ABSTRACT
Neonates and infants undergo various painful procedures in the neonatal intensive care unit (NICU). Family‐integrated approaches, although commonly employed for infant pain management, often fail to involve parents, leading to feelings of stress and an inability to fulfill parental roles. The aim of this systematic review was to explore the experiences of families in family‐integrated approaches to neonatal and infant pain management in the NICU. A systematic review of qualitative studies was conducted to synthesize and appraise the literature surrounding this topic. The search was performed in November 2023 across three databases (Medline, Embase, and CINAHL) yielding 362 studies, eight of which were included in this review. These were appraised using the Joanna Briggs Institute Critical Appraisal Tool. Inductive meta‐thematic analysis was used to synthesize the data. The findings of this review revealed three meta‐themes: (1) The experience of lack of parental knowledge surrounding family‐integrated approaches to infant pain management in the NICU, (2) The experience of how the NICU culture and environment affect parental participation in family‐integrated approaches to infant pain management, and (3) The experience of families and their desired level of involvement in family‐integrated approaches to infant pain management in the NICU. There are several challenges and opportunities parents experience that shape their involvement in family‐integrated approaches to infant pain management in the NICU. Future clinical practice in the NICU should emphasize parental education and foster a supportive, collaborative, and inclusive environment for parental involvement in family‐integrated approaches to infant pain management. Further research is warranted to explore the experiences of healthcare workers and fathers.
PROSPERO Registration: CRD42023492701
Keywords: family‐integrated care, newborn, parental experiences, parental participation, shared decision‐making
1. Background
Neonates (≤ 28 days) and infants (≤ 12 months) experience multiple painful procedures in the neonatal intensive care unit (NICU), including heel lancing and suctioning [1]. The average number of procedures infants undergo in the NICU ranges from 7.5 to 17.3 per day [1], and only 58.5% of cases of procedural pain may be adequately managed [2]. Procedural pain experienced by neonates and infants is associated with numerous complications including impaired neurodevelopment and increased pain sensitization later in life [3, 4, 5]. This highlights the importance of implementing strategies to address neonatal and infant pain, including family‐integrated approaches. In the context of pain management, family‐integrated approaches, also known as family‐centered care approaches, refer to a parent's or families' involvement in any infant pain management practices in the NICU, e.g., parent‐delivered interventions such as breast‐feeding during painful procedures. Family‐integrated approaches enable parents to work alongside the multidisciplinary team to provide care for their children [6]. This review focuses on family‐integrated approaches in terms of families' involvement in infant pain management in the NICU only. Parent‐delivered interventions including massage, skin‐to‐skin contact, swaddling, breastfeeding, and singing have demonstrated effectiveness in reducing infant pain [7]. Furthermore, the adoption of family‐integrated approaches in the NICU has been shown to improve the psychological wellbeing of parents [8]; however, parents are often regarded as visitors rather than caregivers in the NICU [8]. Parents consequently experience heightened levels of anxiety, stress, and depression due to not being able to fulfill their parental responsibilities [8, 9].
The existing research surrounding the experiences of families in family‐integrated approaches to neonatal and infant pain management is varied [7, 9, 10]. There is a need to systematically synthesize the available literature concerning family‐integrated approaches to neonatal and infant pain management in the NICU, in order to better capture and evaluate the experiences of families in this context. Ullsten et al. [7] noted the understudied nature of this topic, emphasizing the knowledge‐to‐practice gap in parents' experiences with delivering pain‐relieving interventions to infants in the NICU. Mäki‐Asiala et al. [10] found that there is a lack of understanding of the experiences of parents with respect to interprofessional collaboration and neonatal management of pain [10]. Evaluating the experiences of families in family‐integrated approaches to neonatal and infant pain management may highlight challenges families face and opportunities for improved care. The aim of this systematic review was to explore the experiences of families in family‐integrated approaches to neonatal and infant pain management in the NICU.
2. Methods
A systematic review integrating qualitative studies was conducted by two authors to identify what is known about the experiences of families in family‐integrated approaches to neonatal and infant pain management in the NICU. A previous review by McNair et al. [11] explored factors influencing parents' participation in infant pain management in the NICU. In this review, we took a different approach by appraising and synthesizing the existing literature on the overall experiences of families managing their infants' pain in the NICU, not just the factors influencing parental participation. The protocol for this systematic review was prospectively registered (PROSPERO registration number: CRD42023492701).
