Parent routines for managing cystic fibrosis in children

Grossoehme, Daniel H.; Filigno, Stephanie S.; Bishop, Meredith

doi:10.1007/s10880-014-9396-1

Cited by 26 publications

(15 citation statements)

References 29 publications

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“…26 A study in children with cystic fibrosis reported parental barriers to treatment regimens such as being overwhelmed by the burden of daily care and their lack of experience with caring for a child with a debilitating and chronic illness. 27 Therefore, the identified levels of confidence and perceived effectiveness in parents performing an MAC on children with NMD may potentially be assisting compliance to treatment regimens. Although the impact of exploring perceptions on therapy adherence and treatment outcomes could not be explained within the scope of this study, further research may provide clarification.…”

Section: Discussionmentioning

confidence: 99%

Parent, Child and Physiotherapist Perceptions of Effectiveness of Parent Performed Manually Assisted Cough on Children With Neuromuscular Disease

Pitcher

Doumit

Hutchence

et al. 2018

Rehabilitation Process and Outcome

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Published research exploring confidence and perceptions of effectiveness in performing a manually assisted cough on children with neuromuscular disease is not available. This descriptive study aimed to describe confidence and perceived effectiveness of parents, children, and therapists in parent performed manually assisted cough. A total of 28 children with neuromuscular disease, one of their parents, and physiotherapist participated. Overall, 40% of parents, 52% of children, and 46% of therapists were very confident in parents' ability to perform effective manually assisted coughs. Parents, children, and therapists largely perceived the parental manually assisted coughs as somewhat effective (68%, 60%, and 57%, respectively). Approximately, half of parents (48%), children (52%), and therapists (50%) felt very confident in parents' ability to retain the technique between clinic visits. Interestingly, percentage agreement statistics indicate that a reasonable proportion (30%) of pairs of respondents did not agree in their ratings. Overall, high percentages of favourable ratings were noted for all questions.

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Section: Discussionmentioning

confidence: 99%

Parent, Child and Physiotherapist Perceptions of Effectiveness of Parent Performed Manually Assisted Cough on Children With Neuromuscular Disease

Pitcher

Doumit

Hutchence

et al. 2018

Rehabilitation Process and Outcome

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“…Proactive assessment and intervention can help promote family wellness, resilience, and coping, and minimize future risks that impede achieving health targets. During the infant and preschool period, it is important to focus on parental mental health, the development of healthy attachments and positive parenting skills to build consistent, daily CF care routines 10 …”

Section: Introductionmentioning

confidence: 99%

Promoting emotional wellness in children with cystic fibrosis, Part I: Child and family resilience

Prieur

Christon

Mueller

et al. 2021

Pediatric Pulmonology

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Attention should be given to individual and family well‐being from a child's first interaction with the medical team and continuing throughout development, especially for families who experience chronic illnesses, such as cystic fibrosis (CF). While much attention has been given to the mental health of people with CF 12 years and older, this paper explores various areas for CF teams to assess and provide additional resources during the first 12 years of a child's life to promote child and family wellness. In this paper, we discuss parental mental health, social determinants of health, adherence/self‐care, nutrition, attention to family lifestyle factors, engagement with school and peers, and modulator therapy for this age group of people with CF. This is the first of two companion papers which examines emotional wellness of children during the early years. The second paper examines mental health assessment and intervention for children under 12. Both encourage teams to strive to promote optimal child and family emotional health and wellness, emphasizing holistic health promotion and prevention, early identification, and intervention.

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“…They require special care skills and competencies from their family caregivers for their rehabilitation, requiring training, supervision and observation of care. It is clear that relatives, when interacting with the nursing staff, seeks to share feelings and perceptions regarding the finitude and fragility of the human condition, which a chronic and severely severe disease imposes (6) . It is considered an interactive sharing when the human being not only reacts to the actions of the other, but understands the context in which he finds himself, which can positively influence healthy ways of living (7) .…”

Section: Introductionmentioning

confidence: 99%

Meanings assigned by families about children’s chronic disease diagnosis

2020

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Objectives: to understand the meanings assigned by family caregivers about children’s chronic disease diagnosis. Methods: qualitative study, which used as theoretical framework the Symbolic Interactionism, and methodological, the Grounded Theory. It was held in a pediatric unit in Southern Brazil, in 2016, through interviews submitted to open and axial analysis, with the participation of 20 family caregivers of hospitalized children. Results: relatives, interacting with the nursing/health staff, perceive children’s disease at birth. They are diagnosed with chronic disease by the physician and deny it. Subsequently, they accept and seek information on care. Conclusions: the results pointed out the stages that relatives experience by assigning meanings to about children’s chronic disease diagnosis. These meanings provide subsidies for nurses’ actions, which need to be aware of children’s and family’s needs in order to offer comprehensive and humanized care.

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Parent routines for managing cystic fibrosis in children

Cited by 26 publications

References 29 publications

Parent, Child and Physiotherapist Perceptions of Effectiveness of Parent Performed Manually Assisted Cough on Children With Neuromuscular Disease

Parent, Child and Physiotherapist Perceptions of Effectiveness of Parent Performed Manually Assisted Cough on Children With Neuromuscular Disease

Promoting emotional wellness in children with cystic fibrosis, Part I: Child and family resilience

Meanings assigned by families about children’s chronic disease diagnosis

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