Thriving alongside cystic fibrosis: Developing a grounded theory of empowerment in children and young people with cystic fibrosis during key life transitions

Journal article

Fairweather, N. H., Jones, F. W., Harris, S. A., Deiros Collado, M. and Shayle, A. 2021. Thriving alongside cystic fibrosis: Developing a grounded theory of empowerment in children and young people with cystic fibrosis during key life transitions. Child: Care, Health and Development. 47 (4), pp. 487-493. https://doi.org/10.1111/cch.12860
AuthorsFairweather, N. H., Jones, F. W., Harris, S. A., Deiros Collado, M. and Shayle, A.
Abstract

Background: Although the importance of patient empowerment is increasingly recognized, little is known about empowerment in children and young people (CYP) with long-term conditions. Empowerment may be particularly important in CYP with cystic fibrosis (CF) due to high treatment burden and limited opportunities for peer support.

Methods: A Grounded Theory method was employed to develop a preliminary theory of empowerment in CYP with CF. Seven CYP with CF, five parents and four professionals were interviewed.

Results and conclusions: The emerging model suggests that ‘thriving alongside CF’ may be supported by interactions between ‘having a team’ and ‘taking charge and having a voice’, leading to ‘being able to just be a child’, that ‘concealing self’ may get in the way of ‘thriving alongside CF’ and that these processes occur within wider medical and developmental contexts. Study limitations, clinical and research implications are discussed.

KeywordsChildren; Adolescents ; Empowerment; Cystic Fibrosis
Year2021
JournalChild: Care, Health and Development
Journal citation47 (4), pp. 487-493
PublisherWiley
ISSN0305-1862
1365-2214
Digital Object Identifier (DOI)https://doi.org/10.1111/cch.12860
Official URLhttp://doi.org/10.1111/cch.12860
Publication dates
Online27 Feb 2021
Publication process dates
Accepted21 Feb 2021
Deposited11 Mar 2021
Accepted author manuscript
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Open
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Yeates, F., Jones, F., Wills, A. and McLaren, I. 2011. State-trace analysis of serial recurrent networks.
Demonstrating implicit learning with a novel serial reaction time task
Yeates, F., Jones, F., Wills, A. and McLaren, I. 2012. Demonstrating implicit learning with a novel serial reaction time task.
Associations and propositions: the case for a dual-process account of learning in humans
McLaren, I., Forrest, C., McLaren, R., Jones, F., Aitken, M. and Mackintosh, N. 2014. Associations and propositions: the case for a dual-process account of learning in humans. Neurobiology of Learning and Memory. 108, pp. 185-195. https://doi.org/10.1016/j.nlm.2013.09.014
Corrigendum to “A meta-analysis of cognitive therapy for worry in generalized anxiety disorder” [Clin. Psychol. Rev. 33/1 (2013) 120–132]
Hanrahan, F., Field, A., Jones, F. and Davey, G. 2013. Corrigendum to “A meta-analysis of cognitive therapy for worry in generalized anxiety disorder” [Clin. Psychol. Rev. 33/1 (2013) 120–132]. Clinical Psychology Review. 33 (3), pp. 500-500.
Cue competition in human associative learning [Abstract]
McLaren, R., Jones, F., Yeates, F. and McLaren, I. 2013. Cue competition in human associative learning [Abstract]. in: Knauff, M., Pauen, M., Sebanz, N. and Wachsmuth, I. (ed.) Proceedings of the 35th Annual Conference of the Cognitive Science Society Austin, TX Cognitive Science Society. pp. 4044-4044
Implicit learning: a demonstration and a revision to a novel SRT paradigm
Yeates, F., Jones, F., Wills, A., Aitken, M. and McLaren, I. 2013. Implicit learning: a demonstration and a revision to a novel SRT paradigm. in: Knauff, M., Sebanz, N., Pauen, M. and Wachsmuth, I. (ed.) Proceedings of the 35th Annual Meeting of the Cognitive Science Society Austin, TX Cognitive Science Society. pp. 3829-3834
Cultivating self-care and compassion in psychological therapists in training: the experience of practicing loving-kindness meditation.
Boellinghaus, I., Jones, F. and Hutton, J. 2013. Cultivating self-care and compassion in psychological therapists in training: the experience of practicing loving-kindness meditation. Training and Education in Professional Psychology. 2013 (July 8). https://doi.org/10.1037/a0033092
A randomised controlled trial of a brief online mindfulness-based intervention
Cavanagh, K., Strauss, C., Cicconi, F., Griffiths, N., Wyper, A. and Jones, F. 2013. A randomised controlled trial of a brief online mindfulness-based intervention. Behaviour Research and Therapy. 51 (9), pp. 573-578. https://doi.org/10.1016/j.brat.2013.06.003
Strengthening healthcare communities through knowledge exchange
Jones, F. and MacInnes, D. 2013. Strengthening healthcare communities through knowledge exchange.
