scholarly journals Sexual Wellness and Rare Disease Considerations: A Behavioral Case Conceptualization and Approach to Counseling Treatment

2019 ◽  
pp. 96-104
Author(s):  
Jessica Z. Taylor ◽  
Chrystal L. Lewis ◽  
Leslie E. Davis
Keyword(s):  
Rare Disease ◽  
Hereditary Angioedema ◽  
Interdisciplinary Collaboration ◽  
Healthcare Providers ◽  
Sexual Relationship ◽  
Case Conceptualization ◽  
Medical Conditions ◽  
Case Scenario ◽  
Counselor Competency

Sexual wellness is infrequently addressed with individuals with a rare disease. Counselors must be competent in working with sexual wellness issues, especially those related to medical conditions, since clients may not share those concerns with healthcare providers. This article presents a case scenario involving a client living with a rare disease called Hereditary Angioedema, the symptoms of which present challenges to her intimate and sexual relationship with her partner due to unpredictable and painful swelling. A behavioral theoretical lens is used to conceptualize the case scenario and inform treatment. Implications for counselor competency, interdisciplinary collaboration, and client empowerment toward advocacy are discussed.

scholarly journals Preventable adverse drug events causing hospitalisation: identifying root causes and developing a surveillance and learning system at an urban community hospital, a cross-sectional observational study

2021 ◽  
Vol 10 (1) ◽  
pp. e001161
Author(s):  
Jane de Lemos ◽  
Peter Loewen ◽  
Cheryl Nagle ◽  
Robert McKenzie ◽  
Yong Dong You ◽  
...  
Keyword(s):  
Observational Study ◽  
Adverse Drug Events ◽  
Healthcare Providers ◽  
Medication Use ◽  
Learning System ◽  
Chronic Obstructive ◽  
Action Plans ◽  
Medical Conditions ◽  
Cross Sectional ◽  
Medication Changes

ObjectivesTo identify root causes of preventable adverse drug events (pADEs) contributing to hospital admission; to develop key messages which identify actions patients/families and healthcare providers can take to prevent common pADEs found; to develop a surveillance learning system for the community.MethodsCross-sectional observational study; 120 patients and families, 61 associated healthcare providers were interviewed then root cause analysis was performed to develop key learning messages and an electronic reporting tool was designed. Most common pADE-related medical conditions and their root causes and most common pADE root causes of entire cohort are reported.ResultsMost common pADE-related medical conditions: chronic obstructive pulmonary disease/asthma (13.3%), bleeding (12.5%), hypotension (12%), heart failure (10%), acute kidney injury (5%) and pneumonia (5%). Most common root causes were: providers not confirming that the patient/family understands information given (29.2%), can identify how a medication helps them/have their concerns addressed (16.7%), can identify if a medication is working (14.1%) or causing a side effect (23.3%); can enact medication changes (7.5%); absence of a sick day management plan (12.5%), and other action plans to help patients respond to changes in their clinical status (10.8%); providers not assessing medication use and monitoring competency (19.2%). Ten key learning messages were developed and a pADE surveillance learning system was implemented.ConclusionsTo prevent pADEs, providers need to confirm that patients/families understand information given, how a medication helps them, how to recognise and respond to side effects, how to enact medication changes and follow action plans; providers should assess patient’s/families’ medication use and monitoring competency.

Lactation Consultants’ Perceived Barriers to Providing Professional Breastfeeding Support

2017 ◽  
Vol 34 (1) ◽  
pp. 51-67 ◽  
Author(s):  
Erica H. Anstey ◽  
Martha Coulter ◽  
Cecilia M. Jevitt ◽  
Kay M. Perrin ◽  
Sharon Dabrow ◽  
...  
Keyword(s):  
Interdisciplinary Collaboration ◽  
Methodological Approach ◽  
Healthcare Providers ◽  
The United States ◽  
Perceived Barriers ◽  
Breastfeeding Initiation ◽  
Breastfeeding Support ◽  
Lactation Consultants ◽  
Suboptimal Breastfeeding ◽  
Breastfeeding Problems

