Patient-family Education Research Articles

What do we miss in this Orbital Retinoblastoma?

Introduction : Orbital retinoblastoma (RB) is a dire event with a bleak prognosis. This report highlights the severe complications of retinoblastoma resulting from insufficient diagnostic and treatment efforts due to inadequate medical resources and socio-economic challenges.
 Case Illustration : A 4-year-old boy was brought in with swelling on his left eye socket and jaw, present for two months.He had exhibited leukocoria followed by proptosis 12 months prior and underwent enucleation without dermato-fat graft (DFG) five months ago. Histopathology revealed retinoblastoma without optic nerve invasion. Despite referral to a regional hospital for chemotherapy, he did not receive treatment due to socio-economic constraints. Two months post-operation, the left eye prosthesis spontaneously dislodged, accompanied by an enlarging eye and a left jaw mass. An ophthalmologic assessment disclosed a mass in the left orbital socket, while the right eye appeared normal. A CT scan identified masses in the left orbit, parotid, and masticator spaces, as well as bilateral colli lymphadenopathy. The patient was diagnosed with residual retinoblastoma and received chemotherapy.
 Discussion : Imaging is crucial in proptosis patients to determine tumor extent and management strategies. The standard approach involves initial chemotherapy, surgery, radiotherapy, and additional chemotherapy. High-risk histological features (HHRF) also warrant chemotherapy, although the presence of such features remains undetermined in this case. Employing multiple treatment modalities may enhance prognosis.
 Conclusion : Thorough examination and management are essential in retinoblastoma cases. Patient family education and diligent care play a crucial role in preventing the progression and spread of retinoblastoma.

Autogenerated Text Updates for Pediatric Surgical Patients

<h3>Background Information</h3> Waiting while a child has surgery is a stressful time for families. Providing timely updates helps families feel engaged and supported. With a focus on the patient-family experience within the healthcare setting, communication plays an integral part in patient/family perception and satisfaction. The Family Services Nursing role provides liaison services between Operating Room personnel and families to educate, support, and guide families through the perioperative experience. Parent tracker boards are also displayed in the waiting area. <h3>Objectives of Project</h3> Text messaging enables family members to confidently untether themselves from the physical waiting area, without fear of missing an update, and still feel engaged. To optimize communication with families and foster a partnership with the healthcare team, the Perioperative Information Systems (IS) committee at Children's Hospital of Philadelphia (CHOP) explored text messaging as a plausible adjunct to current communication systems. <h3>Process of Implementation</h3> The multidisciplinary members of CHOP's Perioperative IS Committee investigated ways to introduce a non-interactive text communication platform to engage families. Committing to fiscal responsibility, the committee assessed resources already available within the institution. Epic, the electronic medical record used at CHOP, provided the springboard for implementation. Case tracking events in Epic trigger autogenerated, prepopulated texts to families, updating throughout surgery. Messages are sent directly to a family member's mobile device without the need to download a separate application. Additionally, there is no interference with Operating Room nursing workflow. <h3>Statement of Successful Practice</h3> A seven-month retrospective analysis showed a consistent increase to over 75% family enrollment. Texting was further operationalized to include CHOP's bedside medication delivery program providing enrolled families with alerts regarding the status of their medications and time of delivery. Texting was subsequently expanded to include a link to patient family education with need-to-know information for the day of surgery. Family Care Specialist Nurses disseminate monthly Press-Ganey Ambulatory Surgery reports to the Peri-Anesthesia Care Unit staff and committees. Anecdotal feedback from families and Press Ganey comments confirm a positive response to the initiative. This validates that texting is a significant adjunct to improve the patient/family experience. <h3>Implications for Advancing the Practice of Perianesthesia Nursing</h3> The use of technology to provide autogenerated text updates promotes patient/family-centered care and patient satisfaction in a convenient and user-friendly way.

Virtual reality-based 3-dimensional localization of stereotactic EEG (SEEG) depth electrodes and related brain anatomy in pediatric epilepsy surgery.

