Quality of care of the preterm infant—the parent and nurse perspective

Quality of care of the preterm infant*/the parent and nurseperspective

KARIN JACKSON1, BRITT-MARIE TERNESTEDT1,2, ANDERS MAGNUSON3 &

JENS SCHOLLIN4

1Department of Caring Sciences, Orebro University, Orebro, Sweden, 2Department of Health Care Sciences, Ersta Skondal

University College, Stockholm, Sweden, 3Clinical Research Centre, Orebro University Hospital, Orebro, Sweden, and4Department of Paediatrics, Orebro University Hospital, Orebro, Sweden

AbstractAim: To study the subjective opinions about what is important in care at neonatal units and child health centres (CHCs)for premature newborns, and to compare these opinions with the care actually given. Subjects: 21 mothers, 20 fathersand 15 nurses at the neonatal unit, and 21 mothers, 14 fathers and 18 nurses at CHCs. Methods: A questionnaire on Qualityof Care from the Patient’s Perspective was used. It contained three dimensions: identity-oriented approach, medical-technical competence and socio-cultural atmosphere. Each dimension was evaluated in terms of subjective importance andperceived reality of given care. Results: In general, subjective importance was rated higher than perceived reality both forneonatal care and care at CHCs for the dimensions identity-oriented approach and medical-technical competence.However, higher ratings were given to neonatal care compared to CHCs for medical-technical competence. High-riskdiagnoses and very low gestational age in the newborn did not affect the answers. Mothers rated medical-technicalcompetence higher than nurses for neonatal care. Mothers and nurses rated identity-oriented approach higher than fathersfor CHCs.

Conclusion: Although both neonatal care and care at CHCs were highly rated, improvements can be made to fulfilthe expectations of parents and nurses. Neonatal units seem to be more efficient in taking care of the special needsof these newborns compared to CHCs. The need for an optimal identity-oriented approach, medical-technicalcompetence and socio-cultural atmosphere could strengthen the possibilities of parents to be confident in their parentalrole.

Key Words: Health care, neonatal care, preterm infant, quality of care

Introduction

The birth of a preterm infant is mostly unexpected,

giving parents the feeling of shock. The infant is often

treated for a long period at the neonatal unit; the

length of time depending on the degree of prematurity

and severity of illness [1,2]. Concern for the infant’s

health and survival as well as the impact of medical

care and high technology at the ward are factors that

deeply affect the parents [3,4]. Feelings of stress can

often be experienced for a long time after the

discharge of the newborn from the hospital [5,6],

with difficulties in adapting to a normal parent role

[7]. For obvious reasons, both from a medical and

social point of view, it is important to offer the best

possible medical and nursing care as well as social

support to the family, both at the neonatal unit and at

child health centres (CHCs) after discharge from

hospital [8,9].

The improved results of perinatal care often mean

long periods of hospital stay [10]. As the family is

often affected for a long period of time after discharge

and also seeks medical advice to a greater extent after

leaving the hospital [11,12], it is important to evaluate

the care given to this group both in the neonatal ward

and at CHCs [9]. Different methods have been used

to assess neonatal care. A traditional way is to

examine the short- or long-term outcome with regard

to survival or handicap. Other ways, however, are to

study the existence and extent of, for example, results

of intervention with family-centred care, the Newborn

Individualised Developmental Care and Assessment

(Received 29 March 2005; revised 22 July 2005; accepted 25 August 2005)

ISSN 0803-5253 print/ISSN 1651-2227 online # 2006 Taylor & Francis

DOI: 10.1080/08035250500323749

Correspondence: Karin Jackson, Department of Caring Sciences, Orebro University, SE-701 82 Orebro, Sweden. Tel: �/46 19 303663. Fax: �/46 19 303639.

E-mail: [email protected]

Acta Pædiatrica, 2006; 95: 29�/37

Program (NIDCAP), and the occurrence of early

breastfeeding [13�/15].

CHCs in Sweden have a long tradition of providing

health services to all children up to 6 y of age and offer

a national health programme including health surveil-

lance, vaccinations and individual support for parents

[16,17]. The services provided by the CHCs have also

been evaluated from different perspectives [18,19].

