Abstract
Introduction
Infant- and family-centered developmental care can reduce adverse outcomes in both infants and parents. Parents’ experiences of the care and staff treatment remain to be evaluated.
Methods
Parents of infants admitted to neonatal units in Sweden from July 2020 to May 2022 responded to a questionnaire with standardized questions about in-hospital care. Exposures were hospital, gestational age, length of hospital stay, unit level, and bed density. The proportions of parents rating aspects of neonatal care as excellent, defined as five on a Likert scale, and the determinants of excellence were described. The results were benchmarked with ratings in adult somatic care.
Results
A total of 4,475/13,108 (34%) parents responded. The ratings of excellent care varied by question from 65% to 90%. The largest variation in excellence between neonatal units (range 43–80%) was found for “participation and involvement.” The proportion of excellence was significantly lower among parents of extremely preterm infants. Confidence in the staff was lower in parents of extremely preterm infants than in parents of term infants (56% vs. 83%). Longer hospital stays affected the experience of neonatal care adversely, whereas level of care and bed density were overall unrelated to the parental experience. Parents in neonatal care rated the care as excellent to a higher extent than patients cared for in adult medicine.
Conclusion
A majority of parents rated neonatal care in Sweden as excellent. The less frequent ratings of excellence among parents of extremely preterm infants indicate that more could be done to optimize parental involvement and support.
Keywords: Infant- and family-centered care, Newborn infant, Preterm birth, Neonatal unit, Parent-reported experience measures
Introduction
Infant- and family-centered developmental care (IFCDC) [1–3] improves infant and parent outcomes [2, 4–8]. In Sweden, IFCDC has been standard for many years. Parents participate in their infant’s care during the hospital stay. In doing so, they are considered as partners in care. However, several aspects of IFCDC have not been evaluated [9, 10].
Most studies on parental outcomes have used qualitative techniques to describe parental experiences in neonatal care [9, 11–13]. Studies on parent-reported experience measures (PREMs) of neonatal care are few and have focused mainly on parental emotions, although some tools have been developed [14, 15]. A survey of PREMs of neonatal care in England in 2014 revealed variations in unit performance and highlighted areas of improvement [16].
A vision for neonatal care should include that parents experience the care as excellent. The aim of this nationwide study was to evaluate PREMs of excellence in Swedish neonatal care. To provide a better understanding of how services could be improved, we evaluated associations between gestational age (GA), length of hospital stay (LOS), level of care and bed capacity, and parental ratings of excellence. We also benchmarked PREMs of neonatal care with patient-reported experiences of adult somatic care.
Methods
The Parent Questionnaire
All neonatal units (n = 37) have reported data to the Swedish Neonatal Quality Register (SNQ) since 2011 [17]. In 2020, SNQ implemented an option for units to let parents report their experiences. The technical solution for this was available for units reporting prospectively to SNQ, and for parents with a registered cell phone number. A text message was activated within 2 weeks after discharge and sent to one of the parents. The text message contained an invitation to participate in an assessment of the neonatal care (see online suppl. information; for all online suppl. material, see https://doi.org/10.1159/000533900), with a link to a questionnaire. The parents were instructed to reply together; information on which of them responded (one or both) was not collected. As per centralization of neonatal care, infants were sometimes transported between units. The text message was sent after the first and second admissions. Less than 5% of infants had three or more admissions.
The parental questionnaire was presented in Swedish and English. The questionnaire started with three pre-filled questions: the hospital, GA, and LOS. These questions were followed by 15 questions reflecting five domains: (a) “respect and treatment,” (b) “information and knowledge,” (c) “participation and involvement,” (d) “continuity, trust/emotional support, and pain-relief,” and (e) “overall impression.” The questions were not grouped within domains. All questions originated from a national patient questionnaire issued by the Swedish Association of Local Authorities and Regions [18] in order to assess patients’ experiences in a standardized and reproducible manner. The questionnaire has been validated for adult patients but not neonatal care. Each question provided five possible answers on a Likert scale and a sixth option for “non-applicable.”
Study Setting
The study period was from July 2020 to May 2022. There were five local hospitals, level II neonatal units, without access to the text message service, and four units (one university hospital, levels III–IV and three local hospitals, level II) chose to inactivate the text message service.
