1.
Lövgren, Malin, et al.
(författare)
Bereaved Siblings' Advice to Health Care Professionals Working With Children With Cancer and Their Families
2016
Ingår i: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 33:4, s. 297-305
Tidskriftsartikel (refereegranskat) abstract
Introduction: Siblings of children with cancer experience psychosocial distress during the illness and after bereavement, but often stand outside the spotlight of attention and care. This study explored bereaved siblings' advice to health care professionals (HCPs) working with children with cancer and their families. Materials and Methods: In a nationwide Swedish survey of bereaved siblings, 174/240 (73%) participated. Of these, 108 answered an open-ended question about what advice they would give to HCPs working with children with cancer and their families. In this study, responses to this single question were analyzed using content analysis. Results: The most common advice, suggested by 56% of siblings, related to their own support. One third suggested giving better medical information to siblings. Some siblings wanted to be more practically involved in their brother's/sister's care and suggested that HCPs should give parents guidance on how to involve siblings. Other common advice related to psychosocial aspects, such as the siblings' wish for HCPs to mediate hope, yet also realism, and the importance of asking the ill child about what care they wanted. Conclusion: Information, communication, and involvement should be emphasized by HCPs to support siblings' psychosocial needs in both the health care setting and within the family.
2.
Lövgren, Malin, et al.
(författare)
Clock time and embodied time experienced by patients with inoperable lung cancer
2010
Ingår i: Cancer Nursing. - Philadelphia : Lippincott Williams & Wilkins. - 0162-220X .- 1538-9804. ; 14, s. S45-S45
Tidskriftsartikel (refereegranskat) abstract
In this study, we explore how patients with inoperable lung cancer (LC) discuss their experiences of time, based on content analysis of open interviews with 35 patients 1 year after diagnosis, using Davies' distinction between "clock time" and "embodied time" as sensitizing concepts. Two interrelated themes were derived: (1) aspects related to the healthcare system, with 3 subthemes: waiting times in the healthcare system, limited time for patient-professional contact, and limited time for coordination of services, and (2) existential aspects, with subthemes: the future with LC and managing an uncertain and finite life with LC. Time could be experienced as problematic for these patients, when limited or lacking or through long periods of waiting, especially when these periods occurred without adequate preparation or information. This contributed to exacerbation of these patients' existing sense of uncertainty, their perception of care as impersonal and insecure, and their need to remain alert and act on their own behalf. Awareness of the seriousness of their disease and the prospect of a limited lifetime was described as increasing uncertainty about dying and fear of certain death. People also described efforts to constructively deal with their situation by reprioritizing their remaining time, having increased appreciation of some aspects of daily life, and living consciously in the present. This analysis suggests a collision between clock time, which steers the healthcare system, and embodied time, as experienced by individuals. Greater attention to psychosocial needs is suggested as one means of positively affecting patients' experiences of time and uncertainty.
3.
Lövgren, Malin, et al.
(författare)
Care at end of life influences grief : A nationwide long-term follow-up among young adults who lost a brother or sister to childhood cancer
2018
Ingår i: Journal of Palliative Medicine. - Larchmont, New York : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 21:2, s. 156-162
Tidskriftsartikel (refereegranskat) abstract
BACKGROUND: A majority of cancer-bereaved siblings report long-term unresolved grief, thus it is important to identify factors that may contribute to resolving their grief.OBJECTIVE: To identify modifiable or avoidable family and care-related factors associated with unresolved grief among siblings two to nine years post loss.DESIGN: This is a nationwide Swedish postal survey.MEASUREMENTS: Study-specific questions and the standardized instrument Hospital Anxiety and Depression Scale. Primary outcome was unresolved grief, and family and care-related factors were used as predictors.SETTING/PARTICIPANTS: Cancer-bereaved sibling (N = 174) who lost a brother/sister to childhood cancer during 2000-2007 in Sweden (participation rate 73%). Seventy-three were males and 101 females. The age of the siblings at time of loss was 12-25 years and at the time of the survey between 19 and 33 years.RESULTS: Several predictors for unresolved grief were identified: siblings' perception that it was not a peaceful death [odds ratio (OR): 9.86, 95% confidence interval (CI): 2.39-40.65], limited information given to siblings the last month of life (OR: 5.96, 95% CI: 1.87-13.68), information about the impending death communicated the day before it occurred (OR: 2.73, 95% CI: 1.02-7.33), siblings' avoidance of the doctors (OR: 3.22, 95% CI: 0.75-13.76), and lack of communication with family (OR: 2.86, 95% CI: 1.01-8.04) and people outside the family about death (OR: 5.07, 95% CI: 1.64-15.70). Depressive symptoms (OR: 1.27, 95% CI: 1.12-1.45) and time since loss (two to four years: OR: 10.36, 95% CI: 2.87-37.48 and five to seven years: OR: 8.36, 95% CI: 2.36-29.57) also predicted unresolved grief. Together, these predictors explained 54% of the variance of unresolved grief.CONCLUSION: Siblings' perception that it was not a peaceful death and poor communication with family, friends, and healthcare increased the risk for unresolved grief among the siblings.
