Place of death among children from 0 to 17 years of age: A population-based study from Sweden.

AIM: The aim of this study is to contribute to the development of paediatric palliative care by investigating, on a population basis, where children in Sweden died, from 2013 to 2019. A particular focus was on comparing two groups: children who died during their first year of life with children who died at 1-17 years of age. METHODS: We hypothesised that there might be variations in place of death between the defined groups. Utilising national registry data, descriptive statistics were used to assess the distribution and variations in the place of death. Logistic regression analyses were conducted to ascertain the impact of associated factors. RESULTS: Most children died in hospitals (74.7%). The hypothesis postulating divergences in the place of death between age groups was not substantiated. Sex and birthplace showed no significant differences in home deaths. Deaths due to malignancies had a relatively high likelihood of occurring at home (39.0%). For perinatal diagnoses, the incidence of home deaths was relatively low (1.5%). CONCLUSION: Children who received support from a specialist palliative service in their own homes were notably less likely to die in a hospital setting compared to those who did not receive such support. An unplanned hospital visit increased the likelihood of hospital death.

Deconstructing spiritual care: Discursive underpinnings within palliative care research.

Religion and spirituality are integral to the philosophy of palliative care, shaping its approach to spiritual care. This article aims to examine the discourses within palliative care research to illuminate prevailing assumptions regarding spiritual care. Eighteen original articles were analyzed to examine how spiritual care is understood within palliative care. The analysis, informed by Foucault, aimed to identify recurring discourses. The finding reveals that, in palliative care research, spirituality is viewed as enigmatic yet inherently human and natural, assuming that every individual has a spiritual dimension. The analysis points to healthcare professionals being expected to hold certain qualities to put spiritual care into practice. The analysis also reveals that in the analyzed articles, the concept of spiritual care is rooted in a Christian context, with the belief that all individuals possess inherent spirituality or religiosity, a concept often associated with Christian theology. The included articles often utilize theological terms and emphasize a monotheistic viewpoint. Spirituality is articulated as a complex, distinct concept, challenging clear definitions and professional responsibilities. Further, a moral formation of healthcare professionals is described, interpelling and ascribing qualities that healthcare professionals need to provide spiritual care.

Patients' long-term perspectives on gains and losses after temporal lobe resection for epilepsy.

OBJECTIVE: To investigate long-term (>10 years) experiences and overall satisfaction with temporal lobe resections (TLB) for epilepsy. METHODS: Eligible participants were identified through the administrative epilepsy surgery registry at Oslo University Hospital. Data were collected through individual, semi-structured interviews with fifty participants. Interview records were analyzed using reflexive thematic analysis. RESULTS: Participants' answers were divided into two main themes: "looking back on surgery" and"considering gains and losses from surgery". Most participants expressed satisfaction with having undergone surgery. Nevertheless, postsurgical problems had been encountered, and presurgical hopes had only partly been fulfilled. They described memory and naming problems with a major impact on daily life. Further, they had thoughts about effects on employment, independence, and feelings of loneliness, and expressed a need for more and better preoperative information. CONCLUSIONS: Presurgical hopes go beyond seizure freedom and memory and naming problems are experienced lasting many years after surgery in the temporal lobe. Better preoperative information, particularly about unwanted cognitive effects, is of prime importance. By exploring patients presurgical hopes, a common ground for expectations on surgery may be found along with strategies on how to cope with cognitive difficulties and possible negative life changes.

Quality of life in patients with glioblastoma and their relatives.

