Table 3 Characteristics of included studies
Review | Diagnosis | Setting reported on | Point(s) in trajectory | Focus on particular experience? | Study design, no. sites | Data collection method(s) | Child sample: Sample size, age range | Parent sample: Sample size, age range of children | |
|---|---|---|---|---|---|---|---|---|---|
Anderson et al. (2018)[27] Australia | 1,2 | Neutropenia | Inpatient | Treat/ manage | No | Cross-sectional, Single centre | Interview | n/a | N = 9 (n = 8 mothers, n = 1 father) 0 – 14 yrs |
Angstrom -Brannstrom et al. (2014)[28] Sweden | 1 | Cancers | Inpatient | Treat/ manage | No | Cross-sectional, Single centre | Interview | N = 9 (n = 5 boys, n = 4 girls) 3 – 9 yrs | n/a |
Baenzinger et al. (2020)[29] Australia | 1,2 | Cancers | Inpatient, Outpatient | Treat/ manage | No | Cross-sectional, Multi-centre (n = 8) | Interview | n/a | N = 58 (n = 52 mothers, n = 6 fathers) 0 – 15 yrs |
Bergviken & Nilsson (2019)[30] Sweden | 2 | Cancers | Outpatient | Treat/ manage | No | Cross-sectional, Single centre | Interview | n/a | N = 17 (n = 11 mothers, n = 6 fathers) 1–15 yrs |
Bailey-Pearce et al. (2018) [31] UK | 2 | Mixed LT/LSCs | Inpatient | Not reported | No | Cross-sectional, Single centre | Interview | n/a | N = 7 (n = 7 fathers) Child age: not reported |
Baird et al. (2015, 2016)[32, 33] USA | 1,2 | Mixed LT/LSCs | Inpatient (PICU) | Critical episode | R’ships with staff | Cross-sectional, Single centre | Interview | n/a | N = 7 (n = 5 mothers, n = 2 fathers) 0 – 15 yrs |
Ballantyne et al. (2019)[34] Canada | 2 | Cerebral palsy | Inpatient | Diagnosis; treat/ manage | No | Cross-sectional, Single centre | Interview | n/a | N = 18 (n = 13 mothers, n = 5 fathers) Child age: not reported |
Baugham et al. (2017)[35] USA | 2 | Mixed LT/LSCs | Inpatient(NICU) | End of life; end stage | No | Cross-sectional, Single centre | Interview | n/a | N = 45 (n = 29 mothers, n = 16 fathers) Mean age at death: 41 days |
Brooten et al. (2013) [36] USA | 1,2 | Mixed LT/LSCs | Inpatient (NICU, PICU) | End stage | No | Cross-sectional, Multi-centre (n = 5) | Interview | n/a | N = 63 (n = 44 mothers, n = 19 fathers) Mean age at death: 43 mos |
Brouwer et al. (2020)[37] Netherlands | 1,2 | Mixed LT/LSCs | Inpatient, Outpatient | Treat/ manage; end of life; end stage | No | Cross-sectional, Multi-centre (no. sites not reported) | Interview | n/a | N = 64 ( parent unspecified) 1–12 yrs |
Butler et al. (2018a, 2018b, 2018c, 2019)[38,39,40,41] Australia | 1,2 | Mixed LT/LSCs | Inpatient (PICU) | End stage | R’ships with staff | Cross-sectional, Multi-centre (n = 4) | Interview | n/a | N = 26 (n = 18 mothers, n = 8 fathers) Child age: not reported |
Callans et al. (2016) [42] USA | 1,2 | Not specified (healthcare technology-dependent) | Inpatient | Not reported | Care transitions | Cross-sectional, Single centre | Focus group | n/a | N = 18 (n = 16 mothers, n = 2 fathers) Child age: not reported |
Carnevale (2013)[43] Canada | 1 | Mixed LT/LSCs | Inpatient (PICU) | Critical episode | Care transitions | Cross-sectional, Single centre | Interview | N = 12 (n = 8 boys, n = 4 girls) 3 – 17 yrs | n/a |
Carnevale et al. (2011)[44] Italy | 1,2 | Mixed LT/LSCs | Inpatient (PICU) | Critical episode | Decision-making | Cross-sectional, Multi-centre (n = 2) | Interview, focus group | n/a | N = 7 (n = 7 mothers) 1 mos – 14 yrs |
