Chauhan, Umesh

Doherty, Alison Jayne

Hastings, Richard

Hatton, Christopher

Hood, Kerry

James-Jenkinson, Lynn

LEAVEY, RALPH

Randell, Elizabeth

Reed, Janet

Taggart, Laurence

Wilson, Neil

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 PROSPEROInternational prospective register of systematic reviews Barriers and facilitators to primary health care services for physical and / or mental healthissues experienced by adolescents and adults either with intellectual disabilities (only),with intellectual disabilities and autism, or with autism (only): an integrative reviewAlison Doherty, Richard Hastings, Christopher Hatton, Kerry Hood, Lynn James-Jenkinson, Ralph Leavey,Elizabeth Randell, Janet Reed, Laurence Taggart, Neil Wilson, Umesh Chauhan CitationAlison Doherty, Richard Hastings, Christopher Hatton, Kerry Hood, Lynn James-Jenkinson, RalphLeavey, Elizabeth Randell, Janet Reed, Laurence Taggart, Neil Wilson, Umesh Chauhan. Barriersand facilitators to primary health care services for physical and / or mental health issuesexperienced by adolescents and adults either with intellectual disabilities (only), with intellectualdisabilities and autism, or with autism (only): an integrative review. PROSPERO 2018CRD42018103103 Available from: http://www.crd.york.ac.uk/PROSPERO/display_record.php?ID=CRD42018103103 Review questionWhat are the barriers and facilitators that adolescents and adults with intellectual disabilities and / or autismexperience to accessing and / or using primary health care services for physical and / or mental healthissues? SearchesElectronic searches of e-databases: Cochrane database of Systematic Reviews, MEDLINE, EMBASE,CINAHL, PsycINFO. Hand searching of grey literature (publications, policy documents, guidance, reports,news articles, and social media articles). Citation searches and checking the reference lists of all includedstudies. All languages (to the extent that a translation is available and / or the data is understandable). Timelimit: 1980 to date.Subject index terms: MeSH terms and word terms:1. (TI ( learning N1 (disab* or difficult* or handicap*) ) OR TI ( mental* N1 (retard* or disab* or deficien* orhandicap*) ) OR TI ( intellectual* N1 (disab* or impair* or handicap*) ) OR TI development* N1 disab* OR TI (multipl* N1 (handicap* or disab*) ) OR TI "Down* syndrome" OR (MH "Developmental Disabilities") OR (MH"Intellectual Disability&#43;") OR  (MH "mentally disabled persons")) OR  (AB ( learning N1 (disab* ordifficult* or handicap*) ) OR AB ( mental* N1 (retard* or disab* or deficien* or handicap*) ) OR AB (intellectual* N1 (disab* or impair* or handicap*) ) OR AB development* N1 disab* OR AB ( multipl* N1(handicap* or disab*) ) OR AB"Down* syndrome");2. OR autism; OR autistic disorder, OR autism spectrum disorder; OR ASD; OR autistic spectrum condition;OR ASC; OR Asperger’s; OR ADHD; OR Attention Deficit Hyperactivity Disorder; OR APD; OR AuditoryProcessing Disorder; OR OCD; OR Obsessive Compulsive Disorder; OR SPD; OR Sensory ProcessingDisorder.3. AND adolescent; OR young adult; OR young people; OR teenagers; OR adult; 4. AND access; OR healthservices; OR referral and consultation; OR utilise; OR utilisation; OR utilization; OR facility design andconstruction; OR building; OR waiting room; OR family practice; OR primary health care; OR health status;OR physical health; OR mental health; OR social adjustment; OR adjustment; OR aid; OR modification; ORadaptation; OR intervention; OR apps; OR devices; OR monitors; OR delivery of health care; OR healthservices accessibility; OR innovation; OR toolkit; OR technology; OR self-help devices; OR informatics; ORcommunication aids for disabled; OR telemedicine; OR telehealth; OR support; OR patient advocacy; ORpeer group; OR social support.                                Page: 1 / 5 PROSPEROInternational prospective register of systematic reviews Types of study to be includedInclusion criteria: Qualitative studies.  Interviews.  Focus Groups.  Surveys.  Formal case studies e.g. casestudies of primary health care services.  Cohort studies.  Panel studies.  Ethnographies. Case reports.Quantitative studies.  Randomised Controlled Trials.  Quasi-experimental pre and post intervention testing. Mixed methods studies. Trials.  Feasibility studies. Intervention studies (primary health care and secondaryhealth care interventions). Studies published in peer-reviewed journals. Grey literature.  Policy documents. Guidelines.  Newspaper articles, commentaries and editorials. Social media: blogs / tweets / commentarieswritten by and for people with intellectual disabilities and / or autism.  (N.B., The social media search will belimited to the previous 5 years for the purposes of practicalities of hand searching such media i.e. 2013 -2018).Exclusion criteria: Individual clinical case studies (unpublished).  Individual case studies (published).  Condition or domain being studiedPhysical health conditions.  Mental health conditions.  Health care access.  Health care utilisation. Primaryhealth care. Participants/populationAdolescents and adults aged 14 years and over who either have: a) An intellectual disability (only); b) Anintellectual disability and autism; c) Autism (only); d) Asperger’s syndrome.Inclusion criteria: Studies involving participants who have been formally identified by health care / educationproviders as having an intellectual disability (mild, moderate, severe or profound) and / or an autismcondition. Studies involving participants who self-identify as having an intellectual disability and / or anautism condition. Adolescents and / or young people with either or: intellectual disability (only); intellectualdisability and autism; with autism only; or Asperger’s syndrome only (14 – 18 years). Adults (18 years andover) with either or: intellectual disability (only); intellectual disability and autism; autism only; or Asperger’ssyndrome only. Family members, paid or unpaid carers or support workers of people with intellectualdisabilities and / or autism. Wider studies if adolescents and adults with intellectual disabilities and / orautism are reported on separately and / or where over 70% of the study’s sample has individuals withintellectual disabilities and / or autism (aged 14 years and over). Wider studies which include children