Ingela Henoch

Existential concerns among patients with cancer and interventions to meet them: an integrative literature review.

Objectives: An integrative literature review was undertaken to explore existential concerns among patients with cancer with respect to components, related concepts and targets of interventions.

The Swedish version of the Frommelt attitude toward care of the dying scale: Aspects of validity and factors influencing nurses' and nursing students' attitudes

Background: Nurses’ attitudes toward caring for dying persons need to be explored. The Frommelt Attitude Toward Care of the Dying (FATCOD) scale has not previously been used in Swedish language. Objectives: The objectives of this study were to compare FATCOD scores among Swedish nurses and nursing students with those from other languages, to explore the existence of 2 subscales, and to evaluate influences of experiences on attitudes toward care of dying patients. Methods: A descriptive, cross-sectional, and predictive design was used. The FATCOD scores of Swedish nurses from hospice, oncology, surgery clinics, and palliative home care and nursing students were compared with published scores from the United States, Israel, and Japan. Descriptive statistics, t tests, and factor and regression analyses were used. Results: The sample consisted of 213 persons: 71 registered nurses, 42 enrolled nurses, and 100 nursing students. Swedish FATCOD mean scores did not differ from published means from the United States and Israel, but were significantly more positive than Japanese means. In line with Japanese studies, factor analyses yielded a 2-factor solution. Total FATCOD and subscales had low Cronbach &agr;’s. Hospice and palliative team nurses were more positive than oncology and surgery nurses to care for dying patients. Conclusions: Although our results suggest that the Swedish FATCOD may comprise 2 distinct scales, the total scale may be the most adequate and applicable for use in Sweden. Professional experience was associated with nurses’ attitudes toward caring for dying patients. Implication for Practice: Care culture might influence nurses’ attitudes toward caring for dying patients; the benefits of education need to be explored.

The Assessment of Quality of life at the End of Life (AQEL) questionnaire: a brief but comprehensive instrument for use in patients with cancer in palliative care

PurposeThe aim of the study was to further validate the Assessment of Quality of life at the End of Life (AQEL) questionnaire, to explore whether conceptually consistent scales could be confirmed and how the instrument relates to other widely used and validated HRQL instruments.MethodsA total of 106 patients with lung cancer in palliative care completed the 20-item AQEL, the EORTC QLQ-C30, Hospital Anxiety and Depression Scale (HADS), Sense of Coherence (SOC-13) and Social Support Survey (SSS). Construct validity of the AQEL was tested by multitrait scaling, principal components analysis, inter-scale correlations and known-groups comparisons.ResultsFive scales were supported by multitrait scaling: Basic function, Activity, Emotional function, Cognitive function and Existential needs, with satisfactory (>.7) internal consistency for the latter three and intermediate (>.5) for the remaining two. A Social support scale was supported by principal components analysis, but exhibited a low internal consistency. Items on health care issues and physical symptoms worked best as individual items. Expected correlations with other instruments were found for all scales. Activity was sensitive to different levels of functioning as defined by performance status.ConclusionsThis study provided some evidence for the validity of the AQEL and its feasibility in patients with cancer in palliative care.

Experience of anxiety among patients with severe COPD: A qualitative, in-depth interview study

Objectives: Anxiety often arises in conjunction with dyspnoea in patients with severe COPD. Considering the provoking symptomatology and the high mortality rate for COPD, it is reasonable to believe that these conditions trigger death-related and existential anxiety. Although anxiety causes considerable distress and reduces quality of life, peoples experience of anxiety has been studied relatively little. The aim of this study was to explore severely ill COPD patients’ experience of anxiety and their strategies to alleviate anxiety. Methods: This qualitative, in-depth interview study explored perceptions of anxiety and the alleviation strategies that are adopted. Interviews were analyzed using a thematic content analysis approach, involving interpretive coding and identification of themes. People suffering from COPD (stage III or IV) were recruited from a pulmonary outpatient clinic in the west of Sweden. Purposive sampling was used, and thirty-one (31) patients were included. Results: Most of the patients had experienced anxiety associated with COPD. Analyses revealed three major themes, death anxiety, life anxiety, and counterweights to anxiety. Death anxiety included fear of suffocation, awareness of death, fear of dying and separation anxiety. Life anxiety included fear of living and fear of the future. Counterweights to anxiety concerned coping with suffocation, avoiding strategy, and a sense of joy that defied their vulnerable situation. Significance of results: The majority of patients experienced anxiety, which limited their lives. Although the patients experienced both life anxiety and death anxiety, they were able to cope with the situation and find a defiant joy to some extent.

Living in the presence of death: an integrative literature review of relatives' important existential concerns when caring for a severely ill family member.

