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Describing the psychosocial profile and unmet support needs of parents caring for a child with a life-limiting condition: A cross-sectional study of caregiver-reported outcomes.

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Title: Describing the psychosocial profile and unmet support needs of parents caring for a child with a life-limiting condition: A cross-sectional study of caregiver-reported outcomes.
Authors: Wolfe, Joanne, Bluebond-Langner, Myra, Collins, Anna, Burchell, Jodie, Remedios, Cheryl, Thomas, Kristina
Source: Palliative Medicine. Mar2020, Vol. 34 Issue 3, p358-366. 9p. 4 Charts.
Subjects: Anxiety, Psychology of caregivers, Mental depression, Longitudinal method, Medical needs assessment, Health outcome assessment, Palliative treatment, Psychology of parents, Quality of life, Questionnaires, Self-evaluation, Statistics, Psychological stress, Terminally ill, Quantitative research, Social support, Burden of care, Cross-sectional method, Children
Geographic Terms: Australia
Abstract: Background: There is a lack of studies examining the prevalence and severity of psychosocial distress in parents caring for a child with life-limiting condition. More research is also needed to better understand the experience, support needs and quality-of-life of this population. Aim: To describe the experience and support needs of caring for children with life-limiting conditions and examine the level of distress and quality-of-life experienced by parents. Design: Cross-sectional, prospective, quantitative study guided by an advisory group. Participants completed a survey that included demographics and self-report outcome measures of unmet support needs, appraisal of caregiving, psychological distress and quality-of-life. Bivariate correlation analyses were performed to examine for associations between measures. Setting/participants: Parents currently caring for one or more children (⩽18 years) with a life-limiting condition and registered with a paediatric palliative care service (Australia). Results: In total, 143 parents (88% female) completed the questionnaire (36% RR). Compared with population norms, participants reported low quality-of-life, high carer burden and high psychological distress. Almost half (47%) of the sample met the criteria for one or more diagnoses of clinically elevated stress, anxiety or depression. There were significant associations between the psychosocial outcome variables; carer strain and depression had the strongest correlations with quality-of-life (r = –.63, p <.001, for both). Participants also reported multiple unmet needs related to emotional and practical support. Conclusions: This study contributes to the growing body of evidence on paediatric palliative care, specifically that parents caring for a child with a life-limiting condition report high levels of distress and burden, low quality-of-life and need more emotional and practical support targeted at their unmet needs. Paediatric palliative care services should routinely assess parent mental health and provide appropriate support. [ABSTRACT FROM AUTHOR]
Copyright of Palliative Medicine is the property of Sage Publications Inc. 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: Describing the psychosocial profile and unmet support needs of parents caring for a child with a life-limiting condition: A cross-sectional study of caregiver-reported outcomes.
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  Data: &lt;searchLink fieldCode=&quot;JN&quot; term=&quot;%22Palliative+Medicine%22&quot;&gt;Palliative Medicine&lt;/searchLink&gt;. Mar2020, Vol. 34 Issue 3, p358-366. 9p. 4 Charts.
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  Data: Background: There is a lack of studies examining the prevalence and severity of psychosocial distress in parents caring for a child with life-limiting condition. More research is also needed to better understand the experience, support needs and quality-of-life of this population. Aim: To describe the experience and support needs of caring for children with life-limiting conditions and examine the level of distress and quality-of-life experienced by parents. Design: Cross-sectional, prospective, quantitative study guided by an advisory group. Participants completed a survey that included demographics and self-report outcome measures of unmet support needs, appraisal of caregiving, psychological distress and quality-of-life. Bivariate correlation analyses were performed to examine for associations between measures. Setting/participants: Parents currently caring for one or more children (⩽18 years) with a life-limiting condition and registered with a paediatric palliative care service (Australia). Results: In total, 143 parents (88% female) completed the questionnaire (36% RR). Compared with population norms, participants reported low quality-of-life, high carer burden and high psychological distress. Almost half (47%) of the sample met the criteria for one or more diagnoses of clinically elevated stress, anxiety or depression. There were significant associations between the psychosocial outcome variables; carer strain and depression had the strongest correlations with quality-of-life (r = –.63, p &lt;.001, for both). Participants also reported multiple unmet needs related to emotional and practical support. Conclusions: This study contributes to the growing body of evidence on paediatric palliative care, specifically that parents caring for a child with a life-limiting condition report high levels of distress and burden, low quality-of-life and need more emotional and practical support targeted at their unmet needs. Paediatric palliative care services should routinely assess parent mental health and provide appropriate support. [ABSTRACT FROM AUTHOR]
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  Data: &lt;i&gt;Copyright of Palliative Medicine is the property of Sage Publications Inc. and its content may not be copied or emailed to multiple sites without the copyright holder&#39;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.&lt;/i&gt; (Copyright applies to all Abstracts.)
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=pbh&AN=142247552
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1177/0269216319892825
    Languages:
      – Code: eng
        Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 9
        StartPage: 358
    Subjects:
      – SubjectFull: Anxiety
        Type: general
      – SubjectFull: Psychology of caregivers
        Type: general
      – SubjectFull: Mental depression
        Type: general
      – SubjectFull: Longitudinal method
        Type: general
      – SubjectFull: Medical needs assessment
        Type: general
      – SubjectFull: Health outcome assessment
        Type: general
      – SubjectFull: Palliative treatment
        Type: general
      – SubjectFull: Psychology of parents
        Type: general
      – SubjectFull: Quality of life
        Type: general
      – SubjectFull: Questionnaires
        Type: general
      – SubjectFull: Self-evaluation
        Type: general
      – SubjectFull: Statistics
        Type: general
      – SubjectFull: Psychological stress
        Type: general
      – SubjectFull: Terminally ill
        Type: general
      – SubjectFull: Quantitative research
        Type: general
      – SubjectFull: Social support
        Type: general
      – SubjectFull: Burden of care
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      – SubjectFull: Cross-sectional method
        Type: general
      – SubjectFull: Children
        Type: general
      – SubjectFull: Australia
        Type: general
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      – TitleFull: Describing the psychosocial profile and unmet support needs of parents caring for a child with a life-limiting condition: A cross-sectional study of caregiver-reported outcomes.
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            – D: 01
              M: 03
              Text: Mar2020
              Type: published
              Y: 2020
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