The increasing use of stereoelectroencephalography (SEEG) in the USA and the need for three-dimensional (3D) appreciation of complex spatial relationships between implanted stereotactic EEG depth electrodes and surrounding brain and cerebral vasculature are a challenge to clinicians who are used to two-dimensional (2D) appreciation of cortical anatomy having been traditionally trained on 2D radiologic imaging. Virtual reality and its 3D renderings have grown increasingly common in the multifaceted practice of neurosurgery. However, there exists a paucity in the literature regarding this emerging technology in its utilization of epilepsy surgery. An IRB-approved, single-center retrospective study identifying all SEEG pediatric patients in which virtual reality was applied was observed. Of the 46 patients identified who underwent an SEEG procedure, 43.5% (20/46) had a 3D rendering (3DR) of their SEEG depth electrodes. All 3DRs were used during patient-family education and discussion among the Epilepsy multidisciplinary team meetings, while 35% (7/20) were used during neuronavigation in surgery. Three successful representative cases of its application were presented. Our institution's experience regarding virtual reality in the 3D representation of SEEG depth electrodes and the application to pre-surgical planning, patient-family education, multidisciplinary communication, and intraoperative neuronavigation demonstrate its applicability in comprehensive epilepsy patient care.

Effective Reduction in Opioid Prescriptions for Ambulatory Lesion Excisions in Pediatric Patients.

Background:Childhood opioid consumption is potentially deleterious to cognitive development and may predispose children to later addiction. Opioids are frequently prescribed for outpatient surgery but may not be necessary for adequate pain control. We aimed to reduce opioid prescriptions for outpatient pediatric skin and soft tissue lesion excisions using quality improvement (QI) methods.Methods:A multidisciplinary team identified drivers for opioid prescriptions. Interventions were provider education, improving computer order set defaults, and promoting non-narcotic pain control strategies and patient-family education. Outcomes included percentage of patients receiving opioid prescriptions and patient-satisfaction scores. Data were retrospectively collected for 3 years before the QI project and prospectively tracked over the 8-month QI period and the following 18 months.Results:The percentage of patients receiving an opioid prescription after outpatient skin or soft tissue excision dropped significantly from 18% before intervention to 6% at the end of the intervention period. Patient-reported satisfaction with pain control improved following the QI intervention. Satisfaction with postoperative pain control was independent of closure size or receipt of a postoperative opioid prescription. Intraoperative use of lidocaine or bupivacaine significantly decreased the incidence of postoperative opioid prescription in both bivariate and multivariate analyses. Results were maintained at 18 months after the conclusion of the QI project.Conclusion:Raising provider awareness, educating patients on expected postoperative pain management options, and prioritizing non-narcotic medications postoperatively successfully reduced opioid prescription rates in children undergoing skin and soft tissue lesion excisions and simultaneously improved patient-satisfaction scores.

Promoting Judicious Primary Care Referral of Patients with Chest Pain to Cardiology: A Quality Improvement Initiative.

To decrease referrals to cardiology of patients ages 7 to 21 years with low-probability cardiac pathology who presented to primary care with chest pain by 50% within 24 months. A multidisciplinary team designed and implemented an initiative consisting of 1) a decision support tool (DST), 2) educational sessions, 3) routine feedback to improve use of referral criteria, and 4) patient family education. Four pediatric practices, comprising 34 pediatricians and 7 nurse practitioners, were included in this study. We tracked progress via statistical process control charts. A total of 421 patients ages 7 to 21 years presented with chest pain to their pediatrician. The utilization of the DST increased from baseline of 16% to 68%. Concurrently, the percentage of low-probability cardiology referrals in pediatric patients ages 7 to 21 years who presented with chest pain decreased from 17% to 5% after our interventions. At a median follow-up time of 0.9 years (interquartile range, 0.3-1.6 years), no patient had a life-threatening cardiac event. Our health care improvement initiative to reduce low-probability cardiology referrals for children presenting to primary care practices with chest pain was feasible, effective, and safe.

