Facilitators and barriers to empowerment in children and young people with cystic fibrosis: a meta-synthesis of the qualitative literature

Journal article

Fairweather, Naomi and Jones, F. 2021. Facilitators and barriers to empowerment in children and young people with cystic fibrosis: a meta-synthesis of the qualitative literature. Disability and Rehabilitation. 44 (25), pp. 7767-7780. https://doi.org/10.1080/09638288.2021.2003876

Publication dates
Authors	Fairweather, Naomi and Jones, F.
Abstract	Purpose Patient empowerment may be particularly important in children and young people (CYP) with CF, due to high treatment burden and limited peer support opportunities. This review aimed to meta-synthesize the qualitative literature pertaining to empowerment in CYP with CF. Materials and methods This work was guided by the ENTREQ framework, with a search strategy based on the SPIDER framework. A systematic search of PsycInfo, Medline, CINAHL and ASSIA databases was conducted. Identified studies were quality assessed and data analysed using thematic synthesis. PROSPERO registration: CRD42019154014. Results Seventeen studies met inclusion criteria, though none explicitly explored empowerment. Thematic synthesis identified six analytic themes: relational support, information and understanding and feeling heard and respected appeared to facilitate empowerment, while prejudices and assumptions were identified as potential barriers. Mastery and competence and Navigating being different appeared to be components of empowerment. Conclusions The findings provide an initial understanding of patient empowerment in CYP with CF. Potential clinical implications include the need for more CYP-friendly information, more shared decision making and more opportunities to experience mastery. The need for further research is highlighted, particularly relating to developmental influences and factors unique to CF, which are not adequately addressed in existing patient empowerment models.
Keywords	Rehabilitation
Year	2021
Journal	Disability and Rehabilitation
Journal citation	44 (25), pp. 7767-7780
Publisher	Informa UK Limited
ISSN	0963-8288
	1464-5165
Digital Object Identifier (DOI)	https://doi.org/10.1080/09638288.2021.2003876
Official URL	http://dx.doi.org/10.1080/09638288.2021.2003876
Online	22 Nov 2021
Print	04 Dec 2022
Publication process dates
Accepted	03 Nov 2021
Deposited	24 Nov 2021
Output status	Published
Additional information	Publications router: Date 2021-11-22 of type 'publication_date' with format 'electronic' included in notification Publications router: Date 2021-11-22 of type 'epub' included in notification Publications router: Date 2022-12-04 of type 'ppub' included in notification Publications router: Date 2021-11-22 of type 'issued' included in notification
	Publications router: License for VOR version of this article starting on 2021-11-22: http://creativecommons.org/licenses/by-nc-nd/4.0/ included in notification
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License	http://creativecommons.org/licenses/by-nc-nd/4.0/

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Yeates, F., Jones, F., Wills, A. and McLaren, I. 2013. Do concurrently presented tones enhance sequence learning in humans? Testing a prediction of the RASRN model.

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. 2013. Dissociating expectancy of shock and changes in skin conductance: an Investigation of the Perruchet effect using an electrodermal paradigm.

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.

State-trace analysis of serial recurrent networks

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.