We used national surveys to study how older persons’ changing household patterns influence the gender balance of caregiving in two countries with distinct household structures and cultures, Spain and Sweden. In both countries, men and women provide care equally often for their partner in couple-only households. This has become the most common household type among older persons in Spain and prevails altogether in Sweden. This challenges the traditional dominance of young or middle-aged women as primary caregivers in Spain. In Sweden, many caregivers are old themselves. We focus attention to partners as caregivers and the consequences of changing household structures for caregiving, which may be on the way to gender equality in both countries, with implications for families and for the public services.

Background: Childhood cancer impacts the family system and has psychosocial consequences for all family members. For the parents, the ill child, and the siblings to be able to adjust to this challenging situation, the whole family needs access to psychosocial support. However, only a few such family interventions in pediatric oncology have been evaluated. The aim of this study was to explore the potential effects of a family-centered intervention, the Family Talk Intervention (FTI), in pediatric oncology from the parents’ perspectives.

Methods: A concurrent mixed methods design was used for this study. Data were derived from a pilot study of 26 families recruited from one pediatric oncology center in Sweden. This study focused on questionnaire and interview data from 52 parents.

Results: After participation in FTI, the parents felt more satisfied with the conversations within the family about the illness. FTI also contributed to strengthened family togetherness, including more open communication and improved family relations, as described by the parents. Parents further expressed that they felt more empowered in their parenting role following FTI.

Conclusions: The findings regarding FTI’s ability to improve family communication and family relations, thus strengthening family togetherness in families with childhood cancer, are promising. This provides motivation for a large-scale study of FTIs in pediatric oncology.

Purpose: Previous research shows that the death of a parent places children at risk for a number of negative outcomes. The role of trust in health care at the end of life has been acknowledged as crucial for patients and adult family members. However, the consequences of children’s distrust in the care provided to their parents remain unknown. Therefore, we investigated the negative long-term outcomes of cancer-bereaved sons’ and daughters’ distrust in the care that was provided to a dying parent.

Methods: We used a population-based nationwide survey to investigate self-reported distrust in the care provided and possible negative outcomes in 622 (73%) participants who had lost a parent as a result of cancer 6 to 9 years earlier, at ages 13 to 16 years. All participants were 18 years or older at the time of the survey.

Results: In those who reported no or little trust (ie, distrust) in the health care provided to their dying parents, we found statistically significantly higher risks of various negative outcomes at the time of survey: bitterness toward health care professionals for not having done everything that was possible (crude risk ratio [RR], 3.5; 95% CI, 2.3 to 5.1) and for having stopped treatment (RR, 3.4; 95% CI, 2.1 to 6.0), self-destructiveness (eg, self-injury [RR, 1.7; 95% CI, 1.2 to 2.4]), and psychological problems (eg, moderate to severe depression according to the Patient Health Questionnaire–9 [RR, 2.3; 95% CI, 1.5 to 3.5]).

Conclusion: In cancer-bereaved former adolescents, distrust in the health care provided to the dying parent is associated with a higher risk of negative long-term outcomes. The health care professionals involved in this care might play an important role in safeguarding the trust of adolescents.

Cancer support and rehabilitation are suggested to be an integral part of cancer care strategies. This study focuses on comparativeness of cancer support and rehabilitation programmes. The aim of this study was to analyse available cancer support and rehabilitation programmes in Sweden presented as complementary to cancer rehabilitation at cancer clinics. A multiple case study design was chosen in order to inquire the small number of existing supportive and rehabilitative cancer programmes. Based on the structures, processes and outcomes of the nine included programmes, three types of cancer support and rehabilitation programmes were identified: multimodal rehabilitation, comprehensive cancer support and art therapy. Cancer support and rehabilitation programmes offer a variety of activities and therapies which are highly valuable and relevant for people with cancer. The typology of cancer support and rehabilitation programmes and comparability between programmes need further inquiry.

Bakgrund: Sexualitet innefattar en människas behov av intima och emotionella relationer och sexuell njutning. Ämnet är känsligt att tala om men för de flesta personer uppfattas sexualiteten som en värdefull del av livet. En stomi har visat sig kunna leda till minskad sexuell lust och en känsla av att vara oattraktiv. Personer med stomi ansåg det vara viktigt att tala med en sjuksköterska om sin sexualitet men att de var missnöjda med möjligheten att tala om detta inom vården.

Syfte: Syftet med denna översiktsstudie är att beskriva hur en persons sexualitet påverkas av att erhålla en stomi.

Metod: Översiktsstudie baserad på sju vetenskapliga artiklar varav fyra är kvalitativa och tre är kvantitativa. Artiklarna har sökts fram genom såväl databassökning med relevanta sökord samt med manuell sekundärsökning med utgångspunkt i funna artiklars referenslistor. En kvalitetsgranskning och analys har genomförts av samtliga artiklar.

Resultat: Tre huvudteman identifierades: stomins inverkan på personens upplevda sexualitet, personens förändrade kroppsbild och problematiken det medför samt personens oro kring sin sexualitet. Resultatet visar att stomin påverkar en persons sexualitet negativt genom att påverka personens kroppsbild och visar sig även kunna påverka parrelationer negativt. Stomin orsakar även starka känslor av oro för personen.

Diskussion: I resultatdiskussionen har Merleau-Pontys filosofi om den levda kroppen använts för att belysa problematiken kring en persons förändrande kroppsbild och sexualitet i samband med att erhålla en stomi. Sjuksköterskan kan använda en helhetssyn för att stödja patienten i samband med sexuella problem och på så vis underlätta patientens anpassning till sin förändrade kroppsbild.

Nyckelord: Stomi, sexualitet, kroppsbild, livskvalitet, oro.  

The aim with this literature review was to describe content, objectives, design, and outcomes of support groups for parentally bereaved children three to twelve years of age. In a support group with children in similar situation the children's thoughts, experiences and feelings will be normalised through different activities. Pedagogical methods include creative activities of different kinds, e.g. painting, writing letters and poems, reading stories, play and games. The purposes of the methods are to accept and understand the reality of the loss, to understand and work through the grieving, to enhance family communication, and to keep the memory of the death and go on living. Organisation and structure are described in relation to development levels and ages of children and youths. Outcomes of groups are characterized by clinical observations and a dearth of evaluative studies. All bereaved children should have the opportunity to participate in a support group when a parent, sibling or other relative dies. Well developed services for bereaved children should be a matter of health care policy and quality.

Purpose: The study explored the direction of change (decline vs. improvement) after diffuse axonal injury (DAI) in the domains of the ICF: body structure, body function, and activity.