OBJECTIVES: Glioblastoma is the most aggressive primary brain tumour in adults. The rapid decline of physical and cognitive functions is likely to affect patients and relatives during the entire course of disease. The aim of this study was to describe and compare (a) health-related quality of life (HRQoL) and psychological symptoms between patients with glioblastoma and their relatives, and (b) HRQoL between patients and a general population over time. METHODS: At baseline, 63 patients and 63 relatives were included. The participants completed the Short Form Health Survey (SF-36) and the Hospital Anxiety and Depression scale (HADS) at seven different occasions from pre-surgery until two years post-surgery. A comparison of SF-36 was made between patients and an age- and gender-matched control group. Descriptive analysis, effect size and Wilcoxon signed-rank test were used. RESULTS: Relatives scored lower health-related quality of life (HRQoL) and higher symptoms of anxiety than patients, whilst patients scored worse in the physical parts of the SF-36. Three weeks post-surgery, relatives scored their lowest HRQoL and had the highest risk of anxiety symptoms. Comparing patients with controls, the patients rated worse in both the mental and physical component summaries in HRQoL at most time points. CONCLUSION: Both patients and relatives showed deterioration of HRQoL. In addition, relatives showed high frequency of anxiety symptoms. Our data reveal that relatives of patients with glioblastoma need attention throughout the disease trajectory and they also need support at the right time point.

Perceived stigma in adults with epilepsy in Sweden and associations with country of birth, socioeconomic status, and mental health.

BACKGROUND: Stigma contributes to negative health outcomes and amplifies health disparities in epilepsy. This study aimed to investigate associations of perceived stigma with the country of birth and socioeconomic status (SES). METHODS: This is a cross-sectional questionnaire study. Participants were recruited consecutively from three demographically different neurology outpatient clinics in the southwest of Sweden. Participants responded to a questionnaire concerning their epilepsy, country of birth, mother tongue, and different SES-variables. The Neuro-QOL stigma scale and the Jacoby stigma scale were applied to assess stigma and the Hospital Anxiety and Depression Scale (HADS) and PROMIS Mental Health scale were applied to assess mental health. RESULTS: In total 161 adults with epilepsy were included in the cohort. The median Neuro-QOL stigma score was 48.3, and was higher among foreign-born than in native-born participants (foreign-born in non-European country 52.3, in other European country 49.8, and in native-born 47.0, p = 0.003). Other factors associated with Neuro-QOL were seizure frequency last year (≥2 seizures 52.4 compared to 1 seizure 50.9 and no seizures 44.3, p < 0.001), having had seizures in public (yes 50.9 compared to no 44.7, p = 0.035), HADS depression score ≥11 (57.4 compared to 47.8 for score <11 points, p < 0.001), HADS anxiety score ≥11 (53.5 compared to 46.8 for score <11 points, p < 0.001), and lower PROMIS Mental Health score (42.9 for PROMIS < 40 compared to 54.4 for PROMIS > 60, p < 0.01). A stepwise multiple regression analysis indicated that having had seizures the last year increased the average Neuro-QOL stigma score with 5.89 and appeared as the most determining factor for the Neuro-QOL stigma score among the variables investigated. CONCLUSIONS: It is important that the concerns of foreign-born patients are acknowledged and that the focus of seizure control and the detection and treatment of comorbidities are prioritized in the management of epilepsy and perceived stigma.

Strategies for knowledge translation of a palliative approach outside specialized palliative care services: a scoping review.

OBJECTIVES: Research suggests palliative care to be translated and integrated in non-specialized palliative care services throughout the palliative care continuum across populations and settings. A need has been identified to build on the existing research literature in order to design strong knowledge translation strategies that can be evaluated in future research. The aim was to map strategies for knowledge translation of a palliative approach to care into non-specialized palliative care services for adult patients. The objectives were to explore the primary research activities, the specific type of knowledge translation strategies used, the research designs and study settings for such evaluations along with the major results thereof, and to identify major research gaps in this area. METHODS: A scoping review was performed to map the volume and characteristics of research literature (project registered in PROSPERO #2018 CRD42018100663). The ten-year period 2010 to 2019 was searched in six major databases for original articles published in English in which the knowledge translation of a palliative approach for adult patients was evaluated in non-specialized palliative healthcare settings, and all type of empirical data-based research designs. We excluded non-English, non-empirical articles, non-evaluation of knowledge translations, specialized palliative care settings, and other types of publications (i.e. non-original articles). RESULTS: Most of the 183 included articles focused on patients with cancer who were dying in hospitals and in high income countries. Only 13 articles focused on early palliative care. A palette of different strategies was used to implement palliative care in non-specialist palliative settings; no strategy was identified as outstanding. The majority of the articles had unspecified essential components of the research designs. CONCLUSION: Previous suggestions for utilization of implementation science for knowledge translation of a palliative approach to care into non-specialized palliative care services are confirmed, and established knowledge translation theories can strengthen the field. To advance this specific field of knowledge, meticulously detailed reporting of studies is required as related to research designs, clarifications of contextual influences and mechanisms at work. Specific systematic reviews and meta-syntheses in the field are merited.

