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If they are OK, we are OK: the experience of partners living with neuromyelitis optica.

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Title: If they are OK, we are OK: the experience of partners living with neuromyelitis optica.
Authors: Mutch, Kerry (AUTHOR), Methley, Abigail (AUTHOR), Hamid, Shahd (AUTHOR), Moore, Perry (AUTHOR), Jacob, Anu (AUTHOR)
Source: Disability & Rehabilitation. Jun2017, Vol. 39 Issue 13, p1279-1286. 8p.
Subjects: Mental depression risk factors, Anxiety risk factors, Neuromyelitis optica, Interviewing, Marriage, Research methodology, Patient-family relations, Quality of life, Questionnaires, Sex distribution, Psychology of the sick, Spouses, Psychological stress, Disease relapse, Data analysis, Thematic analysis, Burden of care, Medical coding, Attitudes toward illness, Psychology
Abstract: Aim:Neuromyelitis optica (NMO) is a rare neuro-inflammatory condition characterized by acute relapses causing severe visual or physical disability. The impact on family members and their experiences have not been studied. The study aims were to explore the lived experience of partners of people with NMO and to investigate potential carer burden in this population. Method:A mixed-method design was used; 11 partners of people with NMO completed semi-structured interviews; 54 partners completed Zarit Burden Interview and Hospital Anxiety and Depression Scale. Results:Three qualitative themes influenced partners’ quality of life (QoL): role/relationship; it’s all about them; and the impact of NMO. Life changed dramatically for participants after the first NMO attack, necessitating responsibility for physical, financial, social, and emotional support. As NMO symptoms improved and stabilized, freedom and QoL for spouses also improved, albeit with on-going worries regarding the impact of potential devastating future relapses. Quantitative findings showed mild/moderate carer burden (46%), mild/moderate anxiety (59%), and mild/moderate depression (24%). No partner indicated severe carer burden, anxiety, or depression. Conclusion:Participants regarded themselves as partners rather than carers whom require assessment and support for their emotional and health well-being. Health-care professionals need to acknowledge the important role partners play in the dynamics of the family unit, through greater discussion and inclusion. Implications for RehabilitationNMO has a strong impact on couples, resulting in both physical caregiving needs and anxiety regarding the unpredictability of potential devastating relapses.Partners do not necessarily experience clinically significant “burden”, anxiety or depression, and tools which screen for this may not capture the nature of their experiences.Health-care professionals need to acknowledge, consult, and respect the experience of partners during assessment and implementation of action plans.Partners should be individually assessed based upon the physical and emotional dependency created by NMO to improve their health and well-being. [ABSTRACT FROM PUBLISHER]
Copyright of Disability & Rehabilitation is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
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  Data: If they are OK, we are OK: the experience of partners living with neuromyelitis optica.
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  Data: <searchLink fieldCode="AR" term="%22Mutch%2C+Kerry%22">Mutch, Kerry</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Methley%2C+Abigail%22">Methley, Abigail</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Hamid%2C+Shahd%22">Hamid, Shahd</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Moore%2C+Perry%22">Moore, Perry</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Jacob%2C+Anu%22">Jacob, Anu</searchLink> (AUTHOR)
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  Data: <searchLink fieldCode="JN" term="%22Disability+%26+Rehabilitation%22">Disability & Rehabilitation</searchLink>. Jun2017, Vol. 39 Issue 13, p1279-1286. 8p.
