Understanding Ethical Challenges and their Impact on Family Caregivers of Patients with Advanced Cancer

BackgroundFamily caregivers of patients with advanced illness at end of life often report high levels of emotional distress. To address this emotional distress is necessary to have adequate and reliable screening tools.AimThis study analyses the psychometric properties and clinical utility of the Family Caregiver Emotional Detection Scale for caregivers of patients with end-stage cancer (DME-C, Spanish acronym) who are receiving palliative care (PC).DesignMulticentre, cross-sectional study.Settings/participantsFamily caregivers of patients with advanced cancer at end of life receiving palliative treatment were interviewed to explore their emotional distress through the DME-C scale and other instruments measuring anxiety and depression (Hospital Anxiety and Depression Scale (HADS)), distress thermometer (DT) and overload (B), as well as a clinical psychological assessment (CPA).Results138 family caregivers, 85 (61.6%) female and 53 (38.4%) male, with an average age of 59.69±13.3 participated in the study. The reliability of the scale, as measured by Cronbach’s alpha, was 0.76, and its stability over time was 0.734. Positive, significant correlations were found between the DME-C and the scores for anxiety and depression registered on the HADS scale, as well as with the total result of this latter scale and the results for B, the DT and the CPA. A statistical analysis of the receiver-operating characteristic curves showed that the scale has a sensitivity and specificity of 75%, and that the cut-off point for the detection of emotional distress was a score ≥11. Fifty-four per cent of the caregivers displayed emotional distress according to this scale.ConclusionsThe DME-C displays good psychometric properties. It is simple, short, reliable and easy to administer. We believe that the instrument is useful for the detection of emotional distress in the family caregivers of hospitalised patients suffering from end-stage illnesses and receiving PC.

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An early palliative care telehealth coaching intervention to enhance advanced cancer family caregivers’ decision support skills: The CASCADE pilot factorial trial

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2021.07.023 ◽

2021 ◽

Author(s):

J. Nicholas Dionne-Odom ◽

Rachel D. Wells ◽

Kate Guastaferro ◽

Andres Azuero ◽

Bailey A. Hendricks ◽

...

Keyword(s):

Palliative Care ◽

Decision Support ◽

Family Caregivers ◽

Advanced Cancer ◽

Cancer Family ◽

Early Palliative Care ◽

Coaching Intervention ◽

Factorial Trial ◽

Support Skills

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When chemotherapy fails: Emotionally charged experiences faced by family caregivers of patients with advanced cancer

Patient Education and Counseling ◽

10.1016/j.pec.2018.12.014 ◽

2019 ◽

Vol 102 (5) ◽

pp. 909-915 ◽

Cited By ~ 4

Author(s):

Rachel A. Rodenbach ◽

Sally A. Norton ◽

Marsha N. Wittink ◽

Supriya Mohile ◽

Holly G. Prigerson ◽

...

Keyword(s):

Family Caregivers ◽

Advanced Cancer

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Is early integration of palliative home care in oncology treatment feasible and acceptable for advanced cancer patients and their health care providers? A phase 2 mixed-methods study.

10.21203/rs.3.rs-18452/v2 ◽

2020 ◽

Author(s):

Naomi Dhollander ◽

Tinne Smets ◽

Aline De Vleminck ◽

Lore Lapeire ◽

Koen Pardon ◽

...

Keyword(s):

Home Care ◽

Cancer Patients ◽

Family Caregivers ◽

Advanced Cancer ◽

Health Care Providers ◽

Control Group ◽

Care Providers ◽

Advanced Cancer Patients ◽

Palliative Home Care ◽

Early Integration

Abstract Background: To support the early integration of palliative home care (PHC) in cancer treatment, we developed the EPHECT intervention and pilot tested it with 30 advanced cancer patients in Belgium using a pre post design with no control group. We aim to determine the feasibility, acceptability and perceived effectiveness of the EPHECT intervention.Methods: Interviews with patients (n=16 of which 11 dyadic with family caregivers), oncologists and GPs (n=11) and a focus group with the PHC team. We further analyzed the study materials and logbooks of the PHC team (n=8). Preliminary effectiveness was assessed with questionnaires EORTC QLQ C-30, HADS and FAMCARE and were filled in at baseline and 12, 18 and 24 weeks.Results: In the interviews after the intervention period, patients reported feelings of safety and control and an optimized quality of life. The PHC team could focus on more than symptom management because they were introduced earlier in the trajectory of the patient. Telephone-based contact appeared to be insufficient to support interprofessional collaboration. Furthermore, some family caregivers reported that the nurse of the PHC team was focused little on them.Conclusion: Nurses of PHC teams are able to deliver early palliative care to advanced cancer patients. However, more attention needs to be given to family caregivers as caregiver and client. Furthermore, the home visits by the PHC team have to be further evaluated and adapted. Lastly, professionals have to find a more efficient way to discuss future care.

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