Cicero-Cinecto et al. (2017) [45] Mexico | 1,2 | Cancers | Inpatient | End of life; end stage | Decision making | Cross-sectional, Multi-centre (n = 3) | Interview | N = 6 (n = 4 boys, n = 2 girls) 13 – 18 yrs | N = 13 (n = 10 mothers, n = 3 fathers) Child age: not reported |
Coats et al. (2016)[46] USA | 2 | Not specified (Bone marrow transplant recipients) | Inpatient, Outpatient | Treat/ manage; end of life | Decision-making | Cross-sectional, Single centre | Interview | n/a | N = 7) (n = 5 mothers, n = 2 fathers) 2 – 8 yrs |
Conway et al. (2017)[47] USA | 1,2 | Cancers | Inpatient | Treat/ manage | No | Cross-sectional, Single centre | Interview | n/a | N = 50 (n = 48 mothers, n = 2 fathers) Child age: not reported |
Coyne et al. (2014)[48] Ireland | 1,2 | Cancers | Inpatient, Outpatient | Treat/ manage | Decision-making | Cross-sectional, Single centre | Interview | N = 20 (n = 11 boys, n = 9 girls) 7 – 16 yrs | N = 22 (n = 17 mothers, n = 5 fathers) Child are: not reported |
Dahav et al. (2018)[49] Sweden | 1,2 | Mixed LT/LSCs | Inpatient (PICU) | Critical episode | No | Cross-sectional, Single centre | Interview | n/a | N = 15 (n = 10 mothers, n = 5 fathers) 0 – 16 mos |
Darbyshire et al. (2015)[50] Italy | 2 | Mixed LT/LSCs | Inpatient, Outpatient | Diagnosis; end stage | No | Cross-sectional, Multi-centre (no. sites not reported) | Interview, qualitative survey | n/a | N = 33 (n = 17 mothers, n = 16 fathers) Child age: not reported |
Davies et al. (2017)[51] UK | 1,2 | Cancer: leukaemia | Outpatient | Treat/ manage | R’ships with staff | Longitudinal Multi-centre (n = 6) | Interview | n/a | N = 20 (n = 8 mothers, n = 12 fathers) 1–12 yrs |
Engler et al. (2020)[52] Germany | 1,2 | Not specified (Received paediatric palliative care) | Inpatient | End of life; end stage | No | Cross-sectional, Single centre | Interview | n/a | N = 13 (n = 9 mothers, n = 4 fathers) 4 mos – 17 yrs |
Engvall et al. (2016)[53] Sweden | 1 | Cancers | Outpatient | Treat/ manage | No | Cross-sectional, Multi-centre (n = 3) | Interview | N = 13 (n = 6 boys, n = 7 girls) 5 – 15 yrs | n/a |
Enskar et al. (2020)[54] Sweden | 1,2 | Cancers | Inpatient, Outpatient | Diagnosis; treat/ manage | Nurses’ caring practices | Longitudinal Single centre | Interview | N = 25 (n = 10 boys, n = 15 girls) 3—6 yrs | N = 38 (n = 24 mothers, n = 14 fathers) 1 – 6 yrs |
Falck et al. (2016)[55] USA | 1,2 | Mixed LT/LSCs | Inpatient (NICU) | Critical episode | No | Cross-sectional, Single centre | Interview | n/a | N = 6 (n = 6 mothers) 25–34 wks |
Falkenburg et al Netherlands | 1,2 | Mixed LT/LSCs | Inpatient (PICU) | End of life; end stage | Environment/ R’ships with staff | Cross-sectional, Single centre | Interview | n/a | N = 36 (n = 19 mothers, n = 17 fathers) 2 wks – 14 yrs |
Fixter et al. (2017)[58] UK | 2 | Cystic fibrosis | Inpatient | Treat/ manage | No | Cross-sectional, Single centre | Interview | n/a | N = 12 (n = 10 mothers, n = 2 fathers) 2–14 yrs |
Gabriel et al. (2019)[59] Australia | 1,2 | Cancers | Inpatient, Outpatient | Treat/ manage | Receiving surgery | Cross-sectional, Multi-centre (n = 11) | Interview | N = 17 (n = 7 boys, n = 10 girls) Age not reported | N = 15 (n = 7 mothers, n = 8 fathers) 0–15 yrs |
Gilmer et al. (2013)[60] USA | 2 | Mixed LT/LSCs | Inpatient (inc. PICU, NICU) | End of life | No | Cross-sectional, Multi-centre (n = 3) | Interview | n/a | N = 15 (n = 1 mother, n = 14 fathers) “Infants to 14 yrs” |