Exposures
The exposures included (a) GA stratified as 37 gestational weeks or more (term), 32–36 weeks (moderately preterm), 28–31 weeks (very preterm), or 27 weeks or less (extremely preterm [EPT]); (b) LOS defined as less than 1 day, 1–6 days, 7 days to 4 weeks, or more than 4 weeks; (c) level of care defined as admission to a local hospital, level II, or to a university hospital, level III–IV neonatal unit; and d) bed capacity. In Sweden, neonatal beds per 1,000 births vary between the six greater health care regions. To determine any association between bed capacity and parents’ experiences, we compared PREMs in the two regions with the lowest; the Stockholm-Gotland region with 2.6 beds/1,000 births and highest; the Northern region with 6.3 beds/1,000 births, bed capacity in neonatal care [19].
Outcome
The outcome was the proportion of parents rating neonatal care excellent, defined as five on a Likert scale. The choice of this definition was inspired by a comparison with business management [20] that stated that “there is a considerable difference between rating four and five for service,” and that “no business has grown without improving the proportion that rate the service as excellent.”
Comparisons with Adult Patient Experiences
PREMs were compared with a contemporary investigation that used the same questionnaire to a random sample of 79,532 adult patients admitted for somatic care from March 1 to April 30, 2021 [21]. This questionnaire involved one reminder, was translated into eight languages and could be replied to by paper, or online. The results of the adult investigation are openly available on the internet [21].
Statistical Analyses
Data were presented in numbers and proportions with confidence intervals (CI). Two-group differences were determined with χ2 test. To assess associations between multiple exposures and outcome, multiple logistic regression analyses were performed and adjusted odds ratios (aOR) were calculated. The largest groups were set as references: term infant, LOS 1 to 6 days, and admission to local hospital, level II unit. Because the study was primarily exploratory by design, no sample size or power calculations were performed. The CIs were set at 95% and p values <0.05 were considered as indicators of a statistically significant difference. Calculations were performed using Microsoft Excel 365, JavaStat 2022, StatPages, and StataIC version 15.1.
Results
The response rate was 4,475/13,108 (34%), of which 2,648 (59%) had infants born at term and 3,212/4,475 (72%) had assessed local hospitals, level II units (n = 21), online supplementary Figure 1. Of the parents who opened the web link, 89% responded. All questions were responded by all responders. There was no significant difference in the distribution of GA or level of care between responders and families discharged, online supplementary Table 1. The response rate for patient-reported experiences in adult somatic in-hospital care was 49% [21]. The number of PREMs rated as “non-applicable” varied by question from less than 1% for eight questions to 42% for the question “If your baby experienced pain during your stay in the neonatal unit, did she/he quickly receive help with pain relief?”
Excellence by Domains and Questions
The proportions of excellent experience varied by question from 65% to 90%. The highest proportions were seen for PREMs referring to overall impressions and treatment of the infant with compassion and care, whereas involvement in decision-making and information-issues received the lowest proportions of experience of excellence (Table 1).
Table 1.
Parental experience of excellence in neonatal care and patient experience of adult somatic care
| Domains and questions | Experience of excellence in neonatal care, inter-hospital range, % | Experience of excellence in neonatal care, n/N (%) | Experience of excellence in adult somatic care, n/N (%) | p value for different experience in neonatal versus adult care |
|---|---|---|---|---|
| Respect and treatment | ||||
| Q1. Did the staff treat your babya with compassion and care? | 80–95 | 3,959/4,470 (88.6) | 30,295/39,480 (76.7) | <0.001 |
| Q2. Were youb treated with respect and dignity? | 65–89 | 3,590/4,467 (80.4) | 30,658/36,190 (84.7) | <0.001 |
