Learning from the past: How lessons from Hinman syndrome can inform the psychological management of lower urinary tract dysfunction.

INTRODUCTION: Pediatric patients with lower urinary tract dysfunction (LUTD) experience a variety of medical and psychosocial concerns that can negatively impact their clinical management and quality of life. When initially described by Drs Hinman and Baumann, patients with a form of severe LUTD, later dubbed Hinman syndrome, were characterized as having a "general attitude of being failures." While this mention was noteworthy as it incorporated an understanding of the interplay between psychological factors and urologic conditions, there have been delays in implementing psychological intervention as a standard of care in patients with LUTD broadly, and perhaps too keen of a focus on youth diagnosed with Hinman syndrome specifically. METHODS: A non-systematic reviewed of LUTD related to psychological management was performed. Clinical recommendations were developed by a multicenter and multidisciplinary team of care providers with topic expertise. OBJECTIVE: The aim of this paper is to propose a systems thinking paradigm for how to involve psychology, or psychological principles, across the spectrum of patients with LUTD with the hope of improving attention to specific aspects of care that may improve clinical management. DISCUSSION: Children across the spectrum of LUTD are likely to benefit from psychological interventions and would benefit from such involvement early on to mitigate the impact of psychosocial concerns on medical outcomes. Pediatric psychologists are well-suited to identify and provide individualized care to patients in greatest need of intervention, such as through pre-procedural preparedness, addressing non-adherence, and with the use of evidence-based, targeted mental health interventions. Psychologists are also apt at implementing interventions while taking into consideration the severity of LUTD, in the context of the patient's psychological, developmental, cultural, familial, and social determinants of health considerations. Youth with severe forms of LUTD, such as Hinman syndrome, likely exemplify the challenges of LUTD that benefit from multidisciplinary intervention. CONCLUSION: Medical and psychological collaboration are key to ensuring symptom mitigation and emotional support for patients across the entire spectrum of LUTD.

Evaluating a shared care pathway intervention for people receiving chemotherapy to reduce post-treatment unplanned hospital presentations: a randomised controlled trial.

PURPOSE: The aim of this randomised controlled trial (RCT) was to explore whether a community nursing intervention for outpatients receiving systemic therapy reduced unplanned hospital presentations and improved physical and psychosocial health outcomes over the first three cycles of treatment compared to a control group receiving standard care. METHODS: The number of and reasons for unplanned presentations were obtained for 170 intervention and 176 control group adult patients with solid tumours starting outpatient chemotherapy. Poisson regression was used to compare the number of presentations between the intervention and control groups. Patients self-completed the Hospital Anxiety and Depression Scale, the Cancer Behavior Inventory and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire core 30 (EORTC QLQ-C30) at the start of the first four cycles. Linear regression techniques were used to compare quality of life outcomes. RESULTS: The reduction in unplanned presentations in the intervention group relative to the control group was 12% (95% CI, - 25%, 37%; P = 0.48). At the start of cycle 4, there was no difference in anxiety (difference = 0.47 (95% CI, - 0.28, 1.22; P = 0.22)), depression (difference = 0.57 (95% CI, - 0.18, 1.31; P = 0.13)) or EORTC QLQ-C30 summary score (difference = 0.16 (95% CI, - 2.67, 3.00; P = 0.91)). Scores for self-efficacy as measured by the Cancer Behavior Inventory were higher in the intervention group (difference = 4.3 (95% CI, 0.7, 7.9; P = 0.02)). CONCLUSION: This RCT did not demonstrate a benefit in reducing unplanned presentations to hospital. The trial identified improved cancer-based self-efficacy in patients receiving the intervention. TRIAL REGISTRATION: Registered at Australian and New Zealand Clinical Trials Registry: ACTRN12614001113640, registered 21/10/2014.

Ensuring our exstrophy-epispadias complex patients and families thrive.