2.1. Search Strategy and Terms
The search was performed from the inception of each database to November 2023 using Medline, Embase, and CINAHL. The search strategy from Ullsten et al. [7] was utilized; however additional search terms were added to address the research aim of this systematic review. Key search terms included qualitative, pain, newborn, and parents (Appendix 1). Keywords indicating relevance were combined with keywords indicating NICU parents and mappings to headings were made wherever possible.
2.2. Eligibility Criteria
Studies were included if they sampled families of neonates or infants (≤ 12 months old) admitted to the NICU. The studies had to use qualitative methodologies and explore the experiences of families in family‐integrated approaches to neonatal and infant pain management. Studies were considered to be exploring family‐integrated approaches if they included any evidence of parental or family involvement in infant pain management practices in the NICU. Studies were excluded if they were published in non‐English, involved only quantitative data, or were syntheses of the literature (e.g., other systematic reviews).
2.3. Selection Process
Two independent reviewers utilized Covidence software (Veritas Health Innovation, Melbourne, Australia) to conduct the study screening process against the eligibility criteria. Two reviewers independently screened titles, abstracts, and full texts. A third reviewer was available to resolve any conflicts at each stage of screening.
2.4. Study Risk of Bias Assessment
Two reviewers independently appraised the quality of included studies using the Joanna Briggs Institute Critical Appraisal Tool [12]. After evaluating the quality of each study, studies were determined to either have a high, low, or uncertain level of risk of bias. Conflicts in appraisals or levels of risk of bias were resolved through discussion (Figure 1).
FIGURE 1.
PRISMA flow diagram.
2.5. Data Extraction
Two reviewers independently extracted data using a data extraction sheet. The recorded data included bibliographic details such as the author, year of publication, and the country in which the study was conducted, along with methodological data including the qualitative method used, population, and setting. Additionally, themes and supporting quotes of families specifically addressing the experiences of family‐integrated approaches to neonatal and infant pain management in the NICU were extracted in their raw form as reported in each study.
2.6. Data Synthesis
Two reviewers independently synthesized the raw quotes and themes from the included studies into meta‐themes using an inductive meta‐thematic approach. An inductive approach was considered appropriate for this review because the aim was for the meta‐themes to resemble the published data rather than being based on a theoretical framework [12, 13]. The methodology from Thomas and Harden [14] provided a three‐step process for conducting the meta‐thematic synthesis. Step one involved coding text which included reviewers independently highlighting the quotes of experiences from the included studies that summarized the respective descriptive themes. Step two involved organizing the descriptive themes of the included studies by identifying similarities and differences and subsequently forming groups of themes. This allowed for the creation of key thematic concepts that were representative of all the included studies. Step three involved the creation of meta‐themes. Likewise, once raw quotes were extracted from included studies, they were coded by two reviewers and thematically arranged to capture the experiences of families of family‐integrated approaches to pain management. The final stage required us to go beyond the key concepts of the included studies to create meta‐themes that addressed our research question. Disagreements between reviewers were first discussed and if they were unable to be reconciled, a third reviewer resolved any conflict. The meta‐themes were verified by a neonatal clinical nurse consultant (PG) and neonatal pain researcher (EI) for consistency and coherence.
3. Results
Following screening of 286 studies, 8 studies were included in this review, comprising 650 parents (Table 1). Samples in the eligible studies included mothers (n = 362), fathers (n = 119), and the gender of the parent was not reported in one study comprising 169 participants. Two qualitative methods were used to capture the experiences of families: 5 semi‐structured interviews and 3 questionnaires. The studies were conducted in various countries including 3 in the United Kingdom, 3 in Finland, 1 in Kenya, and 1 in the United Kingdom and the United States.
TABLE 1.
