Introduction: Patients with life-threatening diseases have reportedly end-of-life experiences that are perceived positively. Loved ones and healthcare personnel may mistakenly interpret the phenomena as confusion and patients can be reluctant to talk about it due to fear of ridicule. Studies addressing patients directly are scarce and there is a lack of studies from highly secular countries. The aim was to establish whether end-of-life experiences are present among patients, oriented in time, place and person and receiving palliative end-of-life care in one of the world's most secular countries. If present, examine the content and patients’ subjective experiences. Design: Qualitative design with semi-structured, in-depth interviews. 25 participants, receiving end-of-life palliative care at home or in a hospice inpatient unit. Results: Patients were interviewed on 1-3 consecutive occasions. 16/25 patients reported end-of-life experiences of which the majority were perceived to be positive. Four themes were identified: vivid dreams while asleep, experiences while awake, references to medical circumstances and communication about end-of-life experiences. Prevalent content was deceased and living loved ones and journeys. Some patients distinguished between hallucinations/nightmares and end-of-life experiences. Conclusions: End-of-life experiences are present among oriented patients in a highly secular country and can have a profound positive impact, which warrants clinical attention. Education for healthcare personnel about end-of-life experiences is needed in order to support patients and loved ones and not mistakenly medicalize. Further directions for research could be to study the experiences of the phenomenon among health care personnel in the same context, which could strengthen the present findings.
Objectives: Chronic diseases have an impact on and change patient’s lives which means that they need to find ways to cope with the new situation. The aim was to describe how the chronic disease has influenced patients’ views of their life situation. Methods: The study was quantitative in design with data collected using a semi-structured questionnaire. Descriptive statistics were used to compare similarities and differences between patients with asthma-allergy, diabetes mellitus, cancer and inflammatory rheumatoid arthritis. Results: Changes in their life were experienced as a negative outcome for the majority of participants. Support can be in the form of interpersonal support from various persons, but also from activities and beliefs/religion. Family and friends as well as healthcare professionals were identified as being most supportive. Sadness and worry were the most common emotions among the participants and their surrounding networks. Conclusion: People with a chronic disease have to live with the consequences the disease has for their life situation. They need to find strategies to cope with the negative outcome in their new life. Support from their own network and healthcare professionals can be helpful in the new life situation.
Background Timely identification of patients with palliative care needs is a prerequisite for being able to carry out effective and equal palliative care. The Supportive and Palliative Care Indicators Tool (SPICT) identifies patients likely to benefit from a palliative approach. Aim The main objective was to describe the translation, cross‐cultural adaptation and content validation process of the SPICT‐SE. In this process, the prefinal SPICT‐SE was tested in focus group interviews to explore how the tool was perceived and interpreted by healthcare professionals in a Swedish healthcare context. Methods In this qualitative descriptive study, the translation, cross‐cultural adaptation and content validation process of the SPICT‐SE was based on a recommended method for cross‐cultural adaptation of self‐report measures. The process included two independent forward translations, a synthesis, and one independent back‐translation. An expert committee consolidated all the versions and developed the prefinal version of the SPICT‐SE. The prefinal version of the SPICT‐SE was tested in four focus group interviews with physicians and nurses engaged in inpatient or outpatient care in south‐west Sweden. A thematic analysis of the transcribed interviews was performed. The SPICT‐SE was then revised to the final version. Results In the thematic analysis, four themes were constructed that together described how the SPICT‐SE was perceived and interpreted by healthcare professionals: The mindset is familiar and relevant; the tool needs to be adjusted in order to be clearer; the purpose and consequences of the tool are ambiguous; and the tool supports a palliative approach. Conclusion The SPICT‐SE has now been successfully translated, culturally adapted and content validated in a Swedish healthcare context.
Background: Chronic diseases have an impact on and can change the lives of the persons affected by them. This study examines how a disease can influence patients’ daily lives, the strategies they adopt to cope, and their experiences of support. The study focuses on four chronic diseases: asthma-allergy, cancer, diabetes mellitus, and inflammatory rheumatic arthritis. Methods: The study has a qualitative design and includes 41 transcribed in-depth interviews and a content analysis. Results: The participants’ new life situation was changed for a very long time or forever, and this was not a voluntary choice. The new life situation comprised the following themes: life-changing—the disease could be a turning point in a negative or positive way, strategies—designed to create ways of coping with daily tasks to find a good quality of life, and support—that could be obtained from the participants’ private network or the healthcare professionals. Conclusions: The patients had to make changes in their daily life, and these could bring about different feelings and restrict activity. Healthcare professionals need more knowledge of the process of coping with such life-changing matters and what could strengthen patients and give a sense of empowerment in their lives.
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