1.
Henoch, Ingela, 1956, et al.
(author)
Perception of quality of care : Comparison of the views of patients' with lung cancer and their family members
2012
In: Journal of Clinical Nursing. - Oxford : Wiley. - 0962-1067 .- 1365-2702. ; 21:3-4, s. 585-594
Journal article (peer-reviewed) abstract
Aims and objectives. To explore potential differences within dyads of patients with lung cancer and family members judgment of different aspects of quality of care and relationships between quality of care and personal and health-related characteristics. Background. High quality of care is important for acceptable quality of life in patients in palliative care. If patients are unable to participate in quality of care assessments or decision-making, family members might often act as proxies, despite the complicated nature of their own situation. Design. Cross-sectional survey design. Method. A patient and family member version of the abbreviated questionnaire Quality from Patients' Perspective, with additional items about perceived health and opinions about care, was mailed to members of the Swedish lung cancer Patient Organisation. Wilcoxon's signed rank test was used to identify potential differences within 51 patient-family member dyads' quality of care ratings. Relationships between Quality from Patients' Perspective dimensions and demographic and healthrelated variables were examined with Spearman's correlations. Results. Patient-family member dyads had high levels of agreement in ratings of perceived reality of quality of care. Family members generally rated the subjective importance of individual items higher than did the patient in the dyad, with significant difference in the dimension ` socio-cultural approach'. Older patients were found to rate the physical-technical conditions higher than younger patients, in relation to perceived reality but not subjective importance. Women family members were found to rate the subjective importance of medical-technical competence, identity-oriented approach and socio-cultural approach significantly higher than men did. Conclusions. Patients with lung cancer and their family members agree in ratings of the perceived reality, but they differ more in ratings of the subjective importance of quality of care. When patients are unable to communicate their preferences, family members' opinions could be used as proxies concerning concrete aspects of quality of care. Concerning more subjective aspects, family members' ratings should be interpreted with precaution, as it could diverge from patients' own opinion. Relevance to clinical practice. The perceptions of the importance of different aspects of quality of care were less related to health status than were judgments of quality of care received. This might suggest that the care patients received fulfilled neither the patients' nor family members' expectations, which is an important message to healthcare professionals and which would demand further exploration.
2.
Henoch, Ingela, 1956, et al.
(author)
The influence of symptom clusters and the most distressing concerns regarding quality of life among patients with inoperable lung cancer
2014
In: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 18:3, s. 236-241
Journal article (peer-reviewed) 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.
3.
Jalmsell, Li, et al.
(author)
Children with cancer share their views : tell the truth but leave room for hope
2016
In: Acta Paediatrica. - : Wiley. - 0803-5253 .- 1651-2227. ; 105:9, s. 1094-1099
Journal article (peer-reviewed) abstract
AimOne in five children diagnosed with cancer will die from the disease. The aim of the study was to explore how children with cancer want to receive bad news about their disease, such as when no more treatment options are available. MethodsWe conducted individual interviews with ten children with cancer, aged seven to 17 years, at a single paediatric oncology unit in central Sweden. Interviews were audio-taped and analysed with systematic text condensation. Bad news was defined as information about a potentially fatal outcome, such as a disease relapse, or information that the treatment administered was no longer working and that there was no more treatment possible. ResultsAll children expressed that they wanted truthful information and they did not want to be excluded from bad news regarding their illness. They wanted to be informed as positively as possible, allowing them to maintain hope, and in words that they could understand. They also wanted to receive any bad news at the same time as their parents. ConclusionChildren with cancer want to be fully informed about their disease, but they also wanted it to be relayed as positively as possible so that they could stay hopeful.
4.
Lövgren, Malin
(author)
Att ha ett syskon med cancer : Information till föräldrar
2016
Book (other academic/artistic) abstract
Den här skriften ingår i Barncancerfondens skriftserie där vi tar upp olika typer av barncancer, behandlingar och annat som berör barn med cancer och deras familjer. Den är tänkt att ge föräldrar stöd i hur de kan synliggöra syskon, som ofta hamnar i skuggan av en syster eller bror som insjuknar i cancer.
5.
Lövgren, Malin, et al.
(author)
Bereaved Siblings' Advice to Health Care Professionals Working With Children With Cancer and Their Families
2016
In: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 33:4, s. 297-305
Journal article (peer-reviewed) 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.
6.
Lövgren, Malin, et al.
(author)
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
In: Journal of Palliative Medicine. - Larchmont, New York : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 21:2, s. 156-162
Journal article (peer-reviewed) 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.
7.
Lövgren, Malin, et al.
(author)
Clock time and embodied time experienced by patients with inoperable lung cancer
2010
In: Cancer Nursing. - Philadelphia : Lippincott Williams & Wilkins. - 0162-220X .- 1538-9804. ; 14, s. S45-S45
Journal article (peer-reviewed) 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.
8.
Lövgren, Malin, et al.
(author)
Information and treatment decisions in severe Spinal muscular atrophy : A parental follow-up
2016
In: European journal of paediatric neurology. - : Elsevier BV. - 1090-3798 .- 1532-2130. ; 20:6, s. 830-838
Journal article (peer-reviewed) abstract
IntroductionThe parents of children with severe spinal muscular atrophy (SMA) face difficult ethical decisions regarding their child's treatment. This study explored the experience of parents of children with severe SMA concerning information and treatment decisions.Material and methodsThis nationwide survey, conducted in 2013, is based on parents of children who were born in Sweden between 2000 and 2010 and later diagnosed with SMA type I or II where respiratory support was considered the first year of life (N = 61, participation rate: 87%). The survey involved parents' perception of the child's care and the questions used in this study covered information given and treatment decisions. Descriptive statistics were used.ResultsNone of the parents reported that the health care professionals made decisions concerning the child's treatment without informing them first, and 80% reported feeling confident about the decisions made. Of the bereaved parents, 11/48 (23%) reported that they got no information about respiratory support, compared to 2/13 (15%) of non-bereaved. Bereaved parents were more likely to report being satisfied with and understanding the information given about the illness and its treatment than non-bereaved parents.ConclusionAll parents reported having been informed before treatment decisions were made and a vast majority reported feeling confident about the decisions. However, a quarter of the parents declined to have received information about respiratory support, which indicates that the parents did not sufficiently understand the available respiratory treatment options, and that their children may not receive the kind of care that is recommended in guidelines.
9.
Lövgren, Malin
(author)
Jag då! : Till dig som har ett syskon med cancer
2016
Book (other academic/artistic) abstract
Den här skriften ingår i Barncancerfondens skriftserie där vi tar upp olika typer av barncancer, behandlingar och annat som berör barn med cancer och deras familjer. Den här skriften vänder sig till dig som har en bror eller syster med cancer och är tänkt att ge stöd, när livet ställs på ända.
10.
Lövgren, Malin, 1980-, et al.
(author)
Neck/shoulder and back pain in new graduate nurses : a growth mixture modeling analysis
2014
In: International Journal of Nursing Studies. - : Elsevier. - 0020-7489 .- 1873-491X. ; 51:4, s. 625-639
Journal article (peer-reviewed) 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.