Methods: Thirteen patients with DAI were assessed by using diffusion tensor imaging (DTI) to measure body structure, the Barrow Neurological Institute Screen for Higher Cerebral Functions (BNIS) to measure body function, and the Assessment of Motor and Process Skills (AMPS) to measure activity. The DTI, BNIS, and AMPS were applied at the acute phase (A1), and at 6 and 12 months post-injury (A2 and A3). Visual and statistical analyses were conducted to explore time-dependent changes in the ICF domains.

Results: Improvements were observed for most patients in all ICF domains from injury until six months. Thereafter, the results diverged, with half of the subjects showing a decline in DTI and BNIS scores between A2–A3, and all but one of the patients exhibiting identical or better A2–A3 AMPS process skill scores.

Conclusions: From 6 to 12 months post-injury, some patients underwent an ongoing degenerative process, causing a decline in cognitive function. The same decline was not observed in the activity measure, which might be explained by the use of compensatory strategies.

• Implications for rehabilitation

• In rehabilitation it is essential to be aware that in some cases with TBI, an ongoing degenerative process in the white matter can be expected, causing an adverse late effect on cognitive function.

• The cognitive decline, caused by DAI, does not necessarily mean a concurrent decrease in activity performance, possibly explained by the use of compensatory strategies. This suggests that, after the post-acute phase, rehabilitation offering strategy training may be beneficial to enhance every-day functioning.

• Strategy use requires awareness, which imply the need to assess level of awareness in order to guide rehabilitation.

Aim: To explore the feasibility to make on-road assessments routinely at 3 months follow-up for all patients with a 3 months verbal prohibition of driving after stroke, to support the physicians decision of fitness to drive.

Methods: From September 2007 to December 2009 there were 151 stroke patients from the stroke units at the hospital eligible for inclusion in the study. Fifty agreed to be assessed by the Nordic Stroke Driver Screening Assessment (NorSDSA) and on-road assessment. As base for discussion about the consequences on resource use relative to accuracy, calculations were made to explore and compare an expected yearly cost for two different assessment conditions, the NorSDSA followed by on-road assessment in uncertain cases and on-road assessment for all cases.

Findings: The yearly need for driving assessments was estimated to 500 patients. With less accuracy than only on-road assessments the NorSDSA with the stipulated cut-off produced a cost benefit of 1,700 €. The NorSDSA resulted in 32% uncertain cases and the certain cases were in 17% in disagreement with the on-road assessment, the gold standard.

Conclusion: It is conceivable and could be recommended to make on-road assessments for all patients with stroke at 3 months follow-up as accuracy is of importance both for patients and society and may save resources in the long run.

The aim of this study was to illuminate the meaning of professional carers’ experiences in caring situations when a conflict of interest arises with the older person receiving care. The findings reveal the complexity of the carers’ ambivalence when facing a conflict of interest, weighing up between the older persons’ right to self-determination and external demands. The carers are alone in their ambivalence, and the conclusion is that they need help and support to be more present in the encounter. The implication for this study is to focus on care as a person-centered practice and to focus on people as interdependent on support carers to maintain older people’s right to self-determination in the relationship.

OBJECTIVE: To investigate the risk of self-injury in parentally cancer-bereaved youth compared with their nonbereaved peers.

DESIGN: Population-based study of cancer-bereaved youth and a random sample of matched population controls.

SETTING: Sweden in 2009 and 2010.

PARTICIPANTS: A total of 952 youth (74.8%) confirmed to be eligible for the study returned the questionnaire: 622 (73.1%) of 851 eligible young adults who lost a parent to cancer between the ages of 13 and 16 years, in 2000 to 2003, and 330 (78.4%) of 451 nonbereaved peers.

MAIN EXPOSURE: Cancer bereavement or nonbreavement during the teenage years.

MAIN OUTCOME MEASURES: Unadjusted and adjusted odds ratios (ORs) of self-injury after January 1, 2000.

RESULTS: Among cancer-bereaved youth, 120 (19.5%) reported self-injury compared with 35 (10.6%) of their nonbereaved peers, yielding an OR of 2.0 (95% CI, 1.4-3.0). After controlling for potential confounding factors in childhood (eg, having engaged in self-destructive behavior, having been bullied, having been sexually or physically abused, having no one to share joys and sorrows with, and sex), the adjusted OR was 2.3 (95% CI, 1.4-3.7). The OR for suicide attempts was 1.6 (95% CI, 0.8-3.0).

CONCLUSIONS: One-fifth of cancer-bereaved youth reported self-injury, representing twice the odds for self-injury in their nonbereaved peers, regardless of any of the adjustments we made. Raised awareness on a broad basis in health care and allied disciplines would enable identification and support provision to this vulnerable group.

BACKGROUND: Self-injury, a manifestation of severe psychological distress, is increased in cancer-bereaved youths. Little is known about the potential influence on the risk for self-injury of factors that could be clinically relevant to and modifiable by the health-care professionals involved in the care of the dying parent.

METHODS: In a nationwide population-based anonymous study, 622 (73.1%) youths (aged 18-26) who, 6 to 9 years earlier at ages 13 to 16, had lost a parent to cancer answered study-specific questions about self-injury and factors related to the family and parental health care.

RESULTS: Univariable analyses showed that the risk for self-injury was increased among cancer-bereaved youths who reported poor family cohesion the years before (relative risk [RR], 3.4, 95% confidence interval [CI], 2.5-4.6) and after the loss (RR, 3.3, 95% CI, 2.4-4.4), distrust in the health care provided to the dying parent (RR, 1.7, 95% CI, 1.2-2.4), perceiving poor health-care efforts to cure the parent (RR 1.5, 95% CI, 1.1-2.1) and poor efforts to prevent suffering (RR, 1.6, 95% CI, 1.1-2.4), that at least one of their parents had been depressed or had troubles in life (RR, 1.5, CI, 1.1-2.1) and believing 3 days before the loss that the treatment would probably cure the parent (RR, 1.6, CI, 1.1-2.3). In the total multivariable models, only poor family cohesion before and after the loss remained statistically significantly associated with self-injury.

CONCLUSION: Poor family cohesion before and after the loss of a parent to cancer is associated with an increased risk of self-injury in teenage children.

PURPOSE: The early loss of a parent is a tragedy and a serious life event. This study investigated grief resolution and morbidity in cancer-bereaved teenagers 6 to 9 years after the loss of a parent to cancer.

