A pilot study of disease related education and psychotherapeutic support for unresolved grief in parents of children with CF.

Diagnosis of chronic disease in a child can result in unresolved grief (UG) in parents. This study aimed to evaluate the efficacy of psychological insight-oriented therapy (IOT) as a treatment for UG compared to disease related education in parents of children with cystic fibrosis (CF). Sequence of delivery, first IOT then disease related education (or vice versa) was also examined, to let all participants experience both interventions. Parents were screened for UG. Parents with UG were randomised to either five 1-h sessions of IOT or five 1-h sessions of education. Measures were assessed pre-intervention, after the first intervention period (primary efficacy assessment), and after the second intervention period (swapping intervention). Forty-seven parents were screened of which 46.8% (22/47) had UG. Median duration of UG was 5 years (range: 6 months-14 years). Anxiety (50% vs. 20%, p = 0.03) and stress (59% vs. 28%, p = 0.03) were significantly more prevalent in parents with UG. There was no difference between arms in the odds of UG resolving either following the first intervention period (OR 0.88; 95% CI 0.5, 1.5) or the second intervention period (OR 0.91; 95% CI 0.5, 1.6). While not statistically significant, adjusted mean values for seven of the eight mental health measures were lower in the IOT (first) arm compared to the ED (first) arm, following the first intervention period. UG is a significant burden for families affected by CF. Provision of disease related education and psychological support, regardless of sequence, can result in resolution of grief.Trial registration number: ACTRN12621000796886, date of registration 24/06/2021, retrospectively registered.

Early disease surveillance in young children with cystic fibrosis: A qualitative analysis of parent experiences.

BACKGROUND: Sensitive measures of early lung disease are being integrated into therapeutic trials and clinical practice in cystic fibrosis (CF). The impact of early disease surveillance (EDS) using these novel and often intensive techniques on young children and their families is not well researched. METHODS: The Australian Respiratory Early Surveillance Team for Cystic Fibrosis (AREST CF) has operated a combined clinical and research early disease surveillance program, based around annual chest CT scan, bronchoscopy and lung function from newborn screening diagnosis until age 6 years, for over two-decades. To explore parental experiences of EDS in their child, a qualitative study was conducted using audio-recorded, semi-structured interviews in n=46 mothers and n=21 fathers of children (aged 3-months to six years) attending CF centres in Perth and Melbourne, Australia. Themes were developed iteratively using thematic analysis and assessed for validity and confirmability. RESULTS: Parents' experiences were positive overall; affording a sense of control over CF, disease knowledge, and belief that EDS was in the best interests of their child. Challenges included poor understanding about EDS measures leading to anxiety and distress, self-blame surrounding adverse findings, and emotional burden of surveillance visits. Tailored information regarding the practical and psychosocial aspects of EDS were endorsed. CONCLUSION: While experiences were generally positive there is need for information and psychosocial support for parents to mitigate anxiety and develop positive coping strategies surrounding surveillance procedures and results. Managing expectations regarding risks and benefits of disease surveillance in clinical and research settings are important aspects of care.

Developing a smartphone application to support social connectedness and wellbeing in young people with cystic fibrosis.

BACKGROUND: Young people with cystic fibrosis (CF) may be at increased risk of social isolation and mental illness. This study aimed to design and evaluate the usability and acceptability of a smartphone application (app) to support the social connectedness and wellbeing of young people living with CF. METHODS: Young people with CF aged 12-17 years (N = 22) were recruited from two paediatric hospitals in Australia. Study participants tested the CF app for six weeks before responding to an online survey about the app's usability and acceptability. A subsample of participants (n = 20) discussed the app's strengths and weaknesses during 11 online group interviews. RESULTS: During the six-week testing period, 77% of participants used the app at least once a week and 82% accessed the app from a smartphone. Usability of the CF app was rated high. Most participants agreed the app was easy to use (86%) and felt comfortable using it (96%). Acceptability of the app was moderate. 77% of participants agreed they would recommend the app to others. Recommendations to improve the app's functionality and acceptability included locating the chatroom within the app rather than redirecting users to a web browser and allowing users to personalise images, wellness tips and videos. CONCLUSIONS: This study developed and tested a highly usable, and moderately acceptable, smartphone app to improve the psychosocial health of young people living with CF. Future research will test the efficacy of the CF app on users' social connectedness and wellbeing.

Bullying and mental health amongst Australian children and young people with cystic fibrosis.

Currently, there is little research investigating how schools can support the mental health and social development of young people with cystic fibrosis (CF), given their heightened risk of mental illness. Few studies have examined the relationship between bullying and mental health in populations of children with CF. This study describes the peer bullying experiences of young people with CF, and examines associations between school bullying and the psychological well-being of these young people. A sequential mixed-methods approach was used to collect data from 26 young people with CF (10-16 years of age). These data were compared with large samples of healthy children. Following an online survey, 11 young people, through online focus groups, expanded on the survey findings, describing their experiences within the school environment. Young people with CF reported lower involvement in bullying victimization and perpetration relative to the comparison population. For older adolescents with CF, victimization was associated with less connectedness to school and less peer support, and more school loneliness, anxiety, and depression. Young people with CF reported they generally liked the school environment, and were happy with their friendships, whereas some older adolescents reported that bullying evoked anxiety and mood problems. Reported bullying was primarily verbal and targeted characteristics of their CF, including their coughing, noninvolvement in certain activities because of shortness of breath, use of medication, and being underweight (for boys only). The findings provide some recommendations for interventions to promote mental health and school engagement among young people with CF. (PsycINFO Database Record

Parental Experience of Information and Education Processes Following Diagnosis of Their Infant With Cystic Fibrosis Via Newborn Screening.

UNLABELLED: Following diagnosis with cystic fibrosis (CF), initial education powerfully influences parental adjustment and engagement with care teams. This study explored the education needs of ten parents following their infant's diagnosis with CF via newborn screening. DESIGN AND METHODS: Phenomenological study using van Manen's approach, with ten participant parents of children 1-8 years with CF. RESULTS: Parents recounted varying degrees of coping with information they acknowledged as overwhelming and difficult. For some it was too much too soon, while others sought such clarity to put CF into context. CONCLUSIONS: Participants delivered insight into their engagement with their education about CF. Their recommendations for appropriate context, content, format and timing of delivery enable development of education that is accurate and relevant.

Protocol for a study of the psychosocial determinants of health in early childhood among children with cystic fibrosis.

AIMS: To investigate the causal associations between family relationships, family functioning, social circumstances and health outcomes in young children with cystic fibrosis. BACKGROUND: The anticipated health gains for patients with cystic fibrosis, promised by early diagnosis through newborn screening, have yet to be fully realized, despite advances in cystic fibrosis health care with aggressive management in multidisciplinary clinics and the development of specific medications. Adverse psychosocial functioning may underpin the current lack of progress as it is well recognized that compromised early parent-child attachment relationship experiences and adverse social circumstances have negative impacts on lifelong health status and health resource use, even in healthy children. DESIGN: A cross-sectional (initial) and longitudinal (progressive), multicentre study of children aged 3 months-6 years with cystic fibrosis, who have been diagnosed by newborn screening. METHODS: Questionnaire and observational measures of parent psychosocial functioning, parenting and parent-child attachment and social markers; and including clinical outcomes of regular health surveillance with clinical, lung imaging (computerized tomography) and bronchoalveolar lavage for airway microbiology and inflammation. CONCLUSION: This will be the first study to investigate the causal effect of psychosocial functioning, parenting and attachment on physical health outcome measures in children with cystic fibrosis.