Background: Addressing suboptimal breastfeeding initiation and duration rates is a priority in the United States. To address challenges to improving these rates, the voices of the providers who work with breastfeeding mothers should be heard. Research aim: The purpose of this study was to explore lactation consultants’ perceived barriers to managing early breastfeeding problems. Methods: This qualitative study was conducted with a grounded theory methodological approach. In-depth interviews were conducted with 30 International Board Certified Lactation Consultants across Florida. Lactation consultants were from a range of practice settings, including hospitals, Special Supplemental Nutrition Program for Women, Infants, and Children clinics, private practice, and pediatric offices. Data were digitally recorded, transcribed, and analyzed in Atlas.ti. Results: A range of barriers was identified and grouped into the following categories/themes: indirect barriers (social norms, knowledge, attitudes); direct occupational barriers (institutional constraints, lack of coordination, poor service delivery); and direct individual barriers (social support, mother’s self-efficacy). A model was developed illustrating the factors that influence the role enactment of lactation consultants in managing breastfeeding problems. Conclusion: Inadequate support for addressing early breastfeeding challenges is compounded by a lack of collaboration among various healthcare providers and the family. Findings provide insight into the professional management issues of early breastfeeding problems faced by lactation consultants. Team-based, interprofessional approaches to breastfeeding support for mothers and their families are needed; improving interdisciplinary collaboration could lead to better integration of lactation consultants who are educated and experienced in providing lactation support and management of breastfeeding problems.

scholarly journals Recurrent swelling and pain in the abdomen and joints in a patient with hereditary angioedema and Ehlers-Danlos syndrome

2019 ◽  
Vol 12 (11) ◽  
pp. e231484
Author(s):  
My-Trang Thi Dang ◽  
Andrew Ambort ◽  
Annie Arrey-Mensah
Keyword(s):  
Quality Of Life ◽  
Hereditary Angioedema ◽  
Healthcare Providers ◽  
Pain Syndrome ◽  
Well Being ◽  
Type I ◽  
Ehlers Danlos Syndrome ◽  
Complex Disorders ◽  
Danlos Syndrome

A 23-year-old woman was referred to the allergy and immunology clinic for recurrent abdominal, cutaneous and joint swelling and pain with a history of mucosal infections since childhood. Her history and clinical findings were suggestive of two rare and complex disorders, hereditary angioedema (HAE) and Ehlers-Danlos syndrome (EDS). Her recurrent episodes of abdominal and joint pain were initially misattributed to more common diagnoses such as esophagitis, depression and chronic pain syndrome. However, the coexistence of HAE and EDS likely contributed to a delay in diagnoses as the combination of these two rare but overlapping disorders is less understood by physicians. She had persistently low levels of C4 and C1-esterase inhibitor (C1-INH) with low to low-normal C1-esterase function, normal C1Q and no C1Q antibodies. In the setting of recurrent abdominal pain with cutaneous swelling, this supported the diagnosis of HAE type I. The increase in joint extensibility with recurrent shoulder subluxations since childhood was a manifestation of EDS. Although no known genetic mutations were identified for EDS, her diagnosis was confirmed by a geneticist based on her clinical phenotype. Before the diagnosis of HAE and EDS, our patient had at least 100 visits/year to the emergency department/hospitalisations for these recurrent symptoms. After starting on C1-INH replacement therapy, the frequency has decreased 10-fold. She also noted a 70% improvement in her quality of life. Familiarity with these rare disorders will assist healthcare providers in recognising HAE and EDS and include them as part of their differential diagnoses. Early diagnosis is important for a patient’s well-being as both these chronic disorders have been associated with poor quality of life. Additionally, proper diagnoses will reduce healthcare costs by preventing unnecessary procedures due to misdiagnoses. Proper treatment will help to decrease hospitalisations and avoidance of life-threatening consequences (such as asphyxiation from fatal laryngeal attacks of HAE and rupture of aneurysms in EDS).

scholarly journals A Comprehensive Approach to Assessing the Value of Prophylactic Therapy for the Ultra Rare Disease Hereditary Angioedema Using Real World Patient Data

2019 ◽  
Vol 143 (2) ◽  
pp. AB426 ◽  
Author(s):  
Anthony J. Castaldo ◽  
Christian Jervelund ◽  
Andreas R. Kirk ◽  
Deborah Corcoran ◽  
Henrik Balle Boysen ◽  
...  
Keyword(s):  
Rare Disease ◽  
Real World ◽  
Hereditary Angioedema ◽  
Patient Data ◽  
Comprehensive Approach ◽  
Prophylactic Therapy

C1 Esterase Inhibitor (Human) for the Treatment of Acute Hereditary Angioedema

2011 ◽  
Vol 4 ◽  
pp. CMBD.S4090 ◽  
Author(s):  
Solange Oliveira Rodrigues Valle ◽  
Alfeu Tavares França ◽  
Regis A. Campos ◽  
Anete Sevciovic Grumach
Keyword(s):  
Quality Of Life ◽  
Rare Disease ◽  
Hereditary Angioedema ◽  
C1 Esterase Inhibitor ◽  
Genetic Deficiency ◽  
Life Threatening ◽  
Patients Experience ◽  
Tremendous Impact ◽  
Esterase Inhibitor

Hereditary angioedema (HAE) is a relatively rare disease characterized by acute episodes of swelling. These swellings can be disfiguring, painful and life-threatening. Since the symptoms occur in different areas and most patients experience a delay in their diagnosis, resulting in unnecessary suffering and dangerous situations. HAE can have a tremendous impact on the quality of life. The major genetic deficiency in this disorder is either an absent or nonfunctional C1INH which regulates the complement, fibrinolitic, kalikrein and plasmin pathways.