| Q3. When the staff talked to each other about your babya, were you involved in the conversation? | 54–75 | 2,722/4,117 (66.1) | 13,133/27,406 (47.9) | <0.001 |
| Information and knowledge | ||||
| Q4. Did you receive enough information about your baby’sa care/treatment? | 53–79 | 2,992/4,466 (67.0) | 24,294/38,588 (63.0) | <0.001 |
| Q5. Did you receive sufficient information about where to turn after discharge from the hospital (if you needed help or had further questions)? | 61–84 | 2,997/4,169 (71.9) | 23,391/36,879 (63.4) | <0.001 |
| Q6. Did the doctor/nurses (the staff) explain the treatment in a way that youb understood? | 55–84 | 3,360/4,450 (75.5) | 23,853/36,561 (65.2) | <0.001 |
| Participation and involvement | ||||
| Q7. Did the staff involve you in the decisions regarding your baby’sa care or treatment? | 43–78 | 2,755/4,270 (64.5) | 23,149/36,350 (63.7) | 0.28 |
| Q8. Did the staff take into account your own experiences and viewsb on your baby’sa health condition? | 49–83 | 2,867/3,967 (72.3) | 23,449/34,670 (67.6) | <0.001 |
| Q9. Were you involved in the decisions regarding your baby’sa care and treatment to the extent you wanted? | 43–80 | 2,995/4,196 (71.4) | 20,855/34,004 (61.3) | <0.001 |
| Continuity, trust/emotional support, and pain- relief | ||||
| Q10. Before youb were discharged from hospital, was a decision made on the next step in the baby’s (your) care or treatment? | 61–85 | 2,922/3,858 (75.7) | 23,117/34,809 (66.4) | <0.001 |
| Q11. Did you have confidence in the staff caring for your baby? | 66–89 | 3,560/4,466 (79.7) | NA | |
| Q12. If your baby experience pain during your stay in the neonatal unit, did she/he quickly receive help with pain relief? | 62–95 | 2,133/2,596 (82.2) | NA | |
| Overall impression | ||||
| Q13. Do you think that your baby’sa current needs for care and treatment has been met? | 84–98 | 4,006/4,460 (89.8) | 28,313/38,550 (73.4) | <0.001 |
| Q14. How did you experience the stay in the neonatal unit as a whole? | 64–82 | 3,227/4,461 (72.3) | NA | |
| Q15. Would youb recommend this unit/hospital to anyone else in your situation? | 73–93 | 3,889/4,444 (87.5) | 29,133/38,719 (75.2) | <0.001 |
Excellence in neonatal care in 2020–2022 and in adult somatic care in 2021. The numbers represent proportions of parents that rated their in-hospital experience as 5 on a Likert scale from 1 to 5, where 1 = “no, not at all” and 5 = “yes, completely agree.” Varying denominators reflect varying numbers of responses; 6 = “non-applicable.”
n = number responding “5.” N = number responding “1–5.”
a“Your baby” replaced “you” in the questionnaire replied by patients in adult somatic, hospital care.
b“You” refers to the parent in the neonatal questionnaire and to the patient in the adult questionnaire.
Variation between Neonatal Units
The lowest proportion of excellent experience for any neonatal unit was 43%, and the corresponding highest proportion was 98%. The largest variation (43–80%) between neonatal units was seen for the domain “participation and involvement.” The question “Do you think that your baby’s current needs for care and treatment has been met?” showed the overall highest proportion of experienced excellence and the smallest variation between neonatal units (84–98%) (Table 1).
Gestational Age
The proportion that experienced excellent care was significantly lower among parents of EPT infants within the domains “respect and treatment,” “continuity, trust/emotional support, pain-relief,” and “overall impression.” The lowest proportions of excellent experience for parents of EPT compared to parents of term infants related to recommending the unit: 73% in EPT versus 89% in term infants; aOR = 0.32 (95% CI = 0.21–0.49) and confidence in the staff: 56% in EPT vs. 83% in term infants; aOR = 0.33 (95% CI = 0.23–0.47).
In contrast, parents of moderately preterm infants rated the care excellent in significantly higher proportions than parents of term infants within the domains “information and knowledge” and “participation and involvement.” Parents of moderately preterm infants also experienced the information about where to turn after discharge from neonatal care as excellent in 78% versus 69% of parents to term infants; aOR = 1.6 (95% CI = 1.2–2.1) (Tables 2–6).
Table 2.
Parental experience of excellence in neonatal care: domain A (“respect and treatment”)