METHODS: In a nationwide population-based study of 622 of 851 (73 %) youths who as teenagers 6 to 9 years earlier had lost a parent to cancer, we explored the magnitude of unresolved grief and its association with psychological and physiological morbidity. Participants answered a study-specific anonymous questionnaire including questions about if they had worked through their grief and about their current health.

RESULTS: Six to nine years post-loss 49 % reported unresolved grief (8 % no and 41 % a little grief resolution). They had, in comparison with youths reporting resolved grief, statistically significantly elevated risks, e.g. for insomnia (sons' relative risk (RR) 2.3, 95 % CI 1.3-4.0; daughters' RR 1.7, 95 % CI 1.1-2.7), fatigue (sons' RR 1.8, 95 % CI 1.3-2.5; daughters' RR 1.4, 95 % CI 1.1-1.7) and moderate to severe depression, i.e. score >9, PHQ-9 (sons' RR 3.6, 95 % CI 1.4-8.8; daughters' RR 1.8, 95 % CI 1.1-3.1). Associations remained for insomnia in sons, exhaustion in daughters and fatigue in both sons and daughters when depression, negative intrusive thoughts and avoiding reminders of the parents' disease or death were included in a model.

CONCLUSIONS: Approximately half of cancer-bereaved youth report no or little grief resolution 6 to 9 years post-loss, which is associated with fatigue, sleeping problems and depressive symptoms.

BACKGROUND: We aimed to investigate cancer-bereaved youths' opinions and experiences of being told about a parent's imminent death from cancer and of barriers to this communication.

MATERIAL AND METHODS: This nationwide population-based survey included 622/851 (73%) youths (aged 18-26) who at age 13-16, 6-9 years earlier had lost a parent to cancer.

RESULTS: In total 595 of 610 (98%) of the participants stated that teenage children should be informed when the parent's death was imminent (i.e. a matter of hours or days, not weeks). 59% stated that they themselves had been told this, 37% by the parents, 7% by parents and healthcare professionals together and 8% by professionals only. Frequent reasons for why the teenager and parents did not talk about imminent death before loss were that one (n=106) or both (n=25) of the parents together with the teenage child had pretended that the illness was not that serious, or that none of the parents had been aware that death was imminent (n=80). Up to a couple of hours before the loss, 43% of participants had not realized that death was imminent.

CONCLUSION: In this population-based study virtually all youth who at ages 13-16 had lost a parent to cancer afterwards stated that teenagers should be told when loss is near, i.e. a matter of hours or days, not weeks. Many stated that they had not been given this information and few were informed by professionals, with implications for future improvements in end-of-life care of patients with teenage children.

OBJECTIVE: Traumatic spinal cord injury is typically a devastating event, leading to permanent physical disability. Despite the severity of the condition, many persons with traumatic spinal cord injury manage to lead both active and independent lives. The aim of this study was to investigate the experience of health and wellbeing of persons living with a traumatic spinal cord injury for at least 20 years. Design and methods: A qualitative design was used. Data was analysed using a phenomenological-hermeneutical method. Rich narratives were obtained from 14 persons with paraplegia due to traumatic spinal cord injury sustained at least 20 years ago. RESULTS: The key finding was that health and wellbeing were attained when persons were able to perceive themselves as being “normal” in everyday relationships and circumstances. The normalization process involved learning to negotiate and/or prevent potentially embarrassing situations by acting in a “parallel world”, covertly “behind the scenes”. CONCLUSION: The subjective experience of wellbeing and health after traumatic spinal cord injury depends upon the ability to prevent or resolve potentially embarrassing situations without this being noticed by others. Performing this work “behind the scenes”, enables persons with traumatic spinal cord injury to interact smoothly with others and thereby be perceived as normal, despite substantial disability.

Every year medical researchers make contact with a large number of cancer survivors with the aim of evaluating cancer treatment. For this reason we decided to investigate how Swedish cancer survivors perceived their participation in research studies focusing on the long-term consequences of being a survivor of gynaecological or urinary bladder cancer. Data were collected by means of two study-specific postal questionnaires, both consisting of questions covering physical symptoms, well-being and the experience of being a cancer survivor. Both questionnaires also included questions evaluating the participants' experience of being research subjects. The questionnaires were developed in close co-operation with cancer survivors. The study population consisted of 1068 cancer survivors. Of these, 95% (n=1003) reported that they thought the study was valuable and 54% (n=559) that they had been positively affected by participating. Four per cent (n=39) expressed that they had been negatively affected by their participation in the study. The vast majority of the cancer survivors thought that participating in their particular study was valuable.

While dying at home may be the choice of many, where people die may be less important than argued. We examined factors associated with parental planning of a child's location of death (LOD) and its effects on patterns of care and parent's experience. In a cross-sectional study of 140 parents who lost a child to cancer at one of two tertiary-level U.S. pediatric hospitals, 88 (63%) planned the child's LOD and 97% accomplished their plan. After adjusting for disease and family characteristics, families whose primary oncologist clearly explained treatment options during the child's end of life and who had home care involved were more likely to plan LOD. Planning LOD was associated with more home deaths (72% vs. 8% among those who did not plan, P<0.001) and fewer hospital admissions (54% vs. 98%, P<0.001). Parents who planned were more likely to feel very prepared for the child's end of life (33% vs. 12%, P=0.007) and very comfortable with LOD (84% vs. 40%, P<0.001), and less likely to have preferred a different LOD (2% vs. 46%, P<0.001). Among the 73 nonhome deaths, planning was associated with more deaths occurring in the ward than in the intensive care unit or other hospital (92% vs. 33%, P<0.001), and fewer children being intubated (21% vs. 48%, P=0.029). Comprehensive physician communication and home care involvement increase the likelihood of planning a child's LOD. Opportunity to plan LOD is associated with outcomes consistent with high-quality palliative care, even among nonhome deaths, and thus may represent a more relevant outcome than actual LOD.

OBJECTIVE: The objective of the present study is to examine bereaved siblings' perception of research participation.

METHODS: A Swedish nationwide study on avoidable and modifiable health care-related factors in paediatric oncology among bereaved siblings who lost a brother or sister to cancer between the years 2000 and 2007 was conducted. Data are presented as proportions, and the differences between groups were statistically tested at the 5% significant level using Fisher's exact test.

RESULTS: Out of 240 eligible siblings, 174 responded (73 %). None of the siblings (0/168) thought their participation would affect them negatively in the long term. However, 13% (21/168) stated it was a negative experience to fill out the questionnaire, whereas 84% (142/169) found it to be a positive experience. Women were more likely to report their participation as positive in a long-term perspective compared with men (p = 0.018).