Hereditary angioedema: implications of treating a rare disease

2012 ◽  
Vol 109 (2) ◽  
pp. 150-151 ◽  
Author(s):  
Ira N. Kalfus ◽  
Richard Glen Gower ◽  
Marc Riedl ◽  
Jonathan A. Bernstein ◽  
William R. Lumry ◽  
...  
Keyword(s):  
Rare Disease ◽  
Hereditary Angioedema

scholarly journals The importance of providing palliative care for patients with severe COVID-19 in Indonesia

2021 ◽  
Author(s):  
Christantie Effendy ◽  
Martina Sinta Kristanti
Keyword(s):  
Palliative Care ◽  
Health Care Providers ◽  
Health Workers ◽  
Psychosocial Support ◽  
Healthcare Providers ◽  
Care Providers ◽  
Case Scenario ◽  
Severe Condition ◽  
Dying With Dignity ◽  
The Common

Patients with Coronavirus Disease 2019 (COVID-19), particularly those with a severe condition, might not survive. Pandemic situation challenges the healthcare providers in addressing palliative care to the patients. This paper aimed to describe the importance of providing palliative care for patients with severe COVID-19 in Indonesia. We used a case scenario to illustrate the common condition experienced by a patient with severe COVID-19. Health care providers in Indonesia could address palliative care for patients with COVID-19 by focusing on controlling the symptoms, avoiding futile intervention, and connecting the patients and their families. Nurses need to consider the patients’ needs for family supports, even though not in physical or psychosocial support, and help the patients who need end-of-life care to be dying with dignity. Communication technology must be utilized optimally by healthcare providers to realize the communication among the patients, families, and health workers. 

scholarly journals Hereditary angioedema: experience of substitution therapy with a C1 esterase inhibitor in the Sverdlovsk region

2019 ◽  
Vol 16 (3) ◽  
pp. 61-66
Author(s):  
E K Beltyukov ◽  
S S Vedenskaya ◽  
I S Skorokhodov ◽  
V V Naumova ◽  
M V Beltyukova ◽  
...  
Keyword(s):  
Side Effects ◽  
Pregnant Women ◽  
Receptor Antagonist ◽  
Rare Disease ◽  
Hereditary Angioedema ◽  
Substitution Therapy ◽  
National Guidelines ◽  
Ministry Of Health ◽  
C1 Esterase Inhibitor ◽  
Esterase Inhibitor

Hereditary angioedema (HAO) is rare disease, however, it's lifethreatening localization can be fatal. Antifibrinolytics and attenuated androgens used for the prevention of HAO attacks have side effects, which limit their use. The bradykinin B2 receptor antagonist, Icatybant is an effective but shortacting dmedication. The human C1 esterase inhibitor (berinert) is safe and effective for the prevention and relief of angioedema of lifethreatening localization, including in pregnant women. The management of patients with HAO is regulated by national guidelines, and the use of a human C1 esterase inhibitor is recommended by instruction of the drug and by the Ministry of Health of the Sverdlovsk region. Patients with HAO should be provided with patient’s passport and fill a diary of symptoms monitoring of HAO.

Children and Adolescents With Medical Conditions

2018 ◽  
Author(s):  
Ashley N. Marchante-Hoffman ◽  
Annette M. La Greca
Keyword(s):  
Mental Health ◽  
Psychological Health ◽  
Family Conflict ◽  
Healthcare Providers ◽  
Psychosocial Issues ◽  
Medical Conditions ◽  
Cell Disease ◽  
Physical And Mental Health ◽  
Future Work

Physical health concerns are common among youth and are linked to mental health. Attention to the interplay between physical and mental health is critical for healthcare providers. This chapter highlights crosscutting issues, assessments, and interventions relevant to child health populations. To understand the interaction between medical and psychological health in youth, chronic pediatric conditions (Type 1 diabetes and sickle cell disease) are described as prototypes for understanding psychosocial issues (e.g., adherence, pain management) that affect youth with medical conditions. Evidence suggests that these children with medical conditions, especially those poorly managed or controlled, are at greater risk for psychosocial issues (e.g., stress, comorbid psychological concerns, family conflict) compared to the general population. Careful risk assessment and individual or family interventions are critical for these youth and are a focus here. Well-established interventions for diverse youth with medical conditions are discussed, and recommendations for future work in this area are provided.

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