Quality of life among relatives of patients with amyotrophic lateral sclerosis: A prospective and longitudinal study.

OBJECTIVE: Relatives are often central in caring for patients with amyotrophic lateral sclerosis (ALS), involving considerable physical, emotional, and social challenges. The aim of this study was to describe individual quality of life (iQoL) among relatives of patients with ALS, from diagnosis through disease progression. METHOD: A total of 31 relatives were included. Data collection was performed at five time points: 1-3 months after their relatives had been diagnosed with ALS and every 6 months for 2 years. Quality of life was determined using the Schedule of Evaluation of Individual Quality of Life - Direct Weighting (SEIQoL-DW), emotional distress with the Hospital Anxiety and Depression Scale (HADS), and the illness severity of the patients was determined with the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALS FRS-R). RESULTS: The SEIQoL-DW involves participants nominating the important life areas. The most nominated areas were family, friends, health, and leisure. Although most relatives had overall good and stable iQoL, several had scores indicating poor iQoL on some occasions during the disease trajectory. The relatives' iQoL correlated with emotional well-being and the patient's physical function at different time points. SIGNIFICANT OF RESULT: Social relations, emotional well-being, and rapid decline in the patient's physical function influence the relatives' iQoL. Measuring both emotional well-being and iQoL, with a focus on the relatives' own descriptions of perceived iQoL and those factors contributing to their iQoL during the disease trajectory may improve the possibility of identifying and supporting those relatives with poor iQoL.

Valproic acid and socioeconomic associations in Swedish women with epilepsy 2010-2015.

OBJECTIVE: We investigated the correlation between socioeconomic status and the prescription of Valproic acid (VPA) in women of fertile age in Sweden. METHODS: This is a registered-based cohort study including all women living in Sweden aged 18-45 years in the years 2010-2015, with a diagnosis of epilepsy and no intellectual disability (n = 9143). Data were collected from the National Patient Register, the Drug Prescription Register, and the Longitudinal integration database for health insurance and labor market studies (LISA). RESULTS: Women with only 9 years of school were more often prescribed VPA than women with a University degree (12.9% compared to 10.7% in 2015 [p = 0.015]). Similar differences were seen between the lowest and highest income group (16.6% compared to 12.7% in 2015 [p < 0.001]). The odds of having a VPA prescription in 2015 was 1.59 (p < 0.001) in women with 9 years of school compared to women with a University degree, and 1.60 (p < 0.001) in the lowest income group relative to the highest income group after adjusting for age. From 2010 to 2015, the proportion with VPA prescription in the whole cohort diminished with an absolute reduction of -2.2% (p < 0.001). The decrease was similar among the different education and income groups (p = 0.919 and p = 0.280). SIGNIFICANCE: The results indicate that the increased knowledge on VPA teratogenicity was implemented across socioeconomic strata in the Swedish healthcare system. Women with lower income or education level remained more frequent VPA users. Whether this difference reflects epilepsy type or severity, or socioeconomic disparities, merit further study.

Multiple stigma among first-generation immigrants with epilepsy in Sweden.

