Parents' experiences of VOICE: A novel support programme in the NICU

Abstract Background Admission of an infant to a neonatal intensive care unit (NICU) is often a stressful experience for parents and can be associated with feelings of inadequacy to fulfil the desirable parental role. The values, opportunities, integration, control, and evaluation (VOICE) programme was developed to engage parents in care, to decrease stress, and to increase empowerment. Aim To explore the experiences of parents regarding involvement in the VOICE programme during admission of their infant to the NICU. Design The VOICE programme includes at least five personal structured meetings between parents, nurses, and other health care professionals throughout the pathway from birth, NICU, and follow up. A qualitative design was adopted using semi‐structured interviews. Interviews with 13 parents of 11 infants born at <27 weeks' gestational age were conducted: nine mothers and two couples of father and mother. Thematic analysis was deployed. Results The findings have been described in one overarching theme: “parental empowerment.” Parents felt strengthened and were empowered in the development of their role as primary caretaker by the VOICE programme. The parental empowerment theme emerged from four related interpretive themes that were derived: (a) involvement in care, (b) personalized information and communication, (c) transition to a parental role, and (d) emotional support. Conclusion The VOICE programme can be a structured approach used to implement family support in a NICU to empower parents to become a partner in the care of their infant and feel confident. Relevance to clinical practice This study encourages health care professionals to provide parental support through a structured intervention programme, which contributes to the empowerment of parents in the NICU and encouraged them to participate in care and decision‐making.


K E Y W O R D S
family support programme, family-centred care, neonatology, parents, preterm infants

| INTRODUCTION
Admission of an infant to a neonatal intensive care unit (NICU) is often a stressful experience for parents and can be associated with feelings of inadequacy in fulfilling the desirable parental role. 1,2 Worries about the infant's health, the unfamiliar setting, technology, and monitoring can interrupt normal family functioning and bonding. 2 To support parent-infant interaction and the parental role during NICU admission, different programmes have been developed. [3][4][5][6][7] Complementary to the well-known Newborn Individualized Development  3,5,6,8 The programmes often include parents of premature infants born at <37 weeks of gestational age (GA) and extremely premature infants at <27 weeks of GA. [8][9][10][11][12][13] Evaluations of these programmes have demonstrated a reduction in parental depression, anxiety, and stress, as well as improved parental empowerment, confidence, and competence. 5,8,13 However, the previously developed parent support interventions mainly concentrate on the clinical admission period and lack an evaluation component after discharge.
A structured values, opportunities, integration, control and evaluation (VOICE) programme was developed to empower parents of extreme premature infants. The VOICE programme is inclusive throughout the pathways of care of an extreme premature infant from prenatal to the follow-up period after NICU admission. The VOICE programme is specifically developed to empower parents of extreme premature born infants at <27 weeks of gestation as they might benefit the most from this programme because of their extended length of stay in the NICU.
The aim of this study was to explore the experiences of parents regarding their involvement in the VOICE programme, specifically during the period the infants were admitted to the NICU.

| Design
A qualitative research method was adopted with face-to-face semi-structured interviews. The guideline "Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups" has been used to report this study. 14

| Setting
The study was conducted in a 24-bed tertiary NICU in The Netherlands with around 650 annual admissions.

| Sample and recruitment
Convenience sampling was used to gain insights on different perspectives. The inclusion criteria were being a parent of an infant born at <27 weeks GA admitted to the NICU and participating in the VOICE programme. Parents were excluded if they were unable to speak Dutch or if their infant had a prognosis of imminent death. Parents were informed about the study by an independent researcher, and at that time, they received both oral and written information. Parents were approached and asked to participate in order of admission of their infant. When parents were willing to participate and gave consent, an appointment for an interview was made.

| VOICE Programme
To support and empower parents of preterm infants, a programme was developed called VOICE. The VOICE programme is based on previous research indicating the need for a structured support programme that meet the needs and wishes of parents in the NICU. [15][16][17] Compared with previously developed FCC interventions to support parents, the novelty of the VOICE programme is that it is designed to support parents throughout the entire pathway, including prenatal, birth, NICU, and follow-up care.

What is known
• Admission of an infant to a neonatal intensive care unit is a stressful experience for parents.
• Parents experience feelings of inadequacy in fulfilling their parental role.