Summary of included studies.
| Author | Country | Qualitative method used | Population | Setting |
|---|---|---|---|---|
| Axelin et al. [15] 2010 | Finland | Semi‐structured interviews following intervention (facilitated tucking by parents), analyzed using inductive‐deductive approach | 23 mothers of preterm infants | Level three NICU in Finland |
| Franck et al. [16] 2005 | United Kingdom and United States | Questionnaire of open‐ended questions, analyzed using inductive approach | 257 parents of infants (184 mothers and 73 fathers) | Nine NICUs in the United Kingdom (seven metropolitan, two regional) and two NICUs in the United States (one on the east coast and one on the west coast) |
| Franck et al. [17] 2012 | United Kingdom | Questionnaire of open‐ended questions following a randomized controlled trial | 169 parents of infants (no reporting on the number of mothers and fathers) | Four regional NICUs in the United Kingdom |
| Gale et al. [18] 2004 | United Kingdom | Semi‐structured interviews, analyzed using inductive approach | 12 parents of infants (11 mothers and 1 father) | Two NICUs in the United Kingdom |
| Kyololo et al. [19] 2019 | Kenya | Semi‐structured interviews using photo‐elicitation technique, analyzed using inductive approach | 15 mothers of infants | Two NICUs in Kenya, including one level one Community Hospital NICU and a Federal Government level two NICU |
| Mäki‐Asiala et al. [10] 2023 | Finland | Semi‐structured interviews, analyzed using inductive‐deductive approach | 16 parents of infants (13 mothers and 3 fathers) | Five Finnish University Hospital NICUs |
| Palomaa et al. [20] 2016 | Finland | Questionnaire of open‐ended questions, analyzed using inductive approach | 140 parents (106 mothers and 34 fathers) | Level two and three NICUs in four of Finland University Hospitals |
| Skene et al. [21] 2012 | United Kingdom | Descriptive qualitative study with focused ethnography using unstructured and semi‐structured interviews | 18 (10 mothers and 8 fathers) | A regional NICU in the United Kingdom |
3.1. Quality Assessment
The studies were assessed against 10 criteria (D1–D10) to determine the risk of bias (Figure 2). This appraisal revealed two studies with low risk of bias, four studies with an uncertain level of bias, and two studies with high risk of bias. The congruity between the stated philosophical perspective and the research methodology used by researchers (criterion D1) was uncertain in all studies of this review. Five studies in this review did not provide a statement locating the researcher culturally or theoretically (criteria D6). In addition, four studies in this review did not provide a statement regarding the influence of the researcher on the research and vice versa (criterion D7), while this criterion was unclear in three studies.
FIGURE 2.
Risk of bias assessment.
3.2. Meta‐Themes
Three overarching meta‐themes were revealed using an inductive meta‐thematic analysis (Table 2): (1) The experience of families expressing their lack of knowledge about family‐integrated approaches to infant pain management, and how they can be more actively involved. (2) The experience of how the NICU culture and environment affect parental participation in infant pain management, and (3) The experience of families and their desired level of involvement in infant pain management.
TABLE 2.
Summary of meta‐themes, sub‐themes, and their supporting quotes.
| Meta‐themes | Quotes of experiences |
|---|---|
| The experience of families expressing their lack of knowledge about family‐integrated approaches to infant pain management, and how they can be more actively involved | “I think there should be a booklet available to parents with children in the NICU that explains the procedures and pain control for preterm babies.” [16, p. 136] |
| “Explain to parents what we can do to help our babies, tell us what signs to look for that the baby is in pain…” [17, p. 50] | |
| “It would have helped me to get this information very early; I like to know and understand what is going on.” [18, p. 54] | |
| The experience of how the NICU culture and environment affect parental participation in infant pain management | |
| Healthcare worker encouragement for parental participation in infant pain management | “[It was helpful] when the nurses and doctors encourage and ask us to become involved in our infant's care.” [20, p. 522] |
| “You need to have someone to stand behind you initially and teach you about his wires, etc.” [18, p. 56] | |
| “The nurses haven't told me about pain relief, or haven't urged us to participate in pain relief. I have no knowledge on the matter.” [20, p. 524] | |
| “But if you can talk to them and tell them “if you place the baby in this position the baby will calm down and will sleep”. Because it is not easy to get it without being explained to its benefits.” [19, p. 55] | |
| “Nurse didn't take the parents into account.” [20, p. 524] | |
| Parental inclusion in decision‐making regarding infant pain management | “I would have liked to have had much more involvement in discussions about my daughter's pain relief.” [16, p. 137] |
| “The information just came, and then when you try to internalize it you cannot really grasp anything. It was perhaps a bit too fast.” [10, p. 7869] | |
| “The woman is asked everything, and the man knows absolutely nothing.” [10, p. 7865] | |
| The physical environment and culture within the NICU affecting parental participation in infant pain management | “All I want to do is to be able to comfort my baby when needed. This is not always possible, how can you comfort a baby when you can't hold them due to the fact that they are in an incubator, wired up to different monitors and breathing equipment.” [17, p. 49] |
| “The room is comfortable and quiet and spacious. We are allowed to care for our children as much as we want.” [20, p. 523] | |