OBJECTIVES: To investigate the meaning of stigma among first-generation immigrants with epilepsy in Sweden. METHODS: Data were collected by individual face-to-face interviews with 25 first-generation immigrants with epilepsy from 18 different countries. Interviews were recorded, transcribed verbatim, and analyzed systematically using a hermeneutic approach. RESULTS: Multiple aspects of stigma were associated with epilepsy, immigration, and socioeconomic deprivation. The main theme "It is a fight to be appreciated as a person and member of society" illuminated the meaning of stigma in the struggle with a negative self-image and strategies to build self-confidence. The seizure-related fears were amplified by language barriers and a lack of knowledge of the healthcare system that obstructed access to health care. Few close relatives nearby or misconceptions of epilepsy in the family resulted in a lack of support. The stigma of being an immigrant and of socioeconomic deprivation resulted in feelings of being unvalued by the society in addition to feelings of being unvalued in relationships and at work because of epilepsy. The social isolation experienced as a result of immigration was increased due to the presence of perceived stigma due to epilepsy which led people to stay at home in order to conceal their epilepsy. At the same time, to inform others about their epilepsy could reduce seizure-related fears. Employment appeared as a symbol of being a capable person and helped participants gain self-confidence. CONCLUSIONS: Barriers to access health care and the exposure to multiple stigma can result in increased seizure-related fears, social isolation, and a lack of support for immigrants with epilepsy. In the context of epilepsy and immigration, stigma was intricately connected to how people perceived themselves as capable and contributing members of society. To reduce the negative influence of stigma, employment appeared vital to build self-confidence and break social isolation. Investigating the patient's experience of stigma may provide healthcare professionals with valuable information on the need for support and priorities in epilepsy management. Public efforts to increase knowledge about epilepsy also among first-generation immigrants would be valuable.

Experiences of emotional and psychosocial functioning after frontal lobe resection for epilepsy.

PURPOSE: Frontal lobe resection (FLR) is the second most common epilepsy surgery procedure in adults. Few studies address neuropsychological consequences after FLR. The aim of this study was to explore patients' and relatives' experiences of cognitive, emotional and social cognitive functioning after frontal lobe epilepsy surgery. METHODS: Semi-structured interviews were held with 14 patients having gone through FLR as adults during the years 2000-2016 and 12 of their relatives. Interviews were audio-recorded, transcribed and analyzed with inductive qualitative content analysis. RESULTS: Positive as well as negative consequences were described both by patients and relatives. Feelings of relief and an increased capacity to experience emotions of well-being were mainly experienced as related to seizure freedom. A newfound autonomy and a more grown-up identity as opposed to a self-image based on epilepsy was also highlighted. However, results also showed that even for seizure free patients, FLR could give rise to negative experiences, the most prominent of which were mental fatigue, lowered mood and social withdrawal. Coping strategies included planning ahead to avoid mental exhaustion. Over all, respondents considered that the epilepsy surgery had been a risk well worth taking and that positive consequences outweighed the negative ones. CONCLUSIONS: This study shows a range of positive as well as negative outcomes after FLR for epilepsy. The findings indicate that lowered mood and mental fatigue could affect the life situation in a negative way, regardless of seizure outcome. This is important to consider in the preoperative counselling of patients and their families, as well as in the postsurgical follow-up. It is also crucial that the epilepsy surgery team has the possibility to offer rehabilitation and support to families regarding these aspects after surgery.

Shared decision-making in neurosurgery: a scoping review.

BACKGROUND: In modern neurosurgery, there are often several treatment alternatives, with different risks and benefits. Shared decision-making (SDM) has gained interest during the last decade, although SDM in the neurosurgical field is not widely studied. Therefore, the aim of this scoping review was to present the current landscape of SDM in neurosurgery. METHODS: A literature review was carried out in PubMed and Scopus. We used a search strategy based on keywords used in existing literature on SDM in neurosurgery. Full-text, peer-reviewed articles published from 2000 up to the search date February 16, 2021, with patients 18 years and older were included if articles evaluated SDM in neurosurgery from the patient's perspective. RESULTS: We identified 22 articles whereof 7 covered vestibular schwannomas, 7 covered spinal surgery, and 4 covered gliomas. The other topics were brain metastases, benign brain lesions, Parkinson's disease and evaluation of neurosurgical care. Different methods were used, with majority using forms, questionnaires, or interviews. Effects of SDM interventions were studied in 6 articles; the remaining articles explored factors influencing patients' decisions or discussed SDM aids. CONCLUSION: SDM is a tool to involve patients in the decision-making process and considers patients' preferences and what the patients find important. This scoping review illustrates the relative lack of SDM in the neurosurgical literature. Even though results indicate potential benefit of SDM, the extent of influence on treatment, outcome, and patient's satisfaction is still unknown. Finally, the use of decision aids may be a meaningful contribution to the SDM process.