Pulmonary rehabilitation following the 2019 novel Coronavirus infection

Abstract The treatment of an infectious disease is only one step to a cure and, in many cases, infectious diseases can lead to short-and long-term impairments, including physical, cognitive and psycho-emotional complications. In this paper, we perform a literature review to identify the appropriate rehabilitation interventions for responding to COVID-19 consequences, taking into consideration the current standards for pulmonary rehabilitation and the COVID-19 literature which has been developed during the pandemic’s evolution. Pulmonary, neurological, cardiac, musculoskeletal, nutritional, cognitive and psychological disabilities, as well as dysphasia, have been observed among patients who recovered after needing time in the intensive care unit (ICU), related either directly to COVID-19 or critical care treatments. Some have also been reported in patients who were asymptomatic or recovered from a mild or moderate form of the disease. Patients who still have dyspnea, exercise intolerance and fatigue, are unable to conduct activities of daily living and/or have difficulty in managing or coping with their disease, despite optimised pharmacological therapy, are most likely to benefit from pulmonary rehabilitation. Contraindications should be considered during patient selection. Rehabilitation prescription should be individually tailored, based on patient assessment and outcome measurements. Pulmonary rehabilitation interventions may involve airway clearance therapy, breathing exercises, mobilisation and strength training, flexibility training, balance training, neuromuscular electrical stimulation (NMES), activities of daily living, aerobic training, dysphagia management, nutrition therapy, cognitive training and psychological support. Medical management of comorbidities and patient-family education are key factors for achieving optimal gains from pulmonary rehabilitation.

Venöz Ayak Ülser Tedavisinde Güncel Yaklaşımlar

Venöz ayak ülseri alt ekstremite ülserlerin etiyolojisinde en yaygın görülen, açık bir lezyon şeklinde 4 hafta süresince iyileşmeyen ve diz ile ayak bileği arasında gelişen ülserdir. Tüm yaşlar için görülme oranı %1, 65 yaşı üstü kişilerde %3-5 arasındadır. Yaranın tedavisindeki amaç ödemi azaltmak, yara iyileşmesini sağlamak ve tekrarlamasını önlemektir. Yaranın tedavisinden önce; yaranın ilk oluştuğu zaman, yaranın çapı, yeri, sayısı, yatağındaki doku tipi, eksuda türü ve miktarı, yara kenarları ve çevresi cilt durumu, yaranın evresi, ayak bileği kol basıncı indeksi ve ayak lenfödem durumunun değerlendirilmesi gerekir. Venöz ülser tedavisinde ayak elevasyonu, yüksek basınçlı kompresyonlar, pansuman, pentoksifilin, mikronize arıtılmış flavanoid fraksiyonu, topikal işlenmemiş petrol yağı, kalsiyum dobesilat ve aspirin kullanımı önerilmektedir. Sitokin büyüme faktörlerin kullanımı, sklerotherapi ile birlikte kompresyona yönelik çalışmalar mevcuttur. Vakum yardımlı kapama ile hiperbarik oksijen tedavi kombinasyonu için kanıtlar yetersizdir. Yara debridmanı için cerrahi ve mekanik yöntemler önerilmektedir. Altı aydan fazla diğer tedavilere dirençli ve yara çapı &amp;gt; 10 cm² olan ülserlerde pinch ya da mesh greftler kullanılabilir. Tedavi sürecinde aktif planter fleksiyona direnç ve topuk kaldırma egzersizleri, protein ve sıvı ihtiyacının izlenimi, elektrolit ve albümin değerlerinin takibi, düzenli ayak bakımı için hasta-aile eğitimi ve psikososyal destek önem taşımaktadır.

“You Can Breast Health Club” Empowering Healthy Women of Myanmar to Enhance Breast Cancer Awareness and Take Action

Background and context: Pun Hlaing Siloam Hospital (PHSH), the only Joint Commission International (JCI) accredited hospital in Myanmar, is committed to provide comprehensive breast health services through “You Can Breast Health Club” in accordance with its vision; international quality, reach, scale and compassion. A free of charge membership-based club led by a dedicated medical oncology team that includes health care personnel, family members of breast cancer patients and healthy women of all walks of life. Aim: To promote awareness and take action on breast health and breast cancer so as to empower women to commit to lifelong breast health. Strategy/Tactics: The club executed its strategy through three pillars: 1) hospital-based comprehensive breast cancer care services, 2) community-based breast cancer education programs and 3) partnership with local and international organizations. The theme is “You can prevent the preventable; you can check for early detection; you can survive with effective treatment” with an aim to encourage women to play an active role in their own health. Program/Policy process: As part of a comprehensive approach to breast health, “one stop” hospital-based program provides breast health education on basic breast health and breast cancer facts, teaching breast self-exam, personal risk assessment and advise on risk reduction and to make healthy life choices. Interdisciplinary breast clinic provides clinical breast exam, state-of-the art breast imaging, diagnostic evaluation, referral for surgical and treatment options and patient family education. A training-of-trainers workshop on breast health was conducted for the hospital staff to facilitate program participants in turn to educate other club members and women in the local community. The club was launched in October Breast Cancer Awareness Month campaign held in October 2017 at PHSH. As a strategic partnership supported Shwe Yaung Hnin Si Cancer Foundation to host the World Cancer Day 2018 Community Cancer Awareness campaign held in Yangon. Outcomes: The number of club members increased to (282) within five months. Among the members, (204) women are from the community including family members of breast cancer patients, office staff, industry workers, and housewives reflecting the various socioeconomic status. The outcome was encouraging given that 60% of members are below the age of 40. What was learned: Community outreach breast cancer education programs combined with access to hospital-based services at affordable prices enhanced interest in club membership. The hospital-based strategy readily provides healthy women the facilities for early diagnosis and prompt access to quality care without any delays. Partnership with other advocacy groups accelerated the club process.