| “If a child comes to the department who requires emergency treatment, the facilities are very cramped!” [20, p. 523] | |
| “…and procedures are carried out at the time when parents are not possible/allowed to be there!” [20, p. 523](p. 523) | |
| The experience of families and their desired level of involvement in infant pain management | |
| The desire to be present or not in infant pain management | “I feel it is important that I'm able to comfort my child with my closeness. The closeness strengthens my motherhood. Unlike when I have to be separated from my child, I'm able to really be with my child in these situations. It really helps, I feel.” [15, p. 421] |
| “As much as is practicable. Some procedures—lumbar puncture, etc., prefer not to observe but be available to comfort straight away afterward.” [16, p. 137] | |
| “I did not want to be with my baby during painful procedures; it was too upsetting. My husband could handle it, so I would leave and have him stay. He was very helpful.” [18, p. 55] | |
| The desire to actively participate for infant pain management | “You see. It's better to be involved because after the procedure I would hold my baby and try to calm her down because after the procedure she is left all alone in pain” [19, p. 55] |
| “I stay to comfort her. I like comforting her because I know what she's been through. It's not like I want to see what's happening but be there for her. I just sit, I don't get involved but I'll comfort her and hold her hand and stuff.” [21, p. 792] | |
| “I force myself to stay there during painful procedures. I try to comfort him by talking or touching his head.” [18, p. 55] |
3.2.1. The Experiences of Families Regarding Their Lack of Knowledge of Family‐Integrated Approaches to Infant Pain Management
Parents shared similar experiences regarding their lack of knowledge and desire for more information about the timing, content, and purpose of their infants' painful procedures. Parents also raised concerns surrounding management of their infants' pain, and how they could be more actively involved using family‐integrated approaches. Ultimately, this lack of knowledge about family‐integrated approaches to neonatal and infant pain management decreased parental participation in care. Some parents reported that they would have found it helpful if they were provided with this information earlier in the hospitalization period.
3.2.2. The Experience of How the NICU Culture and Environment Affects Parental Participation in Infant Pain Management
This meta‐theme comprised three sub‐themes: (a) Healthcare worker encouragement for parental participation in infant pain management, (b) Parental inclusion in decision‐making regarding infant pain management, and (c) How the physical environment affects parental participation in infant pain management.
3.2.2.1. Healthcare Worker Encouragement for Parental Participation in Infant Pain Management
This sub‐theme describes how healthcare worker encouragement or lack thereof affects parental participation in family‐integrated approaches to infant pain management. Parents commonly experienced that encouragement to participate in infant pain management by NICU staff increased their participation, usage, and trust in the effectiveness of pain‐relieving strategies, and relieved feelings of parental stress related to their infants' pain. Parents experienced that the supportive attitudes of NICU staff towards parental participation improved parental participation in infant pain management. Supportive attitudes included wishing parents to be present during infant pain management, encouraging parental involvement in infant pain management approaches, the overall helpfulness of nurses, and communicating in a way that considers parents needs and preferences. Furthermore, parental involvement in infant pain management was improved when NICU staff recognized parents as primary caregivers, considered their opinions, and facilitated open communication channels with parents. Conversely, some parents experienced a lack of encouragement by NICU staff and reported that they would be more likely to participate in their infants' pain management if they received more support through education and feedback. Other parents expressed that they needed encouragement and support from NICU staff because they felt insecure about their ability and knowledge in managing their infants' pain.
3.2.2.2. Parental Inclusion in Decision‐Making Regarding Infant Pain Management
This sub‐theme describes how parental inclusion or lack thereof in decision‐making regarding infant pain management affects their participation in family‐integrated approaches to infant pain management. Parents commonly expressed their desire to be much more involved in discussions about their infant's pain management. Parents that were able to be involved in decision‐making described it as empowering. Parents reported that their participation in meetings to discuss their infant's pain management was irregular. Some parents only participated in meetings weekly whilst other parents wished for meetings more often. Some parents expressed feelings of equality within interprofessional collaboration; yet other parents felt the opposite in that their opinions were not encouraged or valued in relation to infant pain management. Whilst some parents lacked the opportunity to participate entirely, others reported that they felt overwhelmed in making decisions due to receiving a large amount of information over a short period of time or they felt challenged due to a lack of understanding about pain management. Lastly, some fathers experienced a lack of inclusion in infant pain management discussions with most of the focus on family‐integrated approaches being on mothers.
