Table 2

Characteristics of included studies

AuthorYearCountrySettingPatientsCarersType of patientData collectionData analysis reported
Aasen et al 107 2012Norway5 H, East, West11ESKDInterviewsCritical discourse
Aasen et al 246 2012Norway5 H, East, West7ESKDInterviewsCritical discourse
Aasen287 2012Norway5 H, East, West1117ESKDInterviewsCritical discourse
Al-Arabi104 2006USA1 C, Southwest80ESKDInterviewsNaturalistic inquiry, thematic
Allen et al 173 2011Canada1 H, urban7ESKDEthnographic observations, interviewsParticipatory action, thematic
Allen et al 64 2015Canada2 H611ESKDEthnographic observations, interviewsThematic
Anderson et al 77 2008Australia9 H, 17 C241ESKDInterviewsThematic
Anderson et al 53 2012Australia9 H, 17 C241ESKDInterviewsThematic
Arslan and Ege200 2009Turkey1 H, Kenya10ESKDInterviewsContent
Ashby et al 38 2005Australia2 H, Melbourne16ESKDInterviewsGrounded theory
Avril-Sephula et al 118 2014UK1 H, North8ESKDInterviewsThematic
Axelsson et al 187 2012Sweden2 H, 2 C8ESKDInterviewsPhenomenological, hermeneutical
Axelsson et al 136 2012Sweden2 H, 2 C8ESKDInterviewsPhenomenological, hermeneutical
Axelsson et al 134 2015Sweden2 H, 1 C, urban14ESKDInterviewsContent
Bailey et al 235 2015UKBristol32TransplantedInterviewsConstant comparison
Bailey et al 39 2016UKBristol13TransplantedInterviewsConstant comparison
Baillie and Lankshear156 2015UKWales169ESKDInterviewsThematic
Baillie and Lankshear157 2015UKWales169ESKDInterviewsThematic
Barbosa and Valadares145 2009Brazil1 C, Rio de Janeiro10ESKDInterviewsGrounded theory
Bath et al 252 2003UKSouth10ESKDInterviewsPhenomenological
Beanlands et al 210 2005CanadaOntario37ESKDInterviewsGrounded theory
Bennett et al 197 2013Australia4 C92ESKDInterviews facilitated by imagesThematic
Blogg and Hyde69 2008AustraliaUrban5ESKDInterviewsEthnographic
Boaz and Morgan175 2014UKRural, urban25TransplantedInterviewsConstant comparison
Bourbonnais and Tousignant105 2012Canada1 H25ESKDInterviewsContent
Bridger238 2009UKGP, South23CKDInterviews, drawings, journalsGrounded theory
Bristowe et al 126 2015UK2 C, London20ESKDInterviewsThematic
de Brito-Ashurst et al 121 2011UKLondon20CKDFocus groups, vignettes and diariesThematic
Browne et al 226 2016USASouth40ESKDFocus groupsContent
Buldukoglu et al 186 2005TurkeyAntalya40TransplantedOpen-ended questionsConstant comparison
Burnette and Kickett78 2009Australia1 C, Perth6ESKDInterviewsThematic
Cadena et al 154 2015MexicoCoyotepec, Mexico5ESKDInterviewsInterpretative phenomenological
Calvey and Mee146 2011IrelandNA7ESKDInterviewsColaizzi’s method
Calvinl 251 2004USA3 C, Texas12ESKDInterviewsConstant comparison
Calvin et al 292 2014USATexas18ESKDInterviewsInterpretative, Glaserian
Campos and Turato234 2003Brazil1 H, Sao Paulo7ESKDInterviewsThematic
Campos and Turato87 2010Brazil1 H, Sao Paulo7ESKDInterviewsThematic
Campos et al 88 2015BrazilH, C, Paraná23ESKDInterviewsContent
Cases et al 279 2011UKNA6ESKDInterviewsPhenomenological
Cervantes et al 52 2017USA1 H, Colorado20ESKDInterviewsThematic
Chatrung et al 188 2015USACalifornia8CKDInterviewsThematic