The quality of childcare can thus be judged in several

ways. The opinion of patients and caregivers about

what is of importance in connection with care can be

seen as one aspect of quality [20]. The satisfaction of

patients and parents has thus been used increasingly

as an indicator of the quality of care. One specific

method that has been employed is the questionnaire

Quality of Care from the Patient’s Perspective (QPP)

[21], which concerns both the importance of the care

provided and, in the view of the individual, what has

actually been perceived.

This study was undertaken to analyse the subjective

opinions of parents and nurses about what is im-

portant in neonatal care and care at CHCs, and the

care actually given in the neonatal ward and at CHCs.

Material and methods

The study was performed at the neonatal unit, a level

III unit, at Orebro University Hospital. In the county

of Orebro, the catchment area for the neonatal unit,

there are 28 CHCs. During the period April 1999 to

February 2000, parents with a newborn child born at

a gestational age of 5/34 wk were given written and

verbal information about the project and were asked if

they would participate. This information and request

were presented to the parents and also to nurses in

charge of the individual child between 1 and 2 wk

after the infant’s birth. Nurses at the CHCs were

asked about participation when the infant was dis-

charged from the neonatal unit. Questionnaires were

distributed at the neonatal unit when the infants were

2 and 4 mo old and at the CHCs when they were 18

mo old. The Research Ethical Committee at the

hospital approved the project.

Criteria for inclusion of the children were that they

should not have any congenital defect and that their

parents should speak Swedish and live in the county of

Orebro. Twenty sets of parents and one single mother,

with a total of 28 infants (15 singletons, five sets of

twins and one set of triplets), were included. The

participating nurses at the neonatal unit were the

contact nurses for each child’s parents. Six parents did

not have a contact nurse. Included nurses at the

CHCs comprised nurses in charge of the care of the

infant and the family. In all, there were 21 mothers, 20

fathers and 15 nurses who received questionnaires at

the neonatal unit, and 21 mothers, 14 fathers and 18

nurses at the CHCs. Eleven of the mothers and 11 of

the fathers were first-time parents. Five mothers gave

birth by normal delivery, one by VE and 15 by

caesarean section. The mean birthweight of the

children was 1595 (range 660�/2480) g, and the

mean gestational age at birth was 30.9 (25�/34)

wk. The mean length of hospitalization was 49.1

(14�/121) d. Three newborns needed mechanical

ventilation and six continuous positive airway pres-

sure. The age of the mothers was 33.4 (26�/44) y and

that of the fathers 34.4 (29�/40) y.

To further analyse gestational age impact on quality

of care, gestational age was categorized into the

groups 25�/30 wk or 31�/34 wk. The first category

included 11 children, 8 mothers and 7 fathers and the

second 17 children, 13 mothers and 13 fathers.

We also categorized children with regard to high-

risk diagnoses in the neonatal period: gestational

week B/28, respiratory distress syndrome, sepsis

and cerebral haemorrhage. Children having at least

one of these diagnoses (16 children, 11 mothers

and 10 fathers) were compared to children having

none of these diagnoses (12 children, 10 mothers and

10 fathers).

Quality of Care from the Patient’s Perspective

questionnaire

Data were collected from the questionnaire Quality of

Care from the Patient’s Perspective (QPP) [21]. This

questionnaire was developed from a model of quality

of care from the patients’ perspective [22], and

has previously been tested for validity and reliability

[18]. It reflects the structure of the care organization

as represented by person-related, physical, adminis-

trative and environmental qualities, and the patients’

preferences from a human and rational aspect.

Within this framework, there are four dimensions

which together summarize the quality of care from

the patients’ perspective. These dimensions are: the

medical-technical competence of caregivers; the

physical-technical conditions of the care organization;

the degree of identity-orientation in the attitudes

and actions of the caregivers and the socio-cultural

atmosphere of the care organization. Every dimension

has specific factors, and within each factor there are

specific items. Each item is evaluated in two ways by

the respondent, namely by assessment of perceived

reality and by evaluation of subjective importance.

This is done on a four-point scale, from 1�/do

not agree at all (the perceived reality) or of little

importance (subjective importance) to 4�/fully agree

(the perceived reality) or of very great importance

(subjective importance).

The questionnaires for the neonatal unit and the

CHCs were modified from a questionnaire used at the

CHCs and with the agreement of the author of QPP

[20]. The questionnaires consisted of the following

30 K. Jackson et al.

three dimensions: the identity-oriented approach

comprising 10 factors and 29 items, the medical-

technical competence comprising two factors and six

items, and the socio-cultural atmosphere comprising

two factors and six items.

