Is Culture Important to the Relationship Between Quality of Life and Resilience? Global Implications for Preparing Communities for Environmental and Health Disasters

Skevington, Suzanne M.

doi:10.3389/fpsyg.2020.01492

Cited by 20 publications

(11 citation statements)

References 32 publications

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“…It would be interesting to examine what extent the QoL of adults with DS via self-and proxy reports is universally bound. Evidence shows that culture plays a vital role in shaping an individual’s QoL [ 127 ]. An individual’s values might have an impact on their QoL, and this can differ between cultures [ 127 ].…”

Section: Discussionmentioning

confidence: 99%

“…Evidence shows that culture plays a vital role in shaping an individual’s QoL [ 127 ]. An individual’s values might have an impact on their QoL, and this can differ between cultures [ 127 ]. Third, a single reviewer performed the screening, data extraction and quality assessment, which may have introduced bias, although a random sample of potentially eligible full-text articles was independently cross-checked by the entire team.…”

Section: Discussionmentioning

confidence: 99%

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Quality of life in adults with Down syndrome: A mixed methods systematic review

et al. 2023

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Background As the life expectancy of adults (aged ≥ 18 years) with Down syndrome increases for a plethora of reasons including recognition of rights, access, and technological and medical advances, there is a need to collate evidence about their quality of life. Objective Using Schalock and Verdugo’s multidimensional quality of life assessment model, this systematic review aimed to identify, synthesise and integrate the quantitative and qualitative evidence on quality of life in adults with Down syndrome via self-and proxy-reporting. Methods Five databases were systematically searched: MEDLINE, CINAHL, PsycINFO, Scopus, and Web of Science to identify relevant articles published between 1980 and 2022 along with grey literature and reference lists from relevant studies. A mixed methods systematic review was performed according to the Joanna Briggs Institute methodology using the convergent integrated approach. The review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Results Thirty-nine studies were included: 20 quantitative, 17 qualitative, and 2 mixed methods studies. The synthesised findings were grouped into the 8 core domains of quality of life: personal development, self-determination, interpersonal relations, social inclusion, rights, emotional, physical and material well-being. Of the 39 studies, 30 (76.92%) reported on emotional well-being and 10 (25.64%) on rights. Only 7 (17.94%) studies reported that adults with Down syndrome have a good quality of life centred around self-determination and interpersonal relations. Most adults with Down syndrome wanted to become more independent, have relationships, participate in the community, and exercise their human rights. Self-reported quality of life from adults with Down syndrome was rated higher than proxy reported quality of life. Discrepancies in quality of life instruments were discovered. Conclusion This review highlighted the need for a better systematic approach to improving the quality of life in adults with Down syndrome in targeted areas. Future research is required to evaluate self-and proxy-reporting methods and culture-specific quality of life instruments that are more appropriate for adults with Down syndrome. In addition, further studies should consider including digital assistive technologies to obtain self-reported quality of life data in adults with Down syndrome. International prospective register of systematic reviews registration number CRD42019140056.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Quality of life in adults with Down syndrome: A mixed methods systematic review

et al. 2023

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“…Finally, there is yet another possible explanation for the improved QOL during lockdown: a shift of the psychological focus from a purely personal domain (my disease, my pain, my uncertainty, my mortal being, etc. ), to the higher-order domains such as suffering of others, fate of the whole society or the world, future of the globe, how can I be of help to others [37][38][39]. These higher-order preoccupations of patients could have overshadowed their personal suffering to the extent, which we have been able to detect as an improvement in QOL.…”

Section: Discussionmentioning

confidence: 99%

Quality of life in the cirrhosis registry during the SARS-CoV-2 lockdown in Slovakia