Chenitz et al 86 2014USA4 C, Pennsylvania30ESKDInterviewsGrounded theory
Chiaranai40 2016Thailand1 H26ESKDInterviewsThematic
Cho and Shin41 2016South Korea1 H, South5ESKDInterviewsColaizzi’s method
Chong et al 164 2016South Korea1 H, South8ESKDInterviewsContent
Clarkson and Robinson106 2010USAOklahoma10ESKDInterviewsThematic
Costa et al 198 2014Brazil3 H, Paraíba26ESKDInterviewsLexical
Costantini et al 92 2008CanadaOntario14CKDInterviewsContent
Cox et al 148 2016USA6 C, New Mexico50ESKDInterviewsInterpretive description
Cramm et al 219 2015The Netherlands1 H, Rotterdam1512ESKDInterviewsFactor analysis, Q methodology
Cristóvao et al 113 2013Portugal1 C, Lisbon20ESKDInterviewsThematic
Crowley-Matoka et al 83 2005Mexico2 prog, Guadalajara50TransplantedInterviewsNA
Curtin et al 265 2001USADiverse18ESKDInterviewsContent
Curtin et al 264 2002USA18ESKDInterviewsContent
da Silva et al 103 2016Brazil1 C, Northeast30ESKDInterviewsContent and thematic
da Silva et al 338 2011Brazil1 H, Rio Grande do Sul9ESKDInterviewsQualitative
Darrell et al 281 2016USA1 H12ESKDInterviewsGiorgi’s method
Davison et al 231 2006CanadaAlberta24ESKDInterviewsConstant comparison, iterative
Davison et al 291 2006Canada1 H19ESKDInterviewsinductive
de Brito et al 89 2015Brazil1 H, Minas Gerais50TransplantedInterviewsCollective subject technique
de Rosenroll et al 277 2013Canada1 H10ESKDInterviewsConstant comparison
Dekkers et al 42 2005The Netherlands2 C7ESKDInterviewsPhenomenological
DePasquale et al 221 2013USANP, 1 C6862CKDGroup interviewsMixed method
dos Reis et al 155 2008Brazil1 H, Sao Paulo8ESKDInterviewsContent
dos Santos et al 162 2011BrazilRio de Janeiro8ESKDInterviewsGrounded theory
dos Santos et al 259 2015Brazil3 NP, Rio Grande do Sul20TransplantedInterviewsCritical incident
Ekelund et al 43 2010Sweden1 C, South3921ESKDInterviewsContent
Erlang et al 203 2015Denmark1 H9CKD (predialysis)InterviewsSystematic text condensation
Eslami et al 214 2016Iran4 C, Isfahan20ESKDInterviewsThematic
Finnegan-John et al 90 2013UK1 trust, London11812CKD/ESKDInterviews and focus groupsThematic
Flores et al 165 2004Brazil1 H, Rio Grande do Sul9ESKDInterviewsContent
Fraguas et al 37 2008Brazil2 H, Minas Gerais18ESKDInterviewsContent
Ghadami et al 239 2012Iran1 charity, Isfahan15TransplantedInterviewsContent
Giles et al 159 2003Canada1 H, urban4ESKDInterviewsThematic
Giles et al 160 2005Canada4ESKDInterviewsPhenomenological
Goff et al 288 2015USANew Mexico139ESKDInterviewsThematic
Goldane et al 176 2011USA1 C39TransplantedFocus groups and interviewsIterative analysis
Gordon et al 180 2007USA20TransplantedDiary entriesThematic
Gordon et al 84 2009USA2 H, Illinois, New York82TransplantedInterviewsThematic
Gricio et al 114 2009Brazil1 H, Sao Paulo20ESKDInterviewsThematic
Gullick et al 339 2016Australia1 H, Sydney115ESKDInterviewsHermeneutic interpretation
Hagren et al 282 2001Sweden1 H15ESKDInterviewsContent
Hagren et al 115 2005Sweden3 H41ESKDInterviewsContent
Hain et al 189 2011USA6 C, Southeast56ESKDInterviewsStory inquiry method
Hanson et al 70 2016Australia1 C, West20ESKDInterviewsThematic