Family Caregiver Strain and Likelihood of Heart Failure Patient Clinical Events: A Replication Study

Introduction Higher caregiver strain was identified as a predictor of lower patient clinical event-risk in a previous analysis of Italian heart failure (HF) patient-caregiver dyads. The purpose of this analysis was to determine whether this trade-off in patient and caregiver outcomes was culturally bound, or replicable in a North American sample. Hypothesis We hypothesized that, similar to the Italian study, higher strain in North American caregivers would predict lower patient event-risk. Methods This was a secondary analysis of data from a 3-arm (usual care, patient-family education, and family partnership intervention) randomized controlled trial to improve HF self-care. Data collection occurred pre-intervention and 4 and 8 months post-intervention. Caregiver strain was measured pre-intervention using the 15-item Bakas Caregiving Outcomes Survey (BCOS: range 15-105, higher scores indicate more positive outcomes related to caregiving), and tertiles were used to divide caregivers into low, moderate, or high strain for analysis. Generalized linear regression was used to examine caregiver strain as a predictor of the likelihood of having any event (HF hospitalization, HF emergency room visit, or all-cause mortality) over time, controlling for intervention group and recent HF hospitalization (previous 4 months). Results All patients (n=92) were NYHA Class II or III, with the majority being Class II (n=68, 73.9%). Patients and caregivers were in their mid-fifties on average (56.3±10.1 and 53.4±12.4 years, respectively) and racially diverse (n=58, 63.0% and n=59, 64.8% African American, respectively), with most patients being male (n=57, 62.0%) and most caregivers being female (n=75, 84.2%). The most common dyad type was spousal (n=40, 44.0%). Over the 8 months, 28 patients were hospitalized, 6 had an emergency room visit and 6 died. The average BCOS scores for the low, moderate, and high strain groups were 82.9±12.5 (range 66-105), 61.1±1.6 (range 60-65), and 52.1±7.4 (range 31-59), respectively. There was no difference in events by intervention group. High caregiver strain (as compared to low strain) was associated with 91.9% lower likelihood of the patient having an event over 8 months follow-up (OR=0.081, 95%CI=0.008-0.850, p=0.036). There was no significant difference in event-risk by moderate caregiver strain. Conclusions Similar to previous findings in an Italian cohort, higher caregiver strain predicted lower HF patient clinical event-risk in this North American sample. Patient event-risk reductions may come with a cost for the family caregiver - a cost that has known sequelae (morbidity, mortality) and must be assessed and addressed.

Identifying the Needs and Barriers to Patient-Family Education to Design Educational Interventions that will Improve Neurosurgery Patient Outcomes in Mulago Hospital, Uganda

Identifying the Needs and Barriers to Patient-Family Education to Design Educational Interventions that will Improve Neurosurgery Patient Outcomes in Mulago Hospital, Uganda

A Continuous Quality Improvement Project to Implement Infant-Driven Feeding as a Standard of Practice in the Newborn/Infant Intensive Care Unit