CONCLUSIONS: None of the bereaved siblings in this Swedish nationwide study anticipated any long-term negative effect from their research participation. A majority reported it as positive to revisit their needs and experiences throughout their brother or sister's illness and death 2-9 years following the loss. We believe that the stepwise approach used in this study contributed to the high acceptance.

BACKGROUND: The objective of this study was to assess long-term psychological distress in siblings who lost a brother or sister to cancer 2 to 9 years earlier, as compared with a control group of non-bereaved siblings from the general population.

METHODS: During 2009, we conducted a nationwide follow-up study in Sweden by using an anonymous study-specific questionnaire. Siblings who had lost a brother or sister to cancer between the years 2000 and 2007 and also a control group of non-bereaved siblings from the general population were invited to participate. The Hospital Anxiety and Depression Scale (HADS) was used to measure psychological distress, and to test for differences in the ordinal outcome responses between the groups, we used Wilcoxon-Mann-Whitney rank-sum test.

RESULTS: Among the bereaved siblings, 174/240 (73%) participated and 219/293 (75%) among the non-bereaved. Self-assessed low self-esteem (p = 0.002), difficulties falling asleep (p = 0.005), and low level of personal maturity (p = 0.007) at follow-up were more prevalent among bereaved siblings. However, anxiety (p = 0.298) and depression (p = 0.946), according to HADS, were similar.

CONCLUSION: Bereaved siblings are at increased risk of low self-esteem, low level of personal maturity and difficulties falling asleep as compared with non-bereaved peers. Yet, the bereaved were not more likely to report anxiety or depression.

OBJECTIVE: The purpose of this study was to examine siblings' long-term psychological health in relation to their perception of communication with their family, friends, and healthcare professionals during a brother or sister's last month of life.

METHOD: A nationwide questionnaire study was conducted during 2009 in Sweden of individuals who had lost a brother or sister to cancer within the previous two to nine years. Of the 240 siblings contacted, 174 (73%), participated. The Hospital Anxiety and Depression Scale (HADS) was employed to assess psychological health (anxiety). The data are presented as proportions (%) and relative risks (RR) with a 95% confidence interval (CI 95%).

RESULTS: Siblings who were not satisfied with the amount they talked about their feelings with others during their brother or sister's last month of life were more likely to report anxiety (15/58, 26%) than those who were satisfied (13/115, 11%; RR = 2.3(1.2-4.5)). The same was true for those who had been unable to talk to their family after bereavement (RR = 2.5(1.3-4.8)). Avoiding healthcare professionals for fear of being in their way increased siblings' risk of reporting anxiety at follow-up (RR = 2.2(1.1-4.6)), especially avoidance in the hospital setting (RR = 6.7(2.5-18.2)). No such differences were seen when the ill brother or sister was cared for at home.

SIGNIFICANCE OF RESULTS: Long-term anxiety in bereaved siblings might be due to insufficient communication. Avoiding healthcare professionals, especially when the brother or sister is cared for at the hospital, may also increase the risk of anxiety.

PURPOSE: To assess adolescent and young adult siblings' perception of social support prior to and following the loss of their brother or sister to cancer, 2 to 9 years earlier, and their anxiety at follow-up.

METHOD: In 2009, 174 (73%) bereaved siblings (12-25 years) participated in a nationwide, long-term follow-up study in Sweden using an anonymous study-specific questionnaire. The Hospital Anxiety and Depression Scale was used to measure self-assessed anxiety.

RESULTS: Siblings had a higher risk of anxiety if they perceived their need for social support was unsatisfied during their brother or sisters' last month before death, relative risk (RR) = 3.6 (95% confidence interval [CI] = 1.8-7.3); time after death, RR = 2.9 (95% CI = 1.5-5.6); and at follow-up, RR = 3.8 (95% CI = 2.0-7.2). Furthermore, a higher risk for anxiety was shown for siblings if they did not perceive that their parents and neighbors cared for them after their brother or sisters' death, RR = 2.7 (95% CI = 1.3-5.5), RR = 5.4 (95% CI = 1.3-21.9), respectively.

CONCLUSION: Bereaved siblings had a greater probability to report self-assessed anxiety if they perceived that their need for social support was not satisfied prior to and following death. Information from both nurses and other health care professionals to families about the impact of social support may contribute to lessen the siblings' risk of anxiety.

OBJECTIVE: Patient-physician communication and patient satisfaction are important elements of cancer care. Trust is considered to be crucial for the patient-physician relationship, yet little is to be found in the literature regarding what factors may influence trust.

METHODS: We assessed predictors of trust in health-care professionals and in the medical care by administering two questionnaires, one at start of chemotherapy treatment and one at the time of the third chemotherapy cycle, to 304 parents of children with newly diagnosed cancer at the Children's Cancer Hospital in Cairo, Egypt.

RESULTS: Parents' trust in the medical care at the time of the child's third chemotherapy cycle was significantly associated with the following at the start of treatment: having received at least moderate information about the disease (relative risk (RR) 13.2; 95% CI 7.8-22.3) and the treatment (RR 17.2; 95% CI 9.5-31.4), having the opportunity to communicate with the child's physicians (RR 21.3; 95% CI 11.7-38.8), being satisfied with the physicians conversation style (RR 30.6; 95% CI 14.4-64.9), having the emotional needs met (RR 22.2; 95% CI 11.8-41.9), and being met with care by the child's physicians (RR 32.0; 95% CI 15.2-67.7). After multivariable model selection, the strongest predictor of trust at the time of the third chemotherapy cycle was to be met with care at the start of treatment.

CONCLUSION: Parents being met with care by the child's physicians at the beginning of the child's chemotherapy treatment develop an increased trust in the medical care.

OBJECTIVE: Informing the child about his/her diagnosis and treatment plan is essential; research has shown that it is related to the patient's quality of life and adherence to medication.

METHODS: For 7 months during 2008 (February to September), 2 study-specific questionnaires were constructed and administered to 304 parents of children diagnosed with cancer at the Children's Cancer Hospital Egypt.

RESULTS: Among the 313 eligible parents of children diagnosed with cancer, 304 (97%) answered the first questionnaire and 281 (92%) answered the second questionnaire. We found that nearly three-quarters (72%) of the parents had their child's cancer diagnosis communicated by the physician. Among the 72%, the rate of the children present with the parent or parents during the disease disclosure conversation was 39% (n = 85/219). The majority of the children were in the age group 5-18 years (55%).