4.
Lövgren, Malin, et al.
(författare)
Siblings' experiences of their brother's or sister's cancer death : a nationwide follow-up 2-9 years later
2016
Ingår i: Psycho-Oncology. - : Wiley. - 1057-9249 .- 1099-1611. ; 25:4, s. 435-440
Tidskriftsartikel (refereegranskat) abstract
ObjectiveThe aim of this study was to examine siblings' experiences of their brother's or sister's cancer death and if these experiences influenced levels of anxiety 2–9 years later.MethodsThis nationwide survey was conducted in Sweden in 2009. All siblings who had a brother/sister who was diagnosed with cancer before the age of 17 years and who died before the age of 25 years during 2000–2007 were invited. Of those, 174 siblings participated (participation rate: 73%). Mixed data from the survey about the siblings' experiences of death were included as well as data from the Hospital Anxiety and Depression Scale. To examine the experiences, descriptive statistics and content analysis were used. Mann–Whitney U-test was conducted to investigate if the experiences influenced anxiety 2–9 years later.ResultsThe siblings reported poor knowledge and experienced a lack of communication about their brother's/sister's death, for example, about the time frame, bodily changes near death, and about their own experiences. Siblings who reported that no one talked with them about what to expect when their brother/sister was going to die reported higher levels of anxiety 2–9 years after the loss. Seventy percent reported that they witnessed their brother/sister suffering in the last hours in life. Many of those who were not present during the illness period and at the time of death expressed regret.ConclusionIt is important to prepare siblings for their brother's/sister's illness and death as it may decrease anxiety and regrets later on
5.
Udo, Camilla, et al.
(författare)
A nationwide study of young adults’ perspectives on participation in bereavement research
2019
Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 22:10, s. 1271-1273
Tidskriftsartikel (refereegranskat) abstract
BACKGROUND:Young adults represent a minority in research; they are often considered too young or too old for participation. There is sparse information, especially in bereavement research, regarding how this age group perceives research participation and what they consider beneficial or harmful.AIM:To explore how parentally bereaved and nonbereaved young adults perceive research participation.DESIGN:Qualitative analysis of free-text comments collected in a Swedish nation-wide survey.SETTING/PARTICIPANTS:Parentally cancer-bereaved and nonbereaved young adults between 18 and 25 years old living in Sweden.RESULTS:Five categories were identified from the free-text comments, three among the cancer-bereaved: (1) therapeutic to remember the deceased, (2) valuable to help others and improve care, and (3) short-term distressful-long-term beneficial, and two among the nonbereaved: (1) increased reflection and awareness about life, and (2) an opportunity to help others.CONCLUSIONS:It is important to invite young adults to participate in bereavement research. The results suggest that potential harm is minimal and that participating in bereavement research can have a beneficial effect on young adults.
6.
Henoch, Ingela, 1956, et al.