underthe age of 14 years, if the sample includes over 70% adolescents and or adults with intellectual disabilitiesand / or autism (aged 14 years and over). Primary health care settings (NHS provided services and NHScommissioned services - which may be in the NHS or which may be in the independent sector i.e. thirdsector / voluntary / private sector providers of primary health care services). General Practitioner’s practices,walk-in clinics, pharmacies, dentists, audiologists, optometrists. Annual Health Checks. Screening services(breast, cervical, bowel screening services). Vaccination and other preventative health services. Secondaryhealth care settings (hospitals, Accident and Emergency services, hospital wards or clinics) because theremay be relevant transferable knowledge, interventions and / or practice in secondary care for primary healthcare services. Mental health service provision in primary and secondary health care service settings. Exclusion criteria: Studies which include only a sample of children aged ?14 years with intellectualdisabilities and / or autism. Intervention(s), exposure(s)Information on barriers and facilitators to accessing and / or using primary health care services for physicaland / or mental health issues which are experienced by adolescents and adults with intellectual disabilitiesand / or autism (and their carers or support workers). Comparator(s)/controlNot applicable. Context                               Page: 2 / 5 PROSPEROInternational prospective register of systematic reviewsThe review will be international. Primary health care services in the UK and in other international countrieswith similarly structured, funded and resourced primary health care services will be included.  However,studies involving other countries with differently structured, funded and resourced primary health careservices may also be informative and these will also be included. Main outcome(s)The views and experiences of adolescents and adults with intellectual disability and / or autism (and theircarers / other sources) in relation to barriers and facilitators to accessing and / or utilisation of primary healthcare services for physical and / or mental health issues which are experienced by adolescents and adultswith intellectual disabilities and / or autism.Timing and effect measures Additional outcome(s)The types of interventions, aids, adjustments, modifications which may facilitate access to, and utilisation of,primary health care services by adolescents and / or adults with intellectual disability and / or autism. The types of physical and mental health conditions experienced by this target population. The views and experiences of GPs and other primary health care practitioners involved in the provision anddelivery of primary health care services for physical and / or mental health issues which are experienced byadolescents and adults with intellectual disabilities and / or autism. Timing and effect measures Data extraction (selection and coding)Author(s) name(s), year, journal name, publication title, study aims or hypotheses, theoretical standpoints,study design, setting(s), country or countries, participant information (age, gender, ethnicity, type and level ofdisability), sample size, measures, interventions, analysis, findings and conclusions. Risk of bias (quality) assessmentCritical appraisal of studies using Mixed Methods Analysis Tools: MMAT: http://mixedmethodsappraisaltoolpublic.pbworks.comCochrane risk of bias: http://methods.cochrane.org/bias/assessing-risk-bias-included-studies. CASP: https://casp-uk.net/casp-tools-checklists/ CONSORT: http://www.consort-statement.org  Strategy for data synthesisThematic analysis and narrative description of qualitative and quantitative studies’ findings. Analysis of subgroups or subsetsNot applicable. Contact details for further informationAlison Dohertyadoherty7@uclan.ac.uk Organisational affiliation of the reviewUniversity of Central Lancashirewww.uclan.ac.uk Review team members and their organisational affiliations                               Page: 3 / 5 PROSPEROInternational prospective register of systematic reviewsDr Alison Doherty. University of Central LancashireProfessor Richard Hastings. University of WarwickProfessor Christopher Hatton. University of LancasterProfessor Kerry Hood. Cardiff UniversityMrs Lynn James-Jenkinson. Pathways Associates CICDr Ralph Leavey. University of Central LancashireDr Elizabeth Randell. Cardiff UniversityMs Janet Reed. University of Central LancashireDr Laurence Taggart. University of UlsterDr Neil Wilson. University of Central LancashireProfessor Umesh Chauhan. University of Central Lancashire Anticipated or actual start date06 July 2018 Anticipated completion date30 April 2019 Funding sources/sponsorsLancashire Research Institute for Global Health & Wellbeing, University of Central Lancashire Conflicts of interestNone known LanguageEnglish CountryEngland, Northern Ireland, Wales Stage of reviewReview_Ongoing Subject index terms statusSubject indexing assigned by CRD Subject index termsAdolescent; Adult; Autistic Disorder; Health Services; Humans; Intellectual Disability; Mental Health; PhysicalExamination; Primary Health Care Date of registration in PROSPERO17 July 2018 Date of publication of this version17 July 2018 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                               Page: 4 / 5 PROSPEROInternational prospective register of systematic reviews 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 Versions17 July 2018PROSPEROThis 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

Barriers and facilitators to primary health care services for physical and / or mental health issues experienced by adolescents and adults either with intellectual disabilities (only), with intellectual disabilities and autism, or with autism (only): an integrative review

http://clok.uclan.ac.uk/24895/1/Doherty%20A%202018%20Barriers%20and%20facillitators%20NIHR.pdf

Barriers and facilitators to primary health care services for physical and / or mental health issues experienced by adolescents and adults either with intellectual disabilities (only), with intellectual disabilities and autism, or with autism (only): an integrative review

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