Discussion

Nowadays, parental involvement in neonatal pain management practice is still an emerging field in many countries, even though it has been considered to be beneficial for multiple stakeholders.29 This field faces many difficulties and challenges; therefore, policy-makers, hospital administrators and healthcare professionals need evidence to help make decisions in the implementation process. This scoping review identified facilitators and barriers to parental involvement in the management of neonatal pain in the NICU at multiple levels within the context of the SEM. The interactions that may occur between the various levels need to be taken into account when developing implementation strategies. For example, parents’ emotions at the intrapersonal level could influence healthcare professionals’ attitudes and support for them. In turn, the relationships and interactions between healthcare workers and parents at the interpersonal level could affect parents’ emotions, behaviours and knowledge levels. Similarly, restrictive environments and policies at the institutional level might have an impact on parents at both the intrapersonal and interpersonal levels. For instance, a lack of staff training left both staff and parents with a lack of pain knowledge, leading to tensions and poor communication between them, as well as parents’ negative attitudes. This is precisely why we chose the SEM as the theoretical framework to summarise the factors that influence parental involvement. This framework provided us with a new way of thinking and perspective. In this way, strategies for improvement based on influencing factors at one level may have a positive impact on other levels, which can inform our improvement measures and thus facilitate the implementation of pain management clinical practice.

Our findings showed significant differences in the number of facilitators and barriers at various levels. One and the same factor might be a facilitator in one situation and a barrier in another. Intrapersonal factors such as parental role, parents’ motivation, parental emotional stress and parents’ knowledge had a significant impact on parental involvement behaviour, which was consistent with previous meta-synthesis results.33 However, our review suggested additional intrapersonal factors, including mother–infant attachment, condition of infants or mothers and everyday life requirements. Regarding taking an active role in pain management, parents’ opinions were consistent. They were eager to help with their infant’s pain relief and conveyed concerns about their pain and therapy.11 28 34–36 Self-determination theory suggests that an individual’s motivation and willingness may be associated with three basic psychological needs: autonomy, competence and relatedness.37 This concept can be spanned across interpersonal and institutional domains. Parents’ motivation and willingness to participate in pain management may become stronger if they have a sense of control over the NICU environment and are cared for by the staff. A strong sense of parental role was identified as a factor contributing to participation.30 Evidence suggests that mother–infant attachment is linked to the creation of parental roles and that nurse support can enhance mother–infant connection.9 38 39 Parental emotions and knowledge were the most frequently reported intrapersonal factors in the current scoping review, with support from healthcare professionals playing an equally crucial role. It again exemplifies the influence of interpersonal relationships on individual factors within the framework. It is the responsibility of neonatal healthcare providers to screen and assess parents for emotional problems that may be affecting their children’s moods,40 but this is not a reason to exclude them from the NICU. Instead, healthcare professionals can calm them by building trust with them through good communication and explanations as well as positive encouragement and invitations. In addition, healthcare professionals should provide parents with pain-related information to give them the knowledge and skills that will help them establish their role as caregivers, strengthen their confidence and promote participation. Poor condition of infants or mothers and everyday life requirements were barriers to parental involvement. It was in line with the findings of two systematic reviews.41 42 Encouraging other family members to assist with some of the family responsibilities can help reduce the stress in the lives of mothers, while other improvements need further study.

In our scoping review, interpersonal factors primarily refer to interpersonal relationships and interactions between parents and healthcare professionals, with only one study mentioning peer support on the internet.20 Informational and emotional support from staff has already been mentioned in the previous discussion, as it plays the most prominent role in facilitating parental involvement in pain management and spans almost all domains of the SEM. Specifically, in terms of the information content, first, staff should emphasise to parents the importance of participating in pain management and increase the awareness of their roles and responsibilities as caregivers; then, staff need to inform parents about the pain procedures that their infants may have to go through, the timing of the procedures and the parent’s tasks during the process; and lastly, how to participate and cooperate is of paramount importance, and the pain relief employed by the specific methods are to be provided. In terms of the information form, in addition to verbal instructions and written pamphlets, live demonstrations, visualisation, the parents’ personal needs and the infant’s characteristics are all worth considering. Nowadays, parents’ access to health information from the internet and smartphones is becoming an increasingly popular means and gaining more parental preference.43 Hence, it is recommended that professionals, organisations, communities and governments progressively enhance their attention, development and utilisation of social media. There may be value in developing a learning toolkit that contains information in a variety of formats. Furthermore, parents with similar caregiving experiences in the NICU are another valuable resource, and peer-to-peer support from them could be considered an effective psychoeducational intervention.44 However, there are few studies related to parental involvement in education and training for pain management, either in the construction of instructional programmes or the evaluation of training effectiveness, which could be an area for future research. Parental involvement in the pain relief process is also a continuous learning process of parenting, which is not without the emotional encouragement and affirmation of the clinical staff. The positive feedback from the staff and the infant will promote continued parental involvement. Staff’s authoritarianism and passivity was also a barrier, consistent with the findings of another study.33 This partially overlaps with the institutional domain of the model. Although listening and respect are among the core principles of patient-centred and family-centred care,40 evidence suggested that more than one-third of ICUs had a poor ‘climate of mutual respect’.45 This may further jeopardise the clinician–patient relationships and discourage family engagement. The organisational policies and regulations influence, to some extent, the decision-making of the professionals who are the gatekeepers of the NICU. Professionals should value collaboration with parents and consider and respect their feelings when conducting any procedure, trusting their unique knowledge of their infant rather than questioning the parent’s competence.10 Trust is built on good communication. Nurse-to-nurse, nurse-to-physician and nurse-to-parent communication all have an impact on parental involvement.21 27 28 31 Organisations can promote good communication through training, staffing and the physical healthcare environment.46 Additionally, healthcare institutions should be aware of communication issues that arise from language and culture. Providing evidence-based racial and cultural sensitivity training and implicit and explicit bias training for healthcare professionals may mitigate disparities caused by communication issues,47 but further research is urgently needed to identify best practices. Perception differences between parents and staff are an additional barrier identified in this scoping review that can be addressed by good communication. Studies showed that parents in the NICU had specific expertise about their own infants’ pain and comfort needs, and nurses could gain new information directly from them.10 Nurses need to be aware of the parents’ unique strengths in this area, encourage their participation, and gradually work through the transfer of responsibility and authority in the process. The comforting experience and confidence of the empowered parent increase, which in turn promotes participation.