Statistics

Descriptive measures of data are presented as

mean and standard deviation. Analysis of variance

(ANOVA) for repeated measurements was used to

analyse the data with the three different dimensions as

outcome variables. For each outcome, a model was

constructed with five main explanatory factors: 1)

mother or father or nurse, 2) perceived reality or

subjective importance, 3) neonatal unit or CHCs, 4)

gestational age categorized as 25�/30 or 31�/34 wk,

and 5) children having at least one diagnosis with high

risk or not. Factors 1, 4 and 5 were between-subject

factors, i.e. they were measured on different indivi-

duals. Factors 2 and 3 were within-subject factors,

i.e. they were measured repeatedly within individuals.

Separate analyses for the neonatal unit and for

the CHCs were also done. In these analyses, statistical

interactions in pairs were also tested between the

explanatory factors. The Tukey method for multiple

comparisons was used in the pairwise post hoc test

between mother, father and nurse. The computations

were performed as a mixed model and implemented

in SAS, version 8.1 (SAS Institute Inc., Cary, NC,

USA).

Results

The results for individual factors and dimensions

from the neonatal unit are summarized in Table I,

and from the CHCs in Table II. Table III shows the

results of analyses of the mean ratings for all dimen-

sions at both the neonatal unit and the CHCs.

Overall, high figures were obtained in the evaluation

of the care provided both at the neonatal unit and at

the CHCs. When the quality of care at the neonatal

unit was compared to that at the CHCs, a tendency

towards higher ratings at the neonatal unit was found

for all three dimensions. However, the only statisti-

cally significant difference between the neonatal unit

and the CHCs was noted for the dimension medical-

technical competence (p�/0.006).

Neonatal care (Tables I and III)

For the neonatal unit, statistically significant higher

ratings for what was considered important compared

to what was perceived as actually given in the care

were noted for two of the three dimensions: identity-

oriented approach (p B/0.001) and medical-technical

competence (p�/0.009) (Tables I and III). Overall, in

all three dimensions the mothers gave the highest

responses in comparison to fathers and nurses, but

only medical-technical competence showed a signifi-

cant difference between mothers and nurses (p�/

0.026; Table III). Parents and nurses of children

with at least one high-risk diagnosis rated higher in all

three dimensions but none was statistically significant.

There was no statistically significant association with

gestational age in any dimension.

Subjective importance (‘‘what is my general opinion?’’).

Mothers rated medical and caring information before

and after examination and treatment very high, but

high figures were also obtained from fathers and

nurses. Fathers, mothers and nurses rated respect

from doctors and nurses high. Empathy from doctors

and nurses was considered very important by the

parents, while figures for the commitment of doctors

were lower. Commitment of nurses was given a high

rating by both parents. Participation in the care was

not highly rated by the fathers. Medical-technical

competence, both regarding medical care and waiting

time, had high figures. The socio-cultural atmosphere

was important, with high figures particularly from

the mothers. Nurses emphasized the importance of

having a good, secluded environment.

Perceived reality (‘‘how was it for me?’’). All respondents

gave high scores for factors indicating that the parents

were met with respect, commitment and empathy.

Commitment and, to some extent, empathy of doc-

tors were given lower scores than commitment and

empathy of nurses. The lack of a specific responsible

member of staff in charge of each child was rated low

by both parents, as was the possibility for parents to

participate in the care. All three categories rated this

latter possibility in the lower range. Medical compe-

tence was given high figures by both parents and

nurses. Both parents also rated the general atmo-

sphere at the ward higher than did the nurses, but

ranked the possibility for secluded personal talks

lower.

Child health centres (Tables II and III)

For the CHCs, ratings were also statistically signifi-

cantly higher for what was perceived as important

than what was perceived as actually given in the care

regarding identity approach (p B/0.001) and medical-

technical competence (p�/0.003) (Table III). Differ-

ences were noted concerning opinions about the

dimension identity-oriented approach, with fathers

having lower figures compared to mothers (p�/0.004)

and nurses (p�/0.011; Table III). There was no

association in any dimension between children with

at least one high-risk diagnosis compared to children

Quality of care of the preterm infant 31

Table I. Quality of care at the neonatal unit from the perspectives of mothers, fathers and nurses. Factors are described within each dimension on the basis of subjective importance and perceived

reality. Higher scores are better; mean ratings and standard deviations (SD).

