Development and validation of a short form psychometric tool assessing the caregiving Challenge of Living with Cystic Fibrosis (CLCF-SF) in a child.

ObjectiveCaring for a child with cystic fibrosis (CF) is a rigorous daily commitment for caregivers and treatment burden is a major concern. We aimed to develop and validate a short form version of a 46-item tool assessing the Challenge of Living with Cystic Fibrosis (CLCF) for clinical or research use.DesignA novel genetic algorithm based on 'evolving' a subset of items from a pre-specified set of criteria, was applied to optimise the tool, using data from 135 families.Main outcome measuresInternal reliability and validity were assessed; the latter compared scores to validated tests of parental well-being, markers of treatment burden, and disease severity.ResultsThe 15-item CLCF-SF demonstrated very good internal consistency [Cronbach's alpha 0.82 (95%CI 0.78-0.87)]. Scores for convergent validity correlated with the Beck Depression Inventory (Rho = 0.48), State Trait Anxiety Inventory (STAI-State, Rho = 0.41; STAI-Trait, Rho = 0.43), Cystic Fibrosis Questionnaire-Revised, lung function (Rho = -0.37), caregiver treatment management (r = 0.48) and child treatment management (r = 0.45), and discriminated between unwell and well children with CF (Mean Difference 5.5, 95%CI 2.5-8.5, p p = 0.039).ConclusionThe CLCF-SF provides a robust 15-item tool for assessing the challenge of living with a child with CF

Development and validation of a short form psychometric tool assessing the caregiving Challenge of Living with Cystic Fibrosis (CLCF-SF) in a child.

Caring for a child with cystic fibrosis (CF) is a rigorous daily commitment for caregivers and treatment burden is a major concern. We aimed to develop and validate a short form version of a 46-item tool assessing the Challenge of Living with Cystic Fibrosis (CLCF) for clinical or research use. A novel genetic algorithm based on 'evolving' a subset of items from a pre-specified set of criteria, was applied to optimise the tool, using data from 135 families. Internal reliability and validity were assessed; the latter compared scores to validated tests of parental well-being, markers of treatment burden, and disease severity. The 15-item CLCF-SF demonstrated very good internal consistency [Cronbach's alpha 0.82 (95%CI 0.78-0.87)]. Scores for convergent validity correlated with the Beck Depression Inventory (Rho = 0.48), State Trait Anxiety Inventory (STAI-State, Rho = 0.41; STAI-Trait, Rho = 0.43), Cystic Fibrosis Questionnaire-Revised, lung function (Rho = -0.37), caregiver treatment management (  = 0.48) and child treatment management (  = 0.45), and discriminated between unwell and well children with CF (Mean Difference 5.5, 95%CI 2.5-8.5,  < 0.001), and recent or no hospital admission (MD 3.6, 95%CI 0.25-6.95,  = 0.039). The CLCF-SF provides a robust 15-item tool for assessing the challenge of living with a child with CF

Parental dysphoria following the diagnosis of cystic fibrosis : testing a systemic model

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Development and preliminary validation of the challenges of living with cystic fibrosis (CLCF) questionnaire: a 46-item measure of treatment burden for parent/carers of children with CF.

Treatments for cystic fibrosis (CF) are complex, labour-intensive, and perceived as highly burdensome by caregivers of children with CF. An instrument assessing burden of care is needed. A stepwise, qualitative design was used to create the CLCF with caregiver focus groups, participant researchers, a multidisciplinary professional panel, and cognitive interviews. Preliminary psychometric analyses evaluated the reliability and convergent validity of the CLCF scores. Cronbach's alpha assessed internal consistency and t-tests examined test-retest reliability. Correlations measured convergence between the Treatment Burden scale of the Cystic Fibrosis Questionnaire-Revised (CFQ-R) and the CLCF. Discriminant validity was assessed by comparing CLCF scores in one vs two-parent families, across ages, and in children with vs without ( ). Six Challenge subscales emerged from the qualitative data and the professional panel constructed a scoresheet estimating the Time and Effort required for treatments. Internal consistency and test-retest reliability were adequate. Good convergence was found between the Total Challenge score and Treatment Burden on the CFQ-R ( =-0.49,  = 0.02,  = 31). A recent infection signalled higher Total Challenge for caregivers ( (23)11.72,  = 0.002). The CLCF, developed in partnership with parents/caregivers and CF professionals, is a timely, disease-specific burden measure for clinical research

Unravelling complexities involved in parenting a child with cystic fibrosis: an interpretative phenomenological analysis

We conducted a qualitative study with caregivers for a contemporary understanding of the challenge of caring for a child with cystic fibrosis (CF). A single case is presented that details one woman’s experience from her unique perspective of both, ‘mother to a child with CF’ and ‘CF healthcare provider’ using an interpretative phenomenological analysis. Emergent themes include: ‘trying to keep things normal,’ which includes different types of normality and routine management of treatment; ‘when things become difficult,’ which includes dealing with symptoms and battling with CF related decline; and, ‘the complexity of decision making.’ The discussion section expands on how, for this mother contrasting modes of managing CF (everyday life/full-on alert) co-existed and were further complicated by (i) role discrepancies (mother/nurse), and (ii) a dialectic between affect and reason. The CF parenting challenge increasingly involves responsibility for complex healthcare interventions and this study suggests a need for further enquiry into how caregivers are involved in the treatment plan and decision-making about treatment. Practice implications are proposed

Through a mother's lens: a qualitative analysis reveals how temporal experience shifts when a boy born preterm has cystic fibrosis

We present a qualitative case study of one woman's experience of bringing up a child with cystic fibrosis (CF), born prematurely, using interpretative phenomenological analysis (IPA). This mother's existential account portrays time sequences for developmental milestones and synchronization of lifecycle events as atypical. Her perception of her child fluctuated radically; illness seemed to displace time, which collapsed with adversity. The temporal relations of CF and preterm birth are blurred at certain points. Although the challenge of compromised health may in some ways have promoted her son's development, his immature self-expression moved this mother towards an insider perspective of his experience. Cystic fibrosis is an ominous presence that demands respect even when the child is well. Anticipating the psychological impact of biomedical interventions can help to minimize trauma and maximize adaptation. Talking and play at transitional time points may assist the way parents and children assimilate temporal disruptions