Individuals with bladder exstrophy-epispadias complex (EEC) need long-term integrated medical/surgical and psychosocial care. These individuals are at risk for medical and surgical complications and experience social and psychological obstacles related to their genitourinary anomaly. This care needs to be accessible, comprehensive, and coordinated. Multiple surgical interventions, reoccurring hospitalizations, urinary and fecal incontinence, extensive treatment regimens for continent diversions, genital differences, and sexual health implications affect the quality of life for the EEC patient. Interventions must include psychosocial support, medical literacy initiatives, behavioral health services, school and educational consultation, peer-to-peer opportunities, referrals to disease-specific camps, mitigation of adverse childhood events (ACEs), formal transition of care to adult providers, family and teen advisory opportunities, and clinical care coordination. The priority of long-term kidney health will necessitate strong collaboration among urology and nephrology teams. Given the rarity of these conditions, multi-center and global efforts are paramount in the trajectory of improving care for the EEC population. To achieve the highest standards of care and ensure that individuals with EEC can thrive in their environment, multidisciplinary and integrated medical/surgical and psychosocial services are imperative.

Preventing Pediatric Medical Traumatic Stress in a Pediatric Urology Outpatient Setting: Application of the Pediatric Psychosocial Preventative Health Model (PPPHM).

OBJECTIVE: The objectives of this topical review are to (1) increase understanding of pediatric medical traumatic stress (PMTS) in pediatric urology populations through literature review, (2) identify a theoretical model to guide prevention of PMTS in this population, and (3) provide clinical care recommendations based on the model identified. Authors introduce a new term "uropsychology" to describe psychological practice that specializes in the treatment of urology patients. METHODS: Pediatric uropsychologists from 5 pediatric medical care centers gathered to discuss their experience with treating PMTS in their settings and to review existing literature related to PMTS in pediatric urology, PMTS in other populations, and established models for prevention. Authors provide recommendations based on literature review for preventing PMTS in a pediatric urology population. RESULTS: Gaps in the evidence base for preventing PMTS in this population are identified. Authors provide a series of clinical care recommendations, utilizing clinical experience, and the Pediatric Psychosocial Preventative Health Model (PPPHM) as a framework. CONCLUSIONS: While there is limited research on PMTS in pediatric urology populations, urologic interventions can be perceived as invasive, painful, distressing, and traumatic. Application of the PPPHM can guide prevention and intervention efforts. Future research is needed to characterize PMTS in this population, evaluate the efficacy of trauma-informed prevention and intervention practices, and develop screening measures that accurately identify at-risk patients. Authors recommend intradisciplinary collaboration among uropsychologists, urology specialists, and patients and families to create formal standards of care, avenues for other future research, and equitable access to uropsychology care.

Characterizing psychosocial services in a pediatric urology practice.

INTRODUCTION: Psychosocial needs, which encompass behavioral health and social determinants of health (SDOH), are important mediators of the patient experience and health outcomes. However, many practices have limited experience with systematically assessing the non-billable psychosocial services provided to patients and families. OBJECTIVE: To characterize the non-billable activities of three psychosocial providers in a pediatric urology practice at a freestanding children's hospital. STUDY DESIGN: Following Institutional Review Board approval, an adapted version of the Care Coordination Measurement Tool (CCMT) was used to collect data prospectively on non-billable activities performed by a psychologist, social worker (SW), and certified child life specialist (CCLS) in a pediatric urology department. Variables included activity type, time spent per activity, and outcomes affected. Demographic data included age, sex, race, state, zip code, insurance type, and language. RESULTS: From April to October 2022, 3096 activities were performed in support of psychosocial needs over 947 encounters for 527 patients. The median patient age was 9.2 years (IQR 4.8-12.4); 48.4 % were male. The psychosocial providers most commonly identified care coordination needs related to delivery of urologic care (73.4 %), mental/behavioral/developmental health (29.1 %), and referral and appointment management (19.9 %). The largest proportion of time was spent on providing direct psychosocial support (45.9 %), consisting of psychosocial assessments, education, and other behavioral health interventions. A large proportion of time was also spent on care coordination activities, namely logistics and navigation support (35.9 %). Relative time allocation across activities varied by provider type (p < 0.001); care coordination constituted 64.2 % of non-billable activities for the psychologist, 57.8 % for the SW, and 12.3 % for the CCLS. Activities were associated with treatment plan modification in 37.7 % (n = 357), outpatient coordination in 22.5 % (n = 213), and treatment plan adherence in 19.0 % (n = 180) of encounters. DISCUSSION: This study enhances our understanding of psychosocial needs of patients in a pediatric urology practice by assessing non-billable psychosocial services not otherwise captured in the clinical workflow. In addition to direct psychosocial support, care coordination activities constitute a large proportion of such services. These data provide valuable insight into the range of activities necessary for the provision of specialty pediatric medical care. CONCLUSION: Psychosocial providers in a pediatric urology practice perform many non-billable care coordination and psychosocial support activities. Characterizing these activities is important for beginning to understand patients' psychosocial needs and informing resource deployment.

