Self-reported involvement of family members in the care of adults with CF

McGuffie, Kimberly; Sellers, Deborah E.; Sawicki, Gregory S.; Robinson, Walter M.

doi:10.1016/j.jcf.2007.06.002

Cited by 26 publications

(27 citation statements)

References 19 publications

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“…The ‘parent‐as‐partner’ role supports the ‘lay carer’ role described by parents themselves (Lowton 2002), the ‘shared care’ role of parents and young people in home administration of treatment (Badlan 2006) and is similar to the continuing role of many parents in ‘prompting’ older offspring with CF to take their medication, even when they are no longer co‐resident (McGuffie et al. 2008).…”

Section: Discussionmentioning

confidence: 91%

“…2000). Most young people require multiple complex treatments and care for deteriorating health and the advent of CF‐related conditions; for patient comfort and to reduce hospital admissions, these continue to be administered in the home by family members wherever possible, requiring knowledge, skill, time and energy (McGuffie et al. 2008).…”

Section: Introductionmentioning

confidence: 99%

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What is the perceived nature of parental care and support for young people with cystic fibrosis as they enter adult health services?

Iles

Lowton

2009

Health &Amp; Social Care in the Community

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The majority of those diagnosed with cystic fibrosis (CF) now live to adulthood. In response to increased survival age, transition services have been developed to ensure smooth transfer from paediatric to adult specialist healthcare, although the majority of treatment and care continues to be delivered in the home. However, little is known about how young adults and staff conceptualise the nature of the parental role after young people have left paediatric care. The aim of this study is to explore the nature of parental support that is perceived to be available at this time. As part of a larger study of transitional care, semi‐structured interviews were conducted with 50 young people with CF aged 13–24 years (32 with experience of transition and/or adult CF services) and 23 specialist healthcare professionals (14 working in adult care) across two CF centres in Southeast England. Interviews took place in young people’s homes or within CF services, using a topic guide and were recorded, transcribed and analysed thematically. Four domains of perceived parental support were identified by the young people interviewed, with varying degrees of continuity into adult care: (1) Providing non‐clinical practical and emotional support; (2) Acting as ‘troubleshooters’ in times of health‐related crisis; (3) Working in partnership with offspring in ongoing disease management in the home and clinic; (4) Acting as ‘protectors’ of their children. Young people and service staff expressed tensions in managing parental involvement in post‐paediatric consultations and the degree to which parents should be aware of their offspring’s deteriorating health and social concerns. Parental anxiety and over‐involvement was perceived by many young people and staff as unsupportive. We suggest that although health and social care providers are mindful of the tensions that arise for those leaving paediatric services, the place of parental support in adult care is currently contentious for these ‘new’ ageing populations.

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Section: Discussionmentioning

confidence: 91%

Section: Introductionmentioning

confidence: 99%

What is the perceived nature of parental care and support for young people with cystic fibrosis as they enter adult health services?

Iles

Lowton

2009

Health &Amp; Social Care in the Community

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“…They endorsed a simultaneous desire for independence with a need to have a safety net, most often provided through their caregivers. Such concepts are not surprising; in fact, many adults with CF continue to report significant caregiver involvement in their daily lives and routines …”

Section: Discussionmentioning

confidence: 99%

Motivating adherence among adolescents with cystic fibrosis: Youth and parent perspectives

et al. 2014

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Summary As advances in the care of individuals with cystic fibrosis (CF) have resulted in improved survival, therapeutic regimens for treatment of CF have become increasingly complex. This high treatment burden poses challenges to chronic disease self-management, particularly amongst adolescents. The aim of this qualitative study was to understand the barriers and facilitators of adherence to chronic CF therapies as perceived by adolescents with CF and their parents. In a series of structured interviews with 18 youth and their parents, we explored issues related to daily routines, youth and parental roles regarding chronic therapy, and motivators for adherence. All interviews were audio-recorded and coded for themes and patterns. Reported barriers to adherence included time pressures, competing priorities, heightened awareness of disease trajectory, privacy concerns, and lack of perceived consequences from non-adherence. Identified facilitators for adherence included recognizing the importance of therapies, developing strong relationships with care teams, establishing structured routines, and focusing on shifting responsibilities from a parent to their adolescent child. The themes uncovered by these interviews identify areas for intervention and support by clinical programs seeking to improve adherence and self-management strategies for adolescents with CF Pediatr Pulmonol.

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“…Lowton (2002) found that lay carers routinely performed tasks for adults with CF that were once performed by nurses such as helping to administer intravenous antibiotics when given as home treatment. McGuffie et al (2008) found similar roles performed by families of adults with CF and other daily tasks such collecting prescriptions, cleaning nebulisers and assisting with physiotherapy. Whilst the findings we describe in the current paper are consistent with these studies, we also found that adults with CF utilised a range of other supports; these were not purely to assist with the demands of medical treatments but extended also to assistance with daily living tasks (shopping, cooking, gardening etc.)…”

Section: Cystic Fibrosismentioning

confidence: 66%

Living a ‘normal life’? Formal and informal supports in the lives of adults with cystic fibrosis

Edwards

Boxall

2013

Scandinavian Journal of Disability Research

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Self-reported involvement of family members in the care of adults with CF

Abstract: The depth of commitment required of families of children with CF has been well documented for decades. Our results suggest that the responsibilities of family members diminish only moderately as those with CF reach adulthood.

Cited by 26 publications

References 19 publications

What is the perceived nature of parental care and support for young people with cystic fibrosis as they enter adult health services?

What is the perceived nature of parental care and support for young people with cystic fibrosis as they enter adult health services?

Motivating adherence among adolescents with cystic fibrosis: Youth and parent perspectives

Living a ‘normal life’? Formal and informal supports in the lives of adults with cystic fibrosis

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