Family caregivers' preferences for support when caring for a family member with cancer in late palliative phase who wish to die at home - a grounded theory study.

BACKGROUND: Family caregivers are essential in end-of-life care for cancer patients who wish to die at home. The knowledge is still limited regarding family caregivers needs and preferences for support and whether the preferences change during the patient's illness trajectory. Therefore, the aim was to explore family caregivers' preferences for support from home care services over time when caring for a family member with cancer at the end of life who wished to die at home. METHODS: A qualitative method was applied according to Grounded Theory. Data was collected longitudinally over the illness trajectory by means of repeated individual interviews (n = 22) with adult family caregivers (n = 11). Sampling, data collection and data analysis were undertaken simultaneously in line with the constant comparative method. RESULTS: The findings are captured in the core category "hold out in duty and love". The categories "having control and readiness for action" and "being involved in care" describe the family caregivers' preferences for being prepared and able to handle procedures, medical treatment and care, and to be involved by the healthcare personnel in the patient's care and decision making. The categories "being seen and confirmed" and "having a respite" describe family caregivers' preferences for support according to their own needs to be able to persevere in the situation. CONCLUSION: Despite deterioration in the patient's illness and the increasing responsibility family caregiver struggle to hold out and focus on being in the present. Over time together with deterioration in the patient's illness and changes in the situation, they expressed a need for more intense and extensive support from the home care services. To meet the family caregivers' preferences for support a systematic implementation of a person-centred care model and multicomponent psycho- educational interventions performed by nurses can be proposed. Moreover, we suggest developing a tool based on the conceptual model generated in this study to identify and map family caregivers' needs and preferences for support. Such a tool can facilitate communication and ensure person-centred interventions.

Health Care Personnel's Perspectives on Quality of Palliative Care During the COVID-19 Pandemic - A Cross-Sectional Study.

Purpose: The provision of high-quality palliative care is challenging, especially during a pandemic like COVID-19. The latter entailed major consequences for health care systems and health care personnel (HCP) in both specialist and community health care services, in Norway and worldwide. The aim of this study was to explore how the HCP perceived the quality of palliative care in nursing homes, medical care units, and intensive care units during the COVID-19 pandemic. Methods: This study had a cross-sectional design. A total of 290 HCP from Norway participated in the study (RR = 25.8%) between October and December 2021. The questionnaire comprised items concerning respondents' demographics and quality of care, the latter measured by the short form of the Quality from the Patient's Perspective-Palliative Care instrument, adapted for HCP. The STROBE checklist was used. Results: This study shows that the HCP scored subjective importance as higher in all dimensions, items and single items than their perception of the actual care received. This could indicate a need for improvement in all areas. Information about medication, opportunity to participate in decisions about medical and nursing care and continuity regarding receiving help from the same physician and nurse are examples of areas for improvement. Conclusion: Study results indicate that HCP from nursing homes, medical care units, and intensive care units perceived that quality of palliative care provided was not in line with what they perceived to be important for the patient. This indicate that it was challenging to provide high-quality palliative care during the COVID-19 pandemic.

Exploring Symptom Clusters and Their Measurements in Patients With Lung Cancer: A Scoping Review for Practice and Research.

PROBLEM IDENTIFICATION: This scoping review aimed to explore symptom clusters (SCs) in patients with lung cancer and how included symptoms and symptom dimensions are measured. LITERATURE SEARCH: PubMed®, CINAHL®, Scopus®, and Cochrane Library were searched for studies published until December 31, 2021. Fifty-three articles were included. DATA EVALUATION: Data extracted included descriptive items and SC constellations. Patient-reported outcome instruments and measured symptom dimensions were described according to the middle-range theory of unpleasant symptoms. SYNTHESIS: 13 articles investigated SCs a priori and 40 de novo. Thirty-six instruments were used, mostly measuring intensity alone or in combination with timing. Qualitative articles (n = 6) provided rich descriptions within the distress, timing, and quality dimensions. IMPLICATIONS FOR RESEARCH: Fatigue was the symptom found to most frequently co-occur with other symptoms in SCs. Fatigue, psychological symptoms, and nutritional aspects are emphasized as important areas for oncology nursing practice and further research to improve SC management for patients with lung cancer.