The impact of clean intermittent catheterization on students and families in the school environment.

INTRODUCTION: Clean intermittent catheterization (CIC) is often used for bladder emptying in children with lower urinary tract dysfunction. Until recently, the emphasis in assessing the effects of CIC has been on preserving kidney function, reducing urinary tract infection, and achieving urinary continence. Few studies have investigated the impact of CIC on students and families in a school setting. This study sought to examine what students and caregivers experienced when CIC was required during the school day and how schools adjusted to a student needing to perform it. MATERIALS AND METHODS: A phenomenological approach utilizing semistructured interviews was performed to understand the impact of CIC on students. Purposeful sampling identified eligible families. A guide was developed from expert opinion validated by a pilot sample with feedback collated into a family/provider codesigned questionnaire. Interviews emphasized the impact and challenges students faced at school. Transcripts were coded using Dedoose software with emerging themes identified and a code book was created for closed coding that led to thematic analysis. RESULTS: A total of 40 families (52 caregivers and children > 12 years) were interviewed. Emergent themes included: Caregivers and students felt (1) school personnel were not always aware of nor prepared regarding the implications of CIC; (2) school bathrooms were often less than ideal (e.g., location, size, cleanliness, privacy, and availability); and (3) student participation in extracurricular activities was challenging. CONCLUSIONS: This study identifies potential areas of intervention in meeting the needs of students who require CIC and the importance of having collaborative efforts of caregivers, health care providers, and school personnel in addressing and meeting CIC needs. Care coordination that involves consistent communication and careful planning between health care teams, school personnel, students, and caregivers can optimize a student's educational experience.

Facilitators and challenges to transitioning to self-catheterization: Patient and caregiver perspectives.

INTRODUCTION: Clean intermittent catheterization (CIC) is a well-established method of managing lower urinary tract dysfunction. Depending on the age at introduction, caregivers might perform CIC initially but then transition responsibility to their children. Little is known about how to support families during this transition. Our aim is to learn the facilitators and challenges experienced when supporting the transition from caregiver-led CIC to patient self-CIC. MATERIALS AND METHODS: A phenomenological approach was used to gather information from caregivers and children >12 years through semistructured interviews. Thematic analysis was utilized to generate themes around experience with the transition from caregiver-led CIC to patient self-CIC. RESULTS: Of the 40 families interviewed, 25 families underwent successful transition to patient self-CIC. Analysis of excerpts identified a three-step process, including (1) desiring to learn self-CIC, (2) practical learning of CIC techniques, and (3) mastering of techniques leading to emotional and physical independence. Many families experienced challenges in transitioning to self-CIC, including patient or caregiver reluctance, improper equipment, past negative experiences, lack of knowledge about urinary tract anatomy and function, abnormal anatomy, and/or moderate to severe intellectual disability. DISCUSSION: Authors reviewed interventions to address challenges and provide clinical care recommendations to enhance success during the transition to patient self-CIC. CONCLUSION: No prior studies have identified this stepwise process that occurs in the transition from caregiver-led CIC to patient self-CIC. Healthcare providers and school officials (where indicated) can support families during this transition, with attention to facilitators and challenges identified in this study.

Comorbidity of Obsessive-Compulsive Symptomatology and Bowel and Bladder Dysfunction in a Tertiary Children's Hospital: A Case Series.

OBJECTIVE: To improve understanding of co-occurring obsessive-compulsive disorder (OCD) and bowel and bladder dysfunction (BBD) in an outpatient pediatric urology clinic setting. To provide a series of clinical care recommendations to enhance the identification and integrated medical and behavioral health treatment of these disorders. METHODS: Authors participated in a series of discussions to define the patient population and specific aims for the study. Efforts were made to select index patients of diverse background despite limited sample availability. Three patients were ultimately selected for the study. RESULTS: The case studies highlight the connection between urinary issues and underlying OCD symptoms. All patients were initially seen for medical treatment of urological symptoms, then referred for psychological evaluation, and were diagnosed with and received treatment for OCD. Similarities among the cases, including experience of phantom urinary incontinence, stressors present that contributed to symptoms, and obsessive fears of incontinence that led to compulsive behavior, were discussed. Differences between the cases, including patient age, sex, and compulsive behavior demonstrated (ie, urinary frequency, excessive wiping) were also reviewed. CONCLUSION: Access to a behavioral health provider can enhance the identification of comorbid psychological disorders and can reduce duration of symptoms through appropriate psychological treatment. Authors provide recommendations for screening measures and reinforce importance of including basic education on psychiatric diagnoses and impact on urological symptoms in urology and pediatric fellowship training programs. Future research exploring prevalence of comorbid psychiatric conditions and efficacy of treatment interventions in a pediatric urology population would be beneficial.