CONCLUSIONS: Our findings indicate that cancer disclosure at the Children's Cancer Hospital is to a certain degree common; yet even when disclosure does take place, it is mainly in the absence of the child. Moreover, the information provided during the conversation may not be fully comprehended by the parent or the child because of the physician's misleading use of terms when disclosing the disease. Therefore, better practice should be developed for disease disclosure, and proper communication should be established between the patients and the provider; patient autonomy should also have an influence in the clinical practice.

AIM: To investigate adherence to medical regimen and predictors for non-adherence among children with cancer in Egypt.

METHODS: We administered two study specific questionnaires to 304 parents of children diagnosed with cancer at the Children's Cancer Hospital in Cairo, Egypt, one before the first chemotherapy treatment and the other before the third. The questionnaires were translated to colloquial Egyptian Arabic, and due, to the high illiteracy level in Egypt an interviewer read the questions in Arabic to each parent and registered the answers. Both questionnaires consisted of almost 90 questions each. In addition, a Case Report Form was filled in from the child's medical journal. The study period consisted of 7 mo (February until September 2008) and we had a participation rate of 97%. Descriptive statistics are presented and Fisher's exact test was used to check for possible differences between the adherent and non-adherent groups. A P-value below 0.05 was considered significant. Software used was SAS version 9.3 for Windows (SAS Institute Inc., Cary, NC, United States).

RESULTS: Two hundred and eighty-one (90%) parents answered the second questionnaire, regarding their child's adherence behaviour. Approximately two thirds of the children admitted to their third chemotherapy treatment had received medical recommendations upon discharge from the first or second chemotherapy treatment (181/281, 64%). Sixty-eight percent (123/181) of the parents who were given medical recommendations reported that their child did not follow the recommendations. Two main predictors were found for non-adherence: child resistance (111/123, 90%) and inadequate information (100/123, 81%). In the adherent group, 20% of the parents (n = 12/58) reported trust in their child's doctor while 14 percent 8/58 reported trust in the other health-care professionals. Corresponding numbers for the non-adherent group are 8/123 (7%) for both their child's doctor and other health-care professionals. Almost all of the parents expressed a lack of optimism towards the treatment (116/121, 96%), yet they reported an intention to continue with the treatment for two main reasons, for the sake of their child's life (70%) (P = 0.005) and worry that their child would die if they discontinued the treatment (81%) (P < 0.0001).

CONCLUSION: Non-adherence to medical regimen is common among children diagnosed with cancer in Egypt, the main reasons being child resistance and inadequate information.

INTRODUCTION

• Swans and geese occur in larger numbers near more people than ever before, in Sweden as well as in Western Europe.

• Increasing populations sometimes lead to problems and conflicts. On agricultural land geese and swans can cause costly damage to growing crops. Intense grazing by these birds may also affect natural vegetation, sometimes leading to conflict with conservation and biodiversity goals.

• Geese and swans are obligate herbivores, consuming leaves, stems, seeds and root parts of terrestrial and aquatic plants.

• Grazing on growing crops may cause conflicts of interest also when geese and swans congregate in large numbers in wetlands adjacent to cropland.

• Geese and swans provide a multitude of ecosystem services, for example viewing, hunting, meat, and eco-tourism revenues.

GEESE AND SWANS AS VECTORS OF DISEASE

• A large number of disease agents has been recorded in geese and swans, viz. viruses, bacteria and unicellular parasites.

• Some of these have the capacity to infect other bird species and mammals.

• Geese and swans are highly mobile and often occur close to humans and in our agricultural landscape. As a consequence, they are sometimes suspected of transmitting disease to livestock and humans.

DISEASE TRANSMISSION TO LIVESTOCK AND HUMANS

• A recent review of the scientific literature demonstrates that geese and swans very rarely constitute a health hazard to humans, but slightly more often to livestock, especially poultry.

• Under some circumstances geese and swans may play a role as disease agents of the following diseases to livestock or humans: avian influenza, campylobacter, salmonella (mainly poultry) and bacteria carrying resistance towards antibiotics. However, in all cases other agents are more important for transmission than are geese and swans.

• There is no scientific evidence that geese and swans may act as transmitters of Newcastle virus, West Nile virus, botulism, psittacosis, or borrelia to livestock or humans.

• In the case of some disease agents, for example E. coli and cryptosporidia, it is still not known if geese and swans may transmit disease to livestock or humans.

• Climate change and a growing understanding of variation in occurrence and pathogenicity of different disease agents highlight a need for continued monitoring as well as a preparedness to re-evaluate their significance.

• There are no known disease transmission concerns related to livestock grazing alongside geese and swans, neither in pastures nor in shore meadows of wetlands.

• Despite the general conclusion that very small disease transmission risks are associated with geese and swans, it is prudent to adopt precautionary measures; e.g. to supply grazing livestock with water from wells, and to keep poultry separated from wild birds. From a human perspective, fencing can keep geese and swans from entering beaches, and where swimmers and birds use the same water, proper sanitation facilities and showers should be provided.

There are more herbivorous waterfowl (swans and geese) close to humans, livestock and poultry than ever before. This creates widespread conflict with agriculture and other human interests, but also debate about the role of swans and geese as potential vectors of disease of relevance for human and animal health. Using a One Health perspective, we provide the first comprehensive review of the scientific literature about the most relevant viral, bacterial, and unicellular pathogens occurring in wild geese and swans. Research thus far suggests that these birds may play a role in transmission of avian influenza virus, Salmonella, Campylobacter, and antibiotic resistance. On the other hand, at present there is no evidence that geese and swans play a role in transmission of Newcastle disease, duck plague, West Nile virus, Vibrio, Yersinia, Clostridium, Chlamydophila, and Borrelia. Finally, based on present knowledge it is not possible to say if geese and swans play a role in transmission of Escherichia coli, Pasteurella, Helicobacter, Brachyspira, Cryptosporidium, Giardia, and Microsporidia. This is largely due to changes in classification and taxonomy, rapid development of identification methods and lack of knowledge about host specificity. Previous research tends to overrate the role of geese and swans as disease vectors; we do not find any evidence that they are significant transmitters to humans or livestock of any of the pathogens considered in this review. Nevertheless, it is wise to keep poultry and livestock separated from small volume waters used by many wild waterfowl, but there is no need to discourage livestock grazing in nature reserves or pastures where geese and swans are present. Under some circumstances it is warranted to discourage swans and geese from using wastewater ponds, drinking water reservoirs, and public beaches. Intensified screening of swans and geese for AIV, West Nile virus and anatid herpesvirus is warranted.

