Background
Methods
Review questions
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What aspects (or elements) of health service delivery and care matter to, or impact, CYP aged 0–18 years with a LT/LSC?
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What aspects (or elements) of health service delivery and care matter to, or impact, parents of CYP aged 0–18 years with a LT/LSC in their caring role?
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Do the aspects of health service delivery and care that matter differ between CYP and parents?
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Do the aspects of health service delivery and care that matter differ according to age and/or developmental stage of the CYP?
Parent and professional involvement
Eligibility criteria
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concerns CYP up to 18 years of age diagnosed with a LT/LSC as specified in the search strategy;
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study focus is experiences of using a health service(s);
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reports primary research using qualitative methods or mixed methods in which qualitative data is reported separately;
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data gathered directly from CYP and/or parents;
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sample size of at least 5;
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published in English in a peer-reviewed journal;
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published in 2010 or more recently.
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no data collected on experiences of using a healthcare service (e.g. studies of lived experience, evaluations of specific interventions etc.);
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only concerned with one or more of the following types of healthcare: cancer long-term follow-up, ante-natal, maternity, bereavement, ambulance services;
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only concerned with the diagnostic process, adult healthcare and/or the transfer to adult healthcare, or does not report paediatric and adult healthcare experiences separately;
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Masters / Doctoral Dissertations, books, book chapters, conference posters, and unpublished studies;
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studies conducted in non-OECD countries;
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published before 2010.
Information sources and search strategy
Quality appraisal
Study selection
Data extraction and analysis
Data extraction
Main analysis
Theme title: | ||||
Study ID | Verbatim data extract | Review team summaries of data extract | ||
Staff attributes | Staff actions | Organisational features |
• One sentence describing a single construct |
• Simple, unambiguous wording |
• Positively phrased |
• Where possible using words/phrases commonly found in verbatim quotes |
• No colloquialisms |
• Applicable to any hospital healthcare setting or staff group |
• Worded so as not to imply a particular age or developmental stage |
• Non-gendered |
Secondary analysis: mapping the impacts of healthcare experiencess
Results
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 | |
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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 |
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 |
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 |
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 |
Review 1: The hospital healthcare experiences of children and young people with life-threatening or life-shortening conditions
Characteristics of included studies
Elements of health service delivery and care that matter to children and young people
STAFF ATTRIBUTES: Empathetic qualities |
• Staff are kind (n = 10) |
• Staff are encouraging (n = 2) |
STAFF ATTRIBUTES: Professionalism |
• Staff are knowledgeable and skilled in managing the CYP's condition (n = 15) |
• Staff are thorough and careful (n = 7) |
• Staff are calm (n = 3) (PO) |
STAFF ACTIONS: Sharing medical information and decision making |
• Staff offer the CYP a choice as to how much information they are given about their health, treatment & care (n = 8) |
• Staff explain medical information using words that the CYP understands (n = 8) |
• Staff offer the CYP a choice about involvement in discussions about decisions which may affect their health (n = 5) |
• Staff provide medical information in a caring way (n = 3) |
• Staff pace the provision of medical information to meet the CYP’s needs (n = 2) |
