Guidelines for Supporting Adults Living in Care Facilities

Supporting Sexual Health and Intimacy in Care Facilities:

Guidelines for Supporting Adults Living in Long-Term Care Facilities and Group Homes in British Columbia, Canada

Literature Search

Methodology Bibliography Key Informants

January 2008

Mary-Doug Wright, Principal Apex Information #101 – 1857 West 4th Avenue Vancouver, BC V6J 1M4 604-731-8562 Table of contents

Introduction ...... 1

Methodology ...... 1

Results...... 1

Bibliography ...... 3

Appendices: Appendix A: Terminology Used for Searches ...... 18 Appendix B: Items Identified By Database or Resource Type ...... 19 Appendix C: Grey Literature Resources ...... 20 Government and International Agencies ...... 20 Organizations and Research Institutes ...... 20 Library Catalogues, Specialized Databases, Internet Peer-reviewed Sites, and Internet Search Engines...... 23

Funding for this publication was provided by: Sexual Health and Sexually Transmitted Infections Section Centre for Communicable Diseases and Infection Control Public Health Agency of Canada.

Introduction

A search was conducted between November 2007 and January 2008 to identify and gather both published and unpublished guidelines and policy documents to inform the development of Supporting Sexual Health and Intimacy in Care Facilities: Guidelines for Supporting Adults Living in Long-Term Care Facilities and Group Homes in British Columbia, Canada, published by Vancouver Coastal Health Authority.

Methodology

Sexual health experts and other key informants such as government officials, educators, researchers, and facility administrators and workers were identified and contacted by email or phone if no email address could be ascertained. They were asked if they knew of and could provide relevant guidelines or policy documents or if they knew of other individuals with subject expertise or of research being conducted in the area.

Initially, a systematic literature search was conducted to identify guidelines and policy documents in any language (Canadian and international), and other key published and unpublished literature discussing clinical, legal, ethical and educational issues surrounding sexual health and intimacy in adult long-term care facilities.

The search for peer-reviewed journal articles and other indexed literature was conducted in the following databases. Literature was limited to the last ten years (1997-2008), with no language or jurisdictional restrictions.

• Medline (the U.S. National Library of Medicine health database) • PubMed (Medline plus additional literature not indexed in Medline) • CINAHL (Cumulative Index to Nursing and Allied Health Literature) • PsycINFO (Psychological Abstracts) • AgeLine (Social gerontology and other aging-related literature)

Database searching was followed by a search of major library catalogues, relevant organization, government, think tank, and research institute websites, grey literature repositories, and free Internet-accessible databases were also searched for grey literature such as books, reports, and unpublished material. Note: Though the secondary literature discussing legal issues was included in the search, neither statutes nor other legislation were included, as the guideline development team had references to pertinent Canadian law.

Records of documents identified and excerpts or summaries of communication with key informants were created in a Reference Manager database for the purpose of bibliographic management and bibliography production.

Tables outlining databases and other resources searched, terminology used, search results by resource type, and contact information for informants can be found in the appendices:

• Appendix A: Search terminology • Appendix B: Items identified by database or resource type • Appendix C: Grey literature resources Government and international agencies Organizations and research institutes Library catalogues, specialized databases, internet peer-reviewed sites, and internet search engines

Results

In total, 303 potentially relevant documents were identified through the search process. Following examination of titles and/or abstracts by members of the guidelines development team, 214 documents were reviewed in full text by the guideline developers. Of these, 48 documents were cited in the guidelines. The remainder served as background documents.

Of 53 potential prospects, a total of 41 key informants were contacted. Of these, 29 responded and provided expert opinion and/or guidelines, policy documents, and other literature.

The remainder of this report consists of the bibliography of literature identified.

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Appendix A: Terminology Used for Searches

Search Terminology Subject Headings* Text Words* Sexuality, sexual health and intimacy: Sexual Behavior Sexuality (sex or sexual) education sexual need* sexual aggress* sexual (aggress* or access* or activit* or behavio* or need* or right*) (sex or sexual) surrogate* intimacy facilitated sex sexual (expression* or disinhibit*) hypersexual* Long term care and population group: Long-Term Care assisted living Nursing Homes care facilit* Group Homes group home* Homes for the Aged nursing home* Assisted Living Facilities skilled nursing facility* Residential Facilities (homes or home) for the (aged or elderly or disabled) (longterm or long-term or complex or extended or institutional or residential or intermediate) care Guidelines, policies, ethical and legal issues: Guidelines guideline* policy or policies

Informed Consent informed consent Ethics ethics or ethical Ethics, Medical Ethics, Nursing

Liability, Legal legal liability* law or laws * Subject headings were exploded as appropriate to include narrower terms. Examples in table are Medical Subject Headings from Medline and PubMed. For text word searching, both American and British spellings were included in the search as needed.

Appendix B: Items Identified By Database or Resource Type

Information Sources: Number of Documents Identified by Resource Type Database/Resource* Items Identified (Unique) Items Included in Review** 27 reviewed Medline 69 6 cited 29 reviewed PubMed 30 23 cited 27 reviewed CINAHL 67 7 cited 15 reviewed PsycINFO 45 1 cited 0 reviewed Ageline 13 0 cited 3 reviewed Google Scholar 3 1 cited 142 reviewed Grey literature resources 142 34 cited Total literature 214 total reviewed 214 (excluding informants) 48 cited Key informants 41 contacted 29 responded * Records were imported into Reference Manager database in order shown. Duplicate records across databases were eliminated. Numbers represent unique items found from each database. **Total number of documents reviewed and cited by resource. This number is not additive due to duplication across databases. For example, none of the items identified in Ageline were unique, therefore the count for items included in the review is zero.