Facing negative emotions: Evaluation of a brief training in validating communication for contact nurses in cancer care.

BACKGROUND: Contact nurses in cancer care (CNCC) often face challenges when communicating with patients and their families. The overall aim was to evaluate a brief digital validation training for CNCC, to test whether it was associated with increased validation and decreased invalidation. Associations between communication skills in validation and markers of work-related stress were also investigated. METHODS: This intervention study investigated associations between the training and validation skills using a within-group design with repeated measures (at pre, post, and eight-week follow-up). Additionally, associations between the training and occupational self-efficacy, self-validation, and exhaustion symptoms were explored. RESULTS: Seventeen CNCCs (all female with relatively long work experience) completed a five-week digital training program. Results indicated a statistically significant increase in validation and a statistically significant decrease in invalidation, showing that the nurses improved their communication skills following the training. No changes were found in markers of work-related stress. CONCLUSION: The results indicate that digital validation training for CNCCs is potentially beneficial by means of improving communication skills. This study further demonstrates that a brief digital training in validating communication to CNCC is associated with improved person-centered communication regarding strong negative emotions.

High availability of vegetables and fruit through government-funded school lunch is not reflected in 4th grade pupils' intake.

Background: An increased intake of vegetable and fruit (VF) through school meals can contribute to the prevention of non-communicable diseases. Objective: The purpose of this study was to investigate what types of VF 4th grade pupils (10-11 years old) choose, how much they eat when they are given the opportunity to serve themselves from the daily vegetable buffet available at lunch, and whether this varies with socioeconomic background and gender. Design: A cross-sectional study design was used where pupils' VF intake was measured during 5 days with a photographic method. In total, 196 pupils from nine public schools participated. Results: The results show that pupils on average ate less than one type of VF per day from the vegetable buffet. Girls, pupils with a higher socio-economic status (SES) and those with a more frequent VF intake at home, ate more types of VF per day from the vegetable buffet than their counterparts. The median intake of VF from the vegetable buffet was generally low, 20.4 g/day. The intake was two thirds higher for pupils with higher SES in comparison with pupils with lower SES; 25 g/day versus14 g/day (P = 0.001). No gender differences in grams per day of VF were identified (P = 0.123). Discussion: This study indicates that a well-stocked vegetable buffet as part of government-funded school lunch does not automatically contribute substantially to the recommended daily intake of VF among a sample of 4th grade pupils in a high-income country like Sweden. Conclusions: The results of the study can be interpreted as a missed opportunity to increase the intentional consumption of VF among pupils in a way that would have implications for public health as well as attenuating differences between socioeconomic groups.

Fundamental nursing care focusing on older people's needs and continuity of long-term care: a scoping review protocol.

INTRODUCTION: Knowledge about long-term care services ability, regardless of if the service is home-based or facility-based, to provide an optimal and comprehensive fundamental nursing care (understood as focusing on physical, relational and psychosocial needs) consistently over time is sparse. Research into nursing indicates the presence of a discontinuous and fragmented healthcare service, and that fundamental nursing care such as mobilisation, nutrition and hygiene among older people (65 years and above) seems to be, regardless of reasons, systematically rationed by nursing staff. Thus, our scoping review aims to explore the published scientific literature on fundamental nursing care and continuity of care targeting older people's needs while also describing identified nursing interventions with the same foci in a long-term care context. METHODS AND ANALYSIS: The upcoming scoping review will be conducted in accordance with Arksey and O'Malley's methodological framework for scoping studies. Search strategies will be developed and adjusted to each database, for example, PubMed, CINAHL and PsychINFO. Searches will be limited to the years 2002-2023. Studies focusing our aim, regardless of study design, will be eligible for inclusion. Included studies will be quality assessed and data will be charted using an extraction form. Textual data will be presented through a thematic analysis and numerical data by a descriptive numerical analysis. This protocol adheres to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses protocol checklist. ETHICS AND DISSEMINATION: The upcoming scoping review will take into consideration ethical reporting in primary research as part of the quality assessment. The findings will be submitted to an open-access peer-reviewed journal. Under the Norwegian Act on Medical and Health-related Research, this study does not need ethical clearance by a regional ethical review authority as it will not generate any primary data or obtain sensitive data or biological samples.

