Cystic fibrosis‐related diabetes in older adolescents: Parental support and self‐management

Dashiff, Carol; Suzuki-Crumly, Julie; Kracke, Beverly; Britton, L.; Moreland, Elaine C.

doi:10.1111/jspn.12010

Cited by 21 publications

(49 citation statements)

References 50 publications

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“…In the present study, the adolescents had received education regarding CF during childhood; however, the information was not routinely or regularly repeated; therefore, the young adults lacked information about the disease and self-management. 10 , 11 …”

Section: Discussionmentioning

confidence: 99%

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Flying the nest: a challenge for young adults with cystic fibrosis and their parents

Bregnballe¹,

Boisen²,

Schiøtz³

et al. 2017

PPA

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ObjectivesAs young patients with cystic fibrosis (CF) grow up, they are expected to take increasing responsibility for the treatment and care of their disease. The aim of this study was to explore the disease-related challenges faced by young adults with CF and their parents, when they leave home.Materials and methodsA questionnaire survey of Danish patients with CF aged 18–25 years and their parents was conducted. The questionnaires were based on focus-group interviews with young adults with CF and their parents, and addressed challenges faced in the transition phase between childhood and adulthood, including different areas of disease management in everyday life.ResultsAmong all of the patients invited, 62% (n=58/94) of young adults and 53% (n=99/188) of their parents participated in the study. In total, 40% of the 18- to 25-year-olds were living with their parents, and the parents continued to play an active role in the daily care of their offspring’s disease. Among the young adults who had left home, both the patients and their parents reported many difficulties regarding disease management; the young adults reported difficulties in contacting social services and in affording and preparing sufficient CF-focused meals, and their parents reported difficulties in answering questions concerning social rights and CF in general, and in knowing how to give their offspring the best help, how much to interfere, and how to relinquish control of managing their offspring’s disease.ConclusionYoung adults with CF who have left home have difficulties in handling the disease and their parents have difficulties in knowing how to give them the best help. There is an urgent need for holistic CF transitional care, including ensuring that young adults master the essential skills for self-management as they leave their parents.

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Section: Discussionmentioning

confidence: 99%

“…Health professionals must ensure that young patients master the knowledge and skills essential for self-management of the disease. 10 , 11 , 14 – 16 …”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

Flying the nest: a challenge for young adults with cystic fibrosis and their parents

Bregnballe¹,

Boisen²,

Schiøtz³

et al. 2017

PPA

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“…Some viewed their diabetes as an extension of CF, others saw CFRD as a nuisance that could be ignored when the primary challenges of CF escalated, while still others felt that having lived with CF made them better equipped to address diabetes management [7] . These data also revealed that most CF patients were unfamiliar with the possibility of developing diabetes and that many lacked the knowledge and confidence to approach this new chronic illness [6] , [7] , [8] .…”

Section: Introductionmentioning

confidence: 99%

“…Existing reports include few participants diagnosed with CFRD as children [6] , and to our knowledge there have been no studies of how children react to CFRD management. Available data on parental reactions to their child's diagnosis with CFRD are mainly focused on adolescent autonomy [8] . We know very little about the ways in which patients and parents manage CFRD and factors that make adherence more or less difficult.…”

Section: Introductionmentioning

confidence: 99%

Patient and parent perceptions of the diagnosis and management of cystic fibrosis-related diabetes

Millington

Miller

Rubenstein

et al. 2014

Journal of Clinical & Translational Endocrinology

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BackgroundCystic Fibrosis Related Diabetes (CFRD) is an increasingly common complication in CF. CFRD introduces an additional complex chronic disease to individuals already attending to demanding treatment regimens. An improved understanding of the reaction to and coping mechanisms surrounding CFRD may facilitate management of CFRD.MethodsSemi-structured interviews completed by 10 children with CFRD, 10 adults with CFRD and 10 parents of children with CFRD in a single large CF Care Center were analyzed utilizing phenomenological analysis.ResultsPatients and families reported having limited knowledge of CFRD prior to diagnosis. CFRD was considered an extension of their underlying CF and successful management depended upon integration into existing routines.ConclusionsHealth care professionals caring for patients with CFRD should be informed of the specific challenges that arise in CFRD. Education in advance of CFRD diagnosis may facilitate management.

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Me, myself, and I: A systematic review of cystic fibrosis and self‐concept

Harrigan,

Jessup,

Bennett

et al. 2024

Pediatric Pulmonology

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Given extensive pertinent disease factors and evolving medical treatments, this systematic review explores qualitative and quantitative cystic fibrosis (CF) research surrounding self‐concept, an overarching perception of self. Research methodologies, self‐concept dimensions, prominent self‐concept findings and clinical recommendations are identified. Preferred Reporting Items for Systematic Review and Meta‐analyses guidelines were applied. PubMed, Scopus, Medline, Psycinfo, CINAHL (ebsco), and CENTRAL Cochrane electronic databases were searched from 2012 to 2022. Methodological quality was assessed using the critical appraisal skills program. Data‐based convergent synthesis was applied to analyze and report on qualitative and quantitative studies in parallel. Thirty‐seven publications met the inclusion criteria, most of which employed a cross‐sectional, single‐center design within an adolescent and adult population. Self‐efficacy, self‐esteem, and self‐identity studies were dimensions of self‐concept identified, with studies relating to self‐efficacy surrounding physical health management most prevalent. All three dimensions were positively associated with improved treatment adherence and psychosocial health. Efficacy tested intervention programs to enhance self‐concept are limited; however, an extensive range of clinical recommendations are offered, highlighting the importance of clinician self‐concept awareness, quality clinician–patient conversations and online CF peer‐support. Self‐concept is an important mechanism to optimize patient outcomes. Further CF self‐concept research is required, particularly multicenter, longitudinal, and interventional studies. Early childhood, post lung transplant and the older adult CF population in particular, lack research attention. Given the potential impact of rapidly evolving CF transmembrane conductance regulator modulator drugs on many aspects of self, future self‐concept research beyond the dimension of self‐efficacy may be beneficial.

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Cystic fibrosis‐related diabetes in older adolescents: Parental support and self‐management

Abstract: Education about CFRD management and support of adolescent autonomy in disease management is needed.

Cited by 21 publications

References 50 publications

Flying the nest: a challenge for young adults with cystic fibrosis and their parents

Flying the nest: a challenge for young adults with cystic fibrosis and their parents

Patient and parent perceptions of the diagnosis and management of cystic fibrosis-related diabetes

Me, myself, and I: A systematic review of cystic fibrosis and self‐concept

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