The art of introducing clean intermittent catheterization: How families respond and adapt: A qualitative study.

INTRODUCTION: Since its inception >50 years ago, clean intermittent catheterization (CIC) has become ubiquitous in managing lower urinary tract dysfunction in children. Emphasis has been on its impact on daily life, but little on its implementation and adjustment in families. The aim of the current study was to discover how families learned to implement and manage their child's CIC needs by interviewing caregivers, adolescents, and young adults about their experiences. Interviews were designed to uncover facilitators and barriers to beginning CIC to initiate potential improvements in a multidisciplinary approach. METHODS: A semi-structured interview guide was developed and piloted initially to 12 families for validation. Between August 2018 and October 2019, 40 families (52 interviews of caregivers and patients >12 years) were then interviewed with open-ended questions interspersed with more specific ones to generate discussion. Transcripts were coded using Dedoose software to create a base list with emergent codes. Inductive and deductive methods were employed to generate themes. Consensus was reached during successive team meetings. RESULTS: Five major and several subthemes emerged regarding implementation of CIC by caregivers and patients learning CIC for the first time. THEME 1: Parental reaction to CIC: Caregivers described benefits of an adjustment period on learning their child's need for CIC. Prenatal information to caregivers of spina bifida children gave them time to mentally process the need for CIC. THEME 2: Ease of learning CIC: impact of age and gender: caregivers identified advantages of initiating CIC in infancy. Caregivers speculated CIC was physically easier in boys than girls due to meatus location. Developmentally ready children expressed a desire for independence and privacy as they learned to initiate CIC. THEME 3: The impact of additional caregiver support in learning and performing CIC: presence of multiple caregivers optimized learning and implementation of CIC. Having secondary caregivers available provided peace of mind and more flexibility in maintaining reliable CIC care. Patients learning CIC found it helpful to have a parent present at the teaching session. Occasionally, female caregivers reported feelings of anger and frustration when male caregivers were reluctant to be involved in catheterization, irrespective of their child's gender. THEME 4: Satisfaction with healthcare team's approach: The healthcare team's responsiveness to their learning needs affected how they mastered CIC. The healthcare team's teaching and reassurance helped build caregiver confidence. Developmentally appropriate children were able to learn self-catheterization when supported by the healthcare team. Patients learning self-CIC articulated having a supportive healthcare team was helpful with implementation. THEME 5: Effect of CIC on employment status relative to job changes, insurance, and daycare: implementing and performing CIC presented a spectrum of issues related to employment. Educating employers regarding CIC facilitated a caregiver's ability to both remain at work and administer to their child. Caregivers underscored the importance of adequate insurance when considering employment choices. Concerns about daycare availability affected caregivers' work schedules. CONCLUSIONS: It is anticipated this information will aid healthcare personnel to more effectively teach and initiate CIC in families, and in individuals learning for the first time. The findings should serve as the basis for conducting future patient satisfaction studies, which would determine the effectiveness and reproducibility of these approaches.

Interdisciplinary Collaboration in a Pediatric Urology Outpatient Clinic at a Tertiary Children's Hospital: A Case Series.