| N | Q1. Did the staff treat your baby with compassion and care? | Q2. Were you treated with respect and dignity? | Q3. When the staff talked to each other about your baby, were you involved in the conversation? | ||||
|---|---|---|---|---|---|---|---|
| n1/n2 (%) | aOR (95% CI) | n1/n2 (%) | aOR (95% CI) | n1/n2 (%) | aOR (95% CI) | ||
| GA strata | |||||||
| a. ≥37 weeks | 2,648 | 2,393/2,646 (90.4) | Ref | 2,211/2,645 (83.6) | Ref | 1,587/2,376 (66.8) | Ref |
| b. 32–36 weeks | 1,330 | 1,173/1,328 (88.3) | 0.90 (0.72–1.1) | 1,041/1,327 (78.4) | 0.80 (0.67–0.96) | 842/1,249 (67.4) | 1.1 (0.93–1.3) |
| c. 28–31 weeks | 306 | 251/305 (82.3) | 0.65 (0.45–0.94) | 219/305 (71.8) | 0.65 (0.48–0.89) | 196/302 (64.9) | 1.1 (0.80–1.4) |
| d. ≤27 weeks | 191 | 142/191 (74.3) | 0.42 (0.28–0.64) | 119/190 (62.6) | 0.45 (0.31–0.64) | 97/190 (51.1) | 0.63 (0.45–0.87) |
| Length of stay | |||||||
| a. <1 day | 354 | 326/353 (92.4) | 1.2 (0.79–1.8) | 319/353 (90.4) | 1.8 (1.3–2.6) | 185/269 (68.8) | 1.0 (0.79–1.4) |
| b. 1–6 days | 2,159 | 1,956/2,157 (90.6) | Ref | 1,798/2,156 (83.4) | Ref | 1,326/1,954 (67.9) | Ref |
| c. 7 days to 4 weeks | 1,609 | 1,405/1,607 (87.4) | 0.78 (0.63–0.98) | 1,240/1,605 (77.3) | 0.74 (0.63–0.89) | 1,015/1,543 (65.8) | 0.91 (0.79–1.4) |
| d. >4 weeks | 353 | 272/353 (77.1) | 0.49 (0.33–0.74) | 233/353 (66.0) | 0.55 (0.39–0.78) | 196/351 (55.8) | 0.60 (0.44–0.83) |
| Level of care | |||||||
| a. University hospital, levels III–IV (n = 7) | 1,263 | 1,105/1,262 (87.6) | 0.94 (0.76–1.1) | 1,002/1,261 (79.5) | 0.99 (0.84–1.2) | 745/1,162 (64.1) | 0.90 (0.78–1.0) |
| b. Local hospital, level II (n = 21) | 3,212 | 2,854/3,208 (89.0) | Ref | 2,588/3,206 (80.7) | Ref | 1,977/2,955 (66.9) | Ref |
Numbers and proportions of parents that rated their in-hospital experience 5 on a Likert scale from 1 to 5, where 1 = “no, not at all” and 5 = “yes, completely agree.” Varying denominators reflect varying numbers of responses; 6 = “non-applicable.”
n1 = number responding 5. n2 = number responding 1–5.
aOR, adjusted odds ratios including the risk factors of GA, length of stay, and level of care; CI, confidence interval; GA, gestational age.
Table 6.
Parental experience of excellence in neonatal care: domain E (“overall impression”)
| N | Q13. Do you think that your baby’s current needs for care and treatment has been met? | Q14. How did you experience the stay in the neonatal unit as a whole? | Q15. Would you recommend this neonatal unit to anyone else in your situation? | ||||
|---|---|---|---|---|---|---|---|
| n1/n2 (%) | aOR (95% CI) | n1/n2 (%) | aOR (95% CI) | n1/n2 (%) | aOR (95% CI) | ||
| GA strata | |||||||
| a. ≥37 weeks | 2,648 | 2,389/2,639 (90.5) | Ref | 1,964/2,639 (74.4) | Ref | 2,344/2,632 (89.1) | Ref |
| b. 32–36 weeks | 1,330 | 1,199/1,326 (90.4) | 1.1 (0.86–1.4) | 952/1,327 (71.7) | 0.93 (0.80–1.1) | 1,149/1,316 (87.3) | 0.84 (0.68–1.0) |
| c. 28–31 weeks | 306 | 270/304 (88.9) | 1.1 (0.70–1.6) | 210/306 (68.6) | 0.88 (0.66–1.2) | 256/305 (83.9) | 0.63 (0.43–0.91) |
| d. ≤27 weeks | 191 | 148/191 (77.5) | 0.50 (0.32–0.77) | 101/189 (53.4) | 0.48 (0.34–0.67) | 140/191 (73.3) | 0.32 (0.21–0.49) |
| Length of stay | |||||||
| a. <1 day | 354 | 336/353 (95.2) | 2.0 (1.2–3.3) | 286/353 (81.0) | 1.5 (1.1–1.9) | 324/351 (92.3) | 1.6 (1.0–2.3) |
| b. 1–6 days | 2,159 | 1,956/2,152 (90.9) | Ref | 1,598/2,152 (74.3) | Ref | 1,889/2,143 (88.1) | Ref |
| c. 7 days to 4 weeks | 1,609 | 1,425/1,604 (88.8) | 0.81 (0.64–1.0) | 1,138/1,604 (70.9) | 0.88 (0.75–1.0) | 1,397/1,598 (87.4) | 1.1 (0.86–1.3) |
| d. >4 weeks | 353 | 289/351 (82.3) | 0.50 (0.32–0.78) | 205/352 (58.2) | 0.56 (0.41–0.77) | 279/352 (79.3) | 0.85 (0.56–1.3) |
| Level of care | |||||||
| a. University hospital, levels III–IV (n = 7) | 1,263 | 1,114/1,260 (88.4) | 0.85 (0.68–1.0) | 898/1,257 (71.4) | 0.98 (0.84–1.1) | 1,100/1,256 (87.6) | 1.1 (0.88–1.3) |
| b. Local hospital, level II (n = 21) | 3,212 | 2,892/3,200 (90.4) | Ref | 2,329/3,204 (72.7) | Ref | 2,789/3,188 (87.5) | Ref |
Numbers and proportions of parents that rated their in-hospital experience 5 on a Likert scale from 1 to 5, where 1 = “no, not at all” and 5 = “yes, completely agree.” Varying denominators reflect varying numbers of responses; 6 = “non-applicable.”
