WE’RE DELIGHTED TO PRESENT THIS MONTH’S ‘EDITOR’S CHOICE’ FROM PALLIATIVE MEDICINE, THE OFFICIAL RESEARCH JOURNAL OF THE EAPC
Each month, Professor Catherine Walshe, Editor-in-Chief of ‘Palliative Medicine’, chooses an article that readers may find particularly interesting or useful and invites the authors to draw out the key points on the EAPC blog. Focusing on research that is novel, a robust review, from a specific country or just slightly left of field, the ‘Editor’s Choice’ post aims to share experience and stimulate ideas. We hope you’ll read the longer article in ‘Palliative Medicine’ – EAPC members can access a FREE copy from the EAPC website.
David Russell, PhD, introduces the background to the longer article selected as ‘Editor’s Choice’ in the January 2022 issue of ‘Palliative Medicine’. David is a Research Scientist in the Center for Home Care Policy & Research at the Visiting Nurse Service of New York in New York, USA. He is also an Assistant Professor of Sociology at Appalachian State University in Boone, North Carolina, USA.
David Russell.
Urinary incontinence is the involuntary loss of urine. It is a common but understudied condition that affects end-of-life care.1 This is especially true within the growing home hospice setting, where patients and their families receive visits from nurses and other staff to maximise their comfort, assist with care planning, and provide bereavement support. Urinary incontinence can create special challenges for nurses who are providing home hospice care, including wounds, pain, discomfort, and psychological distress.2
There has been limited research on the management of urinary incontinence in home hospice. This gap led our team of physicians, nurses, and social scientists to explore how home hospice nurses manage the psychosocial care of patients and families, including their dignity, autonomy, and mental health.
We studied this topic by conducting in-depth interviews with 32 nurses at a large not-for-profit home hospice agency in New York City. We asked these nurses about how urinary incontinence affects patients and families, what types of things make it easier or harder to manage, and how they help patients cope with the condition. We listened and read through the interviews to find common themes. There were three key findings from our research.3
First, nurses made it very clear that urinary incontinence can lead to a number of psychosocial issues for patients and families. These issues include pain, discomfort, and negative emotions like shame and embarrassment. One nurse shared:
“In the early stage [of] incontinence, [patients] are afraid to talk about it because they feel embarrassed. It’s hard for them to bring up this topic.”
Urinary incontinence also impacts family members by increasing caregiving tasks, such as helping their loved one with toileting, turning, wiping, cleaning, and changing diapers.
Second, respecting the dignity of patients was very important to the nurses we interviewed. They viewed urinary incontinence as a potential threat to patient dignity. Incontinence signalled a loss of independence and often changed how patients viewed themselves. One nurse described how they saw urinary incontinence impacting patient dignity:
“Their dignity is involved. . .They feel vulnerable and see it as . . . ‘I’m changing. I’m not the same person.’”
Third, nurses encourage coping mechanisms towards urinary incontinence among their patients by expressing to them that they are not alone and that others experience similar symptoms (i.e. normalisation), discussing urinary incontinence as part of a disease process (i.e. reframing), and helping them to understand what is going to happen next (i.e. anticipatory guidance). Nurses also felt it was important to provide validation by encouraging their patients to talk about incontinence and share their feelings.
Urinary incontinence presents a unique set of psychosocial challenges for home hospice nurses. Unfortunately, at the moment there are few evidence-based teaching resources available to help hospice agencies provide standardised training to nurses on the psychosocial aspects of caring for patients with urinary incontinence. We hope that this study spurs additional research and ultimately leads to psychosocial benefits for patients and their families.
References
- Chughtai B, Thomas D, Russell D, et al. Prevalence of and Risk Factors for Urinary Incontinence in Home Hospice Patients. Eur Urol 2019; 75: 268–271.
- Michelina D. Stoddard, David Russell, Margaret V. McDonald, Ritchell Dignam, Kathryn H. Bowles, Holly G. Prigerson, Bilal Chughtai. Nurse Perspectives on Urinary Incontinence in the Home Hospice Setting. J Pain Symptom Manage.
- Russell D, Stoddard MD, Morgan N, et al. Nurse perspectives on the psychosocial care of patients with urinary incontinence in home hospice: A qualitative study. Palliat Med 2021; 2692163211043378.
READ THE FULL ARTICLE IN ‘PALLIATIVE MEDICINE’
This post relates to the longer article, ‘Nurse perspectives on the psychosocial care of patients with urinary incontinence in home hospice: A qualitative study’ by David Russell, Michelina D Stoddard, Natalie Morgan, Margaret V McDonald, Ritchell Dignam, Kathryn H Bowles, Holly G Prigerson and Bilal Chughtai, published in Palliative Medicine, Volume 36, issue: 1, pp.135-141. Article first published online: 3 September 2021. Issue published: January 2022. https://doi.org/10.1177/02692163211043378
Read earlier Palliative Medicine Editor’s Choice posts on the EAPC blog.
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