Lessons from the Literature

2019; Volume 20, No 9, September

Lessons from the Literature

Under My Microscope will return next month.


Media Watch: Family Caregiving

The growing recognition of the importance of family and loved ones as members of the palliative care team is mirrored by increased attention given to this issue in the literature. The articles below are selected by Barry R. Ashpole from his weekly report, Media Watch.

Words Matter: The language of family caregiving

Journal of the American Geriatric Society | Online – 23 May 2019 – One area that has received less attention than it deserves is the language used to describe family caregiving. To distinguish family caregivers from paid care providers, the term “informal caregiver” is commonly used. The authors argue that this term is a poor choice of words that disrespectfully frames the family caregiving role and has counterproductive consequences. The term originated in the 1980s when caregiving became a major topic for research. The term “informal” suggests “casual, unstructured, unofficial care – pleasant but not essential”; today’s caregivers would tell you they find this term invalidating and that there is absolutely nothing “informal” or unessential about the care they provide.

DOI: 10.1111/jgs.15988

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Silent Voices: Family caregivers’ narratives of involvement in palliative care

Nursing Open | Online – 10 August 2019 – Health authorities recommend that patients receiving palliative care (PC) should have the opportunity to spend more time at home at the end of their lives. This entails increased responsibility for family caregivers (FCGs). This study demonstrated that FCGs experience limited involvement in planning PC. Their voices seem to be silent and the involvement of FCGs is not in proportion to their responsibilities. Consequently, the needs of FCGs in the PC trajectory must be addressed to successfully provide home‐based care. FCGs’ involvement in PC should be a topic in nursing education and continuing education for nurses.

DOI: 10.1002/nop2.344

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Communicating Health Information at the End of Life: The caregivers’ perspectives

International Journal Environmental Research & Public Health, 2019; 16(14): 2469. Adequate information facilitates decision-making and reduces suffering by reducing uncertainty and enabling compliance with the wishes of the person at the end of life. In the initial phases of adaptation and coping, the patient and caregiver may develop an attitude called a “conspiracy or pact of silence,” avoiding talking or inquiring about the condition; this attitude seems to be very normal and repetitive. Caregivers feel the need to protect the patient’s emotions and might not talk about related issues or the real concerns of patients, strengthening the conspiracy of silence. Moreover, professionals tend to adjust to this process.

DOI: 10.3390/ijerph16142469

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Also of interest:

Media Watch, published by Barry R. Ashpole, a Canadian communications consultant and educator, monitors the literature and the lay press on issues specific to the quality of end-of-life care. It is international in scope and distribution. View current and back issues here.


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