Subjective importance Perceived reality

Mother (n�/21) Father (n�/20) Nurse (n�/15) All Mother (n�/21) Father (n�/20) Nurse (n�/15) All

Dimensions/factors Mean SD Mean SD Mean SD Mean SD Mean SD Mean SD Mean SD Mean SD

Identity-oriented approach

information before procedure 3.87 0.31 3.57 0.42 3.51 0.50 3.67 0.43 3.48 0.78 3.17 0.66 3.24 0.43 3.31 0.66

information after procedure 3.75 0.36 3.55 0.50 3.60 0.47 3.64 0.45 3.18 0.72 2.94 0.60 3.33 0.47 3.14 0.63

responsible staff 3.47 0.52 3.37 0.51 3.53 0.44 3.45 0.49 2.61 0.89 2.92 1.08 3.13 0.48 2.86 0.89

participation 3.30 0.80 3.03 0.82 3.22 0.51 3.18 0.74 2.83 1.00 2.44 0.89 2.91 0.34 2.71 0.83

respect from doctors 3.74 0.44 3.82 0.34 3.67 0.49 3.74 0.42 3.64 0.55 3.79 0.30 3.40 0.47 3.63 0.47

respect from nurses 3.76 0.44 3.70 0.44 3.68 0.46 3.72 0.44 3.79 0.37 3.67 0.41 3.50 0.44 3.67 0.41

commitment of doctors 3.08 0.78 3.07 0.53 3.21 0.54 3.11 0.63 2.85 0.72 2.96 0.63 2.64 0.64 2.83 0.66

commitment of nurses 3.40 0.57 3.17 0.46 3.46 0.36 3.33 0.49 3.62 0.42 3.24 0.57 3.38 0.40 3.42 0.50

empathic doctors 3.62 0.51 3.46 0.48 3.27 0.52 3.47 0.51 3.14 0.63 3.35 0.64 2.94 0.39 3.16 0.59

empathic nurses 3.68 0.54 3.53 0.45 3.50 0.39 3.58 0.47 3.59 0.64 3.49 0.53 3.40 0.46 3.51 0.55

Total 3.56 0.39 3.39 0.34 3.44 0.33 3.47 0.36 3.30 0.44 3.17 0.44 3.17 0.26 3.22 0.40

Medical-technical competence

medical care 3.92 0.24 3.86 0.34 3.70 0.42 3.84 0.34 3.75 0.35 3.71 0.41 3.58 0.49 3.69 0.41

waiting time 3.95 0.22 3.85 0.33 3.53 0.52 3.80 0.39 3.62 0.74 3.60 0.60 3.33 0.90 3.54 0.74

Total 3.93 0.23 3.86 0.32 3.64 0.40 3.83 0.33 3.70 0.47 3.68 0.44 3.49 0.61 3.64 0.50

Socio-cultural atmosphere

general atmosphere 3.65 0.37 3.45 0.48 3.42 0.39 3.52 0.42 3.65 0.39 3.52 0.45 3.35 0.36 3.52 0.42

secluded environment 3.53 0.60 3.27 0.72 3.63 0.44 3.46 0.62 3.29 0.90 3.28 0.75 3.30 0.59 3.29 0.76

Total 3.63 0.35 3.39 0.48 3.49 0.33 3.51 0.40 3.54 0.43 3.43 0.40 3.33 0.36 3.45 0.40

32

K.

Jack

sonet

al.

Table II. Quality of care at the child health centre from the perspectives of mothers, fathers and nurses. Factors are described within each dimension on the basis of subjective importance and

perceived reality. Higher scores are better; mean ratings and standard deviations (SD).

