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)[38–41] 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 |