Effects of Person-Centered Information for Parents of Children With Cancer (the PIFBO Study): A Randomized Controlled Trial.

Background: Conveying information to parents is a core part of pediatric oncology nursing; however, most published interventions do not tailor information to individual parental needs. Objective: To evaluate the effect on parental illness-related stress of person-centered information provided to parents of children with cancer. Methods: A multicenter, unblinded randomized controlled trial with two parallel arms recruiting parents of children diagnosed within the past two months from two tertiary children's cancer centers in Sweden. Parents were randomized using sealed envelopes prepared and opened by an independent person. Parents in the intervention arm met four times with experienced nurses trained in the intervention, whereas controls received standard care. The effect of the intervention was measured five times regarding parents' illness-related stress. Secondary outcomes were psychosocial states, experiences with healthcare providers, and received information. Further, we collected process data on the intervention's content and fidelity. Results: Of the 32 parents included and analyzed in the study, 16 were randomized to the intervention, which addressed a broad variety of topics. The intervention increased parents' knowledge about the biophysiological and functional aspects of their child's illness, but it had no measurable effect on their distress. Discussion: Although fidelity to the intervention protocol was sufficient, the study was flawed by recruitment difficulties, primarily due to organizational factors, which may have prevented us from observing any possible effects on psychosocial distress. Having a person-centered perspective could be promising for future studies aimed at parents of children with cancer. (Registered at Clinicaltrials.gov, number NCT02332226.).

What Was on the Parents' Minds? Changes Over Time in Topics of Person-Centred Information for Mothers and Fathers of Children with Cancer.

Acquiring information about one's child's cancer diagnosis is a complex and ever-changing process, and parents' needs change over time. As yet, we know little about what information parents require at different stages of their child's illness. This paper is part of a larger randomized control trial studying the parent-centered information given to mothers and fathers. The aim of this paper was to describe the topics addressed in person-centered meetings between nurses and parents of children with cancer and how those changed over time. Using qualitative content analysis, we analyzed nurses' written summaries of 56 meetings with 16 parents and then computed for each topic the percentage of parents who brought it up at any time during the intervention. The main categories were Child's disease and treatment (addressed by 100% of parents), Consequences of treatment (88%), Emotional management for the child (75%), Emotional management for the parent (100%), Social life of the child (63%), and Social life of the parent (100%). Different topics were addressed at different points in time, and fathers raised more concerns about the child's emotional management and the consequences of treatment than mothers. This paper suggests that parental information demands change over time and differ between fathers and mothers, implying that information should be person-centered. Registered at Clinicaltrials.gov (NCT02332226).

Nursing care and models of care in relation to older people in long-term care contexts: a scoping review protocol.

INTRODUCTION: What nurses do and how they do it can influence older people's experiences of the quality of long-term care. In addition, a clear role definition for nurses supports them in giving patients appropriate basic care. Despite this, there is a lack of a clear role definition regarding policy, work descriptions and expectations. Therefore, the objective of this scoping review is to map the literature on nurses' role, function and care activities and/or nursing interventions, as well as to identify nursing interventions (as models of nursing care, patient care pathways and/or clinical practice guidelines) in relation to older people in long-term care. Hence, to explore how nurse's role, function and care activities in relation to older people's basic care needs are described and understood by key stakeholders (older people, their next of kin, nurses) in long-term care. METHODS AND ANALYSIS: Arksey and O'Malley's methodologic framework for scoping studies will be used for this upcoming scoping review. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews checklist will be followed. Search strategies will be developed in collaboration with the research team and an experienced librarian. Search strategies will be adjusted for each of the databases: PubMed, PsycINFO, CINAHL and Scopus. Data will be charted using a pilot extraction sheet. Quantitative data will be described numerically, and qualitative data will be analysed using thematic analysis. The key stakeholders will be consulted for validation. ETHICS AND DISSEMINATION: The upcoming study will follow All European Academies' principles for good research. The findings will be used to inform the design of future studies aiming to develop a nursing intervention targeting older peoples' basic care needs.