Harrington et al 283 2016UK8 H24TransplantedInterviewsThematic
Harwood et al 270 2014Canada1 H13ESKDInterviewsContent
Harwood et al 248 2005UK1 H, London11CKD/ESKDInterviewsContent
Haspeslagh et al 240 2013Belgium1 H, Leuven31TransplantedInterviews and questionnairesThematic
Heiwe et al 137 2003Sweden1 H, Karolinska16ESKDInterviewsContextual
Heiwe et al 140 2004Sweden1 H, Karolinska16CKD/ESKDInterviewsContextual
Herbias et al 116 2016Chile1 C, Santiago12ESKDInterviewsStreubert’s method
Herlin et al 284 2010Sweden3 C9ESKDInterviewsGiorgi’s method
Hollingdale et al 227 2008UK20CKD/ESKDFocus groupsFramework approach
Hong et al 120 2017Singapore1 H14ESKDInterviewsThematic
Horigan et al 138 2013USA1 C, Mid-Atlantic14ESKDInterviewsContent
Hutchison et al 290 2017Canada1 clinic, urban916CKD/ESKDInterviewsInterpretive description
Iles-Smith et al 232 2005UK1 C, Manchester10CKD (predialysis)InterviewsThematic
Johnston et al 128 2012UK1 trust, London9ESKDInterviewsThematic
Kaba et al 340 2007Greece2 H, Athens23ESKDInterviewsQualitative
Kahn et al 35 2015USA2 NP, New York34CKDInterviewsThematic
Karamanidou et al 15 2014UK1 C, London7ESKDInterviewsInterpretative, phenomenological
Kazley et al 44 2015USA1 C, Southeast20CKD/ESKDFocus groupsThematic
Keeping et al 73 2001CanadaEast8ESKDInterviewsThematic
Kierans et al 167 2001Ireland5ESKDInterviews, life storiesPhenomenological
Kierans et al 166 2005Ireland5CKD/ESKDInterviewsPhenomenological
Kierans et al 125 2013Mexico1 H, Jalisco5187CKD/ESKD, transplantedInterviews, observation*Ethnographic approach
King et al 91 2002UK1 C22CKD/ESKDInterviewsTemplate approach
Knihs et al 168 2013Brazil1 C, South20ESKDInterviewsContent
Krespi-Boothby et al 147 2004UK1 H, 4 C16ESKDInterviewsThematic
Krespi-Boothby et al 151 2013UK1 H, 4 C16ESKDInterviewsTemplate approach
Ladin et al 202 2016USA2 C, Massachusetts23ESKDInterviewsThematic
Ladin et al 269 2017USA2 C, Massachusetts31ESKDInterviewsThematic Nutbeam’s framework
Landreneau et al 274 2006USA1 C, 1 NP, South6ESKDInterviewsColaizzi’s method
Landreneau et al 278 2007USA2 C, South12ESKDInterviewsColaizzi’s method
Lawrence et al 169 2013UK1 C10ESKDInterviewsConceptual and categorical
Lederer et al 266 2015USA1 C32CKD/ESKDInterviewsThematic
Lee et al 223 2008DenmarkDiverse2718ESKDFocus groupsThematic
Lee et al 45 2016Singapore1 organisation20ESKDInterviewsThematic
Lenci et al 256 2012USA4ESKDInterviewsThematic
Leung et al 181 2007Hong Kong1 C12TransplantedInterviewsContent
Lewis et al 285 2015UK14 H40ESKDInterviewsGrounded theory
Lin et al 190 2015Taiwan1 C, S, rural15ESKDInterviewsConstant comparison
Lindberg et al 46 2008Sweden1 C, mid-country10ESKDInterviewsContent
Lindberg et al 262 2013Sweden1 C, mid-country10ESKDInterviewsContent
Lindsay et al 280 2014Australia1 C, Sydney7ESKDInterviewsThematic
Llewellyn et al 271 2014UK4 C, London19ESKDInterviewsThematic
Lo et al 129 2016Australia4 H, Melbourne, Sydney58CKD/ESKDInterviews and focus groupsThematic
Lopes et al 170 2014Brazil1 C, Santa Catarina12ESKDInterviewsInterpretative
Lopez-Vargas et al 94 2014Australia3 C, New South Wales38CKDFocus groupsThematic
