Carina Lundh Hagelin

The psychometric properties of the Swedish Multidimensional Fatigue Inventory MFI-20 in four different populations

The Multidimensional Fatigue Inventory (MFI-20) scale is widely used for measuring fatigue in cancer care. This questionnaire has been translated into Swedish and used in Swedish cancer populations, and the aim of this study was to test the validity and reliability of the Swedish version in four populations, with a total of 584 patients. The participants were classified into four groups: palliative cancer patients, cancer patients receiving radiation therapy, non-cancer outpatients, and a group of hospital staff. The MFI-20 consists of five subscales of fatigue: General Fatigue (GF), Physical Fatigue (PF), Reduced Motivation (RM), Reduced Activity (RA) and Mental Fatigue (MF). We have tested the convergent validity of the MFI-20 using the Category Ratio instrument (CR-10). The validity and the reliability of MFI-20 were acceptable. All subscales of the MFI-20 were correlated, and all were also correlated with the CR-10 score (p ≤0.001). General Fatigue was highly correlated with Physical Fatigue for the three patient groups, but this was not the fact for healthy staff. Deleting some items increased Cronbachs α of the subscale to which these items belonged (where α measures the reliability of the results). The level of non-response was low (less than 1.2%) and there was no pattern to the items omitted. We conclude that the MFI-20 is a valid and reliable instrument for measuring fatigue in patients and in healthy individuals. The results support, to some extent, earlier findings and one item can be removed from the Swedish version of the MFI-20.

Four Essential Drugs Needed for Quality Care of the Dying: A Delphi-Study Based International Expert Consensus Opinion

PURPOSE The majority of dying patients do not have access to necessary drugs to alleviate their most common symptoms, despite evidence of drug efficacy. Our aim was to explore the degree of consensus about appropriate pharmacological treatment for common symptoms in the last days of life for patients with cancer, among physicians working in specialist palliative care. MATERIAL AND METHODS Within OPCARE9, a European Union seventh framework project aiming to optimize end-of-life cancer care, we conducted a Delphi survey among 135 palliative care clinicians in nine countries. Physicians were initially asked about first and second choice of drugs to alleviate anxiety, dyspnea, nausea and vomiting, pain, respiratory tract secretions (RTS), as well as terminal restlessness. RESULTS Based on a list of 35 drugs mentioned at least twice in the first round (n=93), a second Delphi round was performed to determine ≤ 5 essential drugs for symptom alleviation in the last 48 hours of life that should be available even outside specialist palliative care. There was ≥ 80% consensus among the participants (n=90) regarding morphine, midazolam, and haloperidol as essential drugs. For RTS, there was consensus about use of an antimuscarinic drug, with 9%-27% of the physicians each choosing one of four different drugs. CONCLUSION Based on this consensus opinion and other literature, we suggest four drugs that should be made available in all settings caring for dying patients with cancer, to decrease the gap between knowledge and practice: morphine (i.e., an opioid), midazolam (a benzodiazepine), haloperidol (a neuroleptic), and an antimuscarinic.

Complexity in Non-Pharmacological Caregiving Activities at the End of Life: An International Qualitative Study

In a qualitative study reported by Olav Lindqvist and colleagues, the range of nonpharmacological caregiving activities used in the last days of a patients life are described.

Quality indicators for care of cancer patients in their last days of life: literature update and experts' evaluation.

BACKGROUND Quality indicators (QIs) are needed to monitor and to improve palliative care. Care of patients in the last days of life is a discrete phase of palliative care and therefore specific QIs are needed. This study aimed to identify and evaluate current QIs against which to measure future care of patients in the last days of life. METHODS To identify QIs for patients in the last days of life an update of the literature and national guidelines was conducted. Subsequently, an international panel of palliative care experts was asked to evaluate the identified QIs: how well they describe care and how applicable they are for care in the last days of life. Also additional QIs were asked. RESULTS In total, 34 QIs for care in the last days were identified in the literature and guidelines. The experts (response rate 58%) agreed with seven QIs as being good descriptors and applicable: concerning a home visit for the family following a patients death, the presence of a dedicated family room, limited patients receiving chemotherapy, limited need for pain control, gastrointestinal symptoms, and communication from professional to patient and family. The experts also suggested 18 additional topics for QIs for the last days of life. CONCLUSION Currently no definite set of QIs exist to describe quality of care of patients in their last days of life. New QIs that are focused on care for patients in their last days of life, their relatives, as well as their professional caregivers are needed.

Team Interactions in Specialized Palliative Care Teams: A Qualitative Study

BACKGROUND Teamwork is a standard of care in palliative care and that is emphasized by leading organizations. When interdisciplinary teams communicate their varied assessments, outcomes may be more than additive due to the synthesis of information. Interprofessionality does not guarantee multidimensionality in health care interventions, however, and that interprofessional teams promote collaboration may be questioned. AIM The aim was to explore team interaction among team members in specialized palliative care teams. DESIGN Semistructured interviews were conducted with health professionals working in specialized palliative home care teams. The interviews were analyzed by content analysis. SETTING/PARTICIPANTS Participants were recruited from specialized palliative care units in Sweden. The 15 interviewees included 4 men and 11 women. Physcians, nurses, paramedical staff, and social workers were included. RESULTS Organizational issues like resources and leadership have a great impact on delivery of care. Competence was mirrored in education, collaboration, approach, and support within the team; while communication was described as key to being a team, resolving conflict, and executing palliative care. CONCLUSION Communication and communication patterns within the team create the feeling of being a team. Team climate and team performance are significantly impacted by knowledge and trust of competence in colleagues, with other professions, and by the available leadership. Proportions of different health professionals in the team have an impact on the focus and delivery of care. Interprofessional education giving clarity on ones own professional role and knowledge of other professions would most likely benefit patients and family caregivers.

