Table A1.

Search terms for each database.

Database	Search Terms
PubMed	(((((‘Down Syndrome’[Mesh] OR “down syndrome”[text word] OR “downs syndrome”[text word] OR “down’s syndrome”[text word]) AND (function* or sever* or abilit* or capab* or impair* or ‘quality of life’ or qol or defic* or ‘well-being’ OR social* or emot* or ‘activities of daily living’ or adl or difficult* or autonom* or participat* or support* or resilien* OR ‘family relations’ or ‘Parent-Child Relations’ or ‘family functioning’ OR ‘interpersonal relations’ or perception* or perceiv* or transition* or experience* or ‘parent functioning’) AND (Family[text word] OR families[text word] OR father*[text word] OR mother*[text word] OR maternal[text word] or paternal[text word] or parent[text word] OR parents[text word] OR parental[text word] OR sibling*[text word] OR brother*[text word] OR sister*[text word] OR caregiv*[text word] OR ‘care giver’[text word] OR caretaker[text word] OR ‘care taker’[text word]) AND ‘last 10 years’[PDat] AND English[lang])) NOT ((Addresses[Publication Type] OR Autobiography[Publication Type] OR Bibliography[Publication Type] OR Biography[Publication Type] OR Books and Documents[Publication Type] OR Classical Article[Publication Type] OR Clinical Conference[Publication Type] OR Comment[Publication Type] OR Comparative Study[Publication Type] OR Congresses[Publication Type] OR Consensus Development Conference[Publication Type] OR Consensus Development Conference, NIH[Publication Type] OR Dataset[Publication Type] OR Dictionary[Publication Type] OR Directory[Publication Type] OR Duplicate Publication[Publication Type] OR Editorial[Publication Type] OR Electronic Supplementary Materials[Publication Type] OR English Abstract[Publication Type] OR Evaluation Studies[Publication Type] OR Festschrift[Publication Type] OR Government Publications[Publication Type] OR Guideline[Publication Type] OR Historical Article[Publication Type] OR Interactive Tutorial[Publication Type] OR Interview[Publication Type] OR Lectures[Publication Type] OR Legal Cases[Publication Type] OR Legislation[Publication Type] OR Letter[Publication Type] OR News[Publication Type] OR Newspaper Article[Publication Type] OR Overall[Publication Type] OR Patient Education Handout[Publication Type] OR Periodical Index[Publication Type] OR Personal Narratives[Publication Type] OR Portraits[Publication Type] OR Practice Guideline[Publication Type] OR Published Erratum[Publication Type] OR Retracted Publication[Publication Type] OR Retraction of Publication[Publication Type] OR Scientific Integrity Review[Publication Type] OR Technical Report[Publication Type] OR Validation Studies[Publication Type] OR Video-Audio Media[Publication Type] OR Webcasts[Publication Type])))) NOT ((rat OR rats or mouse or mice or rodents))
CINAHL	(TI(((MH ‘Down Syndrome’) OR ‘down syndrome’ OR ‘downs syndrome’ OR ‘down’s syndrome’) AND (function* or sever* or abilit* or capab* or impair* or ‘quality of life’ or qol or defic* or ‘well-being’ OR social* or emot* or ‘activities of daily living’ or adl or difficult* OR autonom* OR participat* OR support* or resilien* OR ‘family relations’ or ‘Parent-Child Relations’ or ‘family functioning’ OR ‘interpersonal relations’ or perception* or perceiv* or transition* or experience* or ‘parent functioning’) AND (Family OR families OR father* OR mother* OR parent OR parents OR parental OR or maternal or paternal or sibling* OR brother* OR sister* OR caregiv* OR ‘care giver’ OR caretaker OR ‘care taker’) NOT (mouse or mice)) OR AB (((MH ‘Down Syndrome’) OR ‘down syndrome’ OR ‘downs syndrome’ OR ‘down’s syndrome’ OR ‘trisomy 21’ OR ‘chromosome 21’) AND (function* or sever* or abilit* or capab* or impair* or ‘quality of life’ or qol or defic* or ‘well-being’ OR social* or emot* or ‘activities of daily living’ or adl or difficult* OR autonom* OR participat* OR support* or resilien* OR ‘family relations’ or ‘Parent-Child Relations’ or ‘family functioning’ OR ‘interpersonal relations’ or perception* or perceiv* or transition* or experience* or ‘parent functioning’) AND (Family OR families OR father* OR mother* OR parent OR parents OR parental OR or maternal or paternal or sibling* OR brother* OR sister* OR caregiv* OR ‘care giver’ OR caretaker OR ‘care taker’) NOT (mouse or mice) ) OR MW ( ((MH ‘Down Syndrome’) OR ‘down syndrome’ OR ‘downs syndrome’ OR ‘down’s syndrome’ OR ‘trisomy 21’ OR ‘chromosome 21’) AND (function* or sever* or abilit* or capab* or impair* or ‘quality of life’ or qol or defic* or ‘well-being’ OR social* or emot* or ‘activities of daily living’ or adl or difficult* OR autonom* OR participat* OR support* or resilien* OR ‘family relations’ or ‘Parent-Child Relations’ or ‘family functioning’ OR ‘interpersonal relations’ or perception* or perceiv* or transition* or experience* or ‘parent functioning’) AND (Family OR families OR father* OR mother* OR parent OR parents OR parental OR or