An observational, longitudinal study on the home environment of people with chronic obstructive pulmonary disease: the research protocol of the<i>Home Sweet Home</i>study

Nakken, Nienke; Janssen, Daisy J.A.; Bogaart, Esther H. A. van den; Vercoulen, J.H.M.M.; Wouters, Emiel F.M.; Spruit, Martijn A.

doi:10.1136/bmjopen-2014-006098

Cited by 19 publications

(21 citation statements)

References 52 publications

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“…Informal caregivers play an important role, but the process of informal caregiving is complex. Therefore, exploring the interaction between patients and informal caregivers and paying attention to the needs of informal caregivers should be part of research [55], and in turn, of regular clinical care for patients with COPD. This could improve the quality of life of both patients and their informal caregivers and save healthcare costs [20].…”

Section: Resultsmentioning

confidence: 99%

“…Several questions remain, which need to be addressed by further studies. These studies should include the role and lifestyle of informal caregivers, the impact of caregiving on the informal caregivers, including the impact during and after acute events like COPD-related hospital admissions, and the perceptions of the informal caregivers of the patients' health status (table 1) [55].…”

Section: Future Perspectivesmentioning

confidence: 99%

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Informal caregivers of patients with COPD: Home Sweet Home?

et al. 2015

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The burden of chronic obstructive pulmonary disease (COPD) on society is increasing. Healthcare systems should support patients with COPD in achieving an optimal quality of life, while limiting the costs of care. As a consequence, a shift from hospital care to home care seems inevitable. Therefore, patients will have to rely to a greater extent on informal caregivers. Patients with COPD as well as their informal caregivers are confronted with multiple limitations in activities of daily living. The presence of an informal caregiver is important to provide practical help and emotional support. However, caregivers can be overprotective, which can make patients more dependent. Informal caregiving may lead to symptoms of anxiety, depression, social isolation and a changed relationship with the patient. The caregivers' subjective burden is a major determinant of the impact of caregiving. Therefore, the caregiver's perception of the patient's health is an important factor. This article reviews the current knowledge about these informal caregivers of patients with COPD, the impact of COPD on their lives and their perception of the patient's health status. @ERSpublications Informal caregivers play important roles: their needs should be part of research and clinical care for COPD patients http://ow.ly/PSl7F

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Section: Resultsmentioning

confidence: 99%

Section: Future Perspectivesmentioning

confidence: 99%

Informal caregivers of patients with COPD: Home Sweet Home?

et al. 2015

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“…This study was approved by the Medical Research Ethics Committees United (MEC‐U), the Netherlands (NL42721.060.12/M12‐1280), registered in the Dutch Trial Register (NTR3941), and conducted in accordance with the amended Declaration of Helsinki . The study protocol and health status data were published previously …”

Section: Methodsmentioning

confidence: 99%

Patient versus proxy‐reported problematic activities of daily life in patients with COPD

et al. 2016

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Background and objective Loved ones (proxies) of patients with COPD are confronted with the patients’ limitations in activities of daily living (ADLs). However, it remains unknown whether proxies are able to correctly estimate the problematic ADLs of the patient. Therefore, we aimed to investigate the level of agreement between patient‐reported and proxy‐reported problematic ADLs of the patient. Methods Stable outpatients with moderate to very severe COPD (n = 194) and their resident proxies (n = 194) were included in this cross‐sectional study. Patients’ problematic ADLs were assessed in the domains ‘self‐care’, ‘mobility’, ‘productivity’ and ‘leisure’ using the Canadian Occupational Performance Measure (COPM) in both patients and resident proxies. Furthermore, the perceived performance and satisfaction for important problematic ADLs were rated on a 10‐point scale. Results In total, 830 problematic ADLs were reported by patients, and 735 by proxies. Agreement in reporting problematic ADLs within a domain was poor (productivity and leisure; κ; = 0.20 and 0.16, respectively) to fair (self‐care and mobility; κ = 0.32 and 0.22, respectively). Similar performance and satisfaction scores, for equally reported problematic ADLs, were given by 24.0% and 17.6% of the pairs, respectively. Conclusion Proxies were often not able to identify the patients’ most important problematic ADLs. Moreover, when patient and proxy agreed about the presence of a specific problematic ADL, the perception of the performance and the satisfaction with that performance differed within most pairs. This emphasizes the importance of involving proxies, besides patients alone, in identifying patients’ problematic ADLs.

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“…The baseline results of the Home Sweet Home Study were used, in which data were collected during home visits at baseline and after 12 months 17. Additional home visits were performed when an exacerbation-related hospital admission occurred during the 12-month follow-up period.…”

Section: Methodsmentioning

confidence: 99%

“…This study is approved by the Medical Research Ethics Committees United, the Netherlands (NL42721.060.12/M12-1280), and is registered in the Dutch Trial Register (NTR3941). The protocol of this study and data about health status and problematic activities of daily life were published before 17–19…”

Section: Methodsmentioning

confidence: 99%

Gender differences in partners of patients with COPD and their perceptions about the patients

Nakken

Janssen

Vliet

et al. 2016

COPD

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Background/objectivesChronic obstructive pulmonary disease (COPD) not only affects patients but also their partners. Gender-related differences in patients with COPD are known, for instance regarding symptoms and quality of life. Yet, research regarding gender differences in partners of patients with COPD has been conducted to a lesser extent, and most research focused on female partners. We aimed to investigate differences between male and female partners of patients with COPD regarding their own characteristics and their perceptions of patients’ characteristics.DesignCross-sectional study.SettingFour hospitals in the Netherlands.ParticipantsOne hundred and eighty-eight patient–partner couples were included in this cross-sectional study.MeasurementsGeneral and clinical characteristics, health status, care dependency, symptoms of anxiety and depression, social support, caregiver burden, and coping styles were assessed during a home visit.ResultsFemale partners had more symptoms of anxiety and a worse health status than male partners. Social support and caregiver burden were comparable, but coping styles differed between male and female partners. Female partners thought that male patients were less care dependent and had more symptoms of depression, while these gender differences did not exist in patients themselves.ConclusionHealth care providers should pay attention to the needs of all partners of patients with COPD, but female partners in particular. Obtaining an extensive overview of the patient–partner couple, including coping styles, health status, symptoms of anxiety, and caregiver burden, is necessary to be able to support the couple as effectively as possible.

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An observational, longitudinal study on the home environment of people with chronic obstructive pulmonary disease: the research protocol of theHome Sweet Homestudy

Cited by 19 publications

References 52 publications

Informal caregivers of patients with COPD: Home Sweet Home?

Informal caregivers of patients with COPD: Home Sweet Home?

Patient versus proxy‐reported problematic activities of daily life in patients with COPD

Gender differences in partners of patients with COPD and their perceptions about the patients

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