Portuguese adolescents with cystic fibrosis and their parents: An intervention proposal for nursing clinical practice.

PURPOSE: Cystic fibrosis is a life-shortening genetic disease. It affects both patient and family with the nurse playing a key role in the monitoring process. This study sought to contribute to enhanced targeted health care to adolescents with cystic fibrosis and their parents by understanding the experiences of living with cystic fibrosis. Based on Afaf Meleis' Transitions Theory (1986) nurses identify the transition experienced by the study participants, thus contributing to the quality of nursing interventions. DESIGN AND METHODS: Two qualitative research studies using data collected through semi-structured interviews were conducted. The Straussian Grounded Theory was applied. The snowball technique was used for recruitment, under the inclusion criteria: adolescents aged between 10 and 21 years; diagnosis of cystic fibrosis for more than one year; and parents of these adolescents. A final sample of 16 adolescents and 14 parents was obtained. RESULTS: Nursing therapeutic interventions acted as a facilitator of the health/illness transition process. Nurses' intervention areas were identified to empower adolescents and their parents with targeted knowledge and abilities to cope with problems. After diagnosis, parents assumed a new role-playing. CONCLUSIONS: Adolescents with cystic fibrosis and their parents experience various transition phases. Nurses can better help identifying the onset, persistence and ending of harmful periods. PRACTICE IMPLICATIONS: Adolescents with cystic fibrosis and their parents experience various transition phases. Nursing therapeutic interventions are cardinal to the health/illness transition.

Caring for Adolescents with Cystic Fibrosis, in Portugal: The Nurse's Role.

This study aimed to describe the nurse's role in the transition processes of adolescents with cystic fibrosis and their parents. Cystic fibrosis is a multisystem, life-shortening genetic disease, caused by malfunction of the protein-encoding gene Cystic fibrosis transmembrane conductance regulator, characterized by a disturbance of external secretion glands. Moreover, the potential presence of respiratory, gastrointestinal, pancreatic, and reproductive-related symptomatology in these patients can add a substantial burden to the disease. In Portugal, the prevalence rate is 1:7,963 of newborns and the life expectancy is around 40 years. Because of the disease multiple-related symptoms, sometimes disabling, health teams include different professionals, with nurses being the main responsible for caring for adolescents with Cystic Fibrosis and providing guidance to their parents. A qualitative paradigm of phenomenological type was designed. A total of 20 semi-structured interviews were conducted with participants selected through the snowball technique. Content analysis was performed as proposed by Bardin. The average age of participants ranged between 28 and 53 years, and the average time of professional exercise ranged between 5 and 27 years. From the analysis of the interviews, the category Nurse's Role emerged, followed by the subcategories, identify needs, caring, communicate, train, continuity of care, teamwork, care partnership, promoting standardization. Nurses identified the nature of the nursing role as a strong determinant to facilitate monitoring and intervention processes for adolescents with cystic fibrosis and their parents. Nursing therapeutics aim to promote, prevent, and effectively contribute to the development process and recovery of stability and well-being of adolescents with cystic fibrosis and their parents.

Nursing interventions in monitoring the adolescent with Cystic Fibrosis: a literature review.

Objectives: to search for nursing interventions focused on the improvement of quality of life and promotion of self-care of adolescents suffering from the Cystic Fibrosis. Method: literature review. The inclusion criteria were: primary studies and studies with interventions developed by nurses in the adolescent population with Cystic Fibrosis, using Portuguese, Spanish, French and English with no time limit, and supported by the databases Scopus, Web of Science and CINAHL. The search expressions were: nursing AND care AND adolescent AND "Cystic Fibrosis" AND ("quality of life" OR "self-care"). Results: a total of 59 articles was retrieved; 8 matched the criteria chosen. Nursing interventions targeted at adolescents with Cystic Fibrosis and their family members were identified. These interventions were organized according to the nurses' role, namely caregiver, coordinator, counsellor, researcher, trainer and care partner. Conclusions: nursing interventions targeted at following up the adolescent during the entire therapeutic process, involving the presence of parents/significant others, since both the adolescent and family have to be responsible for self-care. Healthcare professionals should be capable of identifying the specific needs of patients with chronic disease and their family, permitting a better understanding and adaptation to the health-disease transition process.