Lopez-Vargas et al 93 2016Australia3 C, New South Wales38CKD/ESKDFocus groupsThematic
Lovink et al 217 2015The Netherlands1 C12ESKDInterviewsContent
Low et al 161 2014UK5 C, Southeast26ESKDInterviewsThematic
Machado et al 149 2003BrazilSao Paulo18ESKDInterviewsDiscourse
Marques et al 228 2014BrazilParaná10ESKDInterviewsContent
Martin-McDonald et al 194 2003Australia5 C10ESKDInterviewsThematic
Martin-McDonald et al 195 2003Australia1 C10ESKDInterviewsThematic
Mason et al 95 2007UK1 C95CKDFocus groupsFramework approach
McCarthy et al 163 2010Australia1 H5ESKDInterviewsSequential
McKillop et al 267 2013UKClinics10CKDInterviewsThematic
Mercado-Martínez et al 49 2014MexicoJalisco, San Luis Potosí21TransplantedInterviewsThematic
Mercado-Martínez et al 48 2015Brazil1 H, South115ESKDInterviewsContent
Mercado-Martínez et al 47 2015MexicoPublic H and institutions, Jalisco3750ESKDInterviewsContent
Mitchell et al 205 2009UK1 C10CKD/ESKDInterviewsContent
Molzahn et al 294 2012CanadaMiddle size city14CKDInterviewsThematic
Moran et al 204 2009Ireland1 H16ESKDInterviewsInterpretive
Moran et al 150 2009Ireland1 H16ESKDInterviewsInterpretive
Moran et al 133 2011IrelandH16ESKDInterviewsInterpretative
Morton et al 79 2010AustraliaDiverse95ESKDInterviewsThematic
Muduma et al 96 2016UK2 C37TransplantedFocus groupsQualitative
Nagpal et al 218 2017USA1 C, New York36ESKDInterviewsCoding
Namiki et al 220 2010Australia1 H4ESKDInterviewsThematic
Niu et al 196 2017China1 C, Jiangsu23ESKDInterviewsContinuous comparison
Nobahar et al 67 2016Iran1 H, Semnan812ESKDInterviewsGraneheim Lundman content
Nobahar et al 68 2016Iran1 H, Semnan812ESKDInterviewsGranheim and Lundman’s approach
Noble et al 293 2009UK1 service, London3017ESKDInterviewsConstant comparison
Noble et al 98 2010UK1 service, London3017ESKDInterviewsConstant comparison
Noble et al 97 2012UK1 service19ESKDInterviewsConstant comparison
Nygardh et al 289 2011Sweden1 C, South12CKD (predialysis)InterviewsContent
Nygardh et al 236 2011Sweden1 C, South20CKDInterviewsLatent content
Malheiro Oliveira et al 209 2012BrazilBahia19ESKDInterviewsCategorical
Orr et al 182 2007UK1 C26TransplantedFocus groupsThematic
Orr et al 183 2007UK1 C26TransplantedFocus groupsThematic
Oyegbile et al 65 2016Nigeria2 H, Southwest15ESKDInterviewsContent
Pelletier-Hibbert et al 286 2001CanadaEast41ESKDFocus groupsThematic
Piccoli et al 224 2010Italy1 H12CKD/ESKD, transplantedFocus groupsNot clear
Pietrovski et al 208 2006Brazil1 H, Paraná15ESKDInterviewsContent
Pilger et al 225 2010Brazil1 C, Paraná22ESKDInterviewsThematic
Polaschek et al 54 2003New Zealand1 C6ESKDInterviewsThematic
Polaschek et al 55 2006New Zealand1 regional department20ESKDInterviewsThematic
Polaschek et al 56 2007New Zealand1 regional department20ESKDInterviewsThematic
Prieto et al 130 2011SpainAndalusia22ESKDInterviewsDiscourse
Rabiei et al 141 2015IranIsfahan20ESKDInterviewsThematic
Ravenscroft et al 260 2005Canada3 C7ESKDInterviewsInductive
Reid et al 268 2012UK1 C, clinics11CKD/ESKDInterviewsThematic