Adolescents’ experiences of receiving and living with sequential cochlear implants: an interpretative phenomenological analysis
Hilton, K., Jones, F., Harmon, S. and Cropper, J. 2013. Adolescents’ experiences of receiving and living with sequential cochlear implants: an interpretative phenomenological analysis. The Journal of Deaf Studies and Deaf Education. https://doi.org/10.1093/deafed/ent025
A feasibility RCT of a brief mindfulness-based internet intervention for students
Cavanagh, K., Strauss, C., Forder, L. and Jones, F. 2013. A feasibility RCT of a brief mindfulness-based internet intervention for students.
Accurately representing stimulus conditions in computational simulations
Yeates, F., McAndrew, A., Jones, F., Wills, A., McLaren, R. and McLaren, I. 2013. Accurately representing stimulus conditions in computational simulations.
Modeling human sequence learning under incidental conditions
Yeates, F., Jones, F., Wills, A., McLaren, R. and McLaren, I. 2013. Modeling human sequence learning under incidental conditions. Journal of Experimental Psychology: Animal Behavior Processes. 39 (2), pp. 166-173. https://doi.org/10.1037/a0031922
Adolescent experiences of receiving and living with sequential cochlear implants: an interpretative phenomenological analysis
Hilton, K., Jones, F., Harmon, S. and Cropper, J. 2013. Adolescent experiences of receiving and living with sequential cochlear implants: an interpretative phenomenological analysis.
Facilitating reflective practice groups in clinical psychology training: a phenomenological study
Binks, C., Jones, F. and Knight, K. 2013. Facilitating reflective practice groups in clinical psychology training: a phenomenological study. Reflective Practice: International and Multidisciplinary Perspectives. https://doi.org/10.1080/14623943.2013.767228
The role of mindfulness and loving-kindness meditation in cultivating self-compassion and other-focused concern in health care professionals
Boellinghaus, I., Jones, F. and Hutton, J. 2012. The role of mindfulness and loving-kindness meditation in cultivating self-compassion and other-focused concern in health care professionals. Mindfulness. 2012 (Oct.). https://doi.org/10.1007/s12671-012-0158-6
The experiences and coping strategies of United Kingdom-based African women following an HIV diagnosis during pregnancy
Treisman, K., Jones, F. and Shaw, E. 2013. The experiences and coping strategies of United Kingdom-based African women following an HIV diagnosis during pregnancy. Journal of the Association of Nurses in AIDS Care. https://doi.org/10.1016/j.jana.2013.01.008
Can group narrative therapy facilitate adjustment to multiple sclerosis?
van den Heuvel, A., Jones, F. and Rich, J. 2012. Can group narrative therapy facilitate adjustment to multiple sclerosis?
Factors associated with client drop-out from NHS psychological therapy. [Abstract].
Jones, F. and Carraretto, K. 2002. Factors associated with client drop-out from NHS psychological therapy. [Abstract]. Proceedings of The British Psychological Society. 10, pp. 76-76.
Human sequence learning under incidental conditions
Yeates, F., Jones, F., Wills, A., McLaren, R. and McLaren, I. 2011. Human sequence learning under incidental conditions.
Demonstrating implicit learning with a novel serial reaction time task
Yeates, F., Jones, F., Wills, A., Aitken, M. and McLaren, I. 2012. Demonstrating implicit learning with a novel serial reaction time task.
Dissociating expectancy of shock and changes in skin conductance: an investigation of the Perruchet effect using an electrodermal paradigm
McAndrew, A., Jones, F., McLaren, R. and McLaren, I. 2012. Dissociating expectancy of shock and changes in skin conductance: an investigation of the Perruchet effect using an electrodermal paradigm.
Dissociating expectancy of shock and changes in skin conductance: an investigation of the Perruchet effect using an electrodermal paradigm
Jones, F., McAndrew, A., McLaren, R. and McLaren, I. 2012. Dissociating expectancy of shock and changes in skin conductance: an investigation of the Perruchet effect using an electrodermal paradigm.
Working with service-users to develop a mood as input based approach to worry
Jones, F., Chandler, R., Khimsharia, P., Bogdanowicz, K. and Davey, G. 2011. Working with service-users to develop a mood as input based approach to worry.