STAFF ACTIONS: Delivering clinical and personal care |
• Staff minimise the CYP’s pain and discomfort (n = 12) |
• Staff notice and respond to the CYP's requests for help (n = 9) |
• Staff explain what is going to happen to the CYP (n = 9) |
• Staff consult the CYP about how they want clinical procedures and care tasks to be carried out (n = 7) |
• Staff ensure treatments and medications are provided to the CYP on time (n = 3) |
• Staff notice and respond to the CYP’s non-verbal signals that they need attention (n = 3) (PO) |
• Staff make sure the CYP is clean (n = 3) (PO) |
• Staff are prepared for the CYP's admission to or attendance on the unit/ward (n = 2) (CYPO) |
• Staff look after or help with the CYP’s appearance (n = 2) (PO) |
STAFF ACTIONS: Meeting emotional and social needs |
• Staff take time to get to know the CYP (e.g. their interests, life outside hospital etc.) (n = 25) |
• Staff take the CYP’s whole life into account when arranging medical treatment and care (n = 3) |
• Staff help the CYP to access toys, games, and other sources of entertainment (n = 2) |
• Staff do all they can to ensure the CYP is calm and free from anxiety (n = 1) (PO) |
• Staff ensure that the CYPs has time alone when they want it (n = 1) (CYPO) (Inpatient only) |
ORGANISATIONAL FEATURES: Resources for socialising and play |
• There is a supply of games, toys and other sources of entertainment suitable for the CYP (n = 3) (CYPO) |
• There is access to technology so that the CYP can stay in contact with friends outside hospital (n = 1) (Inpatient only) |
ORGANISATIONAL FEATURES: Physical and sensory environment during inpatient stays |
• The layout of the ward allows the CYP to spend time with other CYP (n = 3) (CYPO) |
• There are facilities so that parents can stay overnight (n = 3) |
• The room/ward is not too noisy (n = 2) |
• The room/ward is a comfortable temperature (n = 1)(CYPO) |
• The beds are comfortable (n = 1) (CYPO) |
• Ward facilities are accessible if using medical equipment or a wheelchair (n = 1) |
• There are single rooms available for the CYP (n = 1) (PO) |
• There is sufficient storage for the CYP’s property (n = 1) (CYPO) |
• The food is appetising (n = 1) |
ORGANISATIONAL FEATURES: Continuity of care |
• Staff are familiar to the CYP (n = 12) |
The impact of health service delivery and care on children and young people
Impact on children and young people | |||||||
---|---|---|---|---|---|---|---|
Domain of health service delivery & care | Emotional wellbeing | Physical wellbeing | Trust in staff | Feeling (un) comfortable with staff | Understanding of situation being faced | Empowerment & control | At ease with (versus regretting) treatment decisions |
STAFF ACTIONS | |||||||
Sharing medical information & decision making | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | |
Delivering clinical & personal care | ✓ | ✓ | ✓ | ✓ | ✓ | ||
Meeting emotional & social needs | ✓ | ✓ | |||||
ORGANISATIONAL FEATURES | |||||||
Resources for socialising & play | ✓ | ||||||
Physical & sensory environment during inpatient stays | ✓ | ✓ | |||||
Continuity of care | ✓ | ✓ |
Review 2: The hospital healthcare experiences of parents of a child/young person with a life-threatening or life-shortening condition
Characteristics of included studies
Elements of health service delivery and care that matter to parents
STAFF ATTRIBUTES: Empathetic qualities |
• Staff are kind (n = 7) |
• Staff are patient (n = 4) |
STAFF ATTRIBUTES: Professionalism |
• Staff are honest (n = 24) |
• Staff are knowledgeable and skilled in managing the CYP’s condition (n = 22) |
• Staff are committed to caring for the child (n = 10) |
• Staff are polite (n = 3) |
• Staff are calm (n = 2) |
• Staff are respectful of cultural and religious beliefs (n = 2) |
STAFF ACTIONS: Sharing medical information and decision making with parents |
• Staff involve the parent to the extent that they want in decisions about treatment and care (n = 26) |
• Staff explain things in ways the parent understands (n = 23) |
• Staff give difficult or bad news sensitively (n = 22) |
• Staff give the parent all the information they want about the child’s condition, treatment and care (n = 18) |
• Staff are willing to answer questions (n = 13) |
• Staff pace the provision of medical information according to the parent’s readiness and capacity for information at the time (n = 12) |
• Staff make themselves available to talk to the parent (n = 12) |
• Staff keep the parent updated on changes in their child’s condition, treatment and care (n = 10) |
• Staff give difficult or bad news in private (n = 4) |
• Staff give the parent time to think about significant decisions (n = 4) |
