AdvoCaring: A Cocurricular Program to Provide Advocacy and Caring to Underserved Populations in Baltimore

Objective. To incorporate direct patient care and service components throughout a 4-year pharmacy program to enable students to apply knowledge learned in the classroom and develop the human and caring dimensions of Fink’s Taxonomy of Significant Learning.Design. Groups of 10-12 students and a faculty advisor partnered with a local agency serving an underserved population of the greater Baltimore area to provide seven hours of service per student each semester. Activities were determined based on students’ skills and agency needs.Assessment. Over 10 000 hours of care were provided from fall 2009 through spring 2014 for clients at 12 partner agencies. Student feedback was favorable.Conclusion. Cocurricular learning enables students to use their skills to benefit local communities. Through an ongoing partnership, students are able to build on experiences and sustain meaningful care initiatives.     

Distress Screening: An Opportunity for Enhancing Quality Cancer Care and Promoting the Oncology Social Work Profession

Throughout its history, social work has played a critical role in major client/patient care initiatives because of its unique perspective, wisdom, and skills. The new screening standards set forth by the American College of Surgeons’ Commission on Cancer place oncology social workers at the forefront of developing and implementing procedures for distress screening. Our profession is again challenged to work across disciplines and change systems of care to improve the health and welfare of patients with cancer and their families. Indeed, emerging research suggests that the use of psychosocial screening instruments results in reductions in emotional distress, better quality of life, and improved patient–provider communication. As an introduction to this special issue on distress screening, this article offers a brief overview of issues related to distress screening that are covered by papers authored in this special issue by Association of Oncology Social Work members. Topics addressed include a review of the historical context driving distress screening implementation, barriers and challenges to oncology social workers trying to implement distress screening, statistical and cultural considerations for selecting screening tools, best practice models, and future considerations. This special issue is intended to be a primer and serves to promote oncology social workers’ involvement and leadership in the development and implementation of distress screening.     

Developing multidisciplinary clinics for neuromuscular care and research

Multidisciplinary care is considered the standard of care for both adult and pediatric neuromuscular disorders and has been associated with improved quality of life, resource utilization, and health outcomes. Multidisciplinary care is delivered in multidisciplinary clinics that coordinate care across multiple specialties by reducing travel burden and streamlining care. In addition, the multidisciplinary care setting facilitates the integration of clinical research, patient advocacy, and care innovation (e.g., telehealth). Yet, multidisciplinary care requires substantial commitment of staff time and resources. We calculated personnel costs in our ALS clinic in 2015 and found an average cost per patient visit of $580, of which only 45% was covered by insurance reimbursement. In this review, we will describe classic and emerging concepts in multidisciplinary care models for adult and pediatric neuromuscular disease. We will then explore the financial impact of multidisciplinary care with emphasis on sustainability and metrics to demonstrate quality and value. Muscle Nerve 56 : 848–858, 2017     

The United Nations Convention on the Rights of Persons with Disabilities

The United Nations Convention on the Rights of Persons with Disabilities was created in 2009. It does not create new rights but does highlight the universal human rights and how these apply for people with disabilities. This article describes the convention in the context of a new understanding of functioning, disability and health and the United Nations Convention on the Rights of the Child. It highlights the importance of participation in life for children with disabilities and considers the role of Paediatricians in advocacy for these rights.     

“If I Knew Then What I Know Now”: Parents’ Reflections on Raising a Child with Cerebral Palsy

ABSTRACT

In this study we investigated experiences of parents of children with cerebral palsy (CP) to identify areas in which health care providers and educators could improve practice. A second objective was to create educational material for parents of young children newly diagnosed with CP. A purposive sample of nine parents, who previously participated in the Adolescent Study of Quality of Life, Mobility, and Exercise, was recruited through phone. During an interview, parents reflected on the experience of raising a child with CP from birth to young adulthood. These interviews were audiotaped, transcribed, and coded using the International Classification of Functioning, Disability and Health-informed model and analyzed to identify major themes. Parents elaborated upon what was helpful and what could be changed to improve their children's and families’ experiences through supports, advocacy, and education at different levels. The results informed the development of tips for parents and children with CP to enhance their families’ experiences and interactions with health care providers, educators, and others.     

The Farmworker Health and Safety Institute (FHSI)

ABSTRACT

In general, few people know about pesticide poisoning, understand the concept of restricted entry interval, or have received any training on how to protect themselves from pesticides. Symptoms related to pesticide poisoning are easily confused with those for other illnesses, often resulting in health care providers and farmworkers alike not always recognizing the negative health affects related to pesticide exposure. The Farmworker Health and Safety Institute has developed a training program that makes farmworkers aware of the hazards to which they are exposed to on a daily basis as well as give them skills to address these hazards. The sessions are conducted in English, Spanish, and Haitian Creole and training materials are prepared in each of the three languages. The program enables farmworkers to develop advocacy skills in order to directly address problems in the workplace and community by influencing federal and state agencies who are responsible for enforcing these regulations.     

Ethical advocacy based on caring: a model for neonatal and paediatric nurses

Advocacy has been identified as an ideal in nursing practice. National codes (Australian Nursing and Midwifery Council) and professional standards (Australian College of Neonatal Nurses) state that nurses are to respect their patients' autonomous choices and act as their advocates. This responsibility includes acting as advocates for the needs and welfare of patients, for the profession of nursing and for the interests of colleagues in nursing. However, ambiguous interpretations of the concept of patient advocacy continue to pose a number of problems for nurses in practice and in particular neonatal practice. Neonatal nurses often perceive themselves primarily as advocates for the rights of helpless and vulnerable infants in their care. Advocacy is underpinned by caring, which is a significant feature in the delivery of quality care for each baby and child. This advocacy may be expressed at the bedside, in committee meetings, in agency discussions or in the public arena.