A qualitative dissociation in sequence learning
Jones, F. and McLaren, I. 2000. A qualitative dissociation in sequence learning.
Rules and associations: did the peak shift for you?
Jones, F. and McLaren, I. 1999. Rules and associations: did the peak shift for you?
Rules and associations: a qualitative dissociation in sequence learning
Jones, F. 1998. Rules and associations: a qualitative dissociation in sequence learning.
An exploration of the reading comprehension of adults with mild and borderline learning disabilities
Jones, F. 2003. An exploration of the reading comprehension of adults with mild and borderline learning disabilities. PhD Thesis University of Surrey Psychology
Modelling of decision processes in human categorisation
Jones, F., Wills, A. and McLaren, I. 1997. Modelling of decision processes in human categorisation.
Why now is the time to invest in e-health technologies
De Weger, E., Jones, F., MacInnes, D., Enser, J. and Francis, S. 2012. Why now is the time to invest in e-health technologies. Health Service Journal [Resource Centre].
The APECS-SRN: towards a model of SRT sequence learning
Jones, F., Le Pelley, M. and McLaren, I. 2002. The APECS-SRN: towards a model of SRT sequence learning. in: Burkett, L. (ed.) Proceedings of the 2002 International Joint Conference on Neural Networks: IJCNN'02: Hilton Hawaiian Village Hotel, Honolulu, Hawaii, May 12-17, 2002 Honolulu, Hawaii IEEE. pp. 692-696
State-trace analysis of sequence learning by simple recurrent networks
Yeates, F., Wills, A., Jones, F. and McLaren, I. 2012. State-trace analysis of sequence learning by simple recurrent networks. in: Miyake, N., Peeble, D. and Cooper, R. (ed.) Proceedings of the 34th Annual Meeting of the Cognitive Science Society, Sapporo, Japan, August 1-4 2012 Cognitive Science Society.
Implicit learning: a demonstration and a novel SRT paradigm
Yeates, F., Jones, F., Wills, A., Aitken, M. and McLaren, I. 2012. Implicit learning: a demonstration and a novel SRT paradigm. in: Miyake, N., Peeble, D. and Cooper, R. (ed.) Proceedings of the 34th Annual Meeting of the Cognitive Science Society, Sapporo, Japan, August 1-4 2012 Cognitive Science Society. pp. 1185-1190
Clinical psychology: training and development
Jones, F. 2011. Clinical psychology: training and development. in: Davey, G. (ed.) Introduction to Applied Psychology Wiley-Blackwell. pp. 111-126
Managing anxiety with CBT for dummies
Davey, G., Cavanagh, K., Jones, F., Turner, L. and Whittington, A. 2012. Managing anxiety with CBT for dummies. John Wiley & Sons.
Implementing video conferencing in mental health practice
De Weger, E., MacInnes, D., Enser, J., Francis, S. and Jones, F. 2012. Implementing video conferencing in mental health practice. Journal of Psychiatric and Mental Health Nursing. https://doi.org/10.1111/j.1365-2850.2012.01947.x
An exploratory study of the relationship between metacognition and recovery style in people with psychosis
Leonard, L., Jones, F. and Cupitt, C. 2012. An exploratory study of the relationship between metacognition and recovery style in people with psychosis. Psychosis. https://doi.org/10.1080/17522439.2012.722226
A meta-analysis of cognitive therapy for worry in generalized anxiety disorder
Hanrahan, F., Field, A., Jones, F. and Davey, G. 2013. A meta-analysis of cognitive therapy for worry in generalized anxiety disorder. Clinical Psychology Review. 33 (1), pp. 120-132. https://doi.org/10.1016/j.cpr.2012.10.008
Perceived social stigma and attitudes toward seeking therapy in training: a cross-national study
Digiuni, M., Jones, F. and Camic, P. 2012. Perceived social stigma and attitudes toward seeking therapy in training: a cross-national study. Psychotherapy: Theory, Research, Practice, Training. 2012 (Aug 13). https://doi.org/10.1037/a0028784
Dissociating expectancy of shock and changes in skin conductance: an investigation of the Perruchet effect using an electrodermal paradigm
McAndrew, A., Jones, F., McLaren, R. and McLaren, I. 2012. Dissociating expectancy of shock and changes in skin conductance: an investigation of the Perruchet effect using an electrodermal paradigm. Journal of Experimental Psychology: Animal Behavior Processes. 38 (2), pp. 203-208. https://doi.org/10.1037/a0026718
A grounded-theory study of mindfulness practice following mindfulness-based cognitive therapy
Langdon, S., Jones, F., Hutton, J. and Holttum, S. 2011. A grounded-theory study of mindfulness practice following mindfulness-based cognitive therapy. Mindfulness. 2 (4), pp. 270-281. https://doi.org/10.1007/s12671-011-0070-5
Out of control: an associative account of congruency effects in sequence learning
Beesley, T., Jones, F. and Shanks, D. 2012. Out of control: an associative account of congruency effects in sequence learning. Consciousness and Cognition. 21 (1), pp. 413-421. https://doi.org/10.1016/j.concog.2011.09.020
I'm not all gone, I can still speak: the experiences of younger people with dementia: an action research study
Pipon-Young, F., Lee, K., Jones, F. and Guss, R. 2012. I'm not all gone, I can still speak: the experiences of younger people with dementia: an action research study. Dementia: The International Journal for Social Research and Practice. 11 (5), pp. 597-616. https://doi.org/10.1177/1471301211421087
Understanding the concept of resilience with regard to looked after children: perceptions from education, social care and foster care
South, R., Jones, F., Creith, E. and Simonds, L. 2010. Understanding the concept of resilience with regard to looked after children: perceptions from education, social care and foster care.