Health-related quality of life and emotional well-being in patients with glioblastoma and their relatives.

PURPOSE: The health-related quality of life (HRQoL) for patients with glioblastoma is known to be largely affected. Little is known about the HRQoL for relatives and the relationship between these two. To optimize family care, such issues need to be addressed early on, preferably from the time of diagnosis. This study aimed to describe and compare the HRQoL of patients with glioblastoma and their relatives before surgery. METHODS: A prospective cohort study including 89 patients diagnosed with glioblastoma and their relatives. HRQoL (Short Form Health Survey, SF-36) and emotional well-being (hospital anxiety and depression scale, HADS) were analysed with descriptive, comparative and multivariable regression analyses. RESULTS: Relatives scored worse for mental HRQoL (p < 0.001) and for symptoms of anxiety (p < 0.001) and depression (p = 0.022) compared to patients. The multivariable regression showed an increased risk of affected mental HRQoL in relatives of patients with poor functional status (WHO) (p = 0.01) and higher levels in symptoms of anxiety (p = 0.03), or when relatives had low physical HRQoL themselves (p = 0.01). There was increased risk of affected mental HRQoL in patients with comorbidities (p = 0.003), and when the respective relative showed higher levels in symptoms of anxiety (p = 0.005). CONCLUSION: Relatives scored worse for mental HRQoL and emotional well-being than patients, suggesting that HRQoL in patients and relatives might be connected to symptoms of anxiety in the respective individual at disease onset. The results illustrate the need to screen HRQoL and emotional well-being in both patients and relatives from an early stage-before surgery.

To make and execute decisions throughout life: A person-centred model that facilitates self-determination in residential care, developed through participatory research.

AIM: The aim of the study was to develop a model that facilitates self-determination in residential care. BACKGROUND: The right to decide on one's own life is self-evident to most adult persons. Nevertheless, dependency on others and the routine-based care that sometimes is provided in residential care, limit the residents' possibilities of self-determination. METHODS: The study had a participatory research design using appreciative inquiry in focus group discussions with staff, residents, and care managers. The research process and the model were audited by two expert groups: a scientific reference group and a dementia-specialist reference group. A theoretical framework of relational autonomy and person-centred care was also used. RESULTS: By combining practical and theoretical knowledge, the model "To make and execute decisions throughout life" was developed. The core message of "In my way, at my pace, with the help of you" was reinforced by the categories "See me as a competent person", "Show me professional consideration", "Meet me in a trustful relationship", "Give me opportunity to a meaningful and safe day", "Support me in being independent", "Let me have power over my own life", and "Help me to plan my end-of-life care". CONCLUSION: The model "To make and execute decisions throughout life" provides a base for a person-centred approach to care. By reflecting on the core message and the different categories in the model, staff can be inspired to see their own contribution to the residents' self-determination and find ways to facilitate it despite the many obstacles.

Residents' and family members' perceptions of care quality and self-determination in palliative phase in residential care.