n1 = number responding 5. n2 = number responding 1–5.
aOR, adjusted odds ratios including the risk factors of GA, length of stay, and level of care; CI, confidence interval; GA, gestational age.
Table 5.
Parental experience of excellence in neonatal care: domain D (“continuity, trust/emotional support, pain-relief”)
| N | eQ10. Before you were discharged from hospital, was a decision made on the next step in the baby’s care or treatment? | Q11. Did you have confidence in the staff caring for your baby? | fQ12. If your baby experience pain during your stay in the neonatal unit, did she/he quickly receive help with pain relief? | ||||
|---|---|---|---|---|---|---|---|
| n1/n2 (%) | aOR (95% CI) | n1/n2 (%) | aOR (95% CI) | n1/n2 (%) | aOR (95% CI) | ||
| GA strata | |||||||
| a. ≥37 weeks | 2,648 | 1,729/2,295 (75.3) | Ref | 2,201/2,641 (83.3) | Ref | 1,279/1,516 (84.4) | Ref |
| b. 32–36 weeks | 1,330 | 908/1,175 (77.3) | 1.2 (1.0–1.5) | 1,047/1,329 (78.8) | 0.81 (0.68–0.97) | 596/718 (83.0) | 1.0 (0.79–1.3) |
| c. 28–31 weeks | 306 | 197/259 (76.1) | 1.3 (0.92–1.8) | 206/306 (67.3) | 0.51 (0.38–0.69) | 164/212 (77.4) | 0.82 (0.55–1.2) |
| d. ≤27 weeks | 191 | 88/129 (68.2) | 0.91 (0.59–1.4) | 106/190 (55.8) | 0.33 (0.23–0.47) | 94/150 (62.7) | 0.42 (0.28–0.65) |
| Length of stay | |||||||
| a. <1 day | 354 | 197/266 (74.1) | 0.85 (0.63–1.1) | 314/353 (89.0) | 1.6 (1.1–2.3) | 95/116 (81.9) | 0.75 (0.45–1.2) |
| b. 1–6 days | 2,159 | 1,450/1,875 (77.3) | Ref | 1,782/2,152 (82.3) | Ref | 1,000/1,165 (85.8) | Ref |
| c. 7 days to 4 weeks | 1,609 | 1,075/1,433 (75.0) | 0.84 (0.70–0.99) | 1,252/1,608 (77.9) | 0.83 (0.70–0.99) | 839/1,032 (81.3) | 0.72 (0.57–0.90) |
| d. >4 weeks | 353 | 200/284 (70.4) | 0.57 (0.39–0.82) | 212/353 (60.1) | 0.51 (0.36–0.71) | 199/283 (70.3) | 0.39 (0.29–0.53) |
| Level of care | |||||||
| a. University hospital, levels III–IV (n = 7) | 1,263 | 815/1,089 (74.8) | 0.93 (0.79–1.1) | 980/1,261 (77.7) | 0.91 (0.78–1.1) | 661/817 (80.9) | 0.94 (0.76–1.2) |
| b. Local hospital, level II (n = 21) | 3,212 | 2,107/2,769 (76.1) | Ref | 2,580/3,205 (80.5) | Ref | 1,472/1,779 (82.7) | Ref |
Numbers and proportions of parents that rated their in-hospital experience 5 on a Likert scale from 1 to 5, where 1 = “no, not at all” and 5 = “yes, completely agree.” Varying denominators reflect varying numbers of responses; 6 = “non-applicable.”
n1 = number responding 5. n2 = number responding 1–5.
aOR, adjusted odds ratios including the risk factors of GA, length of stay, and level of care; CI, confidence interval; GA, gestational age.
Assessed “non-applicable” by e617/4,475 (13.8%) and by f1,879/4,475 (42.0%) of the parents.
Length of Stay
The proportion of parents rating the care as excellent was, independent of GA, significantly lower for those with LOS longer than 4 weeks. The largest differences in proportions were related to confidence in the staff: 60% in parents with LOS longer than 4 weeks versus 82% in the group with LOS one to 6 days; aOR = 0.51 (95% CI = 0.36–0.71) and the overall experience of neonatal care: 58% versus 74%; aOR = 0.56 (95% CI = 0.41–0.77) (Tables 2–6).
