The responsibility to quench thirst by providing drinks when a relative is dying spouses' experience in specialist palliative home care.

BACKGROUND: Thirst and dry mouth are common symptoms in terminally ill patients. It is known that family members usually request drips for their dying relative. Few studies have focused on thirst in terminally ill patients and their spouses' experience of this, leading to a knowledge gap in this area. AIM: The aim of this study was to explore spouses' experiences of observing and managing thirst in a dying relative admitted to specialist palliative home care. METHODS: A qualitative interview study with an inductive approach was conducted. Eighteen spouses caring for their husband or wife admitted to specialist palliative home care in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. RESULTS: Three main themes emerged regarding spouses' experiences of patients' thirst: Knowledge and views of thirst; Control of fluid intake provides vital information; and Taking charge of their drinking is a life and death responsibility. CONCLUSIONS: Spouses experience a responsibility to serve the dying person with fluids so that they will not get thirsty. It is so obvious and commonplace to them. To be able to fulfil this responsibility, they need to keep track of the patient's fluid intake and know what quenches thirst. There is a need for research in this area to assist carers and patients in identifying which drinks best quench the patient's thirst. Interventions are also needed to help provide/make available knowledge on suitable thirst-quenching drinks.

Ethical challenges around thirst in end-of-life care -experiences of palliative care physicians.

BACKGROUND: Thirst and dry mouth are common symptoms in terminally ill patients. In their day-to-day practice, palliative care physicians regularly encounter ethical dilemmas, especially regarding artificial hydration. Few studies have focused on thirst and the ethical dilemmas palliative care physicians encounter in relation to this, leading to a knowledge gap in this area. AIM: The aim of this study was to explore palliative care physicians' experiences of ethical challenges in relation to thirst in terminally ill patients. METHODS: A qualitative interview study with an inductive approach was conducted. Sixteen physicians working in four different specialised palliative care units and one geriatric care unit in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. RESULTS: When presented with an ethical challenge relating to thirst, physicians attempted to balance benefits and harms while emphasizing respect for the patient's autonomy. The ethical challenges in this study were: Starting, continuing or discontinuing drips; lack of evidence and traditions create doubt; and lack of interest and time may result in patient suffering. CONCLUSIONS: All physicians in this study reported that "Starting, continuing or discontinuing drips" was the main ethical challenge they encountered, where some were so accustomed to the decision that they had a standard answer ready to offer patients and families. Physicians reported that drips were a symbol of thirst quenching, life and survival but were not necessary in end-of-life care. Others questioned the traditions regarding thirst and emphasised drips in particular.

Managing Fatigue: Experiences From a 6-week Course for Adults With Cerebral Palsy.

Objective: To explore experiences of a 6-week Fatigue Management course (FMC) in adults with cerebral palsy (CP). Design: A qualitative study using semi-structured interviews. The study process followed the Consolidated Criteria for Reporting Qualitative Research (COREQ). Setting: The study was conducted in southeastern Sweden in an out-patient setting. Participants: Adults (N=8) with CP who had participated in FMC. Interventions: Not applicable. Main Outcome Measure: Qualitative content analysis of the transcribed interviews led to identification of a main category, categories, and subcategories, describing the participants' experiences of FMC. Results: The analysis identified 2 categories: Awareness regarding fatigue, with the 2 subcategories: A better understanding, and The feeling of not being alone; and Perceive opportunities for changes, with the 3 subcategories: Understanding the need for changes, Demanding process, and Taking steps toward change. These categories were summed up in the main category describing the participants' experiences of FMC: A challenging and eye-opening course that gave deeper self-understanding and thoughts about making changes. Conclusions: Overall, the participants described positive experiences of FMC, with increased awareness regarding fatigue and insight regarding the possibilities for change. Nevertheless, there were challenges in coping with the extensive information and with the home assignments. This study gives promising results regarding the applicability of FMC for adults with CP. However, there is a need for course modifications with more targeted and differentiated content that is manageable and does not overload the participants. The modifications should include extended time, the addition of individual support, and follow-up between sessions, to increase participants' opportunities to implement new strategies and initiate behavioral change.

How Hospital Patients Experience Pain the Previous 24 Hours-A Prevalence Assessment of Pain in Five Hospitals in Sweden.

BACKGROUND: Previous studies show that pain is common among hospital inpatients. AIM: This study measures the prevalence of pain and the impact of pain on sleep in patients admitted to five hospitals in Sweden. METHODS: The patients were admitted to a surgical or a medical ward. They answered on a self-reported questionnaire about their average pain intensity and how much their pain interfered with their sleep the previous 24 hours, on a 010 numerical rating scale (NRS). RESULTS: Of the 500 patients, 308 experienced pain (62%), (NRS ≥ 3) and 111 (22%) rated their pain as NRS ≥ 7. We found no difference between surgical and medical specialty regarding pain prevalence. The results suggest that roughly the same proportion of patients with pain also experienced poor sleep due to pain265 patients (53%) reported pain interference on sleep, NRS ≥ 3. CONCLUSIONS AND CLINICAL IMPLICATIONS: This study shows that there is still an unacceptable high pain prevalence in inpatients and that patients experience pain as negatively impacting their sleep. Future pain care is likely to include a more comprehensive implementation strategy for the dissemination of knowledge, especially related to the complex context of today's healthcare system. That is, the possibility that anchoring new knowledge also benefits the patient is probably associated with optimization of the structural context. Future research should take this question further by examining how the organizational structure should be optimized for the dissemination of knowledge in healthcare professionals about pain and pain interference with sleep.

Nurses' Advocacy of Clinical Pain Management in Hospitals: A Qualitative Study.

BACKGROUND AND AIMS: In hospitals, efficient pain care given by nurses is warrented because pain prevalence in the previous 24 hours has been reported to be high. This study aims to clarify nurse's experiences with pain management as a specific responsibility added to their regular clinical duties. In addition, this study aims to elucidate these nurses' attitudes about sharing their pain knowledge with their colleagues. DESIGN, PARTICIPANTS AND METHODS: This study includes semi-structured interviews of 17 registered staff nurses at the University Hospital, Linköping Sweden. The interviews were analyzed using a qualitative content analysis. RESULTS: A main thematic category emerged: Selected nurses experience shortcomings and obstacles in clinical pain management and are willing to improve their knowledge and share it with their colleagues. This main category was based on the following four sub-categories: a valued but unclear assignment; the presence of facilitators and obstacles; in need of support and collaboration; and a deficit of own knowledge and future teaching of colleagues. CONCLUSIONS: Overall, the nurses maintained a constructive attitude about their responsibilities to teach colleagues about pain management in spite the difficulties they experienced fulfilling all their responsibilities. Nurses who have the added responsibility to teach their colleagues pain management need specialized education in pain management and pedagogic skills for teaching clinical pain management. Moreover, these nurses need to be given the time, support, and collaborative opportunities to develop their knowledge. A nursing model that provides nurses trained in pain management education should be developed and evaluated.