3.2.2.3. The Physical Environment and Culture Within the NICU Affect Parental Participation in Neonatal and Infant Pain Management
This sub‐theme describes how the physical environment and culture within the NICU affects parental participation in family‐integrated approaches to infant pain management. Some parents experienced stress in the NICU environment due to the complexity of equipment including incubators, tubes, and monitors which decreased their participation in infant pain management. Parents reported that family‐friendly facilities that were private, peaceful, comfortable, and spacious supported their participation in their infants' pain management. Furthermore, the opportunity for staying overnight near their infant, comfortable chairs, and kangaroo care chairs were also voiced to be important for increasing parental participation. Conversely, parents expressed that the lack of space in the NICU environment decreased their involvement including lack of single‐family rooms and multiple families in the same room. Parents also felt that the NICU caregiving culture and policies dampened their participation in infant pain management. This included parents not being allowed to attend medical rounds, restricted visiting hours and inappropriate timing of procedures.
3.3. The Experience of Families and Their Desired Level of Involvement in Infant Pain Management in the NICU
This theme was divided into two sub‐themes which represented the spectrum of parental involvement in infant pain management in the NICU.
3.3.1. The Desire to Be Present or Not for Infant Pain Management
This sub‐theme describes the experience of parents' desire to be present in the room with their infant during painful procedures. Parents commonly report that they would like to be close to their infant during painful procedures because they felt it was important for providing comfort and support. Conversely, some parents choose not to be present during certain painful procedures including lumbar punctures and intubation due to the stressful nature of the procedures. One mother reported that she was too upset to attend her infant's painful procedure but expressed that she experienced less stress because her husband was able to attend [18].
3.3.2. The Desire to Actively Participate in Infant Pain Management
This sub‐theme describes the experiences of parents to not only be present, but also actively participate in their infants' pain management. Most parents expressed a desire to actively participate in their infants' pain management as much as possible through strategies including tucking, talking, skin‐to‐skin contact, hand holding, and breastfeeding. Parents felt satisfied when they were able to actively participate in their infants' pain management and felt it was important.
4. Discussion
4.1. Summary of Findings
The findings highlight a lack of parental knowledge surrounding family‐integrated approaches to infant pain management in the NICU, and the desire of parents to know how they can be actively involved. The findings also emphasize how the NICU culture and environment affect parental participation in family‐integrated approaches to infant pain management in the NICU. Factors including healthcare worker encouragement, and parental inclusion in decision‐making also affect parental involvement in family‐integrated approaches to infant pain management in the NICU. Importantly, the level of parental involvement in family‐integrated approaches to infant pain management in the NICU exists on a spectrum, ranging from non‐presence during painful procedures, to passive observers, to active participants in infant pain management. External factors including the NICU environment, culture, and enablement by healthcare workers may affect the desired level of involvement of parents.
4.2. Comparison of Findings to the Literature
The experience of parents having limited knowledge of family‐integrated approaches to infant pain management is supported by the available literature [7, 11, 22]. Parents rely upon healthcare workers to provide this information [22], which is why some parents report being dissatisfied with the amount of information they receive leaving them feeling frustrated and unprepared [11]. This lack of knowledge is associated with reduced parental involvement in infant pain management in the NICU [22]. The findings of this review highlight the importance of family education on pain management. Indeed, parents report that being informed was empowering, relieved feelings of stress associated with infant pain, and increased their participation in infant pain management [22]. The timing of the provision of information was also a topic of concern, with parents expressing that they would have liked to receive it earlier to increase their preparedness for infant pain management [7]. Future clinical practice in the NICU should therefore focus on providing education to parents on how they can manage their infant's pain.
Parents commonly desire support and encouragement from NICU healthcare workers to participate in infant pain management due to either a lack of knowledge and/or feelings of insecurity in their ability to manage their infants' pain [7, 11, 22]. In particular, supportive attitudes and behaviors of NICU healthcare workers often result in increased parental involvement in infant pain management [11, 22]. Some parents preferred if NICU staff initiated support and encouragement, without having to ask for it [22]. Furthermore, our findings suggest that NICU healthcare worker support and encouragement for parental participation in infant pain management in the NICU increase parental usage and trust in the effectiveness of family‐integrated approaches and reduce feelings of parental stress related to infant pain. Future clinical practice in the NICU should therefore focus on creating an environment in which NICU healthcare workers support and encourage parents to participate in infant pain management.