Level of Care
There were two PREMs with significantly lower proportions of parents rating the care as excellent in university hospitals, levels III–IV, than in local hospitals, level II units: information about where to turn after hospital discharge: 69% in levels III–IV versus 73% in level II units; aOR = 0.83 (95% CI = 0.72–0.97), and involvement in decisions regarding the care: 62% versus 66%; aOR = 0.83 (95% CI = 0.72–0.95) (Tables 3 and 4).
Table 3.
Parental experience of excellence in neonatal care: domain B (“information and knowledge”)
| N | Q4. Did you receive enough information about your baby’s care/treatment? | aQ5. Did you receive sufficient information about where to turn after discharge from neonatal care (if you needed help or had further questions)? | Q6. Did the doctor/nurses (the staff) explain the treatment in a way that you understood? | |||||
|---|---|---|---|---|---|---|---|---|
| n1/n2 (%) | aOR (95% CI) | n1/n2 (%) | aOR (95% CI) | n1/n2 (%) | aOR (95% CI) | |||
| GA strata | ||||||||
| a. ≥37 weeks | 2,648 | 1,762/2,643 (66.7) | Ref | 1,752/2,541 (68.9) | Ref | 1,978/2,631 (75.2) | Ref | |
| b. 32–36 weeks | 1,330 | 913/1,328 (68.8) | 1.2 (1.0–1.4) | 969/1,248 (77.6) | 1.6 (1.3–1.9) | 1,024/1,326 (77.2) | 1.2 (1.0–1.5) | |
| c. 28–31 weeks | 306 | 203/305 (66.6) | 1.2 (0.89–1.6) | 198/268 (73.9) | 1.4 (1.0–1.9) | 228/304 (75.0) | 1.2 (0.91–1.7) | |
| d. ≤27 weeks | 191 | 114/190 (60.0) | 0.95 (0.68–1.3) | 78/122 (63.9) | 0.89 (0.59–1.3) | 130/189 (68.8) | 0.97 (0.67–1.4) | |
| Length of stay | ||||||||
| a. <1 day | 354 | 270/353 (76.5) | 1.6 (1.2–2.1) | 209/317 (65.9) | 0.79 (0.61–1.0) | 279/349 (79.9) | 1.2 (0.93–1.6) | |
| b. 1–6 days | 2,159 | 1,456/2,154 (67.6) | Ref | 1,482/2,055 (72.1) | Ref | 1,648/2,146 (76.8) | Ref | |
| c. 7 days to 4 weeks | 1,609 | 1,056/1,606 (65.8) | 0.85 (0.74–0.99) | 1,104/1,499 (73.6) | 1.0 (0.87–1.2) | 1,190/1,605 (74.1) | 0.81 (0.69–0.95) | |
| d. >4 weeks | 353 | 210/353 (59.5) | 0.53 (0.38–0.72) | 202/288 (70.1) | 0.64 (0.45–0.92) | 243/350 (69.4) | 0.53 (0.38–0.74) | |
| Level of care | ||||||||
| a. University hospital, levels III–IV (n = 7) | 1,263 | 816/1,259 (64.8) | 0.87 (0.76–1.0) | 782/1,131 (69.1) | 0.83 (0.72–0.97) | 925/1,250 (74.0) | 0.90 (0.77–1.0) | |
| b. Local hospital, level II (n = 21) | 3,212 | 2,176/3,207 (67.9) | Ref | 2,215/3,048 (72.7) | Ref | 2,435/3,200 (76.1) | Ref | |
Numbers and proportions of parents that rated their in-hospital experience 5 on a Likert scale from 1 to 5, where 1 = “no, not at all” and 5 = “yes, completely agree.” Varying denominators reflect varying numbers of responses; 6 = “non-applicable.”
n1 = number responding 5. n2 = number responding 1–5.
aOR, adjusted odds ratios including the risk factors of GA, length of stay, and level of care; CI, confidence interval; GA, gestational age.
Assessed “non-applicable” by a296/4,475 (6.6%) of the parents.
Table 4.
