Children and Youth with Special Health Care Needs: Progress Towards More Family-Centered Systems of Care.

Children and youth with special health care needs have increasingly been included in community and society over the past 50 years. Changing definitions and programs in the education, health, and public health/Title V sectors document this greater inclusion. The most profound change was in the education system, with the passage of legislative mandates for inclusion and parental rights. Although the health system has no similar universal mandate, the sequential passage of Medicaid, Children's Health Insurance Plan, and the Patient Protection and Affordable Care Act led to expanded health care coverage with no pre-existing conditions and lifetime caps. Title V of the Social Security Act, originally passed in 1935, evolved from a focus on individual medical services to a public health systems approach focusing on building family-centered, coordinated, comprehensive care in community settings. Most of the changes in all the sectors are the result of the advocacy and engagement of parents and families; the Maternal and Child Health Bureau was a supportive and innovative leader for family-professional partnerships. Much work on understanding disparities across the sectors has led to more recent focus on equity.

Parental acceptance of dental treatment with SDF in children with CP.

INTRODUCTION: This study aims to evaluate parental acceptance of dental treatment with silver diamine fluoride (SDF) in children with cerebral palsy (CP). METHODS: The present study is a case-control study with 80 children in the age range of 6-11 years. Group I consisted of children diagnosed with CP and Group II consisted of children without any Special Health Care Needs and systemic conditions. Preoperative and postoperative behavior assessment was done using Frankl's behavior Rating Scale. 38 % SDF application was done in any one primary molar with occlusal dentinal caries. A well-designed validated structured questionnaire with 10 questions was developed to assess the parental acceptance of dental treatment with SDF. The questionnaire comprised 10 close-ended questions with subdivisions on socio-demographic details, the reason for the previous and current dental visit, and acceptance of dental treatment with SDF. The data were analyzed using SPSS (version 26, IBM, Chicago, USA). Continuous variables were expressed as mean ± standard deviation (M ± SD). Categorical variables were expressed as frequency (n) and percentage (%). The chi-square test was used for qualitative analysis. The level of significance was set at 5%. RESULTS: The number of children showing positive behavior on Frankl's behavior Rating Scale increased from 55% to 70% after dental treatment with SDF and this difference was statistically significant in Group I (p-value < 0.001). 87.5% of parents in Group I had accepted the discoloration caused after dental treatment with SDF compared to 80% in Group II. In Group I, 95% of parents agreed strongly, while in Group II, 82.5% agreed strongly that SDF can be done on un-cooperative and special health care needs children. This difference in agreement seen between parents of Group I and Group II was found to be statistically significant (p-value = 0.02). Also, the acceptance of SDF was found to be higher in parents who were educationally more qualified in Group I. This difference in the acceptance level of SDF seen based on the educational status of parents was statistically significant (p-value < 0.001). CONCLUSION: Parental acceptance of SDF for dental treatment was higher in Group I (children with CP) as a greater number of parents accepted dental treatment despite discoloration with the modality being noninvasive and less time-consuming. Improved behavior rating was observed among children in both groups after dental treatment with SDF.

Experiences and the psychosocial situation of parental caregivers of children with spinal muscular atrophy against the background of new treatment options: a qualitative interview study.

BACKGROUND: Spinal muscular atrophy is a rare neurodegenerative disorder in children which leads untreated to muscle wasting, respiratory impairments, and a shortened life expectancy. Parents as primary caregivers are often physically and psychologically burdened. In recent years, new and promising treatment options have been approved, but it remains unclear if they have an impact on the psychosocial situation of affected families. OBJECTIVES: The aim of this study was to explore the views and experiences of parents as informal caregivers of children with SMA in the course of the disease against the background of new treatment options (Spinraza® or Zolgensma®). METHODS: We conducted qualitative interviews with 27 parents of children with SMA treated with Spinraza® and Zolgensma® from April to September 2020. The analysis was done using thematic analysis and reported according to the COREQ criteria. RESULTS: The data analysis resulted in three main themes: a) caregiver burden and negative consequences for families, b) resources and protective aspects, c) psychosocial care needs. The results are discussed against the background of new treatment options and previous models of supportive care needs. Parental caregivers of affected children face multiple burdens in different stages of the child's disease progression. CONCLUSION: Although new treatment options for SMA showed observable effects for most parents, the main caregiver burden and reported symptoms were attributable to the overburdening care tasks. To unburden families, more screening for unmet needs, family-centered help services, professional caregivers, childcare, and sufficient financial support are needed.

