Wealth of neurological conditions, over 600+, therefore not feasibly possible to review all. Progressive neurological conditions are one of the most prevalent categories of neurological conditions, due to the progressive deterioration in functioning (WHO, 2006)

George, Thomas

Nelson, David

Ray, Mo

Sisson, Kelly

Toze, Michael

University of Lincoln Institutional Repository

 PROSPEROInternational prospective register of systematic reviews Experiences of self-managing progressive neurological conditions in people living in ruraland remote communities: a systematic review of qualitative evidenceKelly Sisson, Thomas George, David Nelson, Michael Toze, Mo Ray CitationKelly Sisson, Thomas George, David Nelson, Michael Toze, Mo Ray. Experiences of self-managing progressive neurological conditions in people living in rural and remote communities: asystematic review of qualitative evidence. PROSPERO 2019 CRD42019122453 Available from: http://www.crd.york.ac.uk/PROSPERO/display_record.php?ID=CRD42019122453 Review questionTo identify, evaluate and synthesise qualitative evidence that has explored the experiences of people livingwith neurological conditions in rural and remote areas regarding self-management.To utilise this data to identify and explore positive and negative experiences relating to self-management ofneurological conditions in rural and remote areas.  SearchesSources to be searched: MEDLINE; CINAHL; PsycINFO; Scopus; Web of Science; EMBASE.Grey Literature: ProQuest Dissertations and Theses Global; EThOS; British Library; HMIC; NICE; OpengreySearch Dates: from February - August 2019 Publication period: noneAny Restrictions: English Language only Search strategyhttps://www.crd.york.ac.uk/PROSPEROFILES/122453_STRATEGY_20190117.pdf Types of study to be includedInclusion: Qualitative and mixed methods papers which report direct quotes from participants. Exclusion: Quantitative papers  Condition or domain being studiedThe following definition of self-management will be used in this review;‘Self-management refers to the individual’s ability to manage the symptoms, treatment, physical andpsychological consequences and life style changes inherent in living with a chronic condition. Efficacious self-management encompasses ability to monitor one’s condition and to effect the cognitive, behavioural andemotional responses necessary to maintain a satisfactory quality of life. Thus, a dynamic and continuousprocess of self-regulation is established (Barlow et al., 2002).Barlow, J., Wright, C., Sheasby, J., Turner, A., and Hainsworth, J. (2002) Self-management approaches forpeople with chronic conditions: a review. Patient Education and Counselling. 48, 177-187. Available fromwww.ScienceDirect.com/science/article/pii/S0738399102000320?via%3Dihub [accessed 9 January 2019]. Participants/population                               Page: 1 / 5 PROSPEROInternational prospective register of systematic reviewsInclusion: Adults (18 years +) who have a diagnosed neurological condition. Exclusion: Adolescents and children under the age of 18 with or without a diagnosed neurological condition.Studies that focus on informal carers (i.e. family or friends), or health and social care professionalsexperiences of self-management. Intervention(s), exposure(s)Inclusion: Individual self-management practices and behaviours, at any stage of the patient journey, within ahome environment.Exclusion: Studies that focus on the diagnosis or clinical treatment of neurological conditions. Studies thatfocus on group based or course based self-management programmes.  Comparator(s)/controlNone ContextInclusion: Studies that draw sample populations from rural or remote locations (in whole or in part) will beincluded. Exclusion: Studies that include populations from only urban areas, or where the geographical location of theparticipants is unclear will be excluded.  Main outcome(s)A qualitative synthesis of the self-management (as defined by Barlow et al, 2002) experiences of individualswith progressive neurological conditions who reside in rural and remote communities, to explore positive andnegative experiences relating to self-management of neurological conditions in rural and remote areas.‘Self-management refers to the individual’s ability to manage the symptoms, treatment, physical andpsychological consequences and life style changes inherent in living with a chronic condition. Efficacious self-management encompasses ability to monitor one’s condition and to effect the cognitive, behavioural andemotional responses necessary to maintain a satisfactory quality of life. Thus, a dynamic and continuousprocess of self-regulation is established (Barlow et al., 2002).Barlow, J., Wright, C., Sheasby, J., Turner, A., and Hainsworth, J. (2002) Self-management approaches forpeople with chronic conditions: a review. Patient Education and Counselling. 