maternal or paternal or sibling* OR brother* OR sister* OR caregiv* OR ‘care giver’ OR caretaker OR ‘care taker’) NOT (mouse or mice) ) ) NOT ( PT Abstract OR PT Algorithm OR PT Anecdote OR PT Bibliography OR PT Biography OR PT Book OR PT Book Chapter OR PT Book Review OR PT Brief Item OR PT Care Plan OR PT Cartoon OR PT CEU OR PT Code of Ethics OR PT Commentary OR PT Computer Program OR PT Consumer/Patient Teaching Materials OR PT Critical Path OR PT Diagnostic Images OR PT Directories OR PT Doctoral Dissertation OR PT Editorial OR PT Equations and Formulas OR PT Evidence-Based Care Sheet OR PT Exam Questions OR PT Forms OR PT Games OR PT Glossary OR PT Historical Material OR PT Interview OR PT Legal Case OR PT Letter OR PT Masters Thesis OR PT Nurse Practice Acts OR PT Nursing Diagnoses OR PT Nursing Interventions OR PT Obituary OR PT Pamphlet OR PT Pamphlet Chapter OR PT Pictorial OR PT Poetry OR PT Practice Acts OR PT Practice Guidelines OR PT Proceedings OR PT Protocol OR PT Questionnaire/Scale OR PT Questions and Answers OR PT Quick Lesson OR PT Research Instrument OR PT Response OR PT Standards OR PT Statistics OR PT Tables/Charts OR PT Teaching Materials OR PT Tracings OR PT Website )
PsycINFO	(TI (DE ‘Down’s Syndrome’ OR ‘down syndrome’ OR ‘downs syndrome’ OR ‘down’s syndrome’) AND (function* or sever* or abilit* or capab* or impair* or ‘quality of life’ or qol or defic* or ‘well-being’ OR social* or emot* or ‘activities of daily living’ or adl or difficult* OR autonom* OR participat* OR support* or resilien* OR ‘family relations’ or ‘Parent-Child Relations’ or ‘family functioning’ OR ‘interpersonal relations’ or perception* or perceiv* or transition* or experience* or ‘parent functioning’) AND (Family OR families OR father* OR mother* OR parent OR parents OR parental OR maternal or paternal or sibling* OR brother* OR sister* OR caregiv* OR ‘care giver’ OR caretaker OR ‘care taker’) NOT (mouse or mice)) OR AB (DE ‘Down’s Syndrome’ OR ‘down syndrome’ OR ‘downs syndrome’ OR ‘down’s syndrome’ OR ‘trisomy 21’ OR ‘chromosome 21’) AND (function* or sever* or abilit* or capab* or impair* or ‘quality of life’ or qol or defic* or ‘well-being’ OR social* or emot* or ‘activities of daily living’ or adl or difficult* OR autonom* OR participat* OR support* or resilien* OR ‘family relations’ or ‘Parent- Child Relations’ or ‘family functioning’ OR ‘interpersonal relations’ or perception* or perceiv* or transition* or experience* or ‘parent functioning’) AND (Family OR families OR father* OR mother* OR parent OR parents OR parental OR or maternal or paternal or sibling* OR brother* OR sister* OR caregiv* OR ‘care giver’ OR caretaker OR ‘care taker’) NOT (mouse or mice)) OR SU (DE ‘Down’s Syndrome’ OR ‘down syndrome’ OR ‘downs syndrome’ OR ‘down’s syndrome’ OR ‘trisomy 21’ OR ‘chromosome 21’) AND (function* or sever* or abilit* or capab* or impair* or ‘quality of life’ or qol or defic* or ‘well-being’ OR social* or emot* or ‘activities of daily living’ or adl or difficult* OR autonom* OR participat* OR support* or resilien* OR ‘family relations’ or ‘Parent- Child Relations’ or ‘family functioning’ OR ‘interpersonal relations’ or perception* or perceiv* or transition* or experience* or ‘parent functioning’) AND (Family OR families OR father* OR mother* OR maternal or paternal or parent OR parents OR parental OR sibling* OR brother* OR sister* OR caregiv* OR ‘care giver’ OR caretaker OR ‘care taker’) NOT (mouse or mice))) AND (PZ Abstract Collection OR PZ Bibliography OR PZ Chapter OR PZ Clarification OR PZ Column/Opinion OR PZ Comment/Reply OR PZ Dissertation OR PZ Editorial OR PZ Encyclopedia Entry OR PZ Interview OR PZ Letter OR PZ Obituary OR PZ Poetry OR PZ Publication Information OR PZ Retraction OR PZ Review-Book OR PZ Review-Media)
Web of Science	TOPIC: ((down syndrome OR downs syndrome OR downs syndrome)) AND TOPIC: ((function* or sever* or abilit* or capab* or impair* or ‘quality of life’ or qol or defic* or ‘well-being’ OR social* or emot* or ‘activities of daily living’ or adl or difficult* OR autonom* OR participat* OR support* or resilien* OR ‘family relations’ or ‘Parent- Child Relations’ or ‘family functioning’ OR ‘interpersonal relations’ or perception* or perceiv* or transition* or experience* or ‘parent functioning’)) AND TOPIC: ((Family OR families OR father* OR mother* OR parent OR parents OR parental or maternal or paternal or sibling* OR brother* OR sister* OR caregiv* OR care giver OR caretaker OR care taker)) NOT TOPIC: (mouse or mice or rat or rats or rodent *) Refined by: PUBLICATION YEARS: (2008 OR 2009 OR 2010 OR 2011 OR 2012 OR 2013 OR 2014 OR 2015 OR 2016 OR 2007 OR 2017) AND LANGUAGES: (ENGLISH) AND DOCUMENT TYPES: (ARTICLE OR REVIEW) AND DOCUMENT TYPES: (ARTICLE OR REVIEW) Indexes = SCI-EXPANDED, SSCI, A&HCI, CPCI-S, CPCI-SSH, BKCI-S, BKCI-SSH, ESCI, CCR-EXPANDED, IC Timespan = All year

* all terms that begin with that basic word root.