Nursing Home Palliative Care Referral Process, Barriers, and Proposed Solutions: A Qualitative Study.

Despite evidence that specialized care for seriously ill nursing home (NH) residents is needed, barriers to accessing palliative care (PC) remain. A significant issue is the complexity of the referral process that inhibits timely and equitable access to care. This qualitative descriptive study explored the PC referral process in NHs. Using rapid qualitative analysis with semi-structured interview data from NH staff, primary care, and specialty PC providers (N = 17) in six states, this study outlines a multistep referral process along with barriers and proposed solutions. Key recommendations include comprehensive PC education program development, implementation of an evidence-based PC screening tool, and the holistic integration of PC services in NHs.

The Effects of Health and Unmet Dental Care Needs on the Health-Related Quality of Life in Korea Older Adults: A Nationwide Study.

Background: The purpose of this cross-sectional study was to assess the relationship between oral health, unmet dental needs and health-related quality of life in South Korea older adults. Methods: The present study used raw data from the 2019~2020 Korea National Health and Nutrition Examination Survey, and analyzed 4956 participants aged over 65 yr. Hierarchical multiple regression analysis was used for associations between oral health, unmet dental needs, and HRQoL. Results: The EQ-5D index differed according to tooth pain, chewing difficulty, speaking problem, subjective oral health status, oral examination, and unmet dental care needs (P<0.001). In the model 2, male, under 75 yr of age, high school graduate or higher, employed, living with a spouse, no stress, good subjective health status, no speaking problem, and no unmet dental care needs were associated with higher EQ-5D index (Adj R2 = 27.6%, P<0.001). Conclusion: To improve the HRQoL of older adults in South Korea, oral health problems need to be minimized through oral disease prevention and oral health education programs.

Neuropalliative Care Needs Checklist for Motor Neuron Disease and Parkinson's Disease: A Biopsychosocial Approach.

Objectives: Neurodegenerative disorders necessitate comprehensive palliative care due to their progressive and irreversible nature. Limited studies have explored the comprehensive assessment needs of this population. This present study is designed to develop a checklist for evaluating the palliative care needs of individuals with motor neuron disease (MND) and Parkinson's disease (PD). Materials and Methods: The checklist was created through an extensive literature review and discussions with stakeholders in neuropalliative. Feedback from six field experts led to the finalisation of the checklist, which comprised 53 items addressing the unique biopsychosocial needs of MND and PD. Sixty patient-caregiver dyads receiving treatment in a tertiary referral care centre for neurology in south India completed the checklist. Results: People with MND had more identified needs with speech, swallowing, and communication, while people with PD reported needs in managing tremors, reduced movements, and subjective feelings of stiffness. People denying the severity of the illness was found to be a major psychosocial issue. The checklist addresses the dearth of specific tools for assessing palliative care needs in neurodegenerative disorders, particularly MND and PD. By incorporating disease-specific and generic items, the checklist offers a broad assessment of patients' multidimensional needs. Conclusion: This study contributes to the area of neuropalliative care by developing the neuropalliative care needs checklist (NPCNC) as a valuable tool for assessing the needs of individuals with neurodegenerative diseases. Future research should focus on refining and validating the NPCNC with larger and more diverse groups, applicability in different contexts, and investigating its sensitivity to changes over time.

Accidental Physical Trauma in Children and Youth with Special Health Care Needs: A Scoping Review.

BACKGROUND: Children and youth with special health care needs (CYSHCN) may be at greater risk for accidental physical trauma. Interventions should be informed by the literature indicating incident characteristics and at-risk subpopulations. OBJECTIVE: To conduct a scoping review of accidental physical trauma in CYSHCN to characterize published literature and identify gaps. DATA SOURCES: Peer-reviewed literature within CINAHL, Embase, and PubMed, 1998 to February 2021. STUDY ELIGIBILITY CRITERIA: Studies that included individuals younger than 19 with special health care need(s) with accidental injuries classified as trauma. STUDY APPRAISAL AND SYNTHESIS METHODS: The study team extracted: research method, author field, special health care needs, geographic scope, author country, demographics, incident characteristics, and injury characteristics. RESULTS: We included 85 articles from an initial yield of 10,481. Pediatrics (32%) was the most-represented field among authors published on this topic. Publications most often considered developmental conditions (77.7%), including ADD/ADHD. Studies differed in how often they reported demographic characteristics: gender (96.5%); social determinants of health/socioeconomic status (41.2%) or race/ethnicity (25.9%). Few articles included injury time of day (10.6%) and day of week (2.4%); 40% did not include information about the place of injury. LIMITATIONS: Our search term development focused on diagnosis rather than need; we did not search reference lists or grey literature. CONCLUSIONS AND IMPLICATIONS OF KEY FINDINGS: This review reveals key gaps in the literature pertaining to incident characteristics and place of injury for CYSHCN. Those advising families and/or planning interventions focused on mitigating risk for CYSHCN have limited evidence upon which to rely for certain conditions. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO registration is not applicable to scoping reviews.