Mindfulness as a mediator of self-stigma: an investigation into whether mindfulness mediates the effect of self-stigma on social functioning in a first episode psychosis sample
Mersh, L., Jones, F. and Oliver, J. 2010. Mindfulness as a mediator of self-stigma: an investigation into whether mindfulness mediates the effect of self-stigma on social functioning in a first episode psychosis sample.
Rules and associations
Jones, F. and McLaren, I. 1999. Rules and associations. in: Hahn, M. and Stoness, S. (ed.) Proceedings of the Twenty-first Annual Conference of the Cognitive Science Society London Psychology Press. pp. 240-245
Modelling the detailed pattern of SRT sequence learning
Jones, F. and McLaren, I. 2001. Modelling the detailed pattern of SRT sequence learning. in: Moore, J. and Stenning, K. (ed.) Proceedings of the Twenty-third Annual Conference of the Cognitive Science Society London Psychology Press. pp. 465-470
Service practitioner and referrer perspectives of a primary care based mental health consultation service
Tulett, F., Jones, F. and Lavender, T. 2006. Service practitioner and referrer perspectives of a primary care based mental health consultation service. Clinical Psychology Forum. 166, pp. 19-23.
Assessing the reading comprehension of adults with learning disabilities
Jones, F., Long, K. and Finlay, W. 2006. Assessing the reading comprehension of adults with learning disabilities. Journal of Intellectual Disability Research. 50 (6), pp. 410-418. https://doi.org/10.1111/j.1365-2788.2006.00787.x
Perceptual categorization: connectionist modelling and decision rules
Jones, F., Willis, A. and McLaren, I. 1998. Perceptual categorization: connectionist modelling and decision rules. The Quarterly Journal of Experimental Psychology Section B: Comparative and Physiological Psychology. 51 (1), pp. 33-58.
What is clinical psychology? Training and practice
Jones, F. 2008. What is clinical psychology? Training and practice. in: Davey, G. (ed.) Clinical Psychology: Topics in Applied Psychology London Hodder Education. pp. 3-18
Symbols can improve the reading comprehension of adults with learning disabilities
Jones, F., Long, K. and Finlay, W. 2007. Symbols can improve the reading comprehension of adults with learning disabilities. Journal of Intellectual Disability Research. 51 (7), pp. 545-550. https://doi.org/10.1111/j.1365-2788.2006.00926.x
Referrers' views of a psychological therapies service
Binks, C., Jones, F. and Camic, P. 2009. Referrers' views of a psychological therapies service. Clincial Psychology Forum. 200, pp. 18-23.
Client discontinuation of NHS psychological therapy revisited
Jones, F., Carraretto, K. and Deacon, L. 2008. Client discontinuation of NHS psychological therapy revisited. Clincial Psychology Forum. 182, pp. 9-12.
Human sequence learning under incidental and intentional conditions
Jones, F. and McLaren, I. 2009. Human sequence learning under incidental and intentional conditions. Journal of Experimental Psychology: Animal Behavior Processes. 35 (4), pp. 538-553. https://doi.org/10.1037/a0015661
Evidence for dissociable learning processes from the SRT task
Jones, F. 2001. Evidence for dissociable learning processes from the SRT task. PhD Thesis University of Cambridge Experimental Psychology
The prediction-irrelevance problem in grammar learning
Spiegel, R., Jones, F. and McClaren, I. 2001. The prediction-irrelevance problem in grammar learning. in: Neural Networks, 2001. Proceedings of IJCNN '01 - International Joint Conference on Neural Networks IEEE.