rhee

et al. 2020

Korean J Intern Med

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Background/Aims: Many chronic obstructive pulmonary disease (COPD) patients have physical limitations. We investigated EuroQol five-dimensions five-level (EQ-5D-5L) of COPD patients to assess quality of life, and assessed indirect burden including time expenditure to visit doctor, home care rate, and caregiver related burden. Methods: We recruited 355 COPD patients according to severity of airflow limitation that severity was set at 10% mild, 40% moderate, 30% severe, and 20% very severe in two primary and 11 secondary/tertiary hospitals. Eligible patients were aged ≥ 40 years, who have been diagnosed with COPD for more than 1 year. Patients were recruited between June 2015 and October 2016. Results: The quality of life tended to decline with age, from mild to very severe impairment, as revealed by the EQ-5D-5L scores and the EQ visual analog scale. Family caregivers accompanied 22.6% of patients who visited outpatient clinics, and 25% of stage IV COPD patients. During emergency visits and hospitalization, this figure increased to > 60%. The home care rates were 28.5% for stage I patients, and 34.4, 31.8, and 52% for stage II to IV patients, respectively. The percentage of caregivers who stopped working was 13.6%. The EQ-5D index was strongly associated with the dyspnea scale (r = -0.64, p < 0.001). The average required time to see a doctor and visit the pharmacy was 154 minutes. Conclusions: In patients with COPD, the EQ-5D index decreased and disease-related home caregiving increased with airflow limitation. We considered the caregiver-related burden when making a strategy for COPD management.

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“…COPD is a disease process which sees patients’ conditions fluctuate from periods of acute exacerbation – necessitating a hospital admission – to periods of recovery and less acute symptoms. On discharge home from hospital after an acute episode many people with COPD are cared for by family members (Cruz et al, 2017).…”

Section: Introductionmentioning

confidence: 99%

Caring for patients at home after acute exacerbation of chronic obstructive pulmonary disease: A phenomenological study of family caregivers’ experiences

Bagnasco

Rosa

Dasso

et al. 2021

Journal of Clinical Nursing

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Aims and objectives To understand the experiences and support needs of informal caregivers of patients with chronic obstructive pulmonary diseases chronic obstructive pulmonary disease who return home following an acute exacerbation. Background The presence of an informal caregiver is important to provide practical and emotional support after an episode of acute exacerbation of chronic obstructive pulmonary disease. However, caregiving in such circumstances can be challenging and stressful. Design Phenomenology. Methods This is a phenomenological study based on semi‐structured interviews with sixteen primary caregivers of chronic obstructive pulmonary disease patients. Interview data were analysed using Colaizzi's descriptive analysis framework, to identify significant themes and sub‐themes. Data were collected between April‐December 2017 in a Teaching Hospital in Italy. The study was designed and reported following the COREQ guidelines and checklist. Results Analysis elicited five themes embracing various aspects of the caregivers’ lived experiences: (a) a home disrupted, (b) living with constant vigilance and anxiety, (c) feeling the need to escape (d) self‐justifications for caregiving role/duty, and (e) feeling abandoned by professionals. Conclusions Our results show that carers experience a range of difficulties when caring for their relative at home with chronic obstructive pulmonary disease. Some of these are linked to the physical disruption of their home but many are linked to feelings of inability to cope and the psycho‐social impact of the caring role. The study also shows how participants felt unsupported by professionals. Focused support for carers is required to enable them to meet these challenges. Relevance to clinical practice Healthcare professionals should be trained to provide technical and psychological support to caregivers especially during the phases of disease that may involve episodes of exacerbation. Home care and continuity of care can work if there is excellent communication and collaboration between healthcare professionals and caregivers. Developing appropriate support for family caregivers is essential to address the problems they can face.

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Informal caregiving in COPD: A systematic review of instruments and their measurement properties

Abstract: Although several instruments have been used to assess the impact of COPD on caregivers, an increased understanding of their properties is needed before their widespread implementation.

Cited by 11 publications

References 100 publications

Sociodemographic and Clinical Variables Related to the Overburden of the Informal Caregivers of Patients Hospitalized for Chronic Obstructive Pulmonary Disease Exacerbations

Sociodemographic and Clinical Variables Related to the Overburden of the Informal Caregivers of Patients Hospitalized for Chronic Obstructive Pulmonary Disease Exacerbations

The health-related quality-of-life of chronic obstructive pulmonary disease patients and disease-related indirect burdens

Caring for patients at home after acute exacerbation of chronic obstructive pulmonary disease: A phenomenological study of family caregivers’ experiences

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