Patterns of fatigue related to advanced disease and radiotherapy in patients with cancer—a comparative cross-sectional study of fatigue intensity and characteristics

Goals of workThis cross-sectional comparative study was designed to explore and describe the prevalence and patterns of cancer-related fatigue in patients with advanced cancer as well as patients undergoing curative radiotherapy. Another aim was to explore the association of anxiety and depression with fatigue.Materials and methodsPatients with an advanced stage of disease (n = 228) and patients receiving radiotherapy (n = 81) completed the Borg Category Ratio Scale, the Multidimensional Fatigue Inventory and the Hospital Anxiety and Depression Scale.Main resultsPatients with advanced disease had an increased probability of experiencing all aspects of fatigue except for mental fatigue as compared to patients undergoing radiation, e.g., odds ratio 11.5 (CI 5.8–22.7) for physical fatigue. Higher scores for depression than for anxiety were reported when patients had high levels of fatigue, with 23% of the patients classified as anxious and 39% depressed.ConclusionsThe present study was carried out in order to address a gap in research by comparing the multidimensional aspects of fatigue in different groups of cancer patients. It is the intensity of fatigue that seems to be related to the underlying exposure to radiation or to the level of disease burden rather than the different fatigue profiles, such as the relation between physical and mental aspects.

Thoughts on death and dying when living with haemodialysis approaching end of life

AIMS AND OBJECTIVES To describe inner thoughts and feelings relating to death and dying when living with haemodialysis approaching end of life. BACKGROUND Patients who undergo maintenance haemodialysis suffer a significant symptom burden and an impaired quality of life. The high mortality rate in these patients indicates that about one-fourth of them are in their last year of life, suggesting the presence of death and dying in the haemodialysis unit. DESIGN A qualitative descriptive design was used. Methods.  A total of 31 qualitative interviews were conducted with eight patients (aged 66-87) over a period of 12 months. Qualitative content analysis was used to analyse data. RESULTS The analysis revealed 10 subthemes that were sorted into three main themes. Being aware that death may be near comprises being reminded of death and dying by the deteriorating body, by the worsening conditions and deaths of fellow patients, and by knowing haemodialysis treatment as a border to death. Adapting to approaching death comprises looking upon death as natural, preparing to face death, hoping for a quick death and repressing thoughts of death and dying. Being alone with existential thoughts comprises a wish to avoid burdening family, lack of communication with healthcare professionals and reflections on haemodialysis withdrawal as an hypothetic option. CONCLUSIONS Living with haemodialysis approaching, the end of life involves significant and complex existential issues and suffering, and patients are often alone with their existential thoughts. RELEVANCE TO CLINICAL PRACTICE Nurses and other healthcare professionals in haemodialysis settings need to combine technical and medical abilities with committed listening and communication skills and be open to talking about death and dying, with sensitivity to individual and changeable needs.

Nurses' experiences of clinical use of a quality of life instrument in palliative care.

This pilot study explored how nursing staff experienced clinical use of a quality of life (QoL) instrument as complement to their standard assessment interview. Twenty-six of 36 Registered Nurses working in one palliative care service responded in writing to six open questions.We found that nurses described positive features in using the QoL instrument related to how it supported their professional role, eased therapeutic contact with patients, and in terms of the outcomes of its use. Others noted difficulties incorporating the tool into the framework of their traditional nursing assessment, noting instrument and situation-specific limitations, with attitudes and comfort with the questionnaire affecting its use. Clinical use of QoL tools may be facilitated by emphasizing their role as a first screening assessment, and acknowledging and supporting the importance of clinical expertise and the patient-nurse relationship in further more focussed assessments and nursing care.

Translation and cultural adaptation of research instruments – guidelines and challenges: an example in FAMCARE-2 for use in Sweden

Background: Assessing and evaluating health care is important, and an abundance of instruments are developed in different languages. Translating existing, validated instruments is demanding and calls for adherence to protocol. Purpose: The purpose of this study was to translate and culturally adapt the FAMCARE-2 scale for use in Sweden. Methods: Traditional back-translation and the decentering stance were utilized and assessed. Experts in palliative care clinic and research were involved; the FAMCARE-2 instrument was discussed with family caregivers and content validity was assessed by experienced health professionals. Results: Significant discrepancies were not revealed by back-translation. Using the decentering stance gave reliable structure and opportunities for reflection throughout the translation process. Discussion: Translating an existing instrument into a second language requires interpretation and adaptation more than a naive translation. The back-translation process may be enhanced if the decentering stance is adopted.

Stepping out of the shadows of Alzheimer’s disease: a phenomenological hermeneutic study of older people with Alzheimer’s disease caring for a therapy dog

ABSTRACT Purpose: Living with Alzheimer’s disease (AD) can involve a person being unable to recall and convey information in daily life. There are several ways to provide person-centred care to older people with AD, e.g. by empowering them in a situation. The use of animal-assisted therapy (AAT) with a therapy dog in the care of people with dementia is increasing, with the presence of a therapy dog being described as improving, among other things, the well-being and socialization of the person. The aim of this study was to illuminate meanings of care for people with AD in their encounters with a therapy dog. Method: The study used video-recorded observations of the person with AD and the dog. Data were transcribed and analysed using a phenomenological hermeneutic method. Results: The main theme was “Using one’s own resources and abilities as a human being”, which meant being the person one can be and distancing oneself from the symptoms of AD during the time with the dog. Conclusions: The feelings evoked in the people with AD included empathy and altruism, which allowed for a sense of joy and tenderness, which may induce a sense of self-worth, of being needed, and of being meaningful.