To increase the number of neonates who were fed according to cues prior to discharge and potentially decrease length of stay. Continuous quality improvement. Eighty-five bed level IV neonatal intensive care unit. Surgical and nonsurgical neonates of all gestational ages. Neonates younger than 32 weeks gestation, who required intubation, continuous positive airway pressure (CPAP), high flow nasal cannula (HFNC), or did not have suck or gag reflexes were excluded as potential candidates for infant-driven feeding. The project was conducted over a 13-month period using the following methods: (a) baseline data collection, (b) designation of Infant Driven Feeding (IDF) Champions, (c) creation of a multidisciplinary team, (d) creation of electronic health record documentation, (e) initial staff education, (f) monthly team meetings, (g) reeducation throughout the duration of the project, and (h) patient-family education. Baseline data were collected on 20 neonates with a mean gestational age of 36 0/7(th) weeks and a mean total length of stay (LOS) of 43 days. Postimplementation data were collected on 150 neonates with a mean gestational age of 36 1/7(th) weeks and a mean total LOS of 36.4 days. A potential decrease in the mean total LOS of stay by 6.63 days was achieved during this continuous quality improvement (CQI) project. Neonates who are fed according to cues can become successful oral feeders and can be safely discharged home regardless of gestational age or diagnosis.

Implementing evidence-based patient and family education on oral anticoagulation therapy: a community-based participatory project.

This study aimed at developing and implementing evidence-based patient and family education on oral anticoagulation therapy. The number of persons with chronic diseases who live at home is increasing. They have to manage multiple diseases and complex treatments. One such treatment is oral anticoagulation therapy, a high risk variable dose medication. Adherence to oral anticoagulation therapy is jeopardised by limited information about the medications, their risk and complications, the impact of individual daily routine and the limited inclusion of family members in education. Hence, improved and tailored education is essential for patients and families to manage oral anticoagulation therapy at home. A community-based participatory research design combined with the Precede-Proceed model was used including a systematic literature review, posteducation analysis, an online nurse survey, a documentation analysis and patient/family interviews. The study was conducted between April 2010-December 2012 at a department of general internal medicine in a teaching hospital in Switzerland. Participants were the department's nursing and medical professionals including the patients and their families. The evidence-based patient and family education on oral anticoagulation therapy emerged comprising a learning assessment, teaching units, clarification of responsibilities of nurse professionals and documentation guidelines. The inclusion of the whole department has contributed to the development and implementation of this evidence-based patient family education on oral anticoagulation therapy, which encompasses local characteristics and patient preferences. This education is now being used throughout the department.

Family partner intervention influences self-care confidence and treatment self-regulation in patients with heart failure.

Heart failure self-care requires confidence in one's ability and motivation to perform a recommended behavior. Most self-care occurs within a family context, yet little is known about the influence of family on heart failure self-care or motivating factors. To examine the association of family functioning and the self-care antecedents of confidence and motivation among heart failure participants and determine if a family partnership intervention would promote higher levels of perceived confidence and treatment self-regulation (motivation) at four and eight months compared to patient-family education or usual care groups. Heart failure patients (N=117) and a family member were randomized to a family partnership intervention, patient-family education or usual care groups. Measures of patient's perceived family functioning, confidence, motivation for medications and following a low-sodium diet were analyzed. Data were collected at baseline, four and eight months. Family functioning was related to self-care confidence for diet (p=0.02) and autonomous motivation for adhering to their medications (p=0.05) and diet (p=0.2). The family partnership intervention group significantly improved confidence (p=0.05) and motivation (medications (p=0.004; diet p=0.012) at four months, whereas patient-family education group and usual care did not change. Perceived confidence and motivation for self-care was enhanced by family partnership intervention, regardless of family functioning. Poor family functioning at baseline contributed to lower confidence. Family functioning should be assessed to guide tailored family-patient interventions for better outcomes.