Parental experience of excellence in neonatal care: domain C (“participation and involvement”)
| N | bQ7. Did the staff involve you in the decisions regarding your baby's care or treatment? | cQ8. Did the staff take into account your own experiences and views on your baby's health condition? | dQ9. Were you involved in the decisions regarding your baby’s care and treatment to the extent you wanted? | ||||
|---|---|---|---|---|---|---|---|
| n1/n2 (%) | aOR (95% CI) | aOR (95% CI) | n1/n2 (%) | aOR (95% CI) | |||
| GA strata | |||||||
| a. ≥37 weeks | 2,648 | 1,575/2,483 (63.4) | Ref | 1,652/2,263 (73.0) | Ref | 1,760/2,422 (72.7) | Ref |
| b. 32–36 weeks | 1,330 | 881/1,298 (67.9) | 1.3 (1.1–1.5) | 904/1,223 (73.9) | 1.1 (0.95–1.3) | 915/1,288 (71.0) | 1.0 (0.89–1.2) |
| c. 28–31 weeks | 306 | 196/303 (64.7) | 1.3 (0.96–1.7) | 205/294 (69.4) | 1.0 (0.76–1.4) | 210/300 (70.0) | 1.2 (0.88–1.6) |
| d. ≤27 weeks | 191 | 103/186 (55.4) | 0.93 (0.66–1.3) | 106/187 (56.7) | 0.61 (0.43–0.86) | 110/186 (59.1) | 0.79 (0.56–1.1) |
| Length of stay | |||||||
| a. <1 day | 354 | 206/304 (67.8) | 1.1 (0.86–1.4) | 197/241 (81.7) | 1.6 (1.1–2.2) | 216/277 (78.0) | 1.2 (0.91–1.7) |
| b. 1–6 days | 2,159 | 1,352/2,055 (65.8) | Ref | 1,387/1,877 (73.9) | Ref | 1,497/2,014 (74.3) | Ref |
| c. 7 days to 4 weeks | 1,609 | 987/1,561 (63.2) | 0.84 (0.73–0.98) | 1,069/1,501 (71.2) | 0.87 (0.74–1.0) | 1,068/1,557 (68.6) | 0.74 (0.63–0.86) |
| d. >4 weeks | 353 | 210/350 (60.0) | 0.63 (0.46–0.86) | 214/348 (61.5) | 0.55 (0.39–0.76) | 214/348 (61.5) | 0.51 (0.37–0.70) |
| Level of care | |||||||
| a. University hospital, levels III–IV (n = 7) | 1,263 | 736/1,197 (61.5) | 0.83 (0.72–0.95) | 778/1,107 (70.3) | 0.89 (0.77–1.0) | 818/1,180 (69.3) | 0.89 (0.76–1.0) |
| b. Local hospital, level II (n = 21) | 3,212 | 2,019/3,073 (65.7) | Ref | 2,089/2,860 (73.0) | Ref | 2,177/3,016 (72.2) | Ref |
Numbers and proportions of parents that rated their in-hospital experience 5 on a Likert scale from 1 to 5, where 1 = “no, not at all” and 5 = “yes, completely agree.” Varying denominators reflect varying numbers of responses; 6 = “non-applicable.”
n1 = number responding 5. n2 = number responding 1–5.
aOR, adjusted odds ratios including the risk factors of GA, length of stay, and level of care; CI, confidence interval; GA, gestational age.
Assessed “non-applicable” by b205/4,475 (4.6%); by c508/4,475 (11.4%); and by d279/4,475 (6.2%) of the parents.
Bed Capacity
There were 1,742 responders representing the two regions with the lowest and highest bed capacity. There were no statistically significant differences between these groups in response rates: 32% versus 31%. In the low-capacity region, ratings under the domain “information and knowledge,” reached significantly higher levels than in the high-capacity region. There were no other significant differences in ratings of excellence between the two regions (online supplementary Table 2).
Comparing Neonatal and Adult Services
Twelve questions in the neonatal questionnaire had a corresponding question in the adult questionnaire. In ten of these questions, the experience of excellence was significantly more frequent for neonatal care. However, one question, “Were you treated with respect and dignity?” received a lower proportion of experience of excellence among parents (80%) than in adult patients (85%) (Table 1). All ratings are presented in online supplementary Table 3.
Discussion
Neonatal care in Sweden was found to be overall excellent, in this study describing self-reported parental experiences. However, the study revealed areas of improvement related to information and knowledge, as well as participation and involvement. In addition, EPT birth and long LOS were identified as risk factors for poorer parental experience of care, whereas unit level and bed capacity appeared to have little influence on the PREMs.
Our results revealed similar patterns as in the English study on parental experiences of neonatal care [16]. Differently from the reports by Latour et al. [16] and Dicky et al. [15], our study describes parents’ perceptions of care rather than their emotions related to participating in the care-giving of their infant in a neonatal unit. Key areas of improvement included the need for parents to receive information about their infant’s condition, to be involved in the care, and to be treated with respect and dignity.