What is new
• Participation and involvement in care and personalized meetings are important factors to support parents in a NICU.
• Parents feel empowered in their parental role when they are informed and encouraged to participate in care and decision-making.
• The VOICE programme as a parent support intervention contributes to the empowerment of parents in the NICU.
The programme includes at least five structural interdisciplinaryfocussed meetings with parents, before, during, and after an NICU admission, to inform and discuss with parents their role in how to care for their infant and to build a partnership between parents and caregivers. The five VOICE meetings, lasting around 20 to 30 minutes each, are designed with a specific focus ( Figure 1). The first meeting is focused on values (V): During an antenatal conversation at the obstetric ward, the focus of this meeting is on preparing the parents for NICU admission and building mutual trust and confidence between parents and health care professionals (nurses, neonatologists, and social workers). The sec- In addition to these series of VOICE meetings, parents are invited to visit the weekly parental classroom meetings ( Figure 1). During these meetings, parents are educated by physiotherapists, occupational therapists, lactation specialists, and nurses on several subjects such as breastfeeding, developmental care, learning to know your infant, and transition to another department or another hospital. In these weekly parental meetings, an exchange of thoughts and feelings of parents is discussed, with emphasis on positive support for the parents.

| Data collection
Semi-structured interviews were conducted between February 2017 and October 2017. The interviews were audio-taped and transcribed ad verbatim. Interviews were conducted in Dutch and held in a quiet room in the hospital prior to discharge of the infant.
Because of the nature of data collection in this study, by organizing the interviews before discharge, we were unable to evaluate the E (Evaluation meeting at follow up) of the VOICE programme. However, this evaluation will be performed at the follow-up clinic in another study. The researcher (MJE) who performed the interviews was trained in interview techniques, and pilot interviews were performed. 14  F I G U R E 1 Values, opportunities, integration, control, and evaluation (VOICE) programme and parent meetings 2.6 | Data analysis A thematic analysis was performed using an inductive approach; data coding was performed without using a pre-existing framework.
Thematic analysis involves searching and coding across a data set to find repeated patterns of meaning, so-called themes. We adopted the thematic analysis described by Braun and Clarke. 18 This involves six phases to explore meaningful repeated patterns in the data: Step 1 was familiarizing with the data-the manuscripts were read several times. To ensure rigour and trustworthiness, each transcript was read and coded separately by two researchers (ME and FJ) independently. In step 2, generating initial codes, the individual narratives of parents were coded. Step 3, searching for themes, was performed by collating codes into sub-themes. If uncertainty appeared in this process, the linked narratives belonging to the codes were reviewed to better understand the underlying meaning of the code and the sub-theme.
Step 4, reviewing themes, was performed by combining sub-themes with themes if appropriate. If sub-themes were clearly indicating a specific meaningful theme, this was retained as an individual theme.
Step 5, defining and naming themes, was the ongoing analysis of reviewing the codes and generated (sub-)themes. Refinement of the themes was considered to improve the clarity and relevance of the themes. This process was performed with a third researcher (AvdH). Any disagreement of the codes, sub-themes, and themes was solved by discussion. For step 6, producing the report, the findings are reported in this paper.
Consensus among the researchers was reached after each step.

| Ethical considerations
Verbal and written information was provided to eligible parents. All participating parents provided written informed consent. The Medical Research Ethics Committee of the University Medical Centre Utrecht approved the study (Protocol number: 17-059/C).

| FINDINGS
Eleven semi-structured interviews with parents were completed with 13 participants: nine interviews with mothers and two interviews with both mothers and fathers ( Table 1). The interviews lasted between 30 and 45 minutes. Mean age of the parents was 33 years (range 28-43). GA of the infants was between 24 and 27 (mean 25.8) weeks and birthweight between 700 and 1070 (mean 899) grams ( Table 1).
The findings have been described in one overarching theme: "parental empowerment" ( Table 2). Parents felt strengthened and were empowered by their involvement in care and the VOICE programme. This is reflected by four related interpretive themes:

| Involvement in care
The VOICE meetings helped parents express their needs and wishes and how they wished to participate in caring for their infant in a way that they wanted. Parents valued active participation in the care of their infants and having skin-to-skin contact stimulated. It empowered the parental role: "To hold him and to care for him gave me warm feelings and contributed to stronger feelings of being a mother" (M7). The T A B L E 1 Characteristics of parents (n = 13) and infants (n = 11)  4. Emotional support Nurses and doctors were very friendly and always asking how we were doing, this was very supporting (M9)

| Personalized information and communication
We were surviving in the NICU and without the social worker we hadn't discussed feelings of mourning and anxiety. It helped us to reflect on our situation (M5) It was nice to tell my story to the nurses and to have somebody who was just listening and who understood the situation on the NICU (M9) We had a lot of contact with our relatives but everyone liked to hear good news. It helped to talk with other parents from the NICU (F1) Abbreviation: NICU, neonatal intensive care unit.
van den HOOGEN ET AL.
handle even more sensitive than I already did" (M6). Overall, parents feel empowered in their parental role when they are informed and encouraged to participate in care and decision-making. The VOICE programme contributes to their knowledge.