447 Asthma Knowledge among Parents and/or Caregivers of Asthmatic Children Attending a Practical Allergy Course

BackgroundAsthma is one of the most frequent chronic diseases, with worldwide prevalence of 1 to 18%. Patient and the patient's family education is considered by all International Guides fundamental to achieve this disease control. The aim of this study is to asses the asthma knowledge among parents and/or caregivers of pediatric asthmatic patients before and after attending to a Practical Allergy Course given at Hospital Infantil de Mexico Federico Gomez by the Pediatric Allergy Department.MethodsTransversal Study that included 115 persons attending to a Practical Allergy Course that answered the previously validated instrument to asses the asthma knowledge among parents or caregivers NAKQ (Newcastle Asthma Knowledge Questionnaire); its Spanish version consisting in 31 questions; before and after the practical course. A descriptive annalysis was made; usefullness of the course was determinated by x2. Stadistical packagge used was SPSS 17.ResultsA total of 115 questionnaires were applied, only 99 were properly answered and were included in the analysis; from these 35 were male and 64 female; 80% with high-school and middle school schooling; 92% were small families with 1 to 3 children; 90% of the families had only one child with asthma; 63% was receiving the practical course for the first time. Before attending the practical course the mean answered questions was 30 and after attending the mean answered questions was 31 (LR = 57.465; P < 0.000); for the first evaluation the mean correct answers was 19 and the latter 22 correct answers, finding statistical significant differences (LR = 30.253; P < 0.000).ConclusionsWe found improved asthma knowledge among parents and caregivers of asthmatic children after attending to a Practical Allergy Course.

Care of the Patient With Enteral Tube Feeding

Care of patients with enteral feeding tubes often is based on tradition and textbook guidance rather than best evidence. Care practices can vary widely both between and within institutions, and this was the case at a northeastern military medical center that served as the site for this evidence-based protocol development and implementation project. The purpose of this study was to describe the development and implementation of an evidence-based clinical protocol for care of patients with enteral feeding tubes. This was an evidence-based implementation project with pretest-posttest measures. Protocol data collection occurred both before and after implementation of the protocol. Data collection tools were based on the literature review and included three domains: (a) documentation of patient procedures, (b) nursing knowledge of each of the specific procedures, and (c) environment of care. Descriptive statistics and data were analyzed using independent samples t tests. Overall staff knowledge of enteral feedings and methods used to unclog both large- and small-bore feeding tubes differed significantly before and after implementation (p < .05). Staff knowledge regarding the danger of using blue dye in feeding solution was significant (p < .001). There was improvement also in administration of medications separately rather than mixed together and in head of bed elevation of patients with feeding tubes. There was a 10% improvement in documentation of patient family education and a 15% improvement in recording fluid flushes during medication administration. After implementation, environment of care data collection showed 100% of patients with head of bed elevated and with functioning suction available, an improvement over levels before implementation. Care must be taken in the interpretation of these findings because it was generally not the same nurses who answered both surveys. High staff turnover within this military hospital also affected sustainment of the protocol implementation. Maintenance activities must be constant and visible within the organization. A champion for evidence-based practice greatly enhances uptake and maintenance of nursing practice change.

Traitement de l' asthme de l' enfant : du consensus à la pratique

Aims for the management of asthma in children are to optimize quality of life and to maintain normal lung functions. International guidelines recommend rapid-acting inhaled β 2-agonist as needed in children with intermittent asthma. Once asthma is persistent, mild, moderate or severe, daily long-term therapy with inhaled corticosteroids should be started. Association with long-acting inhaled β 2-agonist or leukotrien inhibitors are required in children not enough controlled with inhaled corticosteroids alone. Management of the asthmatic child should not be restricted to antiasthmatic drug prescription but should include patient and patient's family education as well as adequate health of life.

The renewed emphasis on patient-family education-resources.

(1995). The renewed emphasis on patient-family education—resources. Topics in Stroke Rehabilitation: Vol. 1, Physical Therapy Management of a Stroke Patients, pp. 85-89.

Patient/psychosicial issues: Patient family education

Patient/psychosicial issues: Patient family education

Patient-Family Education: Enhancing Nursing Involvement

Patient-Family Education: Enhancing Nursing Involvement

Nursing Considerations in Caring for the Child With Vincristine-Induced Neurotoxicities

Vincristine is a highly effective cell-cycle specific chemotherapeutic agent used in the treatment of most pediatric malignancies. The major dose-limiting side effect of this drug is neurotoxicity, which can present in the form of peripheral, autonomic, or cranial nerve deficits. Conditions such as liver dysfunction can increase the risk for vincristine neurotoxicity. The only treatment for severe toxicity is to decrease the drug dose or to discontinue the drug. Many of the symptoms of neurotoxicity are subjective and therefore adequate assessment is often difficult. Baseline data is obtained before starting vincristine and with each subsequent clinic visit so that the appropriate drug dose can be determined to maximize tumor response with the fewest side effects. Nursing interventions are directed at symptom management. Patient-family education centers on relating informing of the potential and symptoms of neurotoxicity, with an emphasis on safety precautions.