Aim: The aim of this study was to explore relatives’ existential concerns when caring for a seriously ill family member as well as to describe interventions that meet these concerns. Methods: In this integrative literature review we assessed and classified 17 papers, 12 qualitative and 5 quantitative. Literature was sought in the databases Cinahl, PubMed, Psykinfo and Web of Science in September 2009 and in March 2010. Search terms used in different combinations were: family, family caregiver, next of kin, relatives, palliative, palliative care, end-of-life care, existential, spirit*. Data were redrawn from the papers results/findings, and synthesized into a new descriptive content. Results: The results were categorized from 13 papers exploring relatives’ important existential concerns and 4 papers describing interventions aimed to support them in the existential area. A majority of the reviewed papers had been written in Sweden and concerned relatives of patients with cancer. One overarching theme, living in the presence of death, and three categories: responses to life close to death; support when death is near; and beyond the presence of death were created. Conclusion: There is an urgent demand for large-scale studies using accurate methodology, as well as a need to design qualified investigations regarding the effects of various interventions, and to determine which interventions are the most effective in supporting relatives who experience existential distress manifested physically and/or psychologically. There is also a considerable demand for educational interventions among professionals in various healthcare settings to increase their knowledge regarding existential concerns among relatives.

Symptom Distress Profiles in Hospitalized Patients in Sweden: A Cross-Sectional Study

Symptom distress profiles of patients with a variety of diagnoses at two hospitals in Sweden were examined using a point-prevalence cross-sectional survey design. The sample included 710 patients present on internal medicine, surgery, geriatric, and oncology acute care hospital wards of each hospital on a single day. Symptom distress data were collected via structured interviews using a 0-10 numeric rating scale (NRS). Fatigue was the most prevalent symptom, experienced by 76.2% of the patients, followed by pain (65.2%) and sleeping difficulties (52.8%). Symptoms were fairly distressing (median NRS 5-6). Patients experiencing high distress from fatigue and pain were more likely to be female, living alone, and to have more symptoms. Latent class analysis revealed three symptom distress profiles that differed with respect to the degree of distress and number of symptoms. The profiles were not substantially differentiated by diagnoses. Symptom distress needs to be assessed and treated on an individual basis, rather than predicting distress levels based on diagnosis alone.

It's a balance between letting it influence life completely and not letting it influence life at all--a qualitative study of migraine prevention from patients' perspective.

Purpose: The aim of this study was to elucidate migraine prevention from a patient perspective. Method: Twenty-one participants who suffered from migraine were interviewed and the data analysed by means of qualitative content analysis. Results: The analysis revealed two categories; Avoiding migraine triggers and introducing migraine inhibiting strategies. In both categories, decisions were influenced by an appraisal of the advantages versus disadvantages, attitudes, support and knowledge. An overarching theme: “migraine prevention from the patients’ perspective is a balance between letting it influence life completely and not letting it influence life at all” was identified from the interviews. Conclusions: As migraine is a chronic disorder that cannot be cured, merely relieved, prevention is of great importance. The present study highlights migraine prevention from the patients’ perspective and the important issue of how much prevention is allowed to influence life. Either of the directions involves a risk that life can be controlled by migraine. Acceptance of the disease and allowing migraine prevention to influence life to some degree can be a way of regaining control. Implications for Rehabilitation Migraine prevention from the patients’ perspective is described as a balance between letting it influence life completely and not letting it influence life at all, which in either direction can lead to a life controlled by migraine. To take the patients’ perspectives of the illness in consideration as well as finding the most suitable treatment, based on an appraisal of individual advantages versus disadvantages is important to meet the need of the patient and to improve migraine prevention. Increased knowledge about migraine prevention is imperative both in health care and for the individual patient. Support during prevention is requested by patients.

Pain and pain management in hospitalized patients before and after an intervention