OBJECTIVE: To increase awareness and understanding of how psychology, social work, and child life specialties can integrate into interdisciplinary pediatric urology care. To advocate for increased access to psychology, social work, and child life specialty care in other pediatric urology care centers. METHODS: Authors participated in a series of discussion groups to develop the aim and goals for this study and identify patients that would best exemplify the interdisciplinary nature of care provided. Initially, fifteen patients were selected; further focused discussion groups supported the selection of 6 patients that are described in this study. RESULTS: Authors present a series of 6 case studies aimed to illustrate the interdisciplinary support available to pediatric urology patients in 1 tertiary care center. Cases review a range of presenting issues, including a patient learning clean intermittent catheterization (CIC), a patient resistant to surgical intervention, patients with bowel and bladder dysfunction, a patient undergoing voiding cystourethrogram (VCUG), and a patient with urinary frequency, all of whom presented with a range of psychosocial needs that impacted their urological treatment. CONCLUSION: Access to a psychosocial support staff can improve adherence to medical treatment by reducing barriers to care and promoting behavioral change, support patients in coping and reducing post-traumatic stress following surgery and invasive procedures, improve communication between patients, families, and medical staff, and treat psychological issues that contribute to urinary symptoms. Additional literature exploring how these interventions reduce costs associated with medical intervention, hospitalizations, outpatient visits, emergency visits, and sedation for procedures would be beneficial.

Patient perceptions of a community-based intervention designed to provide support post administration of anti-cancer systemic treatments: A qualitative evaluation.

PURPOSE: This paper reports on patient participant experiences of a larger randomised controlled trial evaluating a shared-care pathway intervention designed to support outpatients at home during their first three cycles of systemic anti-cancer therapies delivered in two large tertiary hospitals in Sydney, Australia. This qualitative study explores the perspectives of patient participants who received the intervention, which involved targeted home visits by community nurses post treatment administration. METHODS: A qualitative inductive thematic analysis was used to examine data from semi-structured interviews with patients who received the intervention. RESULTS: Twenty-five patient participants were interviewed. We identified four themes: Stepping into the unknown; Impact of availability of health and social care support; Building confidence to manage self-care; Uncertainty, frailty and co-morbidities. Targeted support at home is seen to be effective and welcomed by patients as early stages of each treatment cycle can be extremely challenging, particularly for those who are elderly, frail or with co-morbidities, and for those with limited health and social support. CONCLUSION: Regular contact with community nursing services can, at least for some patients, support the development of patient self-efficacy in managing aspects of their own care. Some patients are sufficiently confident to self-manage some treatment side effects by treatment cycle four.

Characterization Study of Patients Presenting to an Acute Care Pediatric Hospital Identified With Avoidant/Restrictive Food Intake Disorder.

OBJECTIVES: Nearly one-quarter of individuals diagnosed with avoidant/restrictive food intake disorder (ARFID) require medical admission. There have been efforts to characterize ARFID in outpatient and intensive day treatment settings; however, authors of few studies have examined this presentation in the inpatient pediatric hospital setting. In this study, we aim to further characterize patients presenting to the hospital with concerns for ARFID. METHODS: This study involved a retrospective chart review of medically admitted patients with ARFID seen by the psychiatry consultation service at a tertiary care New England pediatric hospital from 2015 to 2016. RESULTS: The typical hospitalized patient with ARFID was a 12.9-year-old, white girl with previous history of outpatient mental health treatment, anxiety disorder, and gastrointestinal-related diagnoses admitted to adolescent medicine or pediatric hospitalist services with >1 year of feeding difficulties often triggered by a precipitating event. Despite >80% of subjects receiving evaluations as outpatients for feeding-related concerns, including 60.5% seeing their primary care provider, <20% were diagnosed with ARFID before hospitalization. The average length of admission was 8 days. All imaging, scopes, and swallow studies conducted during the admission were nonrevealing. Almost half of patients required enteral tube feeds, and 63.2% required psychiatric medications during the admission. Only 31.6% of patients had the ARFID diagnosis documented in their discharge notes. CONCLUSIONS: Consistent identification of ARFID remains variable, underrecognized by community providers, and underdocumented by hospital providers. Accurate recognition of ARFID and additional study into contributory factors and treatment approaches may help improve effective health care use and treatment outcomes.

Risk factors for in-season injury in varsity collegiate cross-country athletes: an analysis of one season in 97 athletes.