Objectives: As part of the process of de-institutionalization in the Swedish mental healthcare system, a reform was implemented in 1995, moving the responsibility for services and social support for people with severe mental illness (SMI) from the regional level to the municipalities. In many ways, older people with SMI were neglected in this changing landscape of psychiatric care. The aim of this study is to investigate functional levels, living conditions, need of support in daily life, and how these aspects changed over time for older people with SMI.

Methods: In this study we used data from surveys collected in 1996, 2001, 2006, and 2011 and data from national registers. A group of older adults with severe persistent mental illness (SMI-O:P) was identified and divided into those who experienced shorter stays (less than 3 years) in a mental hospital (N = 118) and longer stays (N = 117).

Results: After correcting for longitudinal changes with age, the longer-stay group was more likely than the shorter-stay group to experience functional difficulties and as a result, were more likely to have experienced 're-institutionalization' to another care setting, as opposed to living independently.

Conclusions: The length of mental illness hospitalization has significant effects on the living conditions of older people with SMI and their ability to participate in social life.

Background: Reorganization and downsizing can disrupt a competent staff and conflicts can arise between what the employee is being asked to do and their knowledge and competences. Reduced job satisfaction among nursing home staff with increased workload and strain can occur. Aim and Objectives: The aim was to investigate the organizational climate and prevalence of burnout symptoms among caregivers over time in three Swedish nursing homes (NH I-III) undergoing organizational changes, while education and clinical supervision were provided. Design: The study design combines qualitative and quantitative methods in a longitudinal two-year follow-up project in NH I-III. Methods: Support through education and clinical supervision was provided for caregivers only at NH I and NH II. At NH I-III caregiver self-assessments and interviews were completed and analysed three different times. Results: NH I revealed improvement and increased innovation over time, while NH II showed a decline with no ability to implement new knowledge. NH III retained a more status quo. Conclusions: Organizational changes and cutbacks, occurring at different times, appeared to cause major stress and frustration among the three personnel groups. They felt guilty about not meeting their perceived obligations, seemed to have lost pride in their work but kept struggling. The changes seemed to over-shadow attempts to improve working conditions through education and clinical supervision initially. Implications for practice: It will be important to learn from reorganizations and the consequences they will have for the staff and quality of care. Important topics for future research are to study financial cutbacks and changes in organizational processes in care of older people to be able to develop a more person centered care for older people.

AIM: To explore patients' most distressing concerns during a hospital stay.

BACKGROUND: The characteristics of hospitalised patients have changed. Care is provided at a higher age, lengths of stay have fallen and the nursing workload is increasing. It is presumed that hospitalised patients are more seriously ill and have more palliative needs than previously. Studies show that inpatients suffer from more distress than similar outpatients although there is a lack of overall knowledge about inpatients' distress and major concerns, regardless of age, diagnosis or care setting.

METHODS: This study was part of a point prevalence survey (PPS) concerning symptom prevalence. Of the 710 patients who participated in the PPS, 678 (95%) answered an open-ended question in a questionnaire: What is your main concern or what is most distressing or troublesome for you at present? Using a life-world approach, the text was analysed qualitatively and patients' concerns were interpreted in two main dimensions, an intersubjective dimension and a temporal dimension.

FINDINGS: The patients reported extensive suffering due to illness, symptoms and failing health. Patients were concerned about family members, existential issues and the future. Three aspects of the patients' most distressing concerns were interpreted: The suffering self, The suffering person in close relations and The suffering person in a threatening world.

CONCLUSION: Hospitalised patients are affected by severe illness, distressing symptoms and existential quandaries, revealing extensive human suffering in the midst of the demanding activities that take place during an ordinary day in a hospital. To support patients and alleviate suffering, hospital staff need to be more sensitive to patients' most distressing concerns. This presupposes a hospital environment in which the value system supports caring and comforting behaviour.

Background: Sexuality is important for all individuals, then it is a part of the humans physical and mental needs. For older people regardless of sexual orientation (hetero– bi- gay) sexuality is important for the experience of a healthy life. Research shows that many of the older people just lack of love and a physical close contact. Patient ́s sexual expressions in the form of verbal and sexual acts sometimes creates anxiety among the care staff because of their lack of knowledge in this area. This is a problem too as it is the nursing staff tasked with helping to pay the society ́s negative image this topic with a positive image.

Aim: To highlight professional healthcarer ́s attitudes of older patient́s sexuality.

Methods: This project is a literature review where twelve scientific articles reviewed. The databases was CINAHL Plus With Full Text, Nursing and Allied Health Source, MEDLINE With Full Text and PubMed. The keywords was staff, nurse, nursing student, attitude, perceptions, experiences, barriers, perspektives, knowledge, older people, older adults, aged residential care, care, sexuality, sexual health.

Results: Sexual health is a complicated subject for professionals to deal with, discussions about sexual health issues have low priority and routines are not established for this. This result also revealed that health professionals are aware of older people ́s sexual needs but that they lack the skills to handle with its expression. Other influencing factors include age, gender, religion and origin.

Method – discussion: There are both strength and weaknesses with the selected method. For all involved articles the weaknesses can be that they were written in English, which may lead to misinterpretation when this is not the author ́s native language. What can be both a strength and weakness is that the articles include various participating countries.

Result – discussion: In the result it was concluded that older peoples sexuality is not a priority in health care and a major influencing factor in this may be that health professionals lack the specialist training include older people and sexuality. The healthcare environment is in most cases not suitable for the elderly to express their sexuality.

There is limited empirical knowledge about how older adults living with dementia enact their social citizenship through out-of-home participation. This study aimed: (a) to investigate out-of-home participation among older adults with and without dementia in four countries and (b) to compare aspects of stability or change in out-of-home participation. Using a cross-sectional design, older adults with mild-to-moderate dementia and without dementia, aged 55 years and over, were interviewed using the Participation in ACTivities and Places OUTside the Home questionnaire in Canada (n = 58), Sweden (n = 69), Switzerland (n = 70), and the United Kingdom (n = 128). Data were analyzed using descriptive statistics and a two-way analysis of variance. After adjustment for age, diagnosis of dementia and country of residence had significant effects on total out-of-home participation (p < .01). The results contribute to policies and development of programs to facilitate social citizenship by targeting specific activities and places.

PURPOSE: To assess children's trust in the care provided to a dying parent during the final week of life in relation to end-of-life medical information about disease, treatment, and death.

METHODS: This nationwide population-based survey included 622 (73%) of 851 youths who, 6 to 9 years earlier, at age 13 to 16 years, lost a parent to cancer. We asked about the children's reception of end-of-life professional information and trust in the care provided. We also asked about depression and several potential risk factors of distrust in the care provided.