48, 177-187. Available fromwww.ScienceDirect.com/science/article/pii/S0738399102000320?via%3Dihub [accessed 9 January 2019]. Inclusion: Qualitative and mixed methods papers which report direct quotes from participants.Exclusion: Quantitative papers  Additional outcome(s)Not Applicable Data extraction (selection and coding)- Removal of duplicates- Title and abstracts independently checked by two reviewers (KS and DN) according to the inclusion andexclusion criteria- Those not meeting the eligibility criteria based on title or abstract screening will be excluded.                               Page: 2 / 5 PROSPEROInternational prospective register of systematic reviews- Potentially eligible articles will be read in full and reviewed independently against the inclusion/exclusioncriteria by two reviewers (KS and DN)- Those not meeting the criteria after full text assessment will be excluded.- If the two reviewers cannot reach an agreement, the will discuss the paper in an attempt to reach aconsensus.- Any further discrepancies will be resolved with the assistance of a third reviewer (TG or MR).- Data will then be extracted from the included studies using a standardised form. Test of standardisationform has been completed. Criteria for extraction will include:o Author nameo Year publishedo Country where the research is conductedo Population description (age, gender, neurological condition)o Aims, objectives and research question(s)o Method of data collection and analysis o Method of recruitmento Sample sizeo Study settingo Rural or remote location definition as reported by the authors o Self-management definition as reported by the authorso Types of self-management practice discussedo Positive experiences relating to self-management (to include direct participant quotes and authors’analysis)o Negative experiences relating to self-management (to include direct participant quotes and authors’analysis)                               Page: 3 / 5 PROSPEROInternational prospective register of systematic reviewso Authors limitationso Authors conclusions Risk of bias (quality) assessmentThe CASP Qualitative Checklist will be utilised to assess the risk of bias in the included articles. It should benoted that quality will not be a means of exclusion instead a discussion on the quality of the articles will beincluded in the final review. Quality assessment will be performed by two reviewers independently withdiscrepancies being resolved by a third reviewer. Strategy for data synthesisA narrative synthesis of the included papers will be produced. Additionally, a thematic analysis of primaryqualitative findings in relation to the experiences (positive and negative) of people living with neurologicalconditions in rural and remote areas regarding self-management will be reported in the review. The primarydata (participant quotations) will be extracted and imported into the qualitative software package NVivo andwill be coded and organised into related areas. Next, these codes will be developed to generate descriptivethemes. Lastly, analytical themes will be developed and discussed by 2-3 reviewers to reach consensus. Analysis of subgroups or subsetsNone Planned Contact details for further informationThomas Georgetgeorge@lincoln.ac.uk Organisational affiliation of the reviewUniversity of Lincolnwww.lincoln.ac.uk Review team members and their organisational affiliationsDr Kelly Sisson. University of LincolnMr Thomas George. University of LincolnMr David Nelson. University of LincolnDr Michael Toze. University of LincolnProfessor Mo Ray. University of Lincoln CollaboratorsMrs Carol Duff. University of Lincoln Anticipated or actual start date04 February 2019 Anticipated completion date31 October 2019 Funding sources/sponsorsNone Conflicts of interest LanguageEnglish CountryEngland Stage of reviewReview_Ongoing Subject index terms statusSubject indexing assigned by CRD                                Page: 4 / 5 PROSPEROInternational prospective register of systematic reviewsSubject index termsHumans; Nervous System Diseases; Rural Health Services; Rural Population Date of registration in PROSPERO06 February 2019 Date of publication of this version06 February 2019 Details of any existing review of the same topic by the same authors Stage of review at time of this submissionThe review has not started Stage Started CompletedPreliminary searches No NoPiloting of the study selection process No NoFormal screening of search results against eligibility criteria No NoData extraction No NoRisk of bias (quality) assessment No NoData analysis No No Versions06 February 2019PROSPEROThis information has been provided by the named contact for this review. CRD has accepted this information in goodfaith and registered the review in PROSPERO. CRD bears no responsibility or liability for the content of this registrationrecord, any associated files or external websites.  Powered by TCPDF (www.tcpdf.org)                               Page: 5 / 5

Experiences of self-managing progressive neurological conditions in people living in rural and remote communities: a systematic review of qualitative evidence

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Experiences of self-managing progressive neurological conditions in people living in rural and remote communities: a systematic review of qualitative evidence

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