The Development and Evaluation of a Self-Management Program for Cystic Fibrosis

Cottrell, Constance; Young, Gordon A.; Creer, Thomas L.; Holroyd, Kenneth A.; Kotses, Harry

doi:10.1089/pai.1996.10.109

Cited by 9 publications

(7 citation statements)

References 15 publications

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“…For CF specifically, there are only a few published trials of these types of interventions. In 1996, Cottrell et al conducted a randomized controlled trial of 34 families (mean children’s age 13.5 years) where the intervention group received training on principles of CF including anatomy, physiology, and pharmacology, and self-management strategies for both respiratory and nutritional issues 43. Outcomes included weight, knowledge of CF, quality of life, and adherence to treatment as measured through self-report in treatment diaries 6–8 weeks post-intervention.…”

Section: Strategies To Improve Adherence In Cf: Intervention Studiesmentioning

confidence: 99%

Strategies to optimize treatment adherence in adolescent patients with cystic fibrosis

Bishay

Sawicki

2016

AHMT

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While development of new treatments for cystic fibrosis (CF) has led to a significant improvement in survival age, routine daily treatment for CF is complex, burdensome, and time intensive. Adolescence is a period of decline in pulmonary function in CF, and is also a time when adherence to prescribed treatment plans for CF tends to decrease. Challenges to adherence in adolescents with CF include decreased parental involvement, time management and significant treatment burden, and adolescent perceptions of the necessity and value of the treatments prescribed. Studies of interventions to improve adherence are limited and focus on education, without significant evidence of success. Smaller studies on behavioral techniques do not focus on adolescents. Other challenges for improving adherence in adolescents with CF include infection control practices limiting in-person interactions. This review focuses on the existing evidence base on adherence intervention in adolescents with CF. Future directions for efforts to optimize treatment adherence in adolescents with CF include reducing treatment burden, developing patient-driven technology to improve tracking, communication, and online support, and rethinking the CF health services model to include assessment of individualized adherence barriers.

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Section: Strategies To Improve Adherence In Cf: Intervention Studiesmentioning

confidence: 99%

Strategies to optimize treatment adherence in adolescent patients with cystic fibrosis

Bishay

Sawicki

2016

AHMT

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“…The majority of studies ( n = 19, 76%) provided models of SCS, whilst other studies ( n = 6, 24%) informed the context of SCS. Several studies had limited detail about the diet/GI-related component of care ( Cooper et al, 2018 ; Cottrell et al, 1996 ; Fiallo-Scharer et al, 2019 ; Nabors et al, 2014 ), the dietary self-care programme ( Austin et al, 2011 , 2013 ) or routine support ( Rankin et al, 2018a ). However, they were included, as they were potentially relevant in answering the review questions.…”

Section: Resultsmentioning

confidence: 99%

“…In many of the studies, the advanced skill of self-monitoring enabled recognition and management of GI symptoms ( Bell, 2004 ; Cottrell et al, 1996 ; Culhane, 2013 ; Stapleton, 2001 ), hypo and hyperglycaemia ( Nabors et al, 2014 ) and also tracking adherence to daily goals ( Stapleton, 2001 ). Some studies combined building knowledge on how PERT or insulin works, with skills on administering and understanding what happens if too little or too much is taken ( Bell, 2004 ; Davis et al., 2004 ).…”

Section: Resultsmentioning

confidence: 99%

“…Provision of ongoing input, with regular reiteration of topics to reinforce knowledge and skills ( Owen et al, 2013 ), correct misconceptions, misinformation or fill gaps ( Culhane, 2013 ), together with further top-ups, enabled tailoring of SCS to meet specific and changing needs of children over time. This was not possible where SCS was delivered, for example, as an intensive 5-day block ( Nabors et al, 2014 ; Price et al, 2016 ; Singh et al., 2000 ) or as a very brief intervention, for example, two six-hour group sessions ( Cottrell et al, 1996 ) or viewing a CD-ROM for approximately 30 min ( Davis et al, 2004 ).…”

Section: Second Review Question: What Models Of Scs Have Worked When ...mentioning

confidence: 99%

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Self-care support of diet and the gut in the routine care of school-age children with long-term conditions: An integrative review

Cave

Milnes

McHugh

2021

J Child Health Care

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There is policy impetus for provision of self-care support (SCS) for children with long-term conditions (LTCs). However, it is not clear what SCS should consist of and how it can be delivered in routine care. This review aimed to synthesise the literature, specifically on SCS of diet and the gut as these components are essential for optimal growth and development and enhanced quality of life. Using an integrative review methodology, studies conducted between January 1990 and July 2020 were systematically identified and methodological quality assessed using the Mixed Methods Appraisal Tool. Twenty-five studies were included. SCS of diet and the gut consisted of support in developing and applying specific knowledge and skills and practical help with incorporating the demands of self-care into everyday life. Key requisites for models of SCS in the context of delivery and uptake in routine care were starting early, keeping it going, being flexible and choosing appropriate outcomes. This review contributes new understanding on the provision of SCS of diet and the gut for school-age children with LTCs, including identification of gaps in the literature and further research needs.

