Cystic fibrosis

Background: Chronically ill children and their parents are at risk for sleep disorders and associated morbidity. Sleep disturbance prevalence and the relationships between parent and child sleep among children with CF are not well defined. Clarifying the presence and impact of sleep disturbances among pediatric CF patients and their parents could lead to improved health in this population. Methods: Cross-sectional study assessing parent-reported sleep in ninety-one CF patients (mean age 8.8 years; 53.8% female) and their primary caregivers.

Some time and temporarily scholars suggest that separation is one of the most arduous of human experiences. Given what is often a long history of unpleasant relationship endings, the clients of therapy themselves may be particularly susceptible to painful ruptures. Informed by a qualitative approach, I describe and explain how 10 Canadian children living with cystic fibrosis and their caregivers felt at the end of a research-based counselling support programme. At the programmes' end, the participants reluctantly but unquestioningly accepted the decision.

Objective: Tobacco smoke exposure has negative impacts on the lung health of children with cystic fibrosis (CF), yet evidence-based strategies for smoking cessation have not been tested with or tailored to CF caregivers. This qualitative study identified barriers and facilitators of smoking cessation in this population and outlined potential interventional approaches.

Most studies on the quality of life of caregivers of children with cystic fibrosis (CF) have focused on the mental health of mothers, reflecting a biased underlying assumption that mothers are the primary caregivers. The aim of this study was to explore the experience of fathers caring for a child with CF. Twenty fathers of children with CF were studied via a semi-structured interview using Husserl's (1970) descriptive phenomenology. Fathers were enrolled from two accredited CF centers in Texas.

Cystic fibrosis (CF) is a life-shortening genetic disease with many treatment requirements that necessitate the participation of a caregiver, especially if the patient is a child. We performed an integrated literature review of original research evaluating quality of life in caregivers of patients with CF. We searched the terms quality of life, cystic fibrosis, and caregivers in the MEDLINE, CINAHL, Child Development and Adolescent Studies, PsycARTICLES, and Psychology and Behavioral Sciences Collection databases from 2007 to 2017.

Aims: The aims were to: (i) examine perceptions of family‐centred care of parents of children with cystic fibrosis and healthcare professionals who care for them; (ii) test design and tools in a regional population.

Design: Quantitative pilot study of existing questionnaire.

Objective: To know the experiences of family members of children with cystic fibrosis under the light of the theory of Callista Roy.

Method: Qualitative research that used the adaptation theoretical framework of Callista Roy for inductive content analysis. Fifteen family members, in a university hospital, between 23 and 63 years old, participated in the study, from September to October 2018.

Objective: To study the prevalence of depression among caregivers of children with cystic fibrosis and its impact on the health and well being of these children. Methods: This cross-sectional study was conducted in a tertiary care hospital from September 2015 through August 2016. Forty one parents of children receiving treatment at the Cystic fibrosis (CF) clinic were approached to be part of the study. Six families declined the request resulting in 85% recruitment rate.

Background: The role of cystic fibrosis (CF) care team members in delivering palliative care (PC) remains undefined. We aimed to understand the PC skills of CF care teams.

Methods: CF care team members ("clinicians"), adults with CF ("patients"), and family caregivers ("caregivers") rated the ability of CF clinicians to provide aspects of PC using a five-point scale ("poor" to "excellent"). Median ratings were compared between groups.