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Objective

The 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.

Methods

This 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.

Results

The 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.

Conclusion

It is important to prepare siblings for their brother's/sister's illness and death as it may decrease anxiety and regrets later on

Syskons råd till vårdpersonal: En nationell uppföljning 2 till 9 år efter förlusten av en bror eller syster i cancer

Lövgren, M., Grenklo-Bylund, T., Jalmsell, L., Eilegård, A., Kreicbergs, U.

Bakgrund: När ett barn drabbas av cancer förändras livet för hela familjen. De friska syskonen kan uppleva minskad uppmärksamhet från föräldrar, svårigheter i skolan samt post-traumatiska stress symtom. För att förbättra situationen för syskon till cancersjuka barn syftar denna studie till att undersöka vilka råd syskon ger vårdpersonal som arbetar med cancersjuka barn och deras familjer.

Metod: År 2009 genomfördes en rikstäckande enkätstudie av syskon som mist en bror eller syster i cancer två till nio år tidigare. Av 240 inbjudna syskon deltog 174 (73 %). Dessa har svarat på en öppen fråga om vilka råd de skulle vilja ge till vårdpersonal som arbetar med barn med cancer och deras familjer. För att erhålla större förståelse för svaren på den öppna frågan hölls en fokusgruppdiskussion 2014 med syskon som mist en bror eller syster. Data har bearbetats med innehållsanalys. 

Resultat: Det vanligaste rådet syskonen gav till vårdpersonal var att de ville få psykosocialt stöd. Informationen kring patientens sjukdom och vård behövde förbättras liksom möjligheten för syskon att få vara mer delaktiga i sin bror/systers vård. Syskonen önskade att vårdpersonalen skulle visa mer empati, vara ”naturlig”, samt förmedla hopp men ändå vara realistiska. De önskade stödjande åtgärder från diagnos till år efter dödsfallet. Råd om den fysiska vårdmiljön framkom också liksom vikten av att föräldrarna fick stöd i att få syskonen delaktiga i patientens vård.

Slutsats: Det behövs en utveckling av interventioner framförallt gällande psykosocialt stöd, information samt involvering av syskon från diagnos till år efter dödsfallet. Stöd till föräldrar om hur de kan involvera syskon bättre behövs också.  

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.

Background: Spinal muscular atrophy (SMA) is a rare genetic progressive neuromuscular disorder. The most severe form is type 1, which often is fatal the first year of life without respiratory support. Type 2 has moderate severity but is still associated with severe symptomatology. To improve the situation for the affected families the aim of this study was to explore how parents of children living with SMA type 1-2, and parents who have lost their children in SMA type 1-2 experienced health care during their child's illness. Material and Methods: The National Board of Health and Welfare was contacted to identify children born between the years 2000-2010 in Sweden and later diagnosed with SMA type 1-2. Subsequently, parents were identified through the Swedish Tax Agency. The questionnaires, developed based on interviews with parents of children with SMA and health care professionals, were mailed to parents in February 2013. Thirteen of 14 parents of 7 living children (93%) and 48 of 56 (86%) parents of 30 deceased children participated. All children except one of those whose parents were eligible for participation were represented in the study. Results: A majority of the parents were confident with the care of their child, e.g. decision making, and that they felt that the staff respected them. However, bereaved parents were more satisfied with the care than those with a child living with SMA. It was particularly difficult for the parents to accept the disease progression and to have to force their child to undergo vital treatments and examinations. It was also distressing for the parents to most often be the ones to take the initiative for care themselves. Conclusion: In order to reduce suffering of children with SMA, and thus their parents, new routines for examinations and treatments need to be developed. In addition, health care personnel need to initiate care of the child with SMA and thereby unburden the parents. 

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 Iatrogenic 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.

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.

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 health-related 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.