Adolescents' and young people's needs and preferences for support when living with a parent with life-threatening cancer: a grounded theory study.

BACKGROUND: Living with a parent facing life-threatening illness and losing a mom or dad at a young age can cause both short- and long-term health problems. Without satisfactory support, adolescents' and young people are at risk of developing low self-esteem, behavioural difficulties (e.g., anger and aggression), long-term illness or premature death caused by severe mental illness, substance abuse, self-harm and suicide attempts. The aim of this study was to explore adolescents' and young people's needs and preferences for support as they live with a parent with life-threatening cancer. METHODS: Qualitative interviews were conducted with 10 respondents (17-24 years) in Norway and Sweden. Data were analysed through grounded theory according to Charmaz. RESULTS: Adolescents' and young peoples' needs and preferences for support were described through the main category 'To feel safe and secure and to be prepared' and further broken down into five subcategories 'Relationships in the immediate family-balancing support and protection'; 'The social network-support and normalcy in a carefully selected group'; 'Maintaining everyday life-challenges in school and working life'; 'The right support at the right time-competence, trust and continuity in meeting health care professionals'; and 'Support outside the home-an opportunity for full transparency'. CONCLUSION: Adolescents' and young peoples' preferences for support when living with a parent facing life-threatening illness are individual and unique, but they share a common need to feel safe and secure and to be prepared. Adolescents and young people express that they primarily want support from parents and friends, but they also want support from health care professionals, especially in situations when the ill parent becomes worse. Therefore, it is of the utmost importance for health care professionals to identify the most vulnerable adolescents and young people by mapping their social networks and paying extra attention to their needs for support when there is deterioration in the parent's illness state. This study also highlights the importance for health care professionals to establish a good relationship with adolescents and young people to meet their needs and preferences for support. In addition, information and support are needed in a timely manner and adapted to the life-threatening ill parent's illness state and individual's needs and preferences to optimise preparedness.

Preferences for home care to enable home death among adult patients with cancer in late palliative phase - a grounded theory study.

BACKGROUND: The wish to be cared for and to die at home is common among people with end-stage cancer in the western world. However, home deaths are declining in many countries. The aim of this study was to explore the preferences for home care over time to enable home death among adult patients with cancer in the late palliative phase. METHODS: A qualitative method was applied according to grounded theory (Corbin & Strauss, 2008). Data was collected using individual interviews (n = 15) with nine adult patients. One to two follow up interviews were conducted with four patients. Sampling, data collection and constant comparative analysis were undertaken simultaneously. RESULTS: The findings are presented as a conceptual model of patients' preferences for care to enable home death. The core category "Hope and trust to get the care I need to die at home" showed that the preference to die at home seemed stable over time and did not change with deterioration in health status and progression in illness. Five categories were related to the core category. The categories "being in the present", "be safe and in charge" and "be seen and acknowledged" describe the patients' preferences to live a meaningful life until death and be the same person as always. These preferences depended on the categories describing characteristics of healthcare personnel and the organisation of care: "reliable, compassionate and competent healthcare personnel" and "timely, predictive, continuous and adaptive organisation". CONCLUSION: An important preference over time was to be here and now and to live as meaningful a life as possible until death. Moreover, the patients preferred to retain control over their lives, to be autonomous and to be seen as the person they had always been. To achieve this, person-centred care provided by healthcare personnel with competence, skills and enough/ample time were required. In addition, home care needed to be organised in a way that ensured continuity and predictability. Systematic implementation of a person-centred care model and the use of advanced home care plans with continued re-evaluation for patients' preferences of home care were proposed measures to enable home death.

Children and adolescents' preferences for support when living with a dying parent - An integrative review.

AIM: To identify and synthesize the evidence base regarding children and adolescents' preferences for support when living with a dying parent. DESIGN: Integrative literature review study. METHODS: Searches were conducted in PubMed, CINAHL, PsycINFO, the Cochrane Library, Sociological Abstracts and Scopus, between 1 October 2019 and May 2021. Data were analysed and synthesized using integrative thematic analysis according to the analysis stages specified by Whittermore and Knafl. RESULTS: Twenty-two articles were identified. Children and adolescents' preferences for support were described through one overarching theme, Striving to achieve control and balance, together with six subthemes; "Involvement in the sick parent's care and treatment"; "Wanting to be with the sick parent but needing respite"; "Information must be continuous and individually adapted"; "emotional and communicative support from parents and family members"; "professional, compassionate and informative support"; and "support in friendships and opportunities to maintain normality."