Greenway et al. (2019)[61] USA | 1,2 | Not specified (Admitted to PICU) | Inpatient (PICU) | Critical episode | Communication | Cross-sectional, | Interview | n/a | N = 52 (n = 33 mothers, n = 15 fathers, n = 4 legal guardians) 2 days—12 yrs |
Guttman et al. (2020)[62] USA | 2 | Cerebral palsy | Inpatient | Diagnosis; critical episode | Communication | Cross-sectional, Multi-centre (n = 2) | Qualitative survey | n/a | N = 266(parent unspecified) Child age: not reported |
Hemsley et al. (2013)[63] Australia | 1 | Cerebral palsy | Inpatient, Outpatient | Not reported | Communication | Cross-sectional, Multi-centre: no. sites not reported | Focus group | N = 6 (n = 4 boys, n = 2 girls) 13 – 18 yrs | N = 10 (n = 9 mothers, n = 1 father) Child age: not reported |
Hooghe et al. (2018)[64] Belgium | 2 | Cancers | Inpatient Outpatient | Treat/ manage | No | Cross-sectional, Single centre | Interview, focus group | n/a | N = 16 (n = 9 mothers, n = 7 fathers) Age range: 9 mos – 15 yrs |
Inglin et al. (2011)[65] Switzerland | 1,2 | Mixed LT/LSCs | Inpatient, Outpatient | Diagnosis; treat/ manage; end stage | No | Cross-sectional, Multi-centre (n = 4) | Interview | n/a | N = 17 (n = 15 mothers, n = 2 fathers) 1—18 yrs |
Iversen et al. (2013)[66] Norway | 1,2 | Cerebral palsy | Inpatient | Treat/ manage | Surgery | Cross-sectional, Single centre | Interview | n/a | N = 12 (n = 6 mothers, n = 6 fathers) 8—16 yrs |
Kelly et al. (2017)[67] USA | 1 | Cance | Inpatient, Outpatient | Not reported | Decision-making | Cross-sectional, Single centre | Interview | N = 29 (n = 15 boys, n = 14 girls) 9 – 17 yrs | n/a |
Kilicarslan-Toruner and Akgun- Citak (2013) [68] Turkey | 2 | Cancers | Inpatient, Outpatient | Treat/ manage | Decision-making | Cross-sectional, Single centre | Interview | n/a | N = 15 (n = 13 mothers, 2 fathers). 2–18 years |
Lamiani et al. (2013)[69] Italy | 2 | Mixed LT/LSCs | Inpatient (PICU) | End of life; end stage | No | Cross-sectional, | Interview | n/a | N = 8 (n = 5 mothers, n = 3 fathers) 2mos – 13 yrs |
Linder et al. (2017)[70] USA | 1 | Cancers | Inpatient | Treat/ manage | “Sources of bother” | Cross-sectional, Single centre | Qualitative survey | N = 50 (n = 23 boys, n = 27 girls) 7–18 yrs | n/a |
Livesley and Long (2013)[71] UK | 1 | Mixed LT/LSCs | Inpatient | Treat/ manage | No | Cross-sectional, Single centre | Interview | N = 16 (n = 7 boys, n = 9 girls) 5–16 yrs | n/a |
Mack et al. (2017)[72] USA | 1,2 | Cancers | Inpatient | Not reported | R’ships with staff | Cross-sectional, Multi-centre (n = 2) | Interview | n/a | N = 29 (n = 18 mothers, n = 10 fathers, n = 1 missing data) Child age: not reported |
Markwalter et al. (2019)[73] USA | 2 | Not specified (Admitted to PICU) | Inpatient (PICU) | Critical episode | Care transitions | Cross-sectional, Single centre | Interview | n/a | N = 25 (n = 25 mothers) 7 mos – 9yrs |
McNamara et al. (2020)[74] USA | 2 | Mixed LT/LSCs | Inpatient | Treat/ manage | Religious & spiritual care | Cross-sectional, Single centre | Interview | n/a | N = 19 (n = 19 mothers) Child age: not reported |
Mitchell et al. (2019)[75] UK | 1,2 | Mixed LT/LSCs | Inpatient (PICU) | End of life; end stage | Decision-making | Cross-sectional, Single centre | Interview | n/a | N = 17 (n = 11 mothers, n = 6 fathers) 5 mos—18 yrs |