Abstract Background and aim Studies have shown that pain is common among hospitalized patients and that there is a lack of compliance with pain management guidelines. Improving pain management does not only involve developing new drugs or technology; even more important is an effective organisation that utilises existing expertise. The aim of this study was to investigate whether pain in hospitalized patients can be reduced by implementing evidence-based pain management guidelines, providing education for staff and an organisation that includes pain responsibility nurses. Methods A cross-sectional study was carried out between 2009 and 2010 at two hospitals in southwest Sweden, comprising a baseline survey followed by an intervention. The study involved 306 patients, who answered questions about pain intensity at rest and while moving, disturbed sleep due to pain and whether they had used a pain rating scale while in hospital. Medical records were scrutinised for analgesic prescriptions. An intervention then took place, involving implementation of evidence-based guidelines, staff education and the introduction of pain responsibility nurses. A follow-up survey was carried out in 2012, in which 293 patients answered the same questions and their medical records were also reviewed. The baseline results were then compared with those of the follow-up survey. Results When compared with the baseline survey, the follow-up survey revealed significant differences in the use of validated pain rating instruments as well as the prescription of more appropriate analgesics. Prescription of paracetamol increased significantly in the follow-up survey; 56% of the patients were prescribed paracetamol on a regular basis, compared with 42% at baseline. There was also a significant increase in the use of strong opioids, from 38% at baseline to 55% at follow-up. Prescriptions of weak opioids decreased from 16% at baseline to 4% at follow-up. No significant differences were observed in patient pain levels in the follow-up survey. At baseline, 29% of the patients reported moderate to severe pain at rest (NRS 4–10) and at follow-up that figure was 24% (NRS 4–10). In both surveys, 41% reported moderate to severe pain (NRS 5–10) during movement. Thirty-nine percent reported disturbed sleep at night at both baseline and follow-up. Conclusions This study demonstrates that evidence-based guidelines made accessible to all staff as a pocket size booklet and on the intranet, in combination with staff education, pain responsibility nurses who informed other staff on their own wards, improved the prescription of analgesics in the hospitals studied. In order to achieve a noticeable effect for patients, i.e., reduced pain levels, an intervention containing more components than those employed in the present study is required. Implications Nurses and physicians need greater knowledge about the importance of pain rating. A vital part of pain management at hospitals is continuous evaluation of treatment outcomes to prevent severe pain and disturbed sleep. The complexity of pain and pain management requires commitment, time and knowledge on the part of healthcare staff. Multi-professional pain teams that support ward staff in pain management are necessary in order to reduce suffering and unnecessary pain in hospitalized patients.

Differences in Symptom Distress Based on Gender and Palliative Care Designation Among Hospitalized Patients.

Purpose To explore patient-reported symptom distress in relation to documentation of symptoms and palliative care designation in hospital inpatients. Design This cross-sectional study analyzed data from 710 inpatients at two large hospitals in Sweden using the Edmonton Symptom Assessment Scale and the Memorial Symptom Assessment Scale. Chart reviews focused on nurses’ and physicians’ symptom documentation and palliative turning point. Methods Descriptive statistics were calculated for all variables and provided summaries about the sample. Patients were grouped according to gender, age, palliative care designation, and symptom documentation. The t test and chi-square test were used to calculate whether symptom distress varied between groups. A two-way analysis of variance was conducted for multiple comparisons to explore the impact of gender and age on mean symptom distress. Findings Females reported higher levels of symptom distress than did males related to pain, fatigue, and nausea. When comparing symptom distress between males and females with documentation pertaining to symptoms, there were significant differences implying that females had to report higher levels of symptom distress than males in order to have their symptoms documented. Conclusions Females need to report higher levels of symptom distress than do males for healthcare professionals to identify and document their symptoms. It can be hypothesized that females are not receiving the same attention and symptom alleviation as men. If so, this highlights a serious inequality in care that requires further exploration. Clinical Relevance Considering that common reasons why people seek health care are troublesome symptoms of illness, and that the clinical and demographic characteristics of inpatients are changing towards more advanced ages with serious illnesses, inadequate symptom assessment and management are a serious threat to the care quality.

Health-related quality of life in a nationwide cohort of patients with COPD related to other characteristics

Background In chronic obstructive pulmonary disease (COPD), various factors, such as dyspnoea, obstruction, exacerbations, smoking, exercise capacity, and body mass index, have been found to influence mortality and health-related quality of life (HRQOL). In order to identify subgroups of patients needing special attention, the aim of the present study was to explore the relationships between disease progression factors and HRQOL across COPD stages. Methods Baseline registrations from the Swedish COPD register of demographic, clinical, and patient-reported variables of 7,810 patients are presented. Dyspnoea was measured by the modified Medical Research Council (mMRC) dyspnoea scale and HRQOL by the Clinical COPD Questionnaire (CCQ). Results This study shows as expected that patients with spirometrically more severe COPD had a significantly higher number of exacerbations and hospitalisations, significantly increasing dyspnoea, significantly decreasing body mass index and exercise capacity, and significantly worsening HRQOL. When adjusting for spirometric stage of COPD, deteriorated HRQOL was predicted by increasing dyspnoea, depression/anxiety, increasing number of exacerbations, and decreased exercise capacity. Further, these data show that an mMRC value of 2 corresponds to a CCQ value of 1.9. Conclusion The COPD patients suffered from a significant symptom burden, influencing HRQOL. A surprisingly great proportion of patients in spirometric stages II–IV showed marked changes of CCQ, indicating a need for an improved collaboration between clinical pulmonary medicine and palliative care.