Reta et al 131 2014Spain1 H, Araba14ESKDInterviewsContent
Richard et al 108 2010USA14ESKDInterviewsCultural negotiation model framework
Rifkin et al 99 2010USA1 C20CKD/ESKDInterviewsThematic
Rix et al 58 2014AustraliaNew South Wales, rural18ESKDInterviewsThematic
Rix et al 57 2015AustraliaNew South Wales, rural1829ESKDInterviewsThematic
Rodrigues et al 191 2011Brazil1 C, South8ESKDInterviewsCategorical
Ros et al 244 2012USA1 H, Maryland19ESKDFocus groupsThematic
Roso et al 119 2013Brazil1 H, South15ESKDNarrative interviewsThematic
Russ et al 229 2005USA2 C, California43ESKDInterviewsAnthropologic study
Russell et al 241 2003USA1 C, Midwest16TransplantedInterviewsConstant comparison
Rygh et al 71 2012NorwayNorth11ESKDInterviewsInductive, actor’s point of view
Sadala et al 72 2012Brazil1 H19ESKDNarrative interviewsPhenomenological, hermeneutical
Sahaf et al 222 2017Iran2 hour, Sari9ESKDInterviewsvan Manen’s thematic
Salvalaggio et al 82 2003Canada1 H, Ontario12ESKDInterviewsImmersion/crystalisation
Schell et al 272 2012USA1 university system, 1 NP, North Carolina2911CKD/ESKDInterviews and focus groupsThematic
Schipper et al 184 2014The Netherlands5 H30TransplantedFocus groups and interviewsThematic
Schmid-Mohler et al 85 2014Switzerland1 H, Zurich12TransplantedInterviewsContent
Schober et al 206 2016USA14 states48ESKDInterviewsThematic
Seah et al 50 2013Singapore3 H9ESKDInterviewsInterpretative phenomenological
Shahgholian et al 142 2015Iran1 H, Isfahan17ESKDInterviewsColaizzi’s method
Shaw et al 275 2015New ZealandDiverse24ESKDInterviewsPhenomenological
Sheu et al 245 2012USAMaryland2723ESKDFocus groupsThematic
Shih et al 59 2011New Zealand1 C, North7ESKDInterviewsHermeneutical and thematic
Shirazian et al 123 2016USA1 C, Northeast23CKDFocus groupsThematic
Sieverdes et al 174 2015USA1 C, South Carolina27TransplantedFocus groupsThematic
Smith et al 207 2010USA2 C19ESKDFocus groupsContent
Spiers et al 177 2015UK1 C, London4TransplantedInterviewsInterpretative phenomenological
Spiers et al 171 2016UK2 online groups10ESKDInterviewsThematic
Stanfill et al 178 2012USA1 C, mid-South7TransplantedFocus groupsIterative
Stewart et al 81 2012USA2 C, urban19ESKDInterviewsCoding
Tanyi et al 201 2006USAMid-West16ESKDInterviewsColaizzi’s method
Tanyi et al 192 2008USA2 C, mid-West16ESKDInterviewsColaizzi’s method
Tanyi et al 193 2008USAMid-West16ESKDInterviewsColaizzi’s method
Tavares et al 216 2016Brazil1 H, Rio de Janeiro19ESKDInterviews and groupsContent
Taylor et al 111 2016Australia2 H, Sydney26ESKDInterviewsThematic
Taylor et al 215 2015UK6 trusts1511ESKDInterviewsConstant comparison
Theofilou et al 122 2013Greece1 H, Athens10ESKDInterviewsPhenomenological
Thomé et al 247 2011Brazil1H, Rio Grande do Sul10ESKDInterviewsCultural
Tielen et al 179 2011The Netherlands1 C26TransplantedInterviewsQ methodology
Tijerina et al 76 2006USA8 C, Texas26ESKDInterviewsCoding
Tong et al 63 2009Australia4 H, Brisbane, Sydney, Melbourne63CKD/ESKDFocus groupsThematic
Tong et al 152 2013Italy4 C, Bari, Marsala, Nissoria, Taranto2220ESKDInterviewsThematic
Tong et al 237 2015Australia1 C, Adelaide15CKD/ESKDInterviewsThematic