Murrell et al. (2018)[76] USA | 1,2 | SMA: Type 1 | Inpatient, Outpatient | Not reported | No | Cross-sectional, Multi-centre (no. sites not reported) | Interview | n/a | N = 29 (n = 18 mothers, n = 11 fathers) 6 mos – 14 yrs |
Nicholas et al. (2016)[77] Canada | 2 | Mixed LT/LSCs | Inpatient | Diagnosis; treat/ manage; end of life; end stage | No | Cross-sectional, Single centre | Interview, focus group | n/a | N = 18 (n = 18 fathers) Child-age: not reporte d |
Nyborn et al. (2016)[78] USA | 1,2 | Cancers | Outpatient | Critical episode | Communication | Cross-sectional, Single centre | Interview | n/a | N = 28 (n = 26 mothers, n = 2 fathers) 2.5 – 17.5 yrs |
Obas et al. (2016)[79] Canada | 1,2 | Cardiac disease | Inpatient (PICU) | Treat/ manage | Care transitions | Cross-sectional, Single centre | Interview | n/a | N = 9 (parent unspecified) 2 mos – 14 yrs |
October et al. (2014)[80] UK | 2 | Mixed LT/LSCs | Inpatient (PICU) | Critical episode | Decision-making | Cross-sectional, Single centre | Qualitative survey | n/a | N = 43 (n = 25 mothers, n = 18 fathers) 1.4 – 10 yrs |
Orioles et al. (2013)[81] USA | 1,2 | Mixed LT/LSCs | Inpatient(inc. PICU) | Diagnosis | Communication | Cross-sectional, Single centre | Interview | n/a | N = 13 (n = 12 mothers, n = 1 father) “Infants”—18 yrs |
Oxley (2015)[82] UK | 2 | Not specified (Admitted to PICU) | Inpatient (PICU) | Critical episode | No | Cross-sectional, Single centre | Interview | n/a | N = 7 (n = 6 mothers, n = 1 father) Child age: not reported |
Pinto-Taylor et al. (2020)[83] USA | 1,2 | Mixed LT/LSCs | Inpatient (inc PICU), Outpatient | Diagnosis; end of life; end stage | Decision-making | Cross-sectional, Single centre | Interview | n/a | N = 9 (parent unspecified) Child age: not reported |
Robertson et al. (2019)[84] Australia | 1,2 | Cancers | Inpatient, Outpatient | Not reported | Decision-making | Cross-sectional, Single centre | Interview | N = 5 (n = 4 boys, n = 1 girl) 11—15 yrs | N = 25 (= 23 mothers, n = 2 fathers) 8mos – 11 yrs |
Roscigno et al. (2016)[85] USA | 1,2 | Traumatic brain injury | Inpatient | Critical episode | Nurses’ caring practices | Longitudinal Single centre | Interview | n/a | N = 29 (n = 25 mothers, n = 4 fathers) 6- 18 yrs |
Ruhe et al. (2016)[86] Switzerland | 1 | Cancers | Outpatient | Treat/ manage | Decision-making | Cross sectional Multi-centre (n = 9) | Interview | N = 17 (n = 11 boys, n = 6 girls) 9—17yrs | n/a |
Saetrang et al. (2019)[87] Norway | 1,2 | Duchenne muscular dystrophy | Outpatient | Treat/ manage | No | Cross-sectional, Single centre | Interview | n/a | N = 14 (n = 7 mothers, n = 7 fathers) 7 – 17 yrs |
Salmon et al. (2012)[88] UK | 1,2 | Cancer: leukaemia | Outpatient | Not reported | No | Longitudinal Multi-centre (n = 6) | Interview | n/a | N = 53 (n = 31 mothers, n = 22 fathers) 1 – 12 yrs |
Skirko et al. (2020)[89] USA | 2 | Pierre Robin Sequence | Inpatient, Outpatient | Not reported | No | Cross-sectional, Single centre | Interview, focus group | n/a | N = 16 (n = 11 mothers, n = 5 fathers) “ < 5 yrs” |
Smith et al. (2015)[90] UK | 1,2 | Hydro-cephalus | Inpatient, Outpatient | Diagnosis; treat/ manage | Decision-making | Cross-sectional, Multi-centre (n = 2) | Interview | n/a | N = 25 (n = 15 mothers, n = 10 fathers) 2 – 13 yrs |