Does the purpose matter? A comparison of everyday information and communication technologies between eHealth use and general use as perceived by older adults with cognitive impairment.

BACKGROUND AND OBJECTIVE: Everyday information and communication technologies (EICTs) are increasingly being used in our society, for both general and health-related purposes. This study aims to compare how older adults with cognitive impairment perceive relevance and level of EICT challenge between eHealth use and general use. METHODS: This cross-sectional study includes 32 participants (65-85 years of age) with cognitive impairment of different origins (due to e.g., stroke or dementia). The Short Everyday Technology Use Questionnaire+ (S-ETUQ+) was used, providing information about the relevance of EICTs and measuring the EICT level of challenge. Data were analysed with descriptive statistics, standardized z-tests and Fisher's exact tests. The significance level was set to p < .05. RESULTS: The result shows that the perceived amount of relevant EICTs for eHealth use was lower in all 16 EICTs compared to those of general use. About the perceived level of challenge, a significant difference was detected in one of the seven included EICTs between eHealth use and general use. CONCLUSIONS: In this sample, all EICTs were perceived as having lower relevance for eHealth use compared to general use, suggesting that the purpose of using an EICT affects the perceived relevance of it. Also, once an EICT is perceived as relevant and used for eHealth purposes, there seem to be little to no differences in perceived challenge compared to the same EICT used for general purposes.Implications for rehabilitationAll stakeholders, including health care providers, need to be aware of the hindrances that come with digitalization, making it challenging to many citizens to make use of digital solutions.It is of great importance that social services including eHealth services be tailored to suit the individual/target group.Older adults may need support and an introduction to EICTs to discover the potential relevance of the specific device and/or service.

A moment just for me - parents' experiences of an intervention for person-centred information in paediatric oncology.

PURPOSE: Information can help parents of children with cancer by reducing uncertainty and giving them a sense of control in a chaotic situation. Although providing information to parents is a core activity of paediatric oncology nursing, few studies focus on interventions for informing parents. Thus, the aim of this study is to evaluate parents' experiences after participating in a person-centred information intervention for parents of children with cancer. METHOD: This study is part of a process evaluation of a person-centred informational intervention in paediatric oncology for patients' parents. Qualitative semi-structured interviews with 13 parents who had taken part in the intervention were analysed using qualitative content analysis. RESULTS: An opening for healing emerged as the overarching theme, consisting of three categories. Gaining a deeper understanding of the entire situation describes how parents benefitted from processing current topics and moving forward by learning. Caring reflections in a safe space describes how parents appreciated having a moment just for themselves and feeling better by venting their feelings. Meeting a competent and compassionate nurse describes how parents experienced trust and being listened to. CONCLUSION: Having individual information meetings integrated as a primary nursing responsibility, mediated by competent and compassionate nurses also responsible for the care of the child, could enhance person-centred care and individualise parental education.

Sexuality After Treatment of Diffuse Large B-cell Lymphoma: Patients' Experiences and Psychometric Testing of the Sexual Adjustment Questionnaire-Swedish Version II.

BACKGROUND: Sexuality is an important part of health-related quality of life. To ensure adequate supportive interventions, valid and reliable instruments specific to sexual changes and adjustments after cancer treatment are needed. OBJECTIVES: The aims of this study were to test the psychometric properties of the Sexual Adjustment Questionnaire-Swedish version II (SAQ-SII) in patients treated for diffuse large B-cell lymphoma and to describe and explore patients' experiences of sexuality after treatment. METHODS: A cross-sectional study was conducted in 2019, using SAQ-SII and data from the National Quality Registry for Leukemia-subregistry for Lymphoma, which included 257 patients (25% response rate). An exploratory factor analysis was performed for psychometric evaluation. Internal consistency was assessed by Cronbach's α. Independent t tests, analysis of variance, and multiple regression were used to describe patients' experiences of sexuality. RESULTS: The exploratory factor analysis resulted in a 4-factor structure, explaining 65.7% of the total scale variance (SAQ-SII). The Cronbach's α for the SAQ-SII was 0.88 and varied between 0.70 and 0.89 across subscales. Sexuality was affected in various ways and extent. Sexual Interest was most affected, whereas Sexual Function was least affected. Being male, of younger age, without comorbidities, and in a relationship were associated to a higher Sexual Interest. CONCLUSIONS: The SAQ-SII is a valid and reliable instrument to measure changes and adjustments in sexuality in patients treated for lymphoma. IMPLICATIONS FOR PRACTICE: Assessments of sexuality in a broad sense should be an integrated part of cancer care to ensure timely interventions for those who need and want support.

