211 What physiotherapy is being carried out for infants with cystic fibrosis (CF) in the UK since the introduction of newborn screening? Results from a national physiotherapy survey conducted by the Cystic Fibrosis Trust

Ferguson, K.; Old, K.

doi:10.1016/s1569-1993(13)60352-5

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“…In particular, parents experienced feelings of guilt, generated from both the experience at home and from external sources, such as the community, family, and health professionals. With a lack of expert consensus regarding the need to initiate routine chest physiotherapy in asymptomatic infants with CF (Prasad et al, 2008), there is a need to balance the inclusion of chest physiotherapy in the treatment regimen against the emotional and social impact of the treatment (Ferguson and Old, 2013; McIlwaine et al, 2007; Prasad et al, 2008). In the present work, the experience of guilt as it relates to chest physiotherapy within the context of the infant’s entire care needs is similar to that experienced by parents of older children with CF (Hodgkinson and Lester, 2002; Quittner et al, 1992; Tipping et al, 2010).…”

Section: Discussionmentioning

confidence: 99%

Physiotherapy: At what cost? Parents experience of performing chest physiotherapy for infants with cystic fibrosis

Andrews

Smith

Cox

2020

J Child Health Care

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Physiotherapy is one of the most burdensome aspects of cystic fibrosis (CF) care. Healthcare requirements for older children with CF are reported to impact parental quality of life and physiotherapy adherence. How parents of infants experience performing chest physiotherapy as a part of CF care is unknown. This study aimed to explore the experience of performing chest physiotherapy for parents of infants with CF. In this study, 13 parents of infants (aged 1–2 years) with CF participated in one in-depth semi-structured interview and completed a daily diary for five days. Principles of hermeneutic phenomenology guided interpretation of interview transcripts, diary entries, and field notes. For these parents, being responsible for performing chest physiotherapy was an ever-present experience of pressure, doubt, and guilt. Managing chest physiotherapy resulted in sacrifices that were perceived by parents as an expected and necessary part of meeting the healthcare needs of their child. Despite perceived sacrifices, performing chest physiotherapy was also experienced by parents as an opportunity to positively impact the health of their child. Awareness of parental perceptions and experiences of chest physiotherapy in CF may enhance the personalization of physiotherapy and minimize burden.

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