Effect of Telenursing on Supportive Care Needs in Patients with Melanoma and Lung Cancer on Targeted Therapies: A Randomised Controlled Trial Study Protocol.

Background: Telenursing comprises a set of tools and interventions enabling nurses to provide remote care. This study aims to assess the impact of telenursing interventions on the supportive care needs of patients with melanoma and lung cancer who are receiving targeted therapies. Methods: This six-month monocentric, double-arm, randomised, controlled trial study protocol will assess the effect of telenursing on the supportive care needs (primary outcome) in 40 patients (20 in each group) after one month. The secondary outcomes will be monitored at baseline, one, three and six months: supportive care needs (at three and six months), therapeutic adherence, quality of life, usability and satisfaction, performance status, patient-reported outcomes and main adverse events. The SPIRIT guidelines will be used for the reporting. Results: The results from this trial will assess the impact of a telenursing intervention on cancer care. Conclusions: This trial could be a starting point for more extensive studies on telenursing interventions to promote nurses' skills, as well as the quality and safety of care in patients with cancer, highlighting the impact of more outstanding nursing contributions on cancer care. Trial and Protocol Registration: The study protocol was approved by the relevant Italian Ethics Committee Lazio Area 5 (RS1851/23, 2773; 6 September 2023) and was registered on ClinicalTrials.gov (trial registry number NCT06254196).

Health-related quality of life and supportive care needs in young adult cancer survivors-a longitudinal population-based study.

PURPOSE: To examine health-related quality of life (HRQoL) and supportive care needs among young adult (YA) cancer survivors up to 3 years post-diagnosis. METHODS: A national cohort of individuals diagnosed at 18-39 years with breast, cervical, ovarian, or testicular cancer, lymphoma or brain tumor was approached with surveys at 1.5 (n = 1010, response rate 67%) and 3 (n = 722) years post-diagnosis. HRQoL was measured using the EORTC QLQ-C30. Scores were dichotomized using cut-off scores to predict supportive care needs in the Supportive Care Needs Survey-Long Form 59 (SCNS-LF59). Swedish cancer quality registers provided clinical data. Factors predicting need of support at 1.5 and 3 years post-diagnosis were identified using logistic regression. RESULTS: HRQoL improvements over time were trivial to small. At both time points, a majority of respondents rated HRQoL levels indicating supportive care needs. At 1.5 years post-diagnosis, the risk of having support needs was lower among survivors with testicular cancer (compared to lymphoma) or university-level education, and higher among those on treatment (predominantly endocrine therapy). At 3 years post-diagnosis, when controlling for previous HRQoL scores, most correlations persisted, and poor self-rated household economy and chronic health conditions were additionally associated with supportive care needs. CONCLUSION: A majority of YAs diagnosed with cancer rate HRQoL at levels indicating support needs up to 3 years post-diagnosis. Testicular cancer survivors are at lower risk of having support needs. Concurrent health conditions and poor finances are linked to lower HRQoL. More efforts are needed to provide adequate, age-appropriate support to YA cancer survivors.

Quality of Life in Children With Chronic Health Conditions and Its Contribution to Unmet Supportive Care Needs of Families.

