Am J Perinatol 2016; 33 - A019
DOI: 10.1055/s-0036-1592390

Italian and Spanish Perspectives on the Burden to Parents of Having a Child Hospitalized for Respiratory Syncytial Virus Infection

Paolo Manzoni 1, A. Dall’Agnola 2, J. Fullarton 3, B. Rodgers-Gray 3, X. Carbonell-Estrany 4
  • 1Department of Neonatology and NICU, S. Anna Hospital, Torino, Italy
  • 2Department of Paediatrics and Neonatology, “Silvio Orlandi” Hospital, Bussolengo, Verona, Italy
  • 3Strategen Limited, Basingstoke, United Kingdom
  • 4Neonatology Service, Hospital Clinic, Institut d'Investigacios Biomediques August Pi Suñer (IDIBAPS), Barcelona, Spain

Introduction: RSV infection is leading cause of childhood hospitalization, but the burden to parents of such children is not well defined. This study aimed to define the parental burden of RSV hospitalization (RSVH) and to determine whether perspectives differ between Italy and Spain.

Materials and Methods: A total of 110 factors related to the parental burden of RSVH were identified in meetings held in Italy (x2) and Spain (x3), involving 28 parents of RSVH children (10 Italian) and 11 healthcare professionals (HCPs; 4 Italian) experienced in RSV. A questionnaire then assessed the impact of each of these factors on overall parental burden using a scale of 1 (very unimportant) to 10 (very important), completed by a new set of Italian and Spanish parents and HCPs. 105 questionnaires were completed by parents (46 Italian) and 56 by HCPs (25 Italian). Responses were assessed by principal component analysis.

Conclusion: The overall pattern of responses was highly and significantly correlated between Italian and Spanish parents and HCPs (p < 0.001 for all comparisons). “Worry that the child will have to be readmitted at a later date” was identified as a key factor by all groups of respondents (Table 1). Two of the five most important factors were shared by Italian and Spanish parents, both related to re-admission and further infections. Italian and Spanish HCPs were very aligned, with four of the five top factors being the same, 3 of which were related to ongoing health issues. In conclusion, the parental burden of RSVH is defined similarly in Italy and Spain, with a significant proportion of that burden related to on-going or subsequent health issues.

Table 1 Key factors associated with parental burden

Factor

Ranking Italian parents

Ranking Spanish parents

Ranking Italian HCPs

Ranking Spanish HCPs

Becoming fearful of further infections

1

4

1

–

Worry that your child will have to be readmitted at a later date

2

2

2

3

Positive experience of treatment by professionals

3

–

–

–

Serious breathing difficulties and/or need for respiratory therapies

4

–

5

1

Need for parents to be involved in nasal washes or other treatments

5

–

–

–

Need to be sure that clinical staff are aware of latest developments and improvements

–

1

–

–

Stressful, painful or invasive procedures during treatment

–

3

–

4

Having to maintain confidence in the medical staff

–

5

–

–

Problems normally associated with prematurity being further exacerbated

–

–

3

2

Ongoing health issues for your child, such as otitis, asthma, pneumonia, persistent cough

–

–

4

5