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Caregiver emotional distress: external open-behaviour signs
  1. Joaquín T Limonero1,
  2. Jorge Maté-Méndez1,2,
  3. Dolors Mateo3,
  4. María José Gómez-Romero1,4,
  5. Jesús González-Barboteo5,
  6. Ramon Cladellas1,
  7. Frank D Ferris6 and
  8. Xavier Gómez-Batiste7,8
  1. 1School of Psychology. Stress and Health Research Group, Universitat Autonoma de Barcelona Facultat de Psicologia, Bellaterra, Spain
  2. 2Psycho-oncology Care Unit, Institut Catala d' Oncologia, L'Hospitalet de Llobregat, Spain
  3. 3Palliative Care Unit, Consorci Sanitari de Terrassa, Terrassa, Spain
  4. 4Psychology Unit, Egarsat, Mutua Colaboradora con la Seguridad Social nº 276, Terrassa, Spain
  5. 5Palliative Care Unit, Institut Catala d' Oncologia, L'Hospitalet de Llobregat, Spain
  6. 6Palliative Medicine, Research & Education, OhioHealth, Columbus, Ohio, USA
  7. 7The 'Qualy' Observatory. WHO Collaborating Centre for Public Health Palliative Care Programmes, Institut Catala d' Oncologia, L'Hospitalet de Llobregat, Spain
  8. 8Chair of Palliative Care, University of Vic, Vic, Spain
  1. Correspondence to Joaquín T Limonero, School of Psychology. Stress and Health Research Group, Universitat Autonoma de Barcelona Facultat de Psicologia, Bellaterra, Spain; joaquin.limonero{at}


Objectives To determine whether specific external signs of emotional distress (ESED) can be an indirect measure of emotional distress in caregivers.

Methods A cross-sectional multicentre design was used. 148 primary caregivers of advanced cancer patients attended in four Spanish palliative care units participated in this study. The emotional distress of caregivers was measured using both the Emotional Distress of Caregivers Scale and a psychological interview. Health professionals collected data using a standard clinical interview process after a brief training period.

Results More than half the caregivers (60%) presented with emotional distress. A positive correlation (r=0.566) was found between the intensity of ESED and emotional distress per se. Caregivers who presented emotional distress showed more ESED than those that did not (p<0.01). The study found significant differences for the categories ‘visible signs of sadness, fear, crying, feeling overwhelmed’ (p<0.001), ‘difficulty in separating from the patient: family refuses to let the patient make decisions and insists on care’ (p<0.001) and ‘visible signs of anger, irritability or frequent disagreement with therapeutic measures’ (p<0.001). No significant differences were found with respect to gender. The set of items to measure these external signs presented an adequate reliability assessed using Cronbach’s alpha (α=0.773).

Conclusions The assessment of ESED in caregivers could serve as a useful method to assess their emotional distress. Incorporating the systematic assessment of these external signs as part of the assessment of the emotional distress of primary caregivers could improve the overall assessment and treatment provided to these caregivers.

  • emotional distress
  • palliative care
  • behaviour observation
  • advanced cancerpatients
  • caregiver-reported outcome measures
  • clinical assessment
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  • Contributors JTL, JM, DM and MJGM designed the study. JM, DM, JGM, MJGM and BT collected data. JTL, JM and RC analysed data. JTL, JM, XGB and FDF interpreted results. JTL, JM and JGB wrote the manuscript. All authors reviewed the manuscript.

  • Funding This study was supported in part by grants Numbers PSI2013-43555-R and PSI2017-85134-R from the Spanish Ministry of Economy, Industry and Competitiveness (MINECO).

  • Competing interests None declared.

  • Ethics approval The research protocol was approved by each of the ethics and clinical research committees of the participating health centres (Consorci Sanitari del Parc Taulí, CSPT ref. 2014535; Consorci Sanitari de Terrassa CSdT ref. 29042014; Hospital Universitari San Joan de DeuHUSJR ref. 140327/3pro3; Fundació Hospital Residencia San Camil FHRSC ref. 14/23) and by the Ethics Committee of Animal and Human Research of the Universitat Autònoma de Barcelona.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement All data relevant to the study are included in the article or uploaded as supplementary information.

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