Isolation, motivation and balance: living with type 1 or cystic fibrosis‐related diabetes

Tierney, Stephanie; Deaton, Christi; Webb, Kevin; Jones, Andrew M.; Dodd, Mary; McKenna, D.; Rowe, Rachel

doi:10.1111/j.1365-2702.2008.02331.x

Cited by 22 publications

(39 citation statements)

References 23 publications

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“…Similarly to our own studies of diabetes self-management (23)(24), the notion of breakdowns and gaps in understanding was ubiquitous to many papers included in the review (96),(90),(98),(95),(99), (77),(100),(94). Often, these breakdowns were related to unexplainably high or low blood glucose readings that the participants were confronted with:

“When you see your blood sugar is within normal range, then you don’t feel anything.

…”

Section: Empirical Support For Sensemaking In Diabetes Self-managementmentioning

confidence: 82%

“…In contrast, when participants of the studies experienced gaps in understanding, they actively sought new information and examined their past experiences to fill these gaps and enable action (95),(77),(96), (84). In the majority of cases, these gaps were related to such daily activities as choosing meals:

“They (told) me that my blood sugar was far too high and … told me to try and bring this down to a manageable level.

…”

Section: Empirical Support For Sensemaking In Diabetes Self-managementmentioning

confidence: 99%

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Adopting the sensemaking perspective for chronic disease self-management

Mamykina

Smaldone

Bakken

2015

Journal of Biomedical Informatics

114

108

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Background Self-monitoring is an integral component of many chronic diseases; however few theoretical frameworks address how individuals understand self-monitoring data and use it to guide self-management. Purpose To articulate a theoretical framework of sensemaking in diabetes self-management that integrates existing scholarship with empirical data. Methods The proposed framework is grounded in theories of sensemaking adopted from organizational behavior, education, and human-computer interaction. To empirically validate the framework the researchers reviewed and analyzed reports on qualitative studies of diabetes self-management practices published in peer-reviewed journals from 2000 to 2015. Results The proposed framework distinguishes between sensemaking and habitual modes of self-management and identifies three essential sensemaking activities: perception of new information related to health and wellness, development of inferences that inform selection of actions, and carrying out daily activities in response to new information. The analysis of qualitative findings from 50 published reports provided ample empirical evidence for the proposed framework; however, it also identified a number of barriers to engaging in sensemaking in diabetes self-management. Conclusions The proposed framework suggests new directions for research in diabetes self-management and for design of new informatics interventions for data-driven self-management.

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“When you see your blood sugar is within normal range, then you don’t feel anything.

…”

Section: Empirical Support For Sensemaking In Diabetes Self-managementmentioning

confidence: 82%

“They (told) me that my blood sugar was far too high and … told me to try and bring this down to a manageable level.

…”

Section: Empirical Support For Sensemaking In Diabetes Self-managementmentioning

confidence: 99%

Adopting the sensemaking perspective for chronic disease self-management

Mamykina

Smaldone

Bakken

2015

Journal of Biomedical Informatics

114

108

View full text Add to dashboard Cite

show abstract

“…Furthermore, patients with CFRD need to deal with temporary disturbances of glucose regulation during bouts of illness, when more frequent BG tests need to be carried out 55 because control of BG levels is harder. 56 As one CFRD patient mentioned, 'You cannot just go out and do what you want, when you want, you've got to think hard and plan it a bit better. It's inconvenient. '…”

Section: Managementmentioning

confidence: 99%

“…They also used disease-specific measures, including the CFQoL. Over time, the physical health scores of the CF children declined from 65 to 56 (described as significant but no p-value given), whereas there was no change in the diabetic children, and those with asthma showed a non-significant improvement (55)(56)(57)(58)(59)(60).…”

Section: Medline = 1064 Retrieved Embase = 1281 Retrievedmentioning

confidence: 99%

Screening for cystic fibrosis-related diabetes: a systematic review.

Waugh

Royle²,

Craigie³

et al. 2012

Health Technol Assess

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How to obtain copies of this and other HTA programme reports An electronic version of this title, in Adobe Acrobat format, is available for downloading free of charge for personal use from the HTA website (www.hta.ac.uk). A fully searchable DVD is also available (see below).Printed copies of HTA journal series issues cost £20 each (post and packing free in the UK) to both public and private sector purchasers from our despatch agents.Non-UK purchasers will have to pay a small fee for post and packing. For European countries the cost is £2 per issue and for the rest of the world £3 per issue. How to order:-fax (with credit card details) -post (with credit card details or cheque) -phone during office hours (credit card only).Additionally the HTA website allows you to either print out your order or download a blank order form. Contact details are as follows:Synergie UK (HTA Department) Digital House, The Loddon Centre Wade Road Basingstoke Hants RG24 8QW Email: orders@hta.ac.uk Tel: 0845 812 4000 -ask for 'HTA Payment Services' (out-of-hours answer-phone service) Fax: 0845 812 4001 -put 'HTA Order' on the fax header Payment methods Paying by chequeIf you pay by cheque, the cheque must be in pounds sterling, made payable to University of Southampton and drawn on a bank with a UK address.Paying by credit card You can order using your credit card by phone, fax or post. SubscriptionsNHS libraries can subscribe free of charge. Public libraries can subscribe at a reduced cost of £100 for each volume (normally comprising 40-50 titles). The commercial subscription rate is £400 per volume (addresses within the UK) and £600 per volume (addresses outside the UK). Please see our website for details. Subscriptions can be purchased only for the current or forthcoming volume.How do I get a copy of HTA on DVD?Please use the form on the HTA website (www.hta.ac.uk/htacd/index.shtml). HTA on DVD is currently free of charge worldwide.The website also provides information about the HTA programme and lists the membership of the various committees. HTA NIHR Health Technology Assessment programmeThe Health Technology Assessment (HTA) programme, part of the National Institute for Health Research (NIHR), was set up in 1993. It produces high-quality research information on the effectiveness, costs and broader impact of health technologies for those who use, manage and provide care in the NHS. 'Health technologies' are broadly defined as all interventions used to promote health, prevent and treat disease, and improve rehabilitation and long-term care. The research findings from the HTA programme directly influence decision-making bodies such as the National Institute for Health and Clinical Excellence (NICE) and the National Screening Committee (NSC). HTA findings also help to improve the quality of clinical practice in the NHS indirectly in that they form a key component of the 'National Knowledge Service' . The HTA programme is needs led in that it fills gaps in the evidence needed by the NHS. There are three routes to the start of projects...

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“…75,76 Therefore, social media and facilitated online support networks for pediatric patients with CF may be particularly useful, but they must be closely monitored to ensure exchange of accurate information. There is some reported success in the literature in the field of peer-to-peer health care, where patients and their families use the Internet to find and share practical health care tips.…”

Section: Figurementioning

confidence: 99%