BACKGROUND: While theoretical models have established the bidirectional relationship between health and wellbeing of parents and children with chronic health conditions (CHCs), previous work has predominantly emphasised the impact of parent functioning on child outcomes. This study examines how quality of life (QoL) domains in children with CHCs are associated with unmet supportive care needs (SCN) of their parents and explores whether these associations vary by health condition. METHOD: Parents of children with congenital heart disease (CHD), type 1 diabetes (T1D) and cancer diagnosed before the age of 12 years and receiving treatment within the last 5 years were eligible. Parents recruited through charity organisations and social media platforms completed a secure, online survey via Qualtrics. The PedsQL examined child QoL across four dimensions: physical, emotional, social and school functioning. A 34-item survey assessed parents' unmet SCN in the previous month across six need domains (e.g., care and informational). Linear regressions examined associations between child QoL and unmet SCN domains and moderation analyses determined whether associations varied as a function of CHC. RESULTS: The study included 186 parents (age range 25-56 years) of children diagnosed with various CHCs (52% CHD; 27% T1D, 21% cancer). The child's emotional functioning was inversely related to all unmet SCN domains, social functioning was inversely related to three domains (physical and social; support; financial), school functioning was inversely related to two domains (physical and social; care), and child's physical functioning was not associated with any SCN domains. Only the association between child school functioning and unmet care needs was significantly moderated by CHC type (p < 0.05). CONCLUSION: Poorer emotional functioning in children with a CHC is a key factor in determining parents unmet SCN. Larger studies are required to replicate these findings and inform design of interventions addressing QoL and unmet SCN in families of children with common CHCs.

Analysis of Longitudinal Trajectory and Influencing Factors of Supportive Care Needs in Colorectal Cancer Patients With Enterostomy.

AIMS: The aim of this study was to understand the dynamic changes in the needs of patients with enterostomy during the 3 months after discharge and its possible influencing factors. DESIGN: A prospective observational design. METHODS: This study investigated the supportive care needs of patients who underwent colorectal cancer surgery with colostomy in three Chinese hospitals from May 2023 to October 2023 during the 3 months following discharge from the hospital. The growth mix model was used to describe the needs trajectory and analyse the heterogeneity of the trajectory. Univariate analysis was used to find the factors that might affect the heterogeneity of needs trajectory of patients with enterostomy, and then logistic regression analysis was used to determine the influencing factors of the heterogeneity of needs trajectory of patients with enterostomy. The reporting of this study adhered to the STROBE checklist. RESULTS: A total of 232 patients with enterostomy completed follow-up. There was heterogeneity in the developmental trajectories of supportive care needs of enterostomy patients and the trajectories of the five dimensions of supportive care needs. The heterogeneity factors affecting the trajectory of supportive care needs included the enterostomy patient's psychosocial adjustment score, type of enterostomy, and educational background and the heterogeneity factors affecting the five dimensions trajectory of supportive care needs include psychosocial adjustment score, tumour staging, type of enterostomy, smoking, chemotherapy and enterostomy self-care knowledge score. CONCLUSIONS: The needs of patients with enterostomy within 3 months after discharge were dynamic. Identifying and meeting the unmet needs of patients with enterostomy was crucial to improving the health-related quality of life of patients with enterostomy. PATIENT OR PUBLIC CONTRIBUTION: None. RELEVANCE TO CLINICAL PRACTICE: The needs of patients with enterostomy were dynamic, with the needs of most patients with enterostomy decreasing within 3 months of discharge, but some patients with enterostomy continued to have high needs at 3 months after discharge, and clinical nurses were expected to pay special attention to these patients.

Relationship Between Spiritual Care Needs and Cognitive Intrusion of Pain in Patients with Advanced-Stage Cancer in Türkiye.

Pain is a common symptom experienced by patients with advanced-stage cancers. This research was conducted to determine the relationship between spiritual care needs and the cognitive intrusion of pain in patients with advanced-stage cancer. The data were collected through the patient information form, visual pain scale (VPS), spiritual care needs scale (SCNS), and cognitive intrusion of pain scale (CIPS). The study was conducted with 138 advanced cancer patients. Patients had a moderate level of spiritual care needs and an above moderate level of cognitive intrusion of pain. A positive correlation was found between the total CIPS score and the meaning and hope subdimension score of SCNS (p = 0.022). Cognitive intrusion of pain increased as the need for meaning and hope in spiritual care increased. In conclusion, meeting the spiritual care needs of patients is important to prevent patients from focusing excessively on the pain they are experiencing.

"I Am Forever Changed": A Phenomenological Study of the Existential Experiences of Parents of Children and Young People With Complex Care Needs.

