Perspectives of patients with cystic fibrosis on preventive counseling and transition to adult care
Female; Humans; Male; Adult; Health Care Surveys; Prospective Studies; Massachusetts; Boston; Needs Assessment; Practice; adolescent; Attitudes; Adolescent Transitions; Health Knowledge; Aging/psychology; Continuity of Patient Care/organization & administration; Counseling/organization & administration; Cystic Fibrosis/psychology/therapy; Day Care/organization & administration; Preventive Medicine/organization & administration; Pulmonary Disease (Specialty)/statistics & numerical data
The purpose of this study was to investigate how adolescents and adults with cystic fibrosis (CF) view preventive counseling and their transition to adult-centered care within a children's hospital. Thirty-two patients >/=16 years old diagnosed with CF were recruited from a pediatric tertiary care setting. During face-to-face interviews, patients were asked 27 structured questions and completed a 30-item self-administered questionnaire on preventive counseling by healthcare providers and on transition issues. The median age of patients was 25.5 years (range, 16-43 years); 69% of patients identified a pulmonologist as their "main doctor," even though 78% had a primary care provider. Participants felt that 13-16 years of age was the best time for them to begin spending time alone with their main doctor. Less than half of the participants recalled receiving preventive counseling during the previous 12 months, and more patients wanted to discuss issues than actually did. Qualitative data emphasized the importance of independence in making decisions in healthcare and establishing relationships with providers, and many patients did not desire to transfer care to an adult hospital. Participants identified adult-focused services such as inpatient rooms, discussion groups, work options, and social service support that would enhance care. In conclusion, the majority of adolescent/young adult patients with CF receiving care in a pediatric institution reported satisfaction with their healthcare. However, patients identified preventive issues that they desired to be more regularly addressed, starting in early adolescence, and changes in the delivery of services to enhance transition to adult-oriented care. This study underscored the understanding of the integration of transition planning into the facilitation of healthcare decision-making by the adolescent in issues of self-care, sexuality, education, and finances. Future initiatives to enhance the care of patients with CF should provide training of pulmonologists in preventive care and increased attention to helping patients utilize appropriate primary-care services during the adult years. In addition, prospective studies are needed to compare outcomes of CF patients who have transitioned and transferred to adult hospitals and those transitioning to adult-oriented services in a pediatric institution.
2003
Zack J; Jacobs CP; Keenan PM; Harney K; Woods ER; Colin AA; Emans SJ
Pediatric Pulmonology
2003
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1002/ppul.10342" target="_blank" rel="noreferrer">10.1002/ppul.10342</a>
Grief experiences of nurses in Ireland who have cared for children with an intellectual disability who have died
Background The personal grief experience of nurses who have cared for children with an intellectual disability who have died is little understood. Method This descriptive qualitative study was initiated to ascertain nurses' knowledge and personal experience of grief and how this is managed. Semi-structured interview was the method used to collect data from eight nurses who had cared for a child with an intellectual disability who had died. A pragmatic approach to qualitative data analysis was adopted. Results Of the eight main themes identified, the four most prevalent are discussed in detail: grief, relationship with the child, end of life, and support. The findings demonstrate that nurses have a good understanding of grief, but the way they experience and manage it varies. Conclusion The study suggests that nurses who have cared for children with an intellectual disability who have died may experience disenfranchised grief. Nurses seek support from a variety of sources. Organisational support is important for nurses following the death of a child for whom they have provided care.
2014-12
MacDermott C; Keenan PM
International Journal Of Palliative Nursing
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.12968/ijpn.2014.20.12.584" target="_blank" rel="noreferrer">10.12968/ijpn.2014.20.12.584</a>