Starting early: An international focus on mental health in children living with cystic fibrosis

Georgiopoulos, Anna M.

doi:10.1002/ppul.24560

Cited by 6 publications

(8 citation statements)

References 14 publications

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“…It also reflects what is known about the importance of social priorities in AYA development (Patton et al, 2016). The impacts of mental health were also identified, as illustrated in previous research (Georgiopoulos, 2020;Quittner et al, 2016). However, this study provides a novel description of the interactions between worsening physical health, mental health, managing competing priorities, energy levels, motivation, self-efficacy and the impact on care avoidance and engagement.…”

Section: Health System Complexitysupporting

confidence: 70%

Understanding motivation for Australian adolescents and young adults with cystic fibrosis: Modifiable factors to support self‐management

Holland

Hilton

Cookson

et al. 2022

Health Social Care Comm

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Cystic fibrosis (CF) is Australia's most common life limiting genetic condition, characterised by declining health and quality of life (QoL) over time. Despite improvements in treatment, there remains no cure. Adolescents and young adults (AYAs) with CF experience broad impacts to psychosocial functioning and QoL, as well as major transitions in care, all at a time of significant developmental change. The importance of developmentally tailored approaches to youth health care and self-management for young people with CF are well understood. However, to date, models of youth specific self-management have been lacking and motivation for young people with CF has not been well explored. This qualitative study, based on a social constructionist epistemological framework, addresses this gap. A total of 21 AYAs aged 15-30 years were recruited through one paediatric and one adult Australian CF centre.Demographic, clinical and distress data were captured to describe health complexity. Semi-structured interviews were audio-recorded, transcribed and analysed using thematic analysis. Participants were representative of Australian AYAs with CF by demography and clinical status. Alarmingly, over a third reported clinically significant distress. Two themes emerged. The first Identified impacts to motivation and self-management resulting from the challenges of managing CF, life and care. These included time and competing priorities, changing health statis, mental health, social factors, unmet needs and health system complexity. The second identified factors that support motivation including: achievement, meaning and purpose; consequence avoidance; and accountability. These results illustrate the importance of AYA specific, theoretically founded, holistic self-management models which extend beyond current theoretical approaches that aim to understand behaviour change or address barriers, in isolation from motivation. Improved approaches to care based on these findings are essential to foster positive behavioural change, support self-management and foster the best health outcomes for young people living with CF.

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Section: Health System Complexitysupporting

confidence: 70%

Understanding motivation for Australian adolescents and young adults with cystic fibrosis: Modifiable factors to support self‐management

Holland

Hilton

Cookson

et al. 2022

Health Social Care Comm

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“…In addition to the physical challenges of the disease, pwCF have been found to experience elevated psychological symptoms (e.g., depression, anxiety), 3 as well as impairments in quality of life 4 . Over the past decade, significant advances have been made in the care of people with CF, including major steps toward systematically promoting mental health and well‐being 5 . International guidelines have recommended universal screening of people with CF for depression and anxiety 6 .…”

Section: Introductionmentioning

confidence: 99%

“…4 Over the past decade, significant advances have been made in the care of people with CF, including major steps toward systematically promoting mental health and well-being. 5 International guidelines have…”

mentioning

confidence: 99%

A systematic review of attention‐deficit/hyperactivity disorder in people living with cystic fibrosis

Power,

Shivak,

Kim

et al. 2024

Pediatric Pulmonology

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There is a lack of research that has focused on attention‐deficit hyperactivity disorder (ADHD) in people with cystic fibrosis (pwCF). Given ADHD is associated with executive functioning impairments, exploring ADHD in the context of living with cystic fibrosis (CF) is of great importance. The purpose of the current systematic review was to examine ADHD in pwCF across the lifespan in terms of its prevalence, its impact on various health outcomes, and treatments for managing ADHD. This systematic review followed the guidelines of the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses. Articles reporting studies of any design that focused on ADHD in pwCF were included. Studies were excluded if they did not meet this criterion and if they were written in languages other than English. PsycINFO, MEDLINE, EMBASE, and CINAHL databases were searched. Search items were based on three concepts: (1) terms related to CF, (2) terms related to ADHD, and (3) terms related to age. Ten studies were included in this systematic review. Reported prevalence rates of ADHD in pwCF ranged from 5.26% to 21.9%. The reported relationships between ADHD and CF and other health outcomes is inconsistent. In terms of treatment considerations, pharmacological interventions and behavioural strategies for managing ADHD in the context of living with CF have been reported as being successful. Additional research is needed to further explore ADHD in the CF population and health variables that may be associated with CF prognosis.

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“…A progressive respiratory system impairment with chronic inflammation and specific bacterial colonization is the main cause of death about CF patients [5]. Psychological and social impairments as well as depression and anxiety symptoms are described in adults and adolescents with CF [6] and reflects the severity and the complexity of disease management.…”

Section: Introductionmentioning

confidence: 99%

Wearable Sensors and Telemedicine Strategies for Cystic Fibrosis Patients

Elce¹

2021

AJBSR

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Starting early: An international focus on mental health in children living with cystic fibrosis

Cited by 6 publications

References 14 publications

Understanding motivation for Australian adolescents and young adults with cystic fibrosis: Modifiable factors to support self‐management

Understanding motivation for Australian adolescents and young adults with cystic fibrosis: Modifiable factors to support self‐management

A systematic review of attention‐deficit/hyperactivity disorder in people living with cystic fibrosis

Wearable Sensors and Telemedicine Strategies for Cystic Fibrosis Patients

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