Parents as Pain Management in Swedish Neonatal Care
Parents as Pain Management in Swedish Neonatal Care
Parents are a valuable but underused resource in neonatal pain management. In the Nordic
 countries, family-centred neonatal care has come a long way in welcoming and including
 parents in the everyday care of their infant. Nonseparation of parents and infants is a
 protective measure in decreasing stress in both parents and infants and should also be
 applicable during painful procedures. Sick newborn infants and infants that are born
 premature are cared for in neonatal intensive care units (NICUs). Because of the intense
 nature of the care the infants are subjected to an extensive amount of painful procedures and
 treatments needed for survival. Research shows that infants cared for in the NICU, experience
 on average between 7 and 17 painful procedures per day, and far from all infants receive
 adequate pharmacological or non-pharmacological analgesia during the procedures. The parents'
 role in the pain experience of older children has received considerable attention in
 research, but parents' participation in infant pain management has quite recently become a
 focus for research in nursing pain science with currently a handful studies. Research shows
 for example that when parents are present, the documentation of nursing pain assessment
 increases as well as the use of non-pharmacological pain-relieving methods, and parental
 presence can reduce the child's pain intensity and behavioural distress. There is no previous
 research within Swedish health care context that has investigated the parents' attitudes
 towards being involved in their infant's pain management, nor any research that previously
 has assessed the efficacy of combined parent-driven pain management such as skin-to-skin
 contact or breastfeeding including parental live lullaby singing. The objectives for the
 study are to investigate parents' and health professional's attitudes, experiences and
 perspectives on non-pharmacological parent-driven pain management and also to test the
 efficacy of combined parent-driven pain management such as skin-to-skin contact,
 breastfeeding and parental live lullaby singing.
Study design and eligibility criteria:

 The study design for the qualitative part of this study, tier one, is inspired by
 Participatory Action Research (PAR), involving both parents and health professionals in
 neonatal intensive care in a collaborative research project. Our ambition with the PAR design
 is to democratize the research process and include also the parents in the knowledge making.
 One focus group per region is recruited by the researchers and the participants are recruited
 based on their interest for parent-driven pain management. The focus groups contain two
 parents of infants who currently are admitted to the NICU, one parent who previously
 experienced NICU care, two health professionals and two researchers. In the focus groups, the
 NICU parents, the health professionals and the researchers will sit together discussing and
 sharing knowledge about parent-driven pain management interventions. The groups will then
 test the parent-driven interventions during a routine blood sample, before the groups meet
 again to evaluate their experiences and suggest solutions for plausible problems to improve
 clinical practice. The feedback from the focus groups will purportedly bring about guidelines
 for parent-driven pain management which are context sensitive and tailored to the Swedish
 family-centered NICU situation and public health care system as well as bring forth
 information how to implement parent-driven methods.

 The second tier of the study is a randomized controlled trial. A written informed consent is
 acquired from each and one of the infant's parents. Healthy, full term infants who will be
 screened with the routine phenylketonuria (PKU) test and their parent, are enrolled and
 randomized into one of three groups; one control group with glucose (n= 75), one group with
 skin-to-skin contact (n= 75), and one group where the skin-to-skin contact is combined with
 breastfeeding, live parental lullaby singing and touch (n= 75). All infants will receive
 effective pain management of some kind. If applicable, health care interpreting service will
 be offered for parents not speaking Swedish. Infants treated with sedatives or analgesics
 within the last 24 hours are excluded.
Inclusion Criteria:

 Healthy, full term infants who will be screened with the routine PKU test and their parent.

 Exclusion Criteria:

 Infants treated with sedatives or analgesics within the last 24 hours.