Appendix C: Grey Literature Resources

Government and International Agencies

Australia

Australia Department of Health and Ageing http://www.health.gov.au/ http://www.health.gov.au/internet/wcms/publishing.nsf/Content/home (archived publications) Canada Public Health Agency of Canada http://www.phac-aspc.gc.ca/

Great Britain

Department of Health http://www.dh.gov.uk/

New Zealand

Ministry of Health http://www.moh.govt.nz/moh.nsf United States Department of Health & Human Services http://www.hhs.gov/ National Institute on Aging http://www.nia.nih.gov/

Organizations and Research Institutes Australia Australian Research Centre in Sex, Health and Society http://www.latrobe.edu.au/arcshs/ Belgium Vlaamse Vereniging voor Seksuologie [Flemish Association for Sexology] http://www.seksuologen-vlaanderen.be/ (No English interface – could not examine content) Canada Canadian Sex Research Forum http://www.csrf.ca/ Centre for Addictions and Mental Health (CAMH) http://www.camh.net/ Sex Information and Education Council of Canada (SIECCAN) http://www.sieccan.org/ Denmark Denmark. Ministry of Social Welfare http://eng.social.dk/

Organizations and Research Institutes National Board of Social Services http://servicestyrelsen.dk/wm142447 Finland Finnish Association for Sexology http://www.seksologinenseura.net/ Finnish Association for Sexual Policy (SEXPO) http://www.sexpo.fi/?julkaisut (No English interface – could not examine content) National Association of the Disabled http://www.invalidiliitto.fi/portal/en/ [English version] Väestöliitto (Family Federation) http://www.vaestoliitto.fi/in_english/ Sexual health page http://www.vaestoliitto.fi/in_english/sexual_health/ Germany Deutsche Gesellschaft für Sozialwissenschaftliche Sexualforschung (DGSS) [German Society for Social Scientific Sexuality Research] http://www.sexologie.org/ Magnus Hirschfeld Archive for Sexology, Humboldt-Universität zu Berlin http://www2.hu-berlin.de/sexology/

Great Britain

British Association for Sexual and Relationship Therapy (BASRT) www.basrt.org.uk International Cochrane Collaboration http://www.cochrane.org/ Disabled Peoples' International http://v1.dpi.org/lang-en/ European Federation of Sexology (EFS) http://www.europeansexology.com/ International Academy of Sex Research (IASR) http://www.iasr.org/ International Committee on the Rights of Sex Workers in Europe http://www.sexworkeurope.org/site/ Nordic Association for Clinical Sexology (NACS) http://www.nacs.eu/ Society for the Scientific Study of Sexuality http://www.sexscience.org/ United Nations Population Fund (UNFPA) http://www.unfpa.org/index.htm World Association for Sexual Health (WAS) http://www.worldsexology.org/

Organizations and Research Institutes World Health Organization Ageing and Life Course Unit http://www.who.int/ageing/en/ Sexual Health http://www.who.int/topics/sexual_health/en/

Italy

Istituto di Sessuologia Clinica http://www.sessuologiaclinica.it (No English interface – could not examine content)

Netherlands

Flekz Org www.flekszorg.nl (No English interface – could not examine content) Rutgers Nisso Groep http://www.rutgersnissogroep.nl/English Stichting handicap & seksualiteit (Association for Disability and Sexuality) www.deschildpad.nl (No English interface – could not examine content) Norway Norwegian Society of Clinical Sexology http://www.klinisksexologi.no/ http://www.klinisksexologi.no/english.php? (English interface)

Spain

Federación Española de Sociedades de Sexología www.fess.org.es (No English interface – could not examine content) Instituto Espill www.espill.org (No English interface – could not examine content)

United States

American Academy for Clinical Sexologists http://www.esextherapy.com/ American Association of Sex Educators, Counselors, and Therapists (AASECT) http://www.aasect.org/ Kinsey Institute for Research in Sex, Gender, and Reproduction http://www.indiana.edu/~kinsey/ National Sexuality Resource Center http://www.nsrc.sfsu.edu/ SexInfo, University of California at Santa Barbara http://www.soc.ucsb.edu/sexinfo/ Sexual Health Network http://www.sexualhealth.com/ Sexual Health Network http://www.sexualhealth.com/

Organizations and Research Institutes Sexuality Information and Education Council of the United States http://www.siecus.org/ Society for Sex Therapy and Research http://www.sstarnet.org/

Library Catalogues, Specialized Databases, Internet Peer-reviewed Sites, and Internet Search Engines Library catalogues WHOLIS (WHO) Library Catalogue http://dosei.who.int/ Specialized databases and resources Centre for Reviews and Dissemination databases http://www.crd.york.ac.uk/CRDWeb/ Cochrane Library http://www3.interscience.wiley.com/cgi-bin/mrwhome/106568753/HOME Intute (Health and Life Sciences Database formerly BIOME) http://www.intute.ac.uk/

Internet search engines

Google Google Scholar Vivisimo