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“…Other research has shown that self-management is a critical component of discharge planning in other areas of orthopaedic practice, 27,28 as well as in neurological and cardiorespiratory physiotherapy. 29,30 The intricacy of discharge decision making and the numerous factors and strategies revealed in the study highlight the challenges therapists face in providing ''patient-centred care.'' Models of patient-centred care emphasize health professionals' duty to attend to individual patients' particular needs, circumstances, and stated preferences and to involve them in decision making.…”

Section: Discussionmentioning

confidence: 99%

Discharge from Outpatient Orthopaedic Physiotherapy: A Qualitative Descriptive Study of Physiotherapists' Practices

Pashley

Powers²,

McNamee³

et al. 2010

Physiotherapy Canada

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Purpose: To describe the clinical and contextual factors that influence physiotherapists' discharge decision-making processes in outpatient orthopaedic settings. Methods: The study used a descriptive qualitative design that included three key-informant interviews and two focus groups (n ¼ 7) of orthopaedic physiotherapists (total n ¼ 10) working in the Greater Toronto Area. Interviews and focus groups followed a semi-structured interview guide that included questions pertaining to participants' discharge decision-making processes, salient contextual factors, and challenges. Data were coded and analyzed for emerging categories and themes using constant comparison techniques and group analyses. Results: Participants indicated that a combination of factors and strategies were brought to bear on discharge decision making but that the process changed with clinical experience. Over time, further emphasis was attributed to the patient's role in his or her rehabilitation, and self-management goals were increasingly promoted. Experience affected how therapists conceptualized their roles in discharge decisions and how they negotiated goals with patients. Conclusions: Discharge decision making is a complex process that requires integrating numerous factors and negotiating with patients. Physiotherapists' decision-making practices evolve with experience and reveal the complexity of implementing models of ''client-centred care'' in practice. Further research is needed to explore these findings in other settings. RÉ SUMÉObjectif : Dé crire les facteurs cliniques et contextuels qui influencent le processus de dé cision d'un physiothé rapeute quand vient le temps de donner congé à un patient en consultation externe en milieu orthopé dique. Mé thode : L'é tude a eu recours à une structure descriptive qualitative qui a né cessité trois entrevues informatives principales et deux groupes de discussion (n ¼ 7) formé s de physiothé rapeutes en orthopé die (n total ¼ 10) qui travaillent dans la ré gion du Grand Toronto. Un guide d'entrevues semistructuré es comprenant des questions portant sur le processus de dé cision de donner congé à un patient, sur les facteurs contextuels pré dominants et sur les dé fis propres à de telles dé cisions fut suivi pour les entrevues et les groupes de discussion. Les donné es furent codé es puis analysé es pour que puissent ê tre dé gagé s les caté gories et les thè mes é mergents à l'aide de techniques de comparaison constantes et d'analyses groupé es. Ré sultats : Les participants furent valoir qu'une combinaison de facteurs et de straté gies é tait prise en compte dans la dé cision de donner congé , mais que le processus é voluait suivant l'expé rience clinique. Avec le temps, l'accent é tait davantage mis sur le rô le du patient dans sa ré adaptation, et les objectifs d'autogestion é taient de plus en plus favorisé s. Le nombre d'anné es d'expé rience influait sur la faç on dont les thé rapeutes percevaient leur rô le dans les dé cisions de donner congé et dans leur maniè re de né gocier ...

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The Development and Evaluation of a Self-Management Program for Cystic Fibrosis

Cited by 9 publications

References 15 publications

Strategies to optimize treatment adherence in adolescent patients with cystic fibrosis

Strategies to optimize treatment adherence in adolescent patients with cystic fibrosis

Self-care support of diet and the gut in the routine care of school-age children with long-term conditions: An integrative review

Discharge from Outpatient Orthopaedic Physiotherapy: A Qualitative Descriptive Study of Physiotherapists' Practices

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