AIM: To explore the existential lived experiences of parents of children and young people with complex care needs. DESIGN: An explorative qualitative design. METHODS: We conducted 16 in-depth interviews with parents of children and young people with complex care needs across Norway from February to May 2022. Data collection and analysis were guided by the theoretical framework of van Manen's phenomenology of practice approach. RESULTS: Four distinct but interwoven themes reflecting the comprehensive and holistic nature of parents' existential lived experiences emerged: lived body: "I am forever changed"; lived space: Seeking sanctuary; lived time: "Time doesn't seem to exist"; and lived self-other: Parents' changing relationships. CONCLUSIONS: Parents' ongoing efforts to manage fluctuations in their daily lives profoundly affect the existential aspects of their well-being, suggesting that respectful and attentive nurse-parent relationships can nurture existential growth. IMPLICATIONS FOR THE PROFESSION AND PATIENT CARE: There is a crucial need for a genuine nursing presence characterised by an attitude of open sensitivity and attentive listening to parents' existential experiences. Nurses should embrace the opportunity to engage in respectful and attentive dialogues with parents. Acknowledging that the insights emerging from these conversations can improve integrated and personalised nursing services worldwide. IMPACT: Parents of children and young people with complex care needs often experience suboptimal healthcare. Additionally, access to quality healthcare services, particularly in rural areas, is limited, creating inefficiencies and coordination challenges. This study provides nurses, other health care professionals, researchers, and decision-makers with valuable perspectives on supporting parents' existential needs which may significantly impact their overall well-being and coping abilities, contributing to a more compassionate approach to family care. REPORTING METHOD: Consolidated Criteria for Reporting Qualitative Research (COREQ). PATIENT OR PUBLIC CONTRIBUTION: Parents of children and young people with complex care needs provided valuable feedback on the findings and implications of this work.

The Supportive Care Needs of Individuals Living With Advanced or Metastatic Lung Cancer Receiving Targeted or Immunotherapies.

OBJECTIVE: Lung cancer is associated with the highest incidence and mortality of all cancers. New treatments, called targeted therapies (TT) and immunotherapies (IO), offer higher treatment efficacy and fewer side effects compared to traditional treatments but are accompanied by uncertainty and an unpredictable treatment course. There is a paucity of research on the experiences of individuals living with advanced or metastatic lung cancer receiving TT/IO, and even less is known about the supportive care needs of this population. METHODS: Twenty four participants from across Canada participated in semi-structured interviews regarding their supportive care needs. Thematic analysis was utilized to identify their supportive care needs. RESULTS: Qualitative coding identified unmet needs and challenges. All participants indicated difficulties with unmet supportive care needs, including psychological, informational, and practical needs. CONCLUSIONS: The exploration of supportive care experiences of patients receiving TT/IO exposes high distress and unmet needs. Results indicate the need for timely and accessible supportive cancer care. Results can inform patient advocacy efforts and the development of new services.

Unlocking compassion: expanding access to palliative care in Saudi Arabia.

Background: Palliative care is an essential element of the healthcare system. It has profound benefits for patients with life-limiting illnesses. The Saudi Arabian healthcare system lags in integrating this vital component effectively. Hence, estimating the palliative care needs of the Saudi Arabian population is crucial to understanding the country's demand for palliative care. Aim: To assess the past trends in adult palliative care needs in Saudi Arabia. Methods: The current research used population-based secondary data analysis by employing two palliative care needs estimation methods: the direct or fixed estimation method by Gómez-Batiste and the maximum or maximal method by Murtagh and Rosenwax. The estimated palliative care needs were stratified by gender. Results: An upward trend in the palliative care needs of the Saudi Arabian population is evident through the estimation techniques. The proportion of palliative care needs relative to deaths climaxed at 95% in the observed years. By 2022, the number of people requiring palliative care skyrocketed to 79,725 (fixed method) and 101,623 (maximal method). Conclusion: The need for palliative care in Saudi Arabia substantially rose in the observed years. It is inevitable to bridge the gap between palliative care needs and supply with advanced integration of palliative care services in the national healthcare system.

'But Would I Be Able to Toast With Friends?' When Service Users Ask for New Care Pathways.

