Susann Strang

Well‐being in patients with amyotrophic lateral sclerosis and their next of kin over time

Olsson AG, Markhede I, Strang S, Persson LI. Well‐being in patients with amyotrophic lateral sclerosis and their next of kin over time. 
Acta Neurol Scand: 2010: 121: 244–250.
© 2009 The Authors Journal compilation

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.

Factors that facilitate and hinder the manageability of living with amyotrophic lateral sclerosis in both patients and next of kin

AIM AND OBJECTIVES This study aims to illuminate factors that facilitate and hinder the manageability of living with amyotrophic lateral sclerosis in patients and next of kin. Fourteen patients and 13 next of kin were interviewed. BACKGROUND The whole family becomes affected when a person gets the disease. Therefore, it is important to identify strategies for managing the life situation among both patients and their next of kin. DESIGN A qualitative descriptive study. METHOD This study based on individual interviews was performed in spring 2007. The interviews were subjected to qualitative content analysis. RESULTS The results indicate constant fluctuation between opportunities and limitations in individual ability - of patients and family members - to manage the life situation. Both patients and next of kin devised strategies to manage their situations through acceptance, living in the present and perceiving real presence and support from family, friends and authorities. Dysfunctional relationships with family members, friends, or authorities reduced the manageability of the situation. Furthermore, patients experienced difficulties managing their situations when forced into passivity and increased dependence. Next of kin experienced decreased ability to manage because of burden, lack of own time and feelings of being controlled. CONCLUSION The fluctuations in manageability and the similarities and differences between the pairs, indicate the importance of support, both for the individual and the family. RELEVANCE TO CLINICAL PRACTICE Fluctuations in manageability and similarities and differences between approaches to managing the situation suggest a need for input from caregivers, for the whole family. Family members need support and time for their own needs and also the opportunity to increase their awareness and understanding of the needs of other family members. This study may give health personnel insight into how to help families devise strategies to manage a complex life situation.

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.

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.

Management of COPD, equal treatment across age, gender, and social situation? A register study.

Chronic obstructive pulmonary disease (COPD) is a progressive chronic disease where treatment decisions should be based on disease severity and also should be equally distributed across age, gender, and social situation. The aim of this study was to determine to what extent patients with COPD are offered evidence-based interventions and how the interventions are distributed across demographic and clinical factors in the sample. Baseline registrations of demographic, disease-related, and management-related variables of 7,810 patients in the Swedish National Airway Register are presented. One-third of the patients were current smokers. Patient-reported dyspnea and health-related quality of life were more deteriorated in elderly patients and patients living alone. Only 34% of currently smoking patients participated in the smoking cessation programs, and 22% of all patients were enrolled in any patient education program, with women taking part in them more than men. Less than 20% of the patients had any contact with physiotherapists or dieticians, with women having more contact than men. Men had more comorbidities than women, except for depression and osteoporosis. Women were more often given pharmacological treatments. With increasing severity of dyspnea, participation in patient education programs was more common. Dietician contact was more common in those with lower body mass index and more severe COPD stage. Both dietician contact and physiotherapist contact increased with deteriorated health-related quality of life, dyspnea, and increased exacerbation frequency. The present study showed that COPD management is mostly equally distributed across demographic characteristics. Only a minority of the patients in the present study had interdisciplinary team contacts. Thus, this data shows that the practical implementation of structured guidelines for treatment of COPD varies, to some extent, with regard to age and gender. Also, disease characteristics influence guideline implementation for each individual patient. Quality registers have the strength to follow-up on compliance with guidelines and show whether an intervention needs to be adapted prior to implementation in health care practice.

Is blogging a new form of communication in palliative health care? A qualitative research study

AIM To illuminate experiences of living with life-threatening diseases as described in blogs and the experience of blogging about these matters. METHODS A secondary analysis of 21 blogs was performed. RESULTS It was difficult for bloggers to accept what they perceived to be the unacceptable aspects of having an life-threatening disease. They searched for hope and acceptance, and tried to manage their life. They felt strengthened by supportive encounters with health professionals, relatives, friends, and from their blogging. However, they also felt that they were set aside in relation to both health professionals and relatives. CONCLUSION These patients appreciated being able to express their feelings and received support from their readers. Even if patient blogs can be used in health care, research and education, there is a lack of research studies that have examined the benefits of using blogging for any of these purposes.

Diabetes in the shadow of daily life: factors that make diabetes a marginal problem

The primary aim of this qualitative study, which was based on interviews with 24 patients with diabetes mellitus, was to identify factors that influence patients’ willingness and ability to adhere to prescribed medicines, to recommend lifestyle choices and to acquire a deeper understanding of the way these factors influence adherence. The starting point for the study was our belief that it may be of pivotal importance for health professionals to address patients’ life experiences, present life situations and cultural background, as well as their conceptions and attitudes, in order to understand why some patients have or may encounter difficulty in following treatment recommendations and realising treatment goals.