(författare)
The influence of symptom clusters and the most distressing concerns regarding quality of life among patients with inoperable lung cancer
2014
Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 18:3, s. 236-241
Tidskriftsartikel (refereegranskat) abstract
Purpose: To explore the influence of symptom clusters and the most distressing concerns on global rating of quality of life (QoL) among patients with inoperable lung cancer (LC) over a three-month period following diagnosis. Methods: Data were derived from a longitudinal study dealing with the symptom experiences of 400 patients with LC at three time points: close to diagnosis and one and three months later. The symptom clusters were derived from a QoL questionnaire using factor analysis, which resulted in three clusters: the Respiratory cluster, the Pain cluster and the Mood cluster. The most distressing concerns were derived from responses to a free listing question (What is most distressing at present') and were categorised under three dimensions: Bodily distress, Life situation with LC and latrogenic distress. Cross-sectional, multivariate regression analyses with QoL as a dependent variable were used to determine predictors (Symptom clusters and most distressing concerns) at the three time points. Results: All three symptom clusters predicted QoL at each time point. Close to diagnosis, none of the dimensions of most distressing concerns predicted QoL, while the dimension Bodily distress was a significant predictor of QoL after one month. The Life situation with LC dimension was a significant predictor of QoL three months after diagnosis. Conclusions: Symptom clusters are important to LC patients' QoL and need to be acknowledged by healthcare professionals. The present study shows the importance of patients' descriptions of key concerns, which vary from diagnosis onwards, and urges healthcare professionals to be vigilant to such changes. (C) 2013 Elsevier Ltd. All rights reserved.
7.
Pettersson, S, et al.
(författare)
An exploration of patient-reported symptoms in systemic lupus erythematosus and the relationship to health-related quality of life.
2012
Ingår i: Scandinavian Journal of Rheumatology. - : Taylor & Francis. - 0300-9742 .- 1502-7732. ; 41:5, s. 383-390
Tidskriftsartikel (refereegranskat) abstract
OBJECTIVE: The aim of this study was to explore the most distressing symptoms of systemic lupus erythematosus (SLE) and determine how these relate to health-related quality of life (HRQoL), anxiety/depression, patient demographics, and disease characteristics (duration, activity, organ damage).METHODS: In a cross-sectional study, patients with SLE (n = 324, age 18-84 years) gave written responses regarding which SLE-related symptoms they experienced as most difficult. Their responses were categorized. Within each category, patients reporting a specific symptom were compared with non-reporters and analysed for patient demographics, disease duration, and results from the following questionnaires: the Medical Outcomes Study 36-item Short Form Health Survey (SF-36), the Hospital Anxiety and Depression Scale (HADS), the Systemic Lupus Activity Measure (SLAM), the SLE Disease Activity Index (SLEDAI), and the Systemic Lupus International Collaboration Clinics/American College of Rheumatology (SLICC/ACR) damage index.RESULTS: Twenty-three symptom categories were identified. Fatigue (51%), pain (50%), and musculoskeletal distress (46%) were most frequently reported. Compared with non-reporters, only patients reporting fatigue showed a statistically significant impact on both mental and physical components of HRQoL. Patients with no present symptoms (10%) had higher HRQoL (p < 0.001) and lower levels of depression (p < 0.001), anxiety (p < 0.01), and disease activity (SLAM) (p < 0.001).CONCLUSION: Fatigue, pain, or musculoskeletal distress dominated the reported symptoms in approximately half of the patients. Only patients reporting fatigue scored lower on both mental and physical aspects of HRQoL. Our results emphasize the need for further support and interventions to ease the symptom load and improve HRQoL in patients with SLE. Our findings further indicate that this need is particularly urgent for patients with symptoms of pain or fatigue.
8.
Lövgren, Malin, et al.
(författare)
Symptoms and problems with functioning among women and men with inoperable lung cancer : A longitudinal study.
2008
Ingår i: Lung Cancer. - : Elsevier BV. - 0169-5002 .- 1872-8332. ; 60:1, s. 113-124
Tidskriftsartikel (refereegranskat) abstract
The aim of this study is to compare the prevalence and intensity of symptoms and problems with functioning between women and men with inoperable lung cancer (LC) during 3 months post-diagnosis. One hundred and fifty-nine patients completed the EORTC QLQ C-30+LC13 at three time points: close to diagnosis and prior to treatment, and one, and 3 months later. Descriptive cross-sectional analyses and longitudinal analyses using repeated measure ANOVA were conducted. These patients reported many and intense symptoms and problems with functioning. The most salient finding from the cross-sectional analysis was that women reported both more, and more intense problems with emotional functioning close to diagnosis. Statistically significant improvements over time were found in both men and women with regard to emotional functioning, dyspnea, insomnia, cough, pain in arm/shoulder, while physical functioning, fatigue, constipation, dysphagia, peripheral neuropathy and alopecia deteriorated significantly over time. The longitudinal analyses suggest that, with the exception of emotional functioning, gender differences were not only related to biological sex alone, but were also found to be related to other components of the patients' life situation, such as education, age, civil status and type of LC. Sensitivity to different symptom experiences and responses to those experiences between and within women and men is also necessary in the management of symptoms in patients with inoperable LC.