Impact of the Liverpool Care Pathway on quality end-of- care in residential care homes and home care-Nurses' perceptions.

AIM: Aim was to describe how Registered Nurses (RNs) and assistant nurses (ANs) working in residential care homes and home care perceived quality end-of-life care after implementation of the Liverpool Care Pathway (LCP) in terms of subjective importance of care aspects and actual care given. DESIGN: Descriptive cross-sectional. METHODS: Registered Nurses (N = 22; 100% response rate) and ANs (N = 120; 59% response rate) working in a Swedish municipality. Data collection with a study-specific questionnaire (50 items) about perceived reality (PR) and subjective importance (SI). Non-parametric statistics. RESULTS: Implementation of the LCP ensured systematic assessment and alleviation of patients' symptoms and needs. The ANs, more than the RNs, perceived that the patients received the best possible nursing and medical care (p = .01). Both groups considered that communication with patients and families as well as the information exchange between the team members was facilitated. Areas for improvement were identified about psychological and existential support and patients and families' participation in care.

New satellite-based estimates show significant trends in spring phenology and complex sensitivities to temperature and precipitation at northern European latitudes.

Recent climate warming has altered plant phenology at northern European latitudes, but conclusions regarding the spatial patterns of phenological change and relationships with climate are still challenging as quantitative estimates are strongly diverging. To generate consistent estimates of broad-scale spatially continuous spring plant phenology at northern European latitudes (> 50° N) from 2000 to 2016, we used a novel vegetation index, the plant phenology index (PPI), derived from MODerate-resolution Imaging Spectroradiometer (MODIS) data. To obtain realistic and strong estimates, the phenology trends and their relationships with temperature and precipitation over the past 17 years were analyzed using a panel data method. We found that in the studied region the start of the growing season (SOS) has on average advanced by 0.30 day year-1. The SOS showed an overall advancement rate of 2.47 day °C-1 to spring warming, and 0.18 day cm-1 to decreasing precipitation in spring. The previous winter and summer temperature had important effects on the SOS but were spatially heterogeneous. Overall, the onset of SOS was delayed 0.66 day °C-1 by winter warming and 0.56 day °C-1 by preceding summer warming. The precipitation in winter and summer influenced the SOS in a relatively weak and complex manner. The findings indicate rapid recent phenological changes driven by combined seasonal climates in northern Europe. Previously unknown spatial patterns of phenological change and relationships with climate drivers are presented that improve our capacity to understand and foresee future climate effects on vegetation.

Multiple roles of lymphatic vessels in peripheral lymph node development.

The mammalian lymphatic system consists of strategically located lymph nodes (LNs) embedded into a lymphatic vascular network. Mechanisms underlying development of this highly organized system are not fully understood. Using high-resolution imaging, we show that lymphoid tissue inducer (LTi) cells initially transmigrate from veins at LN development sites using gaps in venous mural coverage. This process is independent of lymphatic vasculature, but lymphatic vessels are indispensable for the transport of LTi cells that egress from blood capillaries elsewhere and serve as an essential LN expansion reservoir. At later stages, lymphatic collecting vessels ensure efficient LTi cell transport and formation of the LN capsule and subcapsular sinus. Perinodal lymphatics also promote local interstitial flow, which cooperates with lymphotoxin-ß signaling to amplify stromal CXCL13 production and thereby promote LTi cell retention. Our data unify previous models of LN development by showing that lymphatics intervene at multiple points to assist LN expansion and identify a new role for mechanical forces in LN development.