Skladaný

Líška

Liptáková

et al. 2022

Preprint

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Introduction: Liver cirrhosis is associated with a poor quality of life (QOL). The SARS-CoV-2 coronavirus pandemic has led to several restriction measures and psychosocial consequences whose impact on QOL has combined with that of cirrhosis in an unknown way. Therefore, we have used our cirrhosis registry to assess quality of life before the pandemic (at the first admission to the tertiary liver unit) and during the most pronounced phase of the first lockdown. Materials and Methods: In this cross-sectional study conducted during the first lockdown in Slovakia (from April to May 2020), we have repeated the QOL measurement of QOL in cirrhotic patients previously enrolled in the RH7 registry. Of the entire RH7 cohort, we have identified patients who were alive (according to the national registry of deaths) and contacted them by phone with a structured and standardized interview led by trained professionals. The tool used for both QOL measurements (at enrolment to RH7 and during the lockdown) was standardized and validated EuroQol-5D (EQ-5D) questionnaire. Results: The study included 97 patients, of which 37 (38.1%) were women and 60 (61.9%) were men. Responses were achieved from 75 patients (68,18%). In general, patients have scored their quality of life significantly higher during the pandemic compared to examination at admission to RH7 (that is, on admission to our tertiary liver unit with cirrhosis) (p = 0.005). In particular, of the domains included in EQ-5D, I.) self-care was better during lockdown compared to the first record on admission to RH7 (p<0.001); II.) the ability to perform daily activities has also improved during lockdown (p = 0.002); on the other hand, III.) pain and discomfort have not changed significantly during lockdown compared with previous measurement (p = 0.882), IV.) anxiety and depression were lower during lockdown compared to admission to RH7 (p = 0.01). Conclusion: The quality of life in patients with liver cirrhosis was better during the lockdown of SARS-CoV-2 compared to the previous measurement at admission to the tertiary liver unit.

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“…Finally, there is yet another possible explanation for the improved QOL during lockdown: a shift of the psychological focus from a purely personal domain (my disease, my pain, my uncertainty, my mortal being, etc.) to the higher-order domains such as the suffering of others, the fate of the whole society or the world, future of the globe, and how can I be of help to others 45 , 46 . These higher-order preoccupations of patients could have overshadowed their suffering to the extent that we have been able to detect an improvement in QOL.…”

Section: Discussionmentioning

confidence: 99%

Comparison of the quality of life of patients with liver cirrhosis before and during the COVID-19 lockdown in Slovakia

Skladaný

Líška

Liptáková

et al. 2023

Sci Rep

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Liver cirrhosis is associated with a poor quality of life (QOL). The COVID-19 pandemic has led to several restriction measures and psychosocial consequences whose impact on QOL has combined with that of cirrhosis in an unknown way. Therefore, we have used our cirrhosis registry to assess the quality of life before the pandemic (on the first admission to the tertiary liver unit) and during the most pronounced phase of the first lockdown. In this cross-sectional study conducted during the first lockdown in Slovakia (from April to May 2020), we have repeated the QOL measurement of QOL in cirrhotic patients previously enrolled in the RH7 registry. Patients who were alive (according to the national registry of deaths) were identified and contacted by phone with a structured and standardized interview led by trained professionals. The tool used for both QOL measurements (at enrolment in RH7 and during lockdown) was a standardized and validated EuroQOL-5D (EQ-5D) questionnaire. The study included 97 patients, of which 37 (38.1%) were women and 60 (61.9%) were men. Responses were achieved from 75 patients (68.18%). In general, patients scored their quality of life significantly higher during the pandemic compared to examination at admission to RH7 (that is, at admission to our tertiary liver unit with cirrhosis) (p = 0.005). In particular, of the domains included in EQ-5D: (1) self-care was better during lockdown compared to the first record on admission to RH7 (p < 0.001). (2) the ability to perform daily activities has also improved during lockdown (p = 0.002). On the other hand, (3) pain and discomfort did not change significantly during the lockdown compared to the previous measurement (p = 0.882). (4) anxiety and depression were lower during lockdown compared to admission to RH7 (p = 0.01). The quality of life in patients with liver cirrhosis was better during the lockdown of SARS-CoV-2 compared to the previous measurement at admission to the tertiary liver unit.

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Is Culture Important to the Relationship Between Quality of Life and Resilience? Global Implications for Preparing Communities for Environmental and Health Disasters

Cited by 20 publications

References 32 publications

Quality of life in adults with Down syndrome: A mixed methods systematic review

Quality of life in adults with Down syndrome: A mixed methods systematic review

Quality of life in the cirrhosis registry during the SARS-CoV-2 lockdown in Slovakia

Comparison of the quality of life of patients with liver cirrhosis before and during the COVID-19 lockdown in Slovakia

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