• Staff check with the parent about discussing medical information in front of their child (n = 3) |
• Staff check with the parent about how much they tell their child (n = 1) |
STAFF ACTIONS: Management of the child’s condition |
• Staff listen to and respect the parent’s views on their child’s condition, treatment and care (n = 24) |
• Staff give the child the same level of care and attention as other children (n = 5) |
• Staff on the ward/unit communicate with each other about the CYP’s treatment and care (n = 4) |
• Staff agree about the CYP’s treatment and care (n = 3) |
• Staff take information and advice from other specialisms into account when deciding on treatment and care (n = 3) |
• Staff take family circumstances into account when arranging treatment and care (n = 2) |
• Staff are willing to be questioned about the child’s treatment and care (n = 1) |
STAFF ACTIONS: Supporting coping |
• Staff acknowledge the impact of the situation on the parent (n = 13) |
• Staff allow the parent to be hopeful (n = 11) |
• Staff take time to talk to and get to know the parent as an individual (n = 10) |
• Staff ask the parent how they are feeling (n = 6) |
• Staff prepare the parent for any changes they might see in their child (n = 6) |
• Staff give the parent information on hospital facilities (e.g. where to get food, washed) (n = 5) (Inpatient only) |
• Staff encourage the parent to take care of themselves (e.g. rest, eat etc.) (n = 4) (Inpatient only) |
• Staff comfort the parent (n = 3) |
• Staff allow the parent to be on the ward as much as is possible (n = 3) (Inpatient only) |
• Staff offer to introduce the parents to other parents on the unit/ward (n = 3) (Inpatient only) |
• Staff talk to the parent about life outside the hospital (n = 2) (Inpatient only) |
STAFF ACTIONS: Supporting parenting |
•Staff support the parent to care for their child as much as they would like to (e.g. changing clothes, washing, feeding etc.) (n = 13) (Inpatient only) |
• Staff make sure the parent can be physically close to and/or hold their child (n = 7) |
• Staff support the parent to take on any medical responsibilities they want to be involved in (n = 6) (Inpatient only) |
• Staff do their best to ensure the parent has as much time with their child as they want (n = 5) (Inpatient only) |
• Staff support the parent with talking to siblings about the child’s health problems (n = 3) |
• Staff ensure the parent has opportunities for privacy with their child (n = 1) (Inpatient only) |
• Staff support the parent with explaining difficult or bad news to their child (n = 1) |
• Staff give the parent information on how the ward/unit operates (e.g. staff roles, shift patterns, visiting hours etc.)(n = 1) |
ORGANISATIONAL FEATURES: Physical environment during inpatient stays |
• There are toilets on the ward for the parent (n = 2) |
• There is a room for the parent to use when they need a break (n = 2) |
• The layout of the room allows the parent to have time alone with their child (n = 2) |
ORGANISATIONAL FEATURES: Continuity and coordination of care |
• Staff are familiar to the parent (n = 18) |
• There is a staff member responsible for coordinating treatment and care (n = 10) |
ORGANISATIONAL FEATURES: Access to additional support |
• Psychological support services are available to the parent (n = 9) |
• Spiritual care services are available to the parent (e.g. chaplains, faith leaders etc.) (n = 4) |
• Information on welfare/benefits advice is available to the parent (n = 1) |
• Interpreters are available to the parent (n = 1) |
The impacts of health service delivery and care on parents
Impact on parents | ||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|
Domain of health service delivery & care | Emotional wellbeing | Ability to parent child in way they want | Trust in staff | Care burden | Empowerment & control | Understanding of situation being faced | Partnership (versus conflict) with staff | Maintenance of usual family routine | At ease with (versus regretting) treatment & care decisions | Satisfaction with treatment & care | Sense of hope | Physical wellbeing |
STAFF ACTIONS | ||||||||||||
Sharing medical information & decision making | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ||
Management of child’s condition | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ||||
Supporting coping | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ||||||
Supporting parenting during inpatient stays | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | |||||
ORGANISATIONAL FEATURES | ||||||||||||
Physical environment during inpatient stays | ✓ | ✓ | ✓ | ✓ | ||||||||
Continuity & coordination of care | ✓ | ✓ | ✓ | ✓ | ||||||||
Access to additional support | ✓ | ✓ | ✓ |