INTRODUCTION: The WHO European Mental Health Action Plan (2013-2030) emphasises the need to generate services that are more inclusive and attentive to the co-construction of care practices. This exploratory research investigates the needs of young substance abusers shown during their stay in residential communities; in particular, it explores the idea that treatment may include a new phase focused on how to manage moderate or controlled alcohol intake during residential care. Interviews with young ex-users open up critical reflections on complete abstinence programmes from all substances, including alcohol, as a prerequisite for discharge and also provide examples of how to co-design a plan for mindful drinking. METHODS: Fourteen young adults, aged 19-32 years, non-alcoholists, treated at rehab in Fermo, in central Italy, were interviewed during a programme between 6 and 18 months of period. They were asked about exploring needs in preparation for the conclusion of the rehabilitation pathway. From this exploration emerged the need to introduce controlled alcohol intake during the rehabilitation stay. This request became the focus of the semi-structured interviews. RESULTS: Three main themes emerged, which are as follows: (1) difficulties in integrating the new identity with the past of consumption, (2) resistance to the idea of total abstinence in social relations and (3) uncertainties about post-community behaviour regarding alcohol intake. At the same time, three unexpected needs were expressed: (1) test the personal knowledge and skills on how to manage the alcohol intake, (2) receive support during the residential path to build up self-control competence given the post-discharge period and (3) build a personalised therapeutic path together with the supervisor and the operators while still at the rehab, according to the realistic lifestyle and routine outside the rehab. CONCLUSIONS: This research highlights the importance of personalising treatment based on each user's needs, going far beyond the standardised treatments for users previously considered unable of self-control and self-determination. For that purpose, the relationship between the users and the operators might be privileged, as it is able to cover the specific needs aimed for the new identity. INVOLVING THE PARTICIPANTS: The research sparked a discussion within the community, involving and initiating an open dialogue between the operators and the users, allowing them to focus on certain innovative strategies offered by the service, putting the users' needs at the very centre of the attention. The results were compared and discussed actively with the participants involved.

The burden of headache disorders in the adult population of Mongolia: estimates, and a health-care needs assessment, from a cross-sectional population-based study.

BACKGROUND: Having previously shown headache disorders to be prevalent in Mongolia, here we elaborate on headache as a public-health concern in this country, reporting symptom burden and headache-attributed impaired participation at individual and societal levels, and conducting a health-care needs assessment. METHODS: The study followed the standardized methodology developed by the Global Campaign against Headache, generating a representative general-population sample through multi-level randomized cluster sampling. Participants aged 18-65 years were interviewed at unannounced household visits by interviewers administering the HARDSHIP questionnaire. Symptom burden was established through questions on frequency, duration and intensity of headache, with proportion of time in ictal state calculated from frequency and duration. Individual impaired participation was established through the HALT questionnaire, enquiring into lost time from paid and household work and from leisure activities. Symptom burden and impaired participation yesterday were also assessed in those reporting headache yesterday. Population-level estimates were derived by factoring in prevalence. RESULTS: The total sample included 2,043 participants. Those reporting any headache in the last year (n = 1,351) spent, on average, 9.7% of all their time with headache, losing 1.3 workdays and 2.4 household days/3 months. These losses were considerably higher among those with probable medication-overuse headache (37.5%, 3.5 workdays, 6.7 household days) or other headache on ≥ 15 days/month (H15+) (21.9%, 2.4 workdays, 5.1 household days). At population-level (including those with and without headache), 6.2-7.4% of all time was spent with headache, 3.1% with H15+; 0.8 workdays and 1.4 household days/person/3 months were lost to headache, 0.3 workdays and 0.6 household days to migraine (the biggest contributor of all headache types). Our needs assessment estimated that one third (33.2%) of the adult population of Mongolia have headache (mostly migraine or H15+) likely to benefit from health care. CONCLUSION: This first population-based study on headache burden in Mongolia shows high levels of individual and societal burden, with H15 + the cause of greater burden at population level than migraine and TTH combined. Migraine, however, has the biggest impact on the nation's productivity. From a purely economic perspective, Mongolia, with limited health resources, would probably be best served by focusing on mitigating migraine-attributed burden.

How Do Nurses Experience Relational Work in the Emergency Department-Qualitative Study.

INTRODUCTION: This study aimed to explore how nurses experience relational work in the emergency department. METHODS: A qualitative design with 34 focus group interviews using an abductive thematic analysis were completed for this study. Participants were recruited from an annual mandatory continuous learning program in 2020-2022 at 2 university hospitals in the Capital Region of Denmark. We applied semistructured interviews in an instructor-supported reflection session on the topic "relational nursing care." Group discussion was supported by an interview guide addressing key elements of the nurse-patient relationship as described in the fundamentals of care framework. RESULTS: Acute care nurses' attention was primarily directed toward the initial patient assessment, rather than toward the later stages of the patient trajectory. Forming a relationship with the patient was highly individual and done at the discretion of each nurse. The key elements of relational nursing were not mutually exclusive, but the findings could be separated into biomedical and relational care, where biomedical tasks took precedence. DISCUSSION: Relational care in the emergency department is optional and individually performed. Moreover, emergency nurses lack a vocabulary to express this type of work. Consequently, there is a risk that patients' psychosocial needs are not sufficiently met. According to the emergency nurses participating in this study, nurses fall short when performing and describing relational care. Nurses need more knowledge to address the psychosocial patient needs during short-term hospital admissions. Relational care and patient centeredness also need to be acknowledged by nursing leaders and further developed.