Organisational resources and regulations played a key role in affecting parental involvement at the institutional level, which echoed multiple studies on kangaroo care and breastfeeding.41 42 48 Parents generally expressed dissatisfaction with the limited space, inadequate facilities and restrictive policies of the NICUs. To our knowledge, many healthcare organisations employed various strategies, policies and resources when it came to providing healthcare; some did not even incorporate parental engagement into their strategic plans at all.27 31 The development of specific and realistic guidelines and policies is a pressing issue for the organisation. For example, consulting with parents about each other’s roles and responsibilities to enhance shared decision-making, securing unlimited visitation hours to ensure that parents can be present at any time, and setting up friendly facilities such as private family rooms, screens, lockers and collapsible recliners to increase parents’ convenience and comfort. This may cross the model’s community and public policy domains and may require stronger public policy support and funding from social organisations such as charities. Moreover, the timing of some routine pain procedures and doctor rounds may be reasonably adjusted to the needs of the parents, as parents may provide more detailed information about their babies directly to healthcare professionals.10 Of course, joint consultation and agreement among multiple parties are necessary. Interprofessional collaboration has been cited as an enabling factor in facilitating pain management practice21 49; however, such collaborative practice is often lacking within organisations. Evidence suggests that power imbalances in clinical practice hinder interprofessional joint decision-making.50 Interprofessional communication channels, interprofessional educational programmes and evidence-based strategies can reduce power imbalances, improve interdisciplinary communication51–53 and create supportive organisational cultures and climates to promote parental involvement. Additionally, nurses cited workload and time pressures as leading them to prioritise infant survival over pain management, a finding supported by other studies.52 54 These studies similarly identified high workload as a barrier to optimal management of patient pain, in part due to the shortage of nurses in the institution. The nursing shortage is a globalised issue that can be addressed through the development of a country-specific data-informed model of supply and demand routes, evidence-based policies and resource allocation, improved working and employment conditions and the implementation of wage management mechanisms.55 56 Finally, the lack of organisational training programmes in neonatal pain management leads to a lack of knowledge among healthcare professionals about neonatal pain and a similar lack of appreciation of the benefits of parental involvement in pain relief. There are continuing education programmes, such as training forums and seminars,52 where healthcare professionals can enhance their learning of standard procedures and guidelines while bridging the gap between knowledge and practice in the clinical setting. However, specific training programmes, including content and format, require further research.

Based on the included studies, our review only found relevant restrictions imposed by the COVID-19 pandemic at the community and public policy levels of the model. It indicates even more that comparable public health events could serve as obstacles to parental access to the NICU. In the context of the SEM framework, specific policies of the United Nations, the WHO and individual countries affect the behaviours of various populations at the institutional, interpersonal and intrapersonal levels, yet parents may not be able to change this fact. Several other studies of family involvement in neonatal care reported financial issues such as transportation subsidies, food, lodging and hospitalisation costs; sociocultural norms such as local customs and beliefs, preterm stigma, stigmatisation of male involvement in child care and the Chinese cultural tradition of ‘sitting the month’; and public policies such as maternal–infant separation policy, paid leave and paternity leave.41 42 48 57 58 Although our review did not reach similar conclusions, it has to be recognised that these factors are real and equally likely to have an impact on parental involvement in pain management. As such, more extensive research is needed to reveal additional influencing factors in the future.