BACKGROUND: Cross-country runners experience high rates of injury. This prospective cohort study aimed to identify pre-season risk factors for in-season injury in a cohort of collegiate cross-country athletes. METHODS: Pre-season and post-season electronic surveys were designed and administered to 297 NCAA Division I and III runners in August and November 2016, respectively. Pre-season surveys queried athletes' training methods, lifestyle habits, and history of previous injuries. Post-season surveys queried occurrence of new injuries sustained during the season. The risk of new injury was examined based on weekly mileage, sleep, diet, training routines, BMI, and history of previous injuries. RESULTS: Fifty-three percent of athletes sustained a new injury (acute injury or exacerbation of a chronic injury) during the season. In univariate analysis, the existence of a pre-season injury (RR 1.57, 95% CI 1.11-2.23, P=0.01), large mileage increases (RR 1.55, 95% CI 1.09-2.22, P=0.02), and poor sleep quality (P=0.04) were significantly associated with higher risk for injury among collegiate cross-country athletes. CONCLUSIONS: Cross-country athletes with an existing injury during the pre-season, large mileage increases during the season, and poor sleep quality may be at increased risk of sustaining a new acute injury or exacerbate an existing injury during the cross-country season. Coaches, athletic trainers, and athletes can use these results to modify training regimens and lifestyle factors to decrease the risk of injury.

Alternating Pressure Overlay for Prevention of Intraoperative Pressure Injury.

PURPOSE: The purpose of this study was to evaluate the effect of a low-profile alternating pressure (AP) overlay system on hospital-acquired pressure injuries (HAPIs). DESIGN: Prospective case series with historical controls. SUBJECTS AND SETTING: The study setting was the operating room and critical care unit of an urban quaternary care hospital in the Midwestern United States. One hundred neurosurgery patients undergoing surgery for 2 hours or longer in supine position were included in the study (AP group). The outcomes for the AP group were compared to a historical control group of 292 patients. METHODS: A group of 100 patients were prospectively placed on the AP overlay during surgery. Participants were enrolled preoperatively and tracked by the research team during their hospital stay. Demographic data, details of the operation, and pressure injury risk factors were recorded. Following surgery, AP group patients were evaluated daily and continued on standard protocol for pressure injury prevention. The primary study outcome was HAPI rate during the perioperative period (up to 5 days postsurgery) for the AP group (plus standard of care) compared to the standard of care alone (historical control). Control group data were extracted from electronic health records for the prior 2 years. A written questionnaire was given to the care team that used the AP technology; items queried the degree of acceptance of the overlay by surgeons and the operating room and intensive care unit (ICU) staff. RESULTS: None of the patients in the AP group developed perioperative pressure injuries. Review of historical control group revealed a 6% perioperative pressure injury incidence (18 pressure injuries in a group of 292 patients). Responses on the written questionnaire indicated that the AP technology was well accepted by surgeons and the operating room and ICU staff. There were no adverse events. CONCLUSIONS: Study findings suggest that AP overlay system can safely and reliably be used during neurological surgeries. Findings further suggest that using the AP product may improve outcomes with respect to perioperative HAPIs, including patients deemed at high risk for pressure injury development. Further studies are underway to evaluate the use of this AP overlay system beyond the operating room for more comprehensive care.

Palliative care nurses' spiritual caring interventions: a conceptual understanding.

AIMS: To investigate spiritual caring by palliative care nurses and to describe their interventions. BACKGROUND: Spirituality and spiritual caring are recognised as integral components of holistic nursing. DESIGN: Qualitative data captured on a questionnaire were analysed thematically ( Braun and Clarke, 2006 ). METHODS: The study involved forty-two palliative care registered nurses working across seven palliative care services in Sydney, Australia. The research question was: 'What spiritual caring interventions do palliative care nurses use in their practice?' Nurses completed an open-ended questionnaire to identify and interpret their spiritual caring. FINDINGS: Three sub-theme categories and four major concepts of spiritual caring. Categories identified are: humanistic, pragmatic and religious interventions; while concepts of spiritual caring are: 'being with', 'listening to', 'facilitation of' and 'engaging in'. CONCLUSION: A conceptual understanding of spiritual caring was identified.

'Shadowing' as a management strategy for chemotherapy outpatient primary support persons.

Despite growing numbers of patients with cancer receiving chemotherapy in outpatient settings and the corresponding increase in care demands on family and close friends, little is known about the experiences of those informal carers supporting people with cancer during their chemotherapy trajectories. Using an interpretivist theoretical framework, this study explored the experiences of primary support persons of chemotherapy outpatients through in-depth interviews with 17 participants nominated as their primary support persons by people receiving chemotherapy at a large tertiary hospital in Australia. The study demonstrates that primary support persons of chemotherapy outpatients face distinct challenges, being at the frontline of treatment and managing side effects with minimal support at home. This role involves sensitive provision of complex medical and social care in circumstances that profoundly challenge the everyday worlds of both patient and carer. From the moment of diagnosis, informal carers in this context face the 'double whammy' of needing to 'manage' the cancer diagnosis experience as well as the chemotherapy trajectory experience. This study points to the significant level of responsibility that primary support persons take on, and the extent to which patients and clinicians rely on their support and management skills. It also points, however, to the lack of recognition they receive for assuming this role, and their sense of frustration in the face of this invisibility. The conceptualisation of the informal carer role as a 'shadowing' role explicitly represents the protective, vigilant, but almost invisible, support role described by the participants in this study.