Past trends and future projections of palliative care needs in Chile: analysis of routinely available death registry and population data.

BACKGROUND: The number of people with palliative care needs is projected to increase globally. Chile has recently introduced legislation for universal access to palliative care services for patients with severe and terminal illnesses, including non-cancer conditions. We aimed to estimate the number of people affected by serious health-related suffering and need for palliative care in Chile to 2050. METHODS: We used data on all deaths registered in Chile between 1997-2019 and population estimates for 1997-2050. We used Poisson regression to model past trends in causes of death adjusted by age, sex and population estimates, to project the number of deaths for each cause from 2021 to 2050. We applied the Lancet Commission on Palliative Care and Pain Relief weights to these projections to identify decedents and non-decedents with palliative care needs. RESULTS: Population palliative care needs in Chile are projected to increase from 117 (95% CI 114 to 120) thousand people in 2021 to 209 (95% CI 198 to 223) thousand people in 2050, a 79% increase (IRR 1.79; 95% CI 1.78-1.80). This increase will be driven by non-cancer conditions, particularly dementia (IRR 2.9, 95% CI 2.85-2.95) and cardiovascular conditions (IRR 1.86, 95% CI 1.83-1.89). By 2050, 50% of those estimated to need palliative care will be non-decedents (not expected to die within a year). CONCLUSIONS: Chile will experience a large increase in palliative care needs, particularly for people with dementia and other non-cancer conditions. Improved availability of high-quality services, expanded clinician training and new sustainable models of care are urgently required to ensure universal access to palliative care.

Supportive care needs, quality of life and social support among elderly colorectal cancer patients undergoing chemotherapy: a longitudinal study.

Objective: The purpose of this study is to examine the changes in supportive care needs, quality of life and social support during different chemotherapy cycles among elderly colorectal cancer patients. Methods: This prospective longitudinal study recruited 160 elderly colorectal cancer patients using convenience sampling at a hospital in Guangxi between August 2023 and April 2024. To assess supportive care needs, quality of life, and social support, we used a short form of the Supportive Care Needs Survey (SCNS-SF34), a Functional Assessment of Cancer Therapy-colorectal (FACT-C), and a perceived social support scale (PSSS) prior to chemotherapy, as well as after the first, third, and sixth cycles. Repeated measures analysis of variance was used to validate the changes over time in supportive care needs, quality of life, and social support. Results: 155 participants completed all questionnaire sessions across the six cycles. From pre-chemotherapy until after the sixth cycle of chemotherapy, the extent of physical and daily living requirements among all respondents fluctuated between 47.23% and 88.26%, psychological needs ranged from 60.84% to 97.67%, patient care and support needs ranged from 83.75% to 99.35%, healthcare system and information needs varied from 85.98% to 99.00%, while the level of sexual needs decreased from 1.51% to 0.65%. The mean SCNS-SF34 scores for these participants ranged between 103.81 ± 2.28 and 144.10 ± 1.08. Significant increases over time were seen for all domains of SCNS-SF34 (F=126.99, 347.41, 65.00, 72.34, 160.15, p<0.001), keeping a clear upward trend, except for sexual needs(F=0.712, p=0.546). The mean FACT-T scores dropped from 68.80 ± 1.00 to 51.24 ± 1.40, while the mean PSSS scores dropped from 55.77 ± 0.83 to 43.28 ± 1.05. The scores of FACT-T and PSSS showed statistically significant differences (F=231.21, 112.28, p<0.001), maintaining clear downward trends. Conclusion: During chemotherapy, elderly colorectal cancer patients continue to require high levels of supportive care, while their quality of life and social support gradually decline. This study offers healthcare practitioners a foundational understanding to identify and address the supportive care needs of elderly colorectal cancer patients across various chemotherapy phases, which facilitates the development of tailored strategies aimed at enhancing patients' quality of life.