Low GA and long LOS, but not the level of care, correlated to a lower proportion of parents that experienced the excellent care, especially in the domains “respect and treatment” and “continuity, trust/emotional support, and pain-relief.” This suggests that regional as well as county hospitals practice IFCDC but that the parental support and involvement need to be fine-tuned depending on the GA and LOS. Some parents spend weeks to months in the neonatal unit. This poses a stress to the individual parents. Earlier research has described how the focus of both the staff and the parents tends to be on the infant’s needs, and hence the needs of the parent may become overshadowed [13, 22, 23]. A limited experience for some hours after birth is likely to be different from that of longer stays in the neonatal unit. Responders with admissions lasting less than 1 day (n = 354 of which 92% were parents of term infants) may have had less interaction with the neonatal care than with, for example, obstetric or primary health care in the first 2 weeks after birth. On the other hand, parents of moderately preterm infants appeared to have received excellent support to a higher extent than parents of both term and EPT infants.
One in five parents of infants in pain did not experience excellent management regarding timely pain relief. Pain in newborn infants may be difficult to assess and manage effectively. Parents themselves are a valuable but often overlooked resource in neonatal pain management [24]. The parental experiences reported herein underline the importance of a trustful collaboration with parents.
The proportions of parental experience of excellence in neonatal care, compared to that of the patient receiving adult somatic care, were found to be higher in most questions, confirming that involvement of and communication with parents have been priorities in neonatal care. The proportions were lower in neonatal care for the question, “Were you treated with respect and dignity?” Treatment of parents should therefore be a subject for future quality improvement. One way forward could be to implement tools for interaction between parents and staff in neonatal care [25].
There was no overall significant correlation between level of care or bed capacity and parental experience of excellence. This was an unexpected finding given the large difference in bed capacity between the two regions [26].
Strengths and Limitations
A strength of this study was that the SNQ register is population-based. The use of the standardized questions in the national patient questionnaire made benchmarking with adult medicine possible. Defining excellence as five on a Likert scale and not as four and five contributed to increased variability and that more nuances in responses were exposed.
The response rate was a limitation. However, it was in line with that of the English study (38%), in which parents were sent not only the questionnaire but also a multiple language sheet offering help with the survey and two reminders [16]. In addition, we found no significant differences in the distribution of GA or level of care between responders and all families discharged, indicating internal validity of the sample.
Other limitations included the fact that the anonymous approach made linkage to infant characteristics impossible. Moreover, all Swedish neonatal units practice IFCDC. Investigations of correlations between parental experiences and care philosophy would need linkage to information on unit policies and structure which are unavailable in the SNQ register. The questionnaire was only available in Swedish and English and consequently the results may not be applicable for the non-Swedish, non-English speaking population. Given the liberal conditions for parental leave in Sweden, as well as the design of neonatal units enabling parents to be with their infants during the hospital stay, the results may not be valid in other countries.
Implications for Care
The philosophy of neonatal care in Sweden is infant- and family centered. The aim is to support the birth of the family, i.e., the environment in which the infant will grow and develop. In IFCDC, parents and health professionals partner, and the parent is the infant’s primary provider of care. Our findings suggest that improvement is needed in the domains “information and knowledge” and “participation and involvement.” Implementation of guidelines such as the standard of care developed by the European Federation for the Care of the Newborn Infant [3] may be one way forward. Dissemination of knowledge about parental experiences and staff engagement are other important components of quality improvement. To facilitate such actions, the SNQ register’s continuous collection of assessments is important [27].
Conclusion
Most aspects of neonatal care in Sweden were experienced as excellent by parents. Better awareness of domains experienced as suboptimal may aid health care professionals to improve their interaction with parents.
Statement of Ethics
Ethical approval was not applied for this study in accordance with national guidelines. The questionnaires were anonymous, no personal data were collected. Written informed consent to participate was not obtained but inferred by completion of the questionnaire. The above was in accordance with national guidelines.
Conflict of Interest Statement
The authors have no conflicts of interest to declare.
Funding Sources
The authors received no specific funding for this study.
Author Contributions
M.N. conceptualized the study. A.L. and M.N. performed the analyses and wrote the manuscript. Y.T.B., K.J., and S.L. critically revised the manuscript. All authors approved of the submitted manuscript.
Funding Statement
The authors received no specific funding for this study.
Data Availability Statement
The individual data will not be publicly available due to the study design. Further inquiries can be directed to the corresponding author.
Supplementary Material
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
The individual data will not be publicly available due to the study design. Further inquiries can be directed to the corresponding author.