Tonkin-Crine et al 127 2015UK9 C42ESKDInterviewsThematic
Torchi et al 153 2014Brazil1 C, Rio de Janeiro10ESKDInterviewsCollective subject technique
Tovazzi et al 117 2012ItalyNorth12ESKDInterviewsPhenomenological
Tweed et al 109 2005UK1 C, Leicester9ESKDInterviewsPhenomenological
Urstad et al 242 2012Norway1 C15TransplantedInterviewsHermeneutic
Valsaraj et al 60 2014India1 H, South Karnataka10ESKDInterviewsPhenomenological
Velez et al 100 2006Spain1 C12ESKDInterviewsThematic
Vestman et al 263 2014Sweden1 H9ESKDWritten narrativesThematic
Visser et al 276 2009The Netherlands1 C14ESKDInterviewsThematic
Wachterman et al 172 2015USA1 C16ESKDInterviewsThematic
Walker et al 124 2012UK1 H9CKDInterviewsThematic
Walker et al 51 2016New Zealand3 C439ESKDInterviewsThematic
Walker et al 61 2016New Zealand3 C439ESKDInterviewsThematic
Walker et al 80 2017New Zealand3 C13ESKDInterviewsThematic
Walton et al 258 2002USA1 H, rural, Northwest11ESKDInterviewsGrounded theory
Walton257 2007USA1 C21ESKDInterviewsGrounded theory
Weil253 2000USA2 C, rural, Northwest14ESKDInterviewsThematic
Wells254 2015USA3 C, 1 NP, Texas1717ESKDInterviewsThematic
Wells62 2015USA3 C, 1 NP, Texas1521ESKDInterviewsThematic
White et al 139 2004USA1 C, Colorado69ESKDInterviewsThematic
Wiederhold et al 185 2012Germany1 C10TransplantedInterviewsContent
Wilkinson et al 75 2011UKLuton, West London, Leicester48ESKDInterviewsThematic
Wilkinson et al 233 2014UK4 C1645TransplantedInterviews and focus groupsThematic
Wilkinson et al 74 2016UK4 C1645ESKDInterviews and focus groupsThematic
Williams et al 101 2009Australia2 H20CKDInterviewsQualitative
Williams et al 102 2008Australia2 H, Melbourne23CKDInterviews and focus groupsInterpretative
Williams et al 261 2009Australia1 H, Melbourne23CKDInterviewsQualitative
Wilson et al 255 2015UK3 C1515ESKDFocus groupsThematic
Winterbottom et al 230 2012UK1 C, Northern England20CKDInterviewsThematic
Wu et al 66 2015Taiwan2 C, Central15ESKDInterviewsThematic
Xi et al 110 2011Canada1 C, Ontario13ESKDInterviewsThematic
Xi et al 158 2013Canada1 C, Ontario10ESKDInterviewsThematic
Yeun et al 143 2016South Korea1 H, Seoul33ESKDInterviewsQ methodology
Yngman-Uhlin et al 135 2010SwedenSoutheast14ESKDInterviewsPhenomenological
Yngman-Uhlin et al 132 2016Sweden1 H, Southeast8ESKDInterviewsContent
Yodchai et al 249 2016Thailand2 H, Songkhla20ESKDInterviewsQualitative
Yodchai et al 199 2012Thailand1 C, South5ESKDInterviewsGrounded theory
Yu et al 112 2014SingaporeNKF32ESKDInterviewsThematic
Yumang et al 144 2009Canada1 H, Quebec9ESKDInterviewsColaizzi’s method
Ziegert et al 213 2001Sweden12ESKDInterviewsPragmatic approach
Ziegert et al 211 2006SwedenSouthwest13ESKDInterviewsContent
Ziegert et al 212 2009SwedenSouthwest20ESKDInterviewsContent

  • *Includes healthcare staff.

  • C, centre, unit or clinic; CKD, chronic kidney disease; D, dialysis; ESKD, end-stage kidney disease; GP, general practice; H, hospital; HD, haemodialysis; NA, not available; NKF, National Kidney Foundation (Singapore); NP, nephrology practice; PD, peritoneal dialysis.