Subjective importance Perceived reality

Mother (n�/21) Father (n�/14) Nurse (n�/18) All Mother (n�/21) Father (n�/14) Nurse (n�/18) All

Dimensions/factors Mean SD Mean SD Mean SD Mean SD Mean SD Mean SD Mean SD Mean SD


information before procedure 3.61 0.61 3.44 0.43 3.00 0.96 3.41 0.70 2.88 0.59 2.89 0.64 3.17 0.41 2.94 0.57

information after procedure 3.55 0.56 3.51 0.33 3.11 0.69 3.43 0.55 2.86 0.68 2.90 0.66 3.29 0.49 2.96 0.64

responsible staff 3.53 0.47 3.14 0.74 3.10 0.99 3.30 0.72 2.81 1.03 2.92 0.86 3.25 0.46 2.94 0.88

participation 3.41 0.86 3.17 0.70 3.30 0.90 3.31 0.81 2.77 0.84 2.23 0.74 3.21 0.69 2.71 0.84

respect from doctors 3.88 0.32 3.46 0.43 3.73 0.47 3.72 0.42 3.40 0.62 3.12 0.80 3.45 0.69 3.34 0.68

respect from nurses 3.79 0.34 3.53 0.53 3.67 0.49 3.68 0.45 3.48 0.54 3.23 0.66 3.54 0.45 3.42 0.56

commitment of doctors 3.49 0.49 2.95 0.59 3.45 0.48 3.32 0.56 2.85 0.82 2.17 0.61 3.17 0.74 2.73 0.82

commitment of nurses 3.43 0.45 2.86 0.41 3.68 0.45 3.32 0.54 3.21 0.75 2.74 0.66 3.50 0.49 3.14 0.72

empathic doctors 3.62 0.39 3.13 0.50 3.64 0.46 3.48 0.49 3.13 0.86 2.47 0.67 3.30 0.64 2.99 0.81

empathic nurses 3.67 0.39 3.14 0.34 3.56 0.57 3.49 0.48 3.32 0.74 3.08 0.60 3.39 0.55 3.27 0.65

Total 3.60

(n�/21)

0.31 3.18

(n�/14)

0.36 3.42

(n�/14)

0.46 3.43 0.40 3.16

(n�/21)

0.57 2.78

(n�/13)

0.48 3.30

(n�/14)

0.39 3.10 0.53


medical care 3.87 0.39 3.69 0.41 3.68 0.47 3.76 0.42 3.19 0.81 3.32 0.92 3.47 0.56 3.31 0.77

waiting time 3.84 0.44 3.67 0.65 3.44 0.62 3.69 0.56 3.21 0.73 3.50 0.53 3.67 0.52 3.40 0.64

Total 3.87

(n�/17)

0.38 3.68

(n�/12)

0.38 3.56

(n�/10)

0.44 3.73 0.41 3.23

(n�/15)

0.73 3.38

(n�/10)

0.70 3.48

(n�/10)

0.55 3.34 0.66


general atmosphere 3.48 0.46 3.24 0.44 3.54 0.52 3.42 0.48 3.25 0.64 3.17 0.62 3.35 0.44 3.25 0.59

secluded environment 3.48 0.62 3.19 0.63 3.83 0.39 3.49 0.61 3.55 0.59 3.45 0.83 3.58 0.64 3.53 0.65

Total 3.47

(n�/21)

0.39 3.21

(n�/14)

0.45 3.68

(n�/14)

0.45 3.45 0.45 3.35

(n�/21)

0.58 3.24

(n�/14)

0.54 3.41

(n�/15)

0.59 3.34 0.56

Quality

ofca

reof

the

preterm

infa

nt

33

with none of these diagnoses. There was also no

association with gestational age in any dimension

except in the dimension medical-technical compe-

tence. In this dimension, the interaction between

subjective importance/perceived reality and gesta-

tional age was significant (p�/0.022). The interaction

showed that there was no difference between sub-

jective importance and perceived reality if gestational

age was 31�/34 wk, but there were higher ratings for

subjective importance than perceived reality when

gestational age was 25�/30 wk. Table II describes the

responses with regard to the different factors in each

dimension at the CHCs.

Subjective importance. According to both parents, the

most important aspect of treatment was to be given

good information about different procedures and to

be met with respect and empathy by doctors and

nurses. Fathers had lower values overall compared to

mothers concerning all items in the dimension iden-

tity-oriented approach. The importance of medical

competence was graded high, highest by mothers.

The social atmosphere was most important for the

nurses and of lesser importance to the fathers.

Perceived reality. In general, the nurses gave higher

figures for all items than did the mothers and fathers.