9.
Lövgren, Malin, et al.
(författare)
Time spans from first symptom to treatment in patients with lung cancer : The influence of symptoms and demographic characteristics
2008
Ingår i: Acta Oncologica. - : Taylor & Francis. - 0284-186X .- 1651-226X .- 0001-6381. ; 47:3, s. 397-405
Tidskriftsartikel (refereegranskat) abstract
BACKGROUND: Cancer stage at diagnosis is the most important prognostic factor for lung cancer (LC), but most patients are diagnosed with advanced disease with many and intense symptoms. This study explores relationships between LC patients' first symptoms, symptoms triggering health care system (HCS) contact, demographic/clinical characteristics, and time spans in the care trajectory from first symptom(s) to treatment start.MATERIALS AND METHODS: Medical records were examined from all 314 patients diagnosed with primary LC in 2003 at a Department of Respiratory Medicine, in Stockholm Sweden. Descriptive analysis was used to examine symptoms and time spans in the care trajectory. Cox regression analysis was conducted to explore the influence of symptoms and demographic/clinical characteristics on the time spans.RESULTS: Tumor-specific symptoms led to HCS visits to a greater extent than did systemic symptoms, despite reports of weight loss, fatigue and appetite loss as common first symptoms. Minor differences between women and men were found regarding specific symptoms. The study confirms that the time spans from first symptoms reported to treatment start are extensive, exceeding Swedish national recommendations. A lump/resistance, neurological symptoms, appetite loss, hemoptysis and non-thoracic related pain were associated with significantly shorter time spans in the care trajectory. People >74 years old risked longer time span from first HCS visit to treatment start.CONCLUSION: This study indicates a need for a more efficient LC care trajectory. Elderly patients could be particularly vulnerable for longer time spans.
10.
Lövgren, Malin, 1980-, et al.
(författare)
Neck/shoulder and back pain in new graduate nurses : a growth mixture modeling analysis
2014
Ingår i: International Journal of Nursing Studies. - : Elsevier. - 0020-7489 .- 1873-491X. ; 51:4, s. 625-639
Tidskriftsartikel (refereegranskat) abstract
Background: Although it is well known that musculoskeletal disorders are common among registered nurses, little longitudinal research has been conducted to examine this problem from nursing education to working life.Objectives: The aim was to investigate the prevalence and incidence of neck/shoulder and back pain in nursing students in their final semester, and one and two years after graduation. Furthermore, to identify common trajectories of neck/shoulder and back pain, and explore sociodemographic and lifestyle-related factors, contextual factors and health outcome that might be characteristic of individuals in the various trajectories.Design: Longitudinal study following nursing students from their final year of studies, with follow-ups one and two years after graduation.Settings and participants: Nursing students who graduated from the 26 universities providing undergraduate nursing education in Sweden 2002 were invited to participate(N = 1700). Of those asked, 1153 gave their informed consent.Methods: The participants answered postal surveys at yearly intervals. Descriptive statistics were used to analyze prevalence and incidence of pain, and growth mixture modeling was applied to identify different homogeneous clusters of individuals following similar trajectories in pain development across time.Results: The prevalence of neck/shoulder and back pain remained constant over time(around 50% for neck/shoulder pain and just over 40% for back pain). Six different development trajectories for each symptom were found, reflecting patterns of stable pain levels or variation in levels over time: one symptom-free group, two decreasing pain groups, two increasing pain groups, and one chronic pain group. With few exceptions, the same factors (sex, children, chronic disease, working overtime, work absence, sickness presence, physical load, depression, self-rated health, sleep quality and muscular tension) were associated with neck/shoulder and back pain trajectories. Different types of physical load characterized new nurses with neck/shoulder pain and back pain respectively.Conclusions: The high prevalence of pain among nursing students and among new graduate nurses, suggests that it would be effective to implement preventive strategies already during nursing education, but they should also preferably continue after graduation. Many factors associated with pain in the neck/shoulder and back seem to be modifiable, and thereby constitute targets for preventive strategies.