RESULTS: A majority (82%) reported moderate/very much trust in the care provided. Compared with children who received end-of-life medical information before their loss, the risk of distrust in the care provided was higher in those who received no information (risk ratio [RR], 2.5; 95% CI, 1.5 to 4.1), in those who only received information afterward (RR, 3.2; 95% CI, 1.7 to 5.9), and in those who did not know or remember if end-of-life medical information was provided (RR, 1.7; 95% CI, 1.1 to 2.5). Those reporting distrust in the care provided had an RR of 2.3 (95% CI, 1.5 to 3.5) for depression. Furthermore, the risk of distrust in the care provided was higher among children reporting poor efforts to cure (RR, 5.1; 95% CI, 3.6 to 7.3), and/or a poor relationship with the surviving parent (RR, 2.9; 95% CI, 2.0 to 4.1).

CONCLUSION: Our study suggests that children's trust in the care provided to a dying parent was highest when they received end-of-life medical information before their loss.

Purpose: To explore how women experience living with long-term pregnancy-related pelvic girdle pain.

Materials and methods: Nine women with persistent pregnancy-related pelvic girdle pain of 2–13 years were recruited by means of purposive sampling from long-term follow-up studies. The women were 28–42 years of age and had given birth to 2–3 children. Audio-taped in-depth interview with open-ended questions were used with the guiding question 'How do you experience living with pregnancy-related pelvic girdle pain?'. The Empirical Phenomenological Psychological method was chosen for analysis.

Results: The pregnancy-related pelvic girdle pain syndrome has a profound impact on everyday life for many years after pregnancy. Three constituents were identified as central to the experience of living with pregnancy-related pelvic girdle pain: (1) the importance of the body for identity, (2) the understanding of pain, and (3) stages of change. The manner in which the women experienced their pain was interpreted in terms of two typologies: the ongoing struggle against the pain, and adaptation and acceptance.

Conclusion: The participants’ narratives highlighted that the pain led to severe functional limitations that threatened their capability to perform meaningful daily activities, and interfered with their sense of identity. It appears essential to meet with each patient individually and to manage long-term pregnancy-related pelvic girdle pain as a pain syndrome.

IMPLICATIONS FOR REHABILITATION

Chronic pregnancy-related pelvic girdle pain

• Pregnancy-related pelvic girdle pain impairs women’s capacity to perform meaningful activities of daily life for many years after pregnancy.
• The participants’ narratives highlighted that the pain interfered with their sense of identity.
• It appears essential to meet with each patient individually and to manage long-term pregnancy-related pelvic girdle pain as a pain syndrome.

För att personer med demenssjukdom ska kunna leva ett fullgott liv behövs mer kunskap. I grunden handlar det om att förändra föreställningar och attityder till personer som lever med en demenssjukdom så att personerna själva, deras anhöriga och personal inom hälso- och sjukvården och politiker, kan se nya möjligheter i stället för enbart förluster. I den här boken presenteras kunskap och forskning som sätter personer med demenssjukdom i centrum. Boken utgår alltså inte i första hand från vården eller anhöriga, utan från dem som lever med sjukdomen. På så sätt skapas en tankeram som ger stöd vid både utvecklingsarbete och reflektion bland människor som på olika sätt arbetar med och för personer med demenssjukdom.

Cirka 110 000 och 170 000 svenskar har i dag en demenssjukdom. Om ett tiotal år är det betydligt fler: ökad livslängd och en större medvetenhet om demenssjukdomar gör att allt fler personer får en diagnos tidigt i förloppet. Som en konsekvens av detta kommer alltfler personer att leva med en demenssjukdom under lång tid, och ofta i hemmet. Detta innebär inte bara en utmaning för vård, omsorg och socialpolitik, utan väcker också frågor som berör såväl personer med demens, som anhöriga och andra i det sociala nätverket: Hur kan personer med demens leva och fungera i sitt hem tillsammans med eventuella familjemedlemmar? Hur kan de fungera som medborgare och delta i samhällslivet, ha makt över sitt eget vardagsliv och fatta egna beslut om sitt eget liv?

I boken medverkar forskare från Centrum för demensforskning (CEDER) vid Linköpings universitet. Den innehåller många pedagogiska exempel och riktar sig till utbildningar inom vård, omvårdnad, socialt arbete och omsorg.

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.

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.

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. © 2014 Wiley Periodicals, Inc.

Sweden was the first country in the world banning corporal punishment in 1979, protecting children’s physical and mental integrity. Forty years later, this fundamental view on children’s rights, respecting the child’s integrity, has not had any effect in Swedish health and medical care when children are patients. In this article, children’s rights when the child is a patient will be discussed in relation to the Swedish Patient Act (pa, 2014:81) and the advocacy role of Swedish patient organisations. It is shown that children’s rights in the Patient Act are constructed based on the child patient as deviant and subordinated to adult patients and parental rights, making not only the child’s voice subject to valuation by adults, but also the child’s integrity. Further, the patient organisations, acting as advocates for different patient groups in the legislative process, stay silent on issues concerning child patients’ basic human rights.

BACKGROUND: Loss of a child to malignancy is associated with long-term morbidity among surviving parents. This study aims to identify particular sources of stress among parents of children with severe malignancy.

METHODS: We attempted to contact all parents in Sweden who lost a child to cancer between 1992 and 1997. Some 449 parents answered an anonymous questionnaire, including a question regarding whether they ever thought that death would be best for the child with severe malignancy.

RESULTS: Mothers whose children were unable to communicate during their last week of life were more likely to think that death would be best for the child (relative risk (RR): 1.6; 95% confidence interval (CI): 1.2-2.1). Fathers whose children faced six years or more with malignancy were more likely to think that death would be best for their child (RR: 2.1; 95% CI: 1.3-3.5).

CONCLUSIONS: The inability of the child with severe malignancy to communicate increases the likelihood of mothers thinking that death would be best for the child, while longer duration of the child's illness increases the occurrence of this thought among fathers.