Mothers, fathers and nurses all gave high figures

concerning the question of being met with respect by

doctors and nurses, while commitment of doctors was

given a lower rating. Commitment of nurses had

higher figures, except from fathers. The fathers also

rated medical competence, both concerning medical

care and waiting time, higher than the mothers, but

not as high as did the nurses. All categories gave high

figures concerning the socio-cultural atmosphere,

especially for a secluded environment, but the fathers

gave the lowest.

Discussion

Quality of care can be looked upon and measured in

several different ways. In neonatal and perinatal care

the traditional way has been to judge the outcome as

short- or long-term medical results. This implies

looking upon life/death or no handicap/handicap as

indicators of quality of care. As neonatology has

developed to such a great extent and as more very-

premature-born children are surviving [22,23], this

seems to be a very rough method and the quality of

care must be looked upon in a broader sense [24].

Table III. Results from repeated measurement ANOVA with the three dimensions as outcome variables. Each dimension is analysed both in

the neonatal unit and at the child health centre.

Neonatal unit Child health centre

Mean p -value Mean p -value


Mother/father/nurse 3.42/3.27/3.30 0.139 3.36/3.03/3.36 0.003

Mother/fathera 0.139 0.004

Mother/nursea 0.355 0.998

Father/nursea 0.927 0.011

Subjective importance/perceived reality 3.46/3.21 B/0.001 3.42/3.08 B/0.001

High-risk diagnosis/no high-risk diagnosisb 3.38/3.29 0.388 3.27/3.23 0.784

Gestational week 25�/30/31�/34 3.31/3.36 0.624 3.19/3.31 0.446






Subjective importance/perceived reality 3.81/3.62 0.009 3.72/3.32 0.003








Subjective importance/perceived reality 3.49/3.43 0.417 3.48/3.36 0.195



a Pairwise post hoc test between mother, father and nurse is adjusted for multiple comparison by the Tukey method.b High-risk diagnosis defined as at least one of following: gestational ageB/28 wk, respiratory distress syndrome, sepsis or cerebral

haemorrhage.


When a newborn infant is treated, this often means

treating a whole family and the overall outcome is in

fact affected by how we succeed in taking care of the

family, since having a premature newborn affects the

family for a very long period of time [5,6]. Evaluation

of the quality of care of the premature newborn

should therefore include consideration of the opinions

of parents and personnel about the extent to which we

succeed in giving good care both from a medical point

of view and from the view of taking care of the whole

family. Research in this area is limited and more

studies are required [9].

How then can we know if we are taking care of the

family in the best possible way, including helping

them to cope with the stress both at the intensive care

unit and after discharge from the hospital, at the

CHCs? Only the parents themselves can answer these

questions. Our study has therefore aimed at elucidat-

ing these issues in order to obtain further knowledge

in this field. For this purpose we used the question-

naire QPP [21], which was answered by mothers and

fathers separately and also by nurses at the neonatal

unit and at CHCs. Overall, parents gave both the

neonatal unit and CHCs very good ratings on how

they had been taken care of. However, perceived

reality was rated lower than subjective importance

regarding both the identity-oriented approach and

medical-technical competence both in the neonatal

unit and at the CHCs. This was not observed

concerning the socio-cultural atmosphere. Consider-

ing the dimension identity-oriented approach, differ-

ences were mainly noted at the CHCs and less at the

neonatal unit. At the CHCs the nurses gave overall

higher ratings than both parents.

These results possibly indicate that, according to

parents’ opinions, the special needs of this group of

infants and parents are met in a more efficient way at

the neonatal unit than at the CHCs. Experience with

premature newborns is greater at the neonatal unit

than at the individual CHC, where only a few such

infants and their families are encountered every year

[13,20]. Knowledge of the care and needs of preterm

infants is therefore naturally less at the CHC. Perhaps

only one, or at least only a few, CHCs in each county

should take care of these children and families.

However, it is also of utmost importance that these

families be guided towards a normal way of life and

not cling to special care when they do not need it.

This is a task that is best taken care of by the CHCs

[20,25]. We know that parents are vulnerable for a

long period of time after discharge due to their

experiences in the neonatal ward. Recovery might

therefore take a long time and guiding parents into a

normal way of life should be done by staff trained in

these matters. Since the CHCs meets the family at

regular intervals, and also more often if necessary,

during the first 6 y of life they have a great opportunity

to evaluate the individual needs of the family despite

having less knowledge of the needs of the premature

infant [16,18,19]. A more intense cooperation be-

tween the paediatric clinic and the CHCs may be

needed for some families.

