title: Mothers' and health care providers' perspectives of the barriers and facilitators to attendance at Canadian neonatal follow-up programs.
abstract: BACKGROUND
  Despite the benefits of Neonatal Follow-Up (NFU) programs for infants at risk for developmental problems subsequent to preterm birth, non-attendance continues to be a problem within Canada and beyond. This study investigated the barriers and facilitators to attendance at Canadian NFU programs from mothers' and health care providers' (HCP) perspectives.
  
  
  METHODS
  In this multi-site qualitative descriptive study, we conducted semi-structured individual interviews with 12 mothers, six from each of two NFU programs; and focus groups with 20 HCPs from nine NFU programs. Interviews were audio-recorded and transcribed and then subjected to thematic analysis.
  
  
  RESULTS
  The predominant barriers represented a complex interplay of cumulative factors: mothers' isolation and feeling overwhelmed, with limited support, experiencing difficulty attending because of limited resources, who viewed NFU as not needed until problems arose for their child. Other barriers included vulnerability and fear of bad news. Mothers reported the need to protect their vulnerable child from risks, whereas HCPs reported creating vulnerability by monitoring the child's development over time. HCPs perceived fear of bad news as a barrier, whereas mothers viewed that impending bad news increased their need to attend to address the issue. The predominant facilitators were support, family centred-care and mothers with adequate resources.
  
  
  CONCLUSIONS
  Attendance is most problematic for mothers with limited support, capacity and resources. First and foremost, targeted approaches to NFU service provision are needed to address the cumulative barriers and improve experiences for mothers who find it difficult to attend NFU. A continuous relationship with a single point of contact is needed and merits further investigation - a provider who works across the traditional silos of neonatal intensive care, NFU and community services, minimizes duplication and navigates transitions.
authors.affiliation: School of Nursing, Faculty of Health Sciences, McMaster University, Hamilton, ON, Canada.
authors.forename: M
authors.initials: M
authors.lastname: Ballantyne
authors.affiliation: Faculty of Nursing, University of Calgary, Calgary, AB, Canada.
authors.forename: K
authors.initials: K
authors.lastname: Benzies
authors.affiliation: Department of Pediatrics, McMaster University, Hamilton, ON, Canada.
authors.forename: P
authors.initials: P
authors.lastname: Rosenbaum
authors.affiliation: Department of Paediatrics, University of Calgary, Calgary, AB, Canada.
authors.forename: A
authors.initials: A
authors.lastname: Lodha
mesh_terms: D000328:Adult; D002170:Canada / Q000453:epidemiology; D005260:Female; D017144:Focus Groups; D005500:Follow-Up Studies; D006801:Humans; D007231:Infant, Newborn; D007234:Infant, Premature; D000068101:Maternal-Child Health Services / Q000706:statistics & numerical data*; D009034:Mother-Child Relations; D009035:Mothers / Q000193:education / Q000523:psychology*; D016487:Parenting / Q000523:psychology; D010342:Patient Acceptance of Health Care / Q000523:psychology / Q000706:statistics & numerical data*; D010358:Patient Participation; D011181:Postnatal Care; D011247:Pregnancy; D036301:Qualitative Research; D012017:Referral and Consultation; D012944:Social Support
keywords: access to health care; follow-up; health professionals; outpatient clinics; parent perceptions; qualitative research