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  Data: <searchLink fieldCode="DE" term="%22Mental+depression+risk+factors%22">Mental depression risk factors</searchLink><br /><searchLink fieldCode="DE" term="%22Anxiety+risk+factors%22">Anxiety risk factors</searchLink><br /><searchLink fieldCode="DE" term="%22Neuromyelitis+optica%22">Neuromyelitis optica</searchLink><br /><searchLink fieldCode="DE" term="%22Interviewing%22">Interviewing</searchLink><br /><searchLink fieldCode="DE" term="%22Marriage%22">Marriage</searchLink><br /><searchLink fieldCode="DE" term="%22Research+methodology%22">Research methodology</searchLink><br /><searchLink fieldCode="DE" term="%22Patient-family+relations%22">Patient-family relations</searchLink><br /><searchLink fieldCode="DE" term="%22Quality+of+life%22">Quality of life</searchLink><br /><searchLink fieldCode="DE" term="%22Questionnaires%22">Questionnaires</searchLink><br /><searchLink fieldCode="DE" term="%22Sex+distribution%22">Sex distribution</searchLink><br /><searchLink fieldCode="DE" term="%22Psychology+of+the+sick%22">Psychology of the sick</searchLink><br /><searchLink fieldCode="DE" term="%22Spouses%22">Spouses</searchLink><br /><searchLink fieldCode="DE" term="%22Psychological+stress%22">Psychological stress</searchLink><br /><searchLink fieldCode="DE" term="%22Disease+relapse%22">Disease relapse</searchLink><br /><searchLink fieldCode="DE" term="%22Data+analysis%22">Data analysis</searchLink><br /><searchLink fieldCode="DE" term="%22Thematic+analysis%22">Thematic analysis</searchLink><br /><searchLink fieldCode="DE" term="%22Burden+of+care%22">Burden of care</searchLink><br /><searchLink fieldCode="DE" term="%22Medical+coding%22">Medical coding</searchLink><br /><searchLink fieldCode="DE" term="%22Attitudes+toward+illness%22">Attitudes toward illness</searchLink><br /><searchLink fieldCode="DE" term="%22Psychology%22">Psychology</searchLink>
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Aim:Neuromyelitis optica (NMO) is a rare neuro-inflammatory condition characterized by acute relapses causing severe visual or physical disability. The impact on family members and their experiences have not been studied. The study aims were to explore the lived experience of partners of people with NMO and to investigate potential carer burden in this population. Method:A mixed-method design was used; 11 partners of people with NMO completed semi-structured interviews; 54 partners completed Zarit Burden Interview and Hospital Anxiety and Depression Scale. Results:Three qualitative themes influenced partners’ quality of life (QoL): role/relationship; it’s all about them; and the impact of NMO. Life changed dramatically for participants after the first NMO attack, necessitating responsibility for physical, financial, social, and emotional support. As NMO symptoms improved and stabilized, freedom and QoL for spouses also improved, albeit with on-going worries regarding the impact of potential devastating future relapses. Quantitative findings showed mild/moderate carer burden (46%), mild/moderate anxiety (59%), and mild/moderate depression (24%). No partner indicated severe carer burden, anxiety, or depression. Conclusion:Participants regarded themselves as partners rather than carers whom require assessment and support for their emotional and health well-being. Health-care professionals need to acknowledge the important role partners play in the dynamics of the family unit, through greater discussion and inclusion. Implications for RehabilitationNMO has a strong impact on couples, resulting in both physical caregiving needs and anxiety regarding the unpredictability of potential devastating relapses.Partners do not necessarily experience clinically significant “burden”, anxiety or depression, and tools which screen for this may not capture the nature of their experiences.Health-care professionals need to acknowledge, consult, and respect the experience of partners during assessment and implementation of action plans.Partners should be individually assessed based upon the physical and emotional dependency created by NMO to improve their health and well-being. [ABSTRACT FROM PUBLISHER]
– Name: AbstractSuppliedCopyright
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  Data: <i>Copyright of Disability & Rehabilitation is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=pbh&AN=122253813
RecordInfo BibRecord:
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    Identifiers:
      – Type: doi
        Value: 10.1080/09638288.2016.1193233
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      – Code: eng
        Text: English
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      Pagination:
        PageCount: 8
        StartPage: 1279
    Subjects:
      – SubjectFull: Mental depression risk factors
        Type: general
      – SubjectFull: Anxiety risk factors
        Type: general
      – SubjectFull: Neuromyelitis optica
        Type: general
      – SubjectFull: Interviewing
        Type: general
      – SubjectFull: Marriage
        Type: general
      – SubjectFull: Research methodology
        Type: general
      – SubjectFull: Patient-family relations
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      – SubjectFull: Quality of life
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      – SubjectFull: Questionnaires
        Type: general
      – SubjectFull: Sex distribution
        Type: general
      – SubjectFull: Psychology of the sick
        Type: general
      – SubjectFull: Spouses
        Type: general
      – SubjectFull: Psychological stress
        Type: general
      – SubjectFull: Disease relapse
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      – SubjectFull: Data analysis
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      – SubjectFull: Thematic analysis
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      – SubjectFull: Burden of care
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      – SubjectFull: Medical coding
        Type: general
      – SubjectFull: Attitudes toward illness
        Type: general
      – SubjectFull: Psychology
        Type: general
    Titles:
      – TitleFull: If they are OK, we are OK: the experience of partners living with neuromyelitis optica.
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              Text: Jun2017
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              Y: 2017
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