OBJECTIVE: Dependency on others can compromise self-determination for older persons in the palliative phase in residential care. Family members can support the residents' self-determination but may also jeopardize it. Quality of care (QoC) is linked to respecting the autonomy of the residents and providing opportunities to participate in decision-making. The aim of the study was to provide knowledge about residents' and family members' perceptions of QoC and self-determination and to detect possible differences between their experiences. METHOD: This cross-sectional study used an abbreviated version of the questionnaire, Quality from the Patients' Perspective, with additional items about decision-making. Wilcoxon's signed rank test was used to analyze the perception of QoC and to detect differences between residents' and family members' perceptions. RESULT: QoC was perceived as lower than preferred in the majority of items and there was a high level of agreement between residents and family members. Lowest mean values in QoC were found in: support when feeling lonely; support when feeling worry, anxiety or fear; and staff's time to talk to the residents. Decision-making in everyday life and in life-changing situations showed that neither residents nor family members trusted staff to know about the residents' preferences. SIGNIFICANCE OF RESULTS: Broad improvements are needed, especially in psychosocial care. Several of the negative outcomes on QoC and self-determination seem to derive from a focus on practical tasks and the lack of trustful relationships between residents and staff. An early implementation of palliative care, with a focus on what brings quality to each resident's life, could facilitate QoC and self-determination, in both everyday life and at the end of life.

Callosotomy in children - Parental experiences reported at long-term follow-up.

Callosotomy is a palliative surgery method for selected individuals with severe, drug-resistant epilepsy. The aim of this retrospective study was to explore parental experiences of the family's life situation before and long after their child had undergone callosotomy. Semistructured interviews of the parents of 12 children were analyzed using a combination of inductive and deductive qualitative content analysis. Before surgery, parents felt that they lived in a chaotic bubble with an unbearable situation; their child had severe and frequent seizures and had to be looked after constantly. Most parents were both satisfied and dissatisfied with the given support and information. However, if the child did not improve after surgery, parents often felt that the information before surgery had not been adequate. After surgery, they found a glimpse of hope. They felt that the family got a new life; the reduced seizure severity led to a better life situation for the family. The support was described as both good and poor. The family life situation was complex, and even if they were partly satisfied with the support, it was still not enough. However, the life situation was also very stressful because of remaining seizures, behavioral problems, and sometimes, adverse effects of surgery. The families lived in disappointment and difficulty and had to fight for their rights. This indicates that these families need more information and social service coordination both before and long after surgery. They need not only tools to manage the child's disabilities but also substantial help to care for the child and to receive the social support they need.

Understanding the incomprehensible - patients' and spouses' experiences of comprehensibility before, at and after diagnosis of amyotrophic lateral sclerosis.

BACKGROUND: Previous studies have examined manageability and meaningfulness in amyotrophic lateral sclerosis (ALS), but there is a lack of studies examining the comprehensibility of ALS among patients and their spouses. AIM: This qualitative retrospective study aimed to illuminate patients' and spouses' experiences of comprehensibility in ALS from a long-term perspective, when symptoms appeared before diagnosis, and when the diagnosis was given and in life after diagnosis. METHODS: Individual semi-structured interviews with 14 patients and 13 spouses were performed. The transcribed interviews were subjected to qualitative content analysis. FINDINGS: Through the whole disease process, patients and spouses feared the unknown regardless of whether they comprehended the disease or not. They described that they before diagnosis felt uncertainty. It was problematic to comprehend what was wrong and what the deterioration implied. At the diagnosis, they described feelings of losing their foothold. Long-term after diagnosis, they still lived in fear and looked for reasons why they were afflicted. CONCLUSIONS: Findings of similar experiences in comprehensibility between patients and spouses strengthen the importance of support and information to both parties. Since they hovered between comprehensibility and incomprehensibility during the whole disease process, it is important that their questions, fears and worries are met, from the first visit at hospital and through the whole process. Multiprofessional teams, such as ALS teams and palliative teams can from a holistic perspective increase the possibility of meeting their needs in their unique situation.

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

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

Patients' expectations and experiences of epilepsy surgery--A population-based long-term qualitative study.