| Transition to a parental role
Parents indicated that the VOICE programme changed their role as a parent from feeling powerless and "can't do anything" to fully participating in their infants' care and decisions. Parents indicated that it was very important to obtain control over the care of their infants in order to establish their role as parents. They need confidence to do so, as some mothers indicated: "We did the care all by ourselves. It was our own process and very meaningful for us to feel complete as a parent" (M5). Other parents mentioned that they felt it was their responsibility to be involved in the health care team as a serious partner. "As a father,

| Emotional support
Emotional support by neonatal staff was important throughout the VOICE meetings: "The nurses were so very friendly, and kind and the doctor always asked how we were doing, this was very supporting" Emotional support targeted the emotional rollercoaster parents faced in the NICU. This was often discussed in the O (opportunities) and I (integration) meetings of the VOICE programme with various team members attending, like one mother mentioned: "We were surviving in the NICU and without the social worker we hadn't discussed feelings of mourning and anxiety. It helped us to reflect on our situation" (M5). Some parents indicated that they had no need to share emotional feelings during the VOICE meetings. They preferred to discuss emotions with their partner and other relatives. Other parents indicated that sharing their story and feelings helped them to process all the things that happened around the birth and admission to the NICU: "It was nice to tell them my story and to have somebody who was just listening and who understood the situation on the NICU" (M9).
The VOICE meetings have been supporting the parents specifically regarding the feelings of being on an "emotional rollercoaster." However, some parents also want to share their thoughts and emotions with peers.

| DISCUSSION
The findings of our study regarding the experiences of parents participating in the VOICE programme during NICU admission identified one overarching theme: "parental empowerment." Empowerment reflects on knowledge, capabilities, motivation, and opportunities. 14  Parents were positive about the individual support received during the VOICE meetings, which contributed to a higher sensitivity and better understanding of their own and infant's needs. A positive approach to meet the individual needs of parents provides confidence in the day-to-day care. 24 Parent participation in educational programmes providing information and opportunities for sharing has been shown to reduce parental stress and anxiety and improves confidence and competence. 12,23,26 This corresponds to the findings of our study where parents gain more insight in how they could support their infants in an optimal way, which empowered them. To increase learning and to meet the needs of parents, studies have indicated that the use of multiple approaches is important. 8 Providing support to parents is one of the key caring responsibilities of NICU staff, specifically in connection with the family-centred care approach. The VOICE programme was initiated to provide a structured approach to support parents throughout the pathway of a NICU admission. The programme was initiated to provide structured support to complement other support that is often provided in unscheduled conversations at the bedside. We acknowledge that our VOICE programme complements other interventions to support parents, which have been standard practice for some years in the NICU community. An example is the intervention related to new mothers who received peer support through a "buddy" programme. These mothers experienced less anxiety and greater social support than mothers who did not participate in the buddy programme. 23,28 Perhaps the synergy of various support programmes in a NICU can contribute to the empowerment and partnership between parents and staff; the whole is greater than the sum of the parts.
In our study, the VOICE programme corresponds with many aspects of FCC in the NICU and therefore might be considered a transferable and beneficial programme in neonatal care. 8,29 Understanding the needs of parents, to empower them and to give them confidence, is an important goal of the VOICE programme. Actively listening to the views of parents is a powerful element to understand the individual needs and to create a fundamental improvement in the quality of care based on empowerment of parents. In order to empower parents and support them in their parental role to reduce stress and anxiety before, during, and after NICU admission, parents need to be involved as partners in care in every neonatal ward and NICU globally. However, "parental empowerment interventions" in the NICU need more robust studies to confirm the effectiveness on parents' health outcomes and infants' clinical outcomes. 12

| Strength and limitations
The strengths of our study were that the newly introduced VOICE Therefore, after the 11th interview, the recruitment was stopped.
Finally, the VOICE programme was evaluated with parents who were still present at the NICU. The conversations of the fifth VOICE meeting (evaluation) have not been explored. Further studies should test the full programme, including long-term follow up.

| CONCLUSION
Participation and involvement in care with personalized structured and focussed meetings are important initiatives to support parents in the NICU. There is a need for transparent, clear, and respectful communication between parents and health care professionals. A multidisciplinary approach adds value to supporting parents in their role in the NICU. The VOICE programme is a structured framework of implementing family support in the NICU to support and empower parents. Further studies are needed to confirm the effect on parental outcomes and infants' health outcomes.