Spirituality and spiritual caring: nurses' perspectives and practice in palliative and acute care environments.

AIMS AND OBJECTIVES: Identify and compare spiritual caring practice by palliative care and acute care registered nurses (RNs), determine any correlation between nurses' spiritual perspective and their spiritual caring, and to investigate perceived barriers to spiritual caring. BACKGROUND: Over the past decade there has been growing interest in spiritual caring in nursing. Professional nursing bodies have proposed spirituality and spiritual caring as an integral component of holistic nursing. DESIGN: Cross sectional study. METHODS: Palliative care RNs (n = 42) from one community palliative care service and three hospices, and acute care RNs (n = 50) from three major acute care hospitals all in metropolitan Sydney, Australia completed a research questionnaire. Two validated tools and a demographic survey were used to collect data. These tools measured spiritual perspectives including saliency of personal spirituality, spiritual views and engagement in spiritually-related activities; and spiritual practice including assessment, interventions and barriers to spiritual caring. Data were collected over a six-month period and interpreted with both descriptive and analytical statistics. RESULTS: Significant differences were seen between the two RN groups. Palliative care RNs' spiritual caring practice was more advanced and their spiritual perspective stronger; this relationship was positive. Both RN groups identified 'insufficient time' as the most common barrier to spiritual caring practice; 'patient privacy' was also common for acute care RNs. CONCLUSIONS: Palliative care RNs' spiritual perspectives influenced their spiritual caring. These nurses were older and more career-advanced than the acute care RNs, which may explain the differences observed. Acute care RNs may benefit from additional support for their spiritual caring and to address perceived barriers. RELEVANCE TO CLINICAL PRACTICE: The development of nurses' spiritual perspective early in their preparation for practice, and the articulation and documentation of spiritual caring may enhance their spiritual caring practice. Further research on barriers to spiritual caring in acute care nursing environments is recommended.

Chemotherapy outpatients' unplanned presentations to hospital: a retrospective study.

GOAL OF WORK: This descriptive, retrospective study sought to identify the nature and magnitude of chemotherapy outpatients' unplanned presentations and admissions to the emergency department and/or cancer centre at a large metropolitan tertiary hospital, and to explore the antecedents to those presentations. PATIENTS AND METHODS: Retrospective data were collected for outpatients who made an unplanned presentation to a large metropolitan hospital in Sydney, Australia between October 1, 2006 and September 30, 2007. Detailed information was collected for those who had received cytotoxic chemotherapy at the hospital's cancer centre within the 6 months prior to the unplanned presentation to hospital. Demographic and explanatory variables were identified, including: reasons for presentation, cancer diagnosis, chemotherapy regimens, and position in the chemotherapy trajectory. MAIN RESULTS: The Cancer Institute NSW figures indicate that each year approximately 518 outpatients are treated with chemotherapy at the participating cancer centre. During the study period, 316 cancer outpatients made 469 unplanned presentations to either the Cancer Centre or the hospital emergency department. Of those outpatients presented, 233 (73.7%) had received chemotherapy in the previous 6 months and made a total of 363 presentations. Of these 363 presentations, 253 (69.7%) occurred within 4 weeks of receiving chemotherapy. The majority of presentations by those who had received chemotherapy in the previous 6 months resulted in hospital admission (87.6%) for a median length of stay of 5 days. The most frequent presentation symptoms were nausea and/or vomiting (45.2%), pain (27%), fever and/or febrile neutropenia (23.4%), shortness of breath (19.3%), dehydration (12.1%), anaemia (8.8%), fatigue (8.8%), diarrhoea (8.8%), and anxiety and/or depression (5.5%). CONCLUSIONS: Chemotherapy outpatients have significant unmet needs following treatment, indicating an urgent need for improved continuity of care and better integration of primary and tertiary health care services.