We have investigated whether hematopoietic stem cell transplantation (HSCT) before the death of children with cancer has a long-term effect on the physical and psychological well-being of the parents. A nationwide questionnaire was sent out to all bereaved parents in Sweden who had lost a child due to a malignancy from 1992 to 1997. Self-reported levels of anxiety, depression and quality of life as well as overall psychological and physical well-being in bereaved parents of children who underwent HSCT were compared with bereaved parents whose children did not receive a transplant. Bereaved parents whose children underwent HSCT had, according to a visual digital scale, an increased relative risk (RR) of long-term anxiety (RR 1.5; 95% confidence interval (CI) 1.0-2.1), poor psychological well-being (RR1.3; 95% CI 1.1-1.5), low quality of life (RR 1.4; 95% CI 1.2-1.7) and poor physical health (RR 1.3; 95% CI 1.1-1.5), whereas the State-Trait Anxiety Inventory and 'The Göteborg Quality of Life Instrument' were non-significantly increased (RR 1.3; 95% CI 0.8-2.3 and RR 1.7; 95% CI 0.9-3.3, respectively). The risks of these consequences were further augmented in case of multiple HSCT. We suggest that bereaved parents of children undergoing HSCT may be at greater risk of decreased psychological well-being than other bereaved parents of children with cancer.

AIM: To estimate whether and when children dying from a malignancy are recognized as being beyond cure and to study patterns of care the last weeks of life.

METHODS: A nationwide retrospective medical record review was conducted. Medical records of 95 children (60% of eligible children) who died from a malignancy 2007-2009 in Sweden were studied.

RESULTS: Eighty-three children (87%) were treated without curative intent at the time of death. Children with haematological malignancies were less likely to be recognized as being beyond cure than children with brain tumours [relative risks (RR) 0.7; 95% confidence interval (CI) 0.6-0.9] or solid tumours (RR 0.8; 0.6-1.0). The transition to noncurative care varied from the last day of life to over four years prior to death (median 60 days). Children with haematological malignancies were treated with a curative intent closer to death and were also given chemotherapy (RR 5.5; 1.3-22.9), transfusions (RR 2.0; 1.0-4.0) and antibiotics (RR 5.3; 1.8-15.5) more frequently than children with brain tumours the last weeks of life.

CONCLUSION: The majority of children dying from a malignancy were treated with noncurative intent at the time of death. The timing of a transition in care varied with the diagnoses, being closer to death in children with haematological malignancies.

Open and honest communication has been identified as an important factor in providing good palliative care. However, there is no easy solution to if, when, and how parents and a dying child should communicate about death. This article reports how bereaved parents communicated about death with their child, dying from a malignancy. Communication was often initiated by the child and included communication through narratives such as fairy tales and movies and talking more directly about death itself. Parents also reported that their child prepared for death by giving instructions about his or her grave or funeral and giving away toys.

BACKGROUND: We studied the relation between unrelieved symptoms in terminally ill children and the psychological well-being in the bereaved parents 4-9 years after their loss.

PROCEDURE: We contacted parents in Sweden who had lost a child to a malignancy 1992-1997. The parents were asked to assess symptoms affecting their child's well-being during his or her last month of life, and their own current psychological well-being.

RESULTS: Altogether 449/561 (80%) eligible parents supplied information on 19 specific symptoms that may occur in children with a malignancy and how each of these symptoms had affected their child's well-being during his or her last month of life (not applicable, none, low, moderate, or severe). These results were linked to questions concerning the parents' self-assessed mental health. Parents of children who were affected by disturbed sleep also had increased risk to develop these symptoms; RR 2.0 [1.4-2.9] for depression, 1.8 [1.3-2.5] for anxiety, 1.5 [1.2-1.8] for decreased psychological well-being, and 1.5 [1.3-1.9] for decreased quality of life.

CONCLUSIONS: Bereaved parents whose children were affected by anxiety or disturbed sleep due to anxiety or pain had an increased risk of long-term psychological morbidity. Reducing psychological complications in seriously ill children may also improve the psychological well-being in bereaved parents.

OBJECTIVE: In a population-based nationwide survey, we aimed to study symptoms in children with malignancies during the last month of their lives. Understanding which symptoms affect children in the terminal phase of disease is crucial to improve palliative care.

METHODS: We attempted to contact all parents in Sweden who had lost a child to cancer during a 6-year period. The parents were asked, through an anonymous postal questionnaire, about symptoms that affected the child's sense of well-being during the last month of life.

RESULTS: Information was supplied by 449 (80%) of 561 eligible parents. The symptoms most frequently reported with high or moderate impact on the child's well-being were: physical fatigue (86%), reduced mobility (76%), pain (73%), and decreased appetite (71%). Irrespective of the specific malignancy, physical fatigue was the most frequently reported symptom, and pain was among the 3 most frequently reported. Children who died at 9 to 15 years of age were reported to be moderately or severely affected, by a number of symptoms, significantly more often than other children. The gender of the reporting parent had no significant bearing on any of the symptoms reported.

CONCLUSIONS: The most frequently reported symptoms in children with malignancies to be aware of and possibly address during the terminal phase are physical fatigue, reduced mobility, pain, and decreased appetite. Children aged 9 to 15 years are reported to be moderately or severely affected by more symptoms than children in other age groups. Mothers and fathers report a similar prevalence of symptoms.

AIM: One in five children diagnosed with cancer will die from the disease. Few studies have focused on how children with cancer want to receive bad news, such as when no more treatment options are available, and that was the aim of this study.

METHODS: We conducted individual interviews with ten children with cancer, aged seven to 17 years, at a single paediatric oncology unit in central Sweden. Interviews were audiotaped 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.

RESULTS: All 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.

CONCLUSION: Children 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. This article is protected by copyright. All rights reserved.

Older people ageing with severe mental illness (SMI) usually fall in between mental health care and old age care services. The role of informal care in filling this gap is recognized. The role of other welfare providers, such as voluntary organizations, is unclear. The aim of this article is to analyze and discuss local voluntary organizations' ability to recognize and respond to the needs of older people with SMI in the community.

11 local organizations focusing on mental illness, social care or old age were identified in a mid-sized Swedish city. Seven voluntary organizations participated in the study.

Our analysis revealed three overarching themes: 'Age as a non-issue?', 'Public and voluntary sector (non)links' and 'organizational vulnerabilities'. Our results show that older people with SMI are to some extent also invisible in the voluntary sector. We were also able to discern differences in the 'we-for-us' organizations that provide support for their own members with SMI, and 'we-for-them' organizations that provide help to a broader group.

Overall, older people with SMI remain a relatively invisible as a group for the voluntary organizations. We discuss these findings in relation to the specificity of the group and welfare contexts of voluntary work in communities.

DN DEBATT 27/12.

Forskarna Hanna Karlsson och Johan Vamstad: Inför nationella riktlinjer till landets regioner.

Antalet personer som lever med skyddad identitet har nästan ­fördubblats på tio år. Men denna växande grupp får inte tillgång till ­sjukvård på samma sätt som andra eftersom deras identitet inte alltid skyddas i vården.