Being met with respect, commitment and empathy

by nurses and doctors was considered very important

by the parents. Since parents are in a difficult situation

at the neonatal unit, in having a premature newborn

who is taken care of by others outside the family, it is

easy to understand their feelings on these matters.

Other studies verify the stressful impact on mothers of

being in an intensive care unit [3,4] as well as after

discharge from hospital [5,6]. Fathers expressed this

less regarding the CHCs, which might partly be an

effect of their less frequent participation in these visits.

This is verified by another study from our group [26].

Both parents emphasized the role of the nurses.

Having a specific nurse as their contact person at

the neonatal unit and at the CHCs was appreciated by

both fathers and mothers. The mothers at the

neonatal unit, in particular, saw this as very impor-

tant. This individual support may also have a long-

term impact on the family [14].

It is interesting to note that concerning commit-

ment and empathy, nurses at the neonatal unit were

ranked higher than doctors, although fathers ranked

doctors somewhat higher than did mothers and

nurses. Regarding figures for the subjective impor-

tance of this matter, this was also true for commit-

ment but not for empathy, where all three categories

gave higher figures for doctors compared to perceived

reality. This might be a local phenomenon, but the

result might also tell us that nurses spend more time

in direct contact with the parents and are therefore

able to give more continuous information and sup-

port. This corresponds to the CHCs, as the nurse

there is more obviously the key person. McFayden [1]

emphasizes the importance of the impact of the

relationship between the caregiver and the parents.

Since this study concerned opinions of parents and

nurses and not doctors, a bias might be introduced, as

nurses are reporting on their own role. It would have

been interesting to have responses from doctors.

Another critical point is the small sample size of the

groups. The credibility of this design is the repeated

measurement and the three groups of respondents

being compared.

Good medical competence was considered very

important by both parents, and this had in fact been

achieved in the parents’ view, although to a lesser

extent at the CHCs. According to the answers given,

this is the basis of good medical care and, together

with the identity-oriented approach, this is also

important of nursing care. The QPP instrument has

been used in the context of first-time mothers’

evaluation of their satisfaction with early encounters


with the CHCs [18]. The results of this study showed

that the mothers were satisfied overall with their first

encounter with the nurse in the CHCs. Especially

important was the medical-technical competence of

the staff, which is in agreement with this study. In

general, mothers thought that the medical compe-

tence was not as good at the CHCs as at the hospital.

An explanation for this might be that medical issues

are in a greater focus at the hospital and that CHCs

visits are more temporary, short visits, mainly con-

cerning other matters. In several studies, visits to the

CHCs have been described as too standardized with

reports of parental difficulties in influencing CHCs

agendas [26�/29].

The general atmosphere in the neonatal ward and

CHCs was also of importance to parents and nurses,

and nurses stressed the benefit of a secluded environ-

ment for parents and their children. In modern, highly

technological intensive care this is not so easy to

achieve, but it is more feasible at the CHCs.

From our results it seems that differences in

gestational age did not affect the answers for neonatal

care, but they did for care at the CHCs. It is surprising

that gestational age did not matter at the neonatal

ward, but this reminds us that the experiences of

parents can be perceived in a similar way no matter

what the grade of prematurity [11]. Interestingly, in

the CHCs, prematurity seemed to matter more when

looking at the interaction between subjective impor-

tance and perceived reality. The reason for this might

be seen from the perspective of the importance of

medical-technical competence and the identity-or-

iented approach connected to the vulnerability of

having a preterm infant.

In conclusion, we have found that fathers and

mothers give both neonatal units and CHCs good

reports, but that changes still need to be made to

improve the quality of care of premature newborns

and their families, both during and after the period in

hospital. For good quality of care it is important 1) to

be aware that parents and medical staff judge the

needs of care in different ways; 2) to promote the

participation of parents in the care of the preterm

infant; 3) to meet the needs of parents by having a

special contact nurse at the NICU; and 4) to increase

the level of competence of CHCs in assessing the

needs of preterm infants. An optimal identity-oriented

approach, medical-technical competence and socio-

cultural atmosphere could strengthen the possibilities

of parents to be confident in their parental role.

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Documents

Quality of care of the preterm infant—the parent and nurse perspective