OBJECTIVE: The aim of this prospective and population-based longitudinal study was to explore patients' expectations before surgery and their experiences both short and long term after epilepsy surgery. METHODS: A national sample of adult patients answered open-ended questions preoperatively, 2 years after surgery and at a cross-sectional long-term follow-up (mean 13 years, standard deviation [SD] 1.85). The answers were analyzed by qualitative content analysis. RESULTS: Eighty patients participated in the study. Before surgery, patients experienced a belief in a "normal" life; they hoped for reduction of seizures and medication, a richer social life, and more self-confidence. However, they also experienced anxiety of the unknown. They were afraid of the operation, of continued seizures, and of complications. At both postoperative follow-ups patients experienced increased independence. They had symptom reduction, felt relief from worries and fears, and felt that they had a new life. However, some patients experienced that the operation had changed their life to the worse due to both psychological and neurologic adverse effects, regardless of whether they had obtained seizure freedom or improvement. SIGNIFICANCE: Positive experiences of epilepsy surgery dominated, both in the short and long term. However, attention must be paid to negative expectations before and negative experiences after surgery in order to provide individual support and information. This should increase the possibility for patients to have realistic hopes before surgery and to find coping strategies in the new life situation after surgery.

Parental experiences before and long-term after their children's hemispherotomy - A population-based qualitative study.

Severe childhood epilepsy has an impact on the whole family. For selected children, hemispherotomy is the treatment of choice. The aim of this study was to explore parents' experiences before and after hemispherotomy as reported at a long-term follow-up and their view on received information and support. This was a population-based qualitative descriptive study, using qualitative content analysis of interviews. Seven to eighteen years after hemispherotomy, parents of twenty-one operated children were interviewed about the family life situation, expectations before surgery, and support and information before and after surgery. Before surgery, the theme 'Living in a chaotic bubble' illuminates how parents felt: the family lived in isolation, they felt both dissatisfaction and satisfaction about support and information, and they experienced that surgery was a question about life or death. After surgery, the theme 'Hovering between success and disaster' illuminates how parents hovered between happiness if the surgery was successful and sadness about e.g., complications and behavior problems. They experienced both excellent and poor support, in hospital and at rehabilitation. Regardless of all concerns, parents were satisfied that the child had received an operation. The hemispherotomies were successful and generated a better life situation. However, in order to cope, families need support and information throughout the whole process, from the onset of epilepsy and for a long time after surgery. If the child has behavior problems, an assessment should be made before surgery in order for the families to get adequate support. The specialist team needs to be involved as early as possible and follow the families for several years after surgery. Focus should be on the whole family, if needed including grandparents; family-centered care might be relevant for this patient group.

Differences in Symptom Distress Based on Gender and Palliative Care Designation Among Hospitalized Patients.

PURPOSE: To explore patient-reported symptom distress in relation to documentation of symptoms and palliative care designation in hospital inpatients. DESIGN: This cross-sectional study analyzed data from 710 inpatients at two large hospitals in Sweden using the Edmonton Symptom Assessment Scale and the Memorial Symptom Assessment Scale. Chart reviews focused on nurses' and physicians' symptom documentation and palliative turning point. METHODS: Descriptive statistics were calculated for all variables and provided summaries about the sample. Patients were grouped according to gender, age, palliative care designation, and symptom documentation. The t test and chi-square test were used to calculate whether symptom distress varied between groups. A two-way analysis of variance was conducted for multiple comparisons to explore the impact of gender and age on mean symptom distress. FINDINGS: Females reported higher levels of symptom distress than did males related to pain, fatigue, and nausea. When comparing symptom distress between males and females with documentation pertaining to symptoms, there were significant differences implying that females had to report higher levels of symptom distress than males in order to have their symptoms documented. CONCLUSIONS: Females need to report higher levels of symptom distress than do males for healthcare professionals to identify and document their symptoms. It can be hypothesized that females are not receiving the same attention and symptom alleviation as men. If so, this highlights a serious inequality in care that requires further exploration. CLINICAL RELEVANCE: Considering that common reasons why people seek health care are troublesome symptoms of illness, and that the clinical and demographic characteristics of inpatients are changing towards more advanced ages with serious illnesses, inadequate symptom assessment and management are a serious threat to the care quality.