RESUMO
The integration of stakeholder engagement (SE) in research, quality improvement (QI), and clinical care has gained significant traction. Type 1 diabetes is a chronic disease that requires complex daily management and care from a multidisciplinary team across the lifespan. Inclusion of key stakeholder voices, including patients, caregivers, health care providers and community advocates, in the research process and implementation of clinical care is critical to ensure representation of perspectives that match the values and goals of the patient population. This review describes the current framework for SE and its application to research, QI, and clinical care across the lifespan.
Assuntos
Diabetes Mellitus Tipo 1 , Humanos , Diabetes Mellitus Tipo 1/terapia , Participação dos Interessados , Melhoria de Qualidade , Pessoal de SaúdeRESUMO
Editor's Note: This article is adapted from a speech Dr. Muñoz delivered in June 2021 as President, Health Care & Education of the American Diabetes Association. She delivered her address at the Association's 81st Scientific Sessions, which was held online as a result of the coronavirus disease 2019 pandemic. A webcast of this speech is available for viewing at https://bit.ly/3rk3Esp.
Assuntos
Comportamento do Adolescente/fisiologia , COVID-19/epidemiologia , COVID-19/psicologia , Diabetes Mellitus Tipo 2/epidemiologia , Diabetes Mellitus Tipo 2/psicologia , Adolescente , Comportamento do Adolescente/psicologia , Idade de Início , Atitude do Pessoal de Saúde , COVID-19/complicações , Criança , Diabetes Mellitus Tipo 2/complicações , Endocrinologistas/estatística & dados numéricos , Feminino , Humanos , Masculino , Saúde Mental , Pandemias , Padrões de Prática Médica/estatística & dados numéricos , Angústia Psicológica , Psicologia/estatística & dados numéricos , Psicologia do Adolescente , Fatores de Risco , SARS-CoV-2/fisiologia , Perfil de Impacto da DoençaRESUMO
BACKGROUND: It is important for health care professionals to understand the pain experience in children with advanced cancer. There has been increased attention to this topic, but systematic studies are limited. OBJECTIVE: To examine pain symptoms and management in children with advanced cancer using child self-report and nurse documentation. METHODS: A prospective, longitudinal method was used to collect data from 62 children over a 5-month period. Children were English and Spanish speaking, ages 6 to 17 years, with advanced cancer. Nurses also provided data. RESULTS: Across all interviews, pain was reported 56% of the time by all children. Nurses documented pain only 23% of the time. Children most frequently reported head pain (31%), followed by abdomen, lower back, leg, and feet pain (20% to 30%). Children consistently reported more intense pain compared with nurses. Nonopioids were used more frequently (45%) than opioids (32%), and nurses' perception of pain intensity was more highly correlated with administration of opioids (r = .72, P < .001). Children who died during their participation in this study received more opioids over time. Pain intensity was relatively stable over time. Nurses noted ethnicity related differences with higher pain levels for Caucasian children, who received analgesics more frequently. DISCUSSION: The children consistently reported pain. Child self-report and nurse documentation of pain differed, as did pain management among children who died compared with those who did not. Ethnicity differences in the identification and management of pain by nurses begs further study. Overall, nurses were aware of and responsive to pain and pain management.
Assuntos
Neoplasias/complicações , Registros de Enfermagem , Medição da Dor , Dor/etiologia , Autorrelato , Adolescente , Analgésicos/uso terapêutico , Criança , Feminino , Humanos , Masculino , Neoplasias/patologia , Avaliação em Enfermagem , Pesquisa Metodológica em Enfermagem , Enfermagem Oncológica , Dor/tratamento farmacológico , Dor/enfermagem , Medição da Dor/enfermagem , Enfermagem Pediátrica , Estudos ProspectivosRESUMO
BACKGROUND: Systematic studies on the specific symptom experience in children with advanced cancer are limited. OBJECTIVE: The objective of the study was to examine the common symptoms and to explore commonly occurring symptoms over time. METHODS: A prospective and longitudinal study design was used. Data were collected at 10 data points from 60 children over a 5-month period. Children ranged from 6 to 17 years old, spoke English or Spanish, were diagnosed with advanced cancer, and were receiving healthcare in 1 of 4 Southern California hospitals. Nurses' documentations of symptoms were examined. RESULTS: The study sample was composed of children 6 to 12 years old (52%) and 13 to 17 years old (48%); 42% were female, and 58% were male. Fifty-five percent were Latino, and 30% were Caucasian. Pain, nausea, drowsiness, and energy loss were reported by children in more than 50% of the interviews. Children's and nurses' reports of symptoms were similar except children reported significantly more frequency and intensity of pain. CONCLUSION: Children with advanced cancer were able to report and describe their symptoms. There were few differences by gender, age, and ethnicity. IMPLICATIONS FOR PRACTICE: It is important that children's symptoms are clearly communicated to nurses, and these study findings may be used to anticipate and manage the symptoms experienced by children with advanced cancer.