Nursing interventions in monitoring the adolescent with Cystic Fibrosis: a literature review / Intervenções de enfermagem no monitoramento de adolescentes com fibrose cística: uma revisão da literatura / Intervenciones de enfermería en el monitoreo de adolescentes con fibrosis cística: una revisión de la literatura

ABSTRACT Objectives: to search for nursing interventions focused on the improvement of quality of life and promotion of self-care of adolescents suffering from the Cystic Fibrosis. Method: literature review. The inclusion criteria were: primary studies and studies with interventions developed by nurses in the adolescent population with Cystic Fibrosis, using Portuguese, Spanish, French and English with no time limit, and supported by the databases Scopus, Web of Science and CINAHL. The search expressions were: nursing AND care AND adolescent AND "Cystic Fibrosis" AND ("quality of life" OR "self-care"). Results: a total of 59 articles was retrieved; 8 matched the criteria chosen. Nursing interventions targeted at adolescents with Cystic Fibrosis and their family members were identified. These interventions were organized according to the nurses' role, namely caregiver, coordinator, counsellor, researcher, trainer and care partner. Conclusions: nursing interventions targeted at following up the adolescent during the entire therapeutic process, involving the presence of parents/significant others, since both the adolescent and family have to be responsible for self-care. Healthcare professionals should be capable of identifying the specific needs of patients with chronic disease and their family, permitting a better understanding and adaptation to the health-disease transition process.

RESUMO Objetivos: buscar intervenções de enfermagem que enfoquem a melhoria da qualidade de vida e a promoção do autocuidado em adolescentes que sofrem de fibrose cística. Método: revisão de literatura. Os critérios de inclusão foram: estudos primários e estudos com intervenções desenvolvidas por enfermeiros na população adolescente com fibrose cística, em português, espanhol, francês e inglês, sem delimitação temporal, nas bases de dados Scopus, Web of Science e CINAHL. Os termos utilizados na busca foram: enfermagem AND cuidado AND adolescente AND "Fibrose Cística" AND ("qualidade de vida" OR "autocuidado"). Resultados: ao total, 59 artigos foram identificados, dos quais 8 atenderam os critérios de busca. As intervenções de enfermagem para adolescentes com fibrose cística e seus familiares foram identificadas. Essas intervenções foram organizadas de acordo com o papel dos enfermeiros, isto é, cuidador, coordenador, conselheiro, pesquisador, treinador e parceiro assistencial. Conclusões: as intervenções de enfermagem visam monitorar o adolescente ao longo do processo terapêutico, envolvendo a presença de pais/outras pessoas significantes, uma vez que tanto o adolescente como a família devem assumir a responsabilidade pelo autocuidado. Os profissionais da saúde devem ser capazes de identificar as necessidades específicas dos pacientes com doenças crônicas e suas famílias, visando alcançar uma melhor compreensão e adaptação ao processo de transição entre a saúde e a doença.

RESUMEN Objetivos: buscar intervenciones de enfermería que se centren en la mejora de la calidad de vida y la promoción del autocuidado en adolescentes que sufren de Fibrosis cística. Método: revisión de la literatura. Los criterios de inclusión fueron: estudios primarios y estudios con intervenciones desarrolladas por enfermeros en la población adolescente con Fibrosis cística, en portugués, español, francés e inglés, sin delimitación temporal, en las bases de datos Scopus, Web of Science y CINAHL. Los términos utilizados en la búsqueda fueron: enfermería AND cuidado AND adolescente AND "Fibrosis Cística" AND ("calidad de vida" OR "autocuidado"). Resultados: al total, 59 artículos fueron identificados, de los cuales 8 cumplieron con los criterios de búsqueda. Las intervenciones de enfermería para adolescentes con Fibrosis Cística y sus familiares fueron identificadas. Esas intervenciones fueron organizadas según el papel de los enfermeros, esto es, cuidador, coordinador, consejero, investigador, entrenador y pareja asistencial. Conclusiones: las intervenciones de enfermería visan monitorear el adolescente a lo largo del proceso terapéutico, involucrando la presencia de padres/otras personas significantes, ya que tanto el adolescente como la familia deben asumir la responsabilidad por el autocuidado. Los profesionales de salud deben ser capaces de identificar las necesidades especiales de los pacientes con enfermedades crónicas y sus familias, visando alcanzar una mejor comprensión y adaptación al proceso de transición entre la salud y la enfermedad.