Smith et al. (2018)[91] UK | 2 | Renal disease | Inpatient | Treat/ manage | Decision-making | Cross-sectional, Single centre | Interview | n/a | N = 10 (n = 6 mothers, n = 4 fathers) 18 – 28 mos |
Snaman et al. (2016)[92] USA | 1,2 | Cancers | Inpatient | End of life | Communication | Cross-sectional, Single centre | Focus group | n/a | N = 12 (parent unspecified) Child age: not reported |
Spalding et al. (2016)[93] UK | 1,2 | Not specified (transferred to hospice services) | Inpatient | Not reported | No | Cross-sectional, Single centre | Interview, focus group | N = 7 (n = 5 boys, n = 2 girls) 8 – 14 yrs | N = 5( mothers) Child age: not reported |
Spratling et al. (2012)[94] USA | 1 | Not specified (required respiratory assistance) | Outpatient | Treat/ manage | No | Cross-sectional, Single centre | Interview | N = 11 (n = 5 boys, n = 6 girls) 13 – 18 yrs | n/a |
Steele et al. (2013)[95] USA & Canada | 1,2 | Cancers | Inpatient | End of life; end stage | No | Cross-sectional, Multi-centre (n = 3) | Interview | n/a | N = 60 (n = 36 mothers, n = 24 fathers) 8 – 17 yrs |
Sullivan et al. (2014)[96] Australia | 2 | Mixed LT/LSCs | Inpatient | End of life; end stage | Decision-making | Cross-sectional, Single centre | Interview | n/a | N = 25 (parent unspecified) Age at death: 3 mos – 12 yrs |
Tenniglo et al. (2017)[97] Netherlands | 2 | Cancers | Inpatient, Outpatient | Treat/ manage | Decision-making | Cross-sectional, Multi-centre (n = 2) | Focus group | N = 11 (n = 6 boys, n = 5 girls) 12 – 18 yrs | N = 18 (n = 9 mothers, n = 9 fathers) 0 – 18 yrs |
Thienprayoon et al. (2016)[98] USA | 1,2 | Cancers | Inpatient | End of life; end stage | No | Cross-sectional, Single centre | Interview | n/a | N = 34 (n = 18 mothers, n = 13 fathers, n = 3 ‘other family caregiverr’) 2 – 18 yrs |
Tong et al. (2010)[99] Australia | 1,2 | Renal disease | Inpatient, Outpatient | Diagnosis; treat/ manage | No | Cross-sectional, Multi-centre (n = 2) | Interview | n/a | N = 20 (n = 15 mothers, n = 5 fathers) 0 – 18 yrs |
Wangmo et al. (2016)[100] Switzerland | 1,2 | Cancers | Inpatient, Outpatient | Diagnosis; treat/ manage | No | Cross-sectional, Single centre | Interview | N = 17 (n = 11 boys, n = 6 girls) 9 – 17 yrs | N = 19 (n = 15 mothers, n = 4 fathers) Child age: not reported |
Watt et al. (2011)[101] USA | 1,2 | Cancers | Inpatient, Outpatient | Diagnosis, treat/ manage | No | Cross-sectional, Multi-centre (no. of sites not reported) | Interview | n/a | N = 50 (n = 37 mothers, n = 13 fathers) Child age: not reported |
Weidner et al. (2011)[102] USA | 1,2 | Mixed LT/LSCs | Inpatient | End of life | No | Cross-sectional, Single centre | Interview, focus group | n/a | N = 29 (n = 20 mothers, n = 9 fathers Child age: not reported |
Young et al. (2011, 2013)[103, 104] UK | 1,2 | Cancers | Inpatient, Outpatient | Treat/ manage | Decision-making | Longitudinal Multi-centre (n = 6) | Interview | n/a | (2011) N = 53 (n = 33 mothers, n = 20 fathers) (2013) N = 67 (n = 40 mothers, n = 27 fathers) 1–12 yrs |
Yuen et al. (2012)[105] Netherlands | 1,2 | Lethal Epi. Bullosa (LAEB) | Inpatient, Outpatient | Diagnosis; end stage | No | Cross-sectional, Single centre | Interview | n/a | N = 16 (parent unspecified) 0.1 – 32.6 mos |
Zitzelsberger et al. (2014)[106] Canada | 1 | Renal disease | Inpatient | Treat /manage | Environment | Cross-sectional, Single centre | Interviews | N = 11 (n = 6 boys, n = 5 girls) 7 – 17 yrs | n/a |