Parents in the NICU want to participate in decision‐making regarding their infant's pain management [10, 23]. Our findings suggest that parents feel excluded from decision‐making due to a variety of factors including the irregularity and/or infrequency of meetings, feelings of inequality in decision‐making, feeling overwhelmed due to the amount of information provided, or lacking knowledge regarding infant pain management. The existing literature supports the notion that parents feel a sense of inequality within shared decision‐making regarding infant pain management in the NICU [10, 23, 24]. Fathers, in particular, express a lack of knowledge and inclusion in their infant's pain management [10, 25, 26]. This occurs despite their vital role in supporting mothers during their infant's admission [27]. Societal expectations of care are often gendered, placing a greater burden on mothers than on fathers in the NICU [25]. NICU healthcare professionals may also facilitate this by continuing to focus on mothers [26]. Future studies are needed to better inform strategies for engaging fathers as equal co‐parents and as research participants. However, responsibilities outside the NICU likely challenge their participation and availability. Further research is required to explore the experiences of fathers in infant pain management in the NICU, as they are generally underrepresented in practice and research [26]. Future clinical practice in the NICU should therefore focus on creating a collaborative environment by scheduling regular meetings, educating all parents on knowledge gaps, tailoring communication to the health literacy of the parents, and providing information in a way that is not overwhelming. Further emphasis should also be placed on NICU healthcare workers to include fathers in family‐integrated approaches to neonatal and infant pain management.
The culture within the NICU may position healthcare workers as gatekeepers, whereby parents are excluded from participation in infant pain management [7, 11, 22]. This often occurs through healthcare workers asking parents to leave the room during painful procedures, causing parents to feel like they are not invited or allowed to participate in infant pain management [7, 11, 22]. Interestingly, healthcare workers often judge the ability of parents to participate in infant pain management without consideration of their ability or willingness to participate [11]. These findings suggest there is a culture of parental exclusion which hinders parental involvement in family‐integrated approaches to infant pain management in the NICU. Future clinical practice in the NICU should aim to foster a culture of inclusion of parents in infant pain management. This can be achieved through greater parent‐healthcare worker collaboration and NICU healthcare worker encouragement and support for parental participation in infant pain management.
Aspects of the physical environment in the NICU including a lack of space, a lack of privacy, uncomfortable rooms, and the absence of family‐friendly facilities, may decrease parental participation in infant pain management [7, 11]. Additionally, our findings suggest that parents' unfamiliarity with the NICU equipment (tubes, incubators, and monitors) is a cause of parental stress that may decrease parental participation in infant pain management. Future clinical practice in the NICU should aim to create environments that provide family‐friendly facilities that are spacious, comfortable, and private to increase parental involvement in infant pain management. This would be dependent on the availability of funding. Furthermore, educating parents about NICU equipment may decrease parental stress associated with the physical environment and increase parental participation in infant pain management. Certain NICU policies can limit parental involvement in infant pain management including restrictive visiting hours and the inability of parents to attend medical rounds and painful procedures [11]. Future clinical practice in the NICU should aim to review NICU policies to allow for increased parental involvement in infant pain management. Future research could include parent interviews and focus groups to explore parents' perspectives on infant pain management practices in the NICU.
Most parents want to be present and actively involved in their infants' pain management to comfort their child [7, 22]. Some parents who are actively involved feel uncomfortable, but still decide to participate actively because they feel they have an important role to play in managing their infants' pain [7]. Some parents decide not to be present at all due to emotional distress, which may make them feel they are not fulfilling their parental role [11, 22]. Interestingly, parents felt that one parent should always be present during painful procedures in the event that one cannot attend [22]. Possible explanations for varying levels of parental involvement in infant pain management in the NICU include differing levels of parental experiences and knowledge in this setting [21]. Future clinical practice within the NICU should include healthcare workers listening to families to determine their level of involvement overtime as this may change.
An important knowledge gap identified in this systematic review relates to parental readiness for involvement in infant pain management. While many parents expressed a desire to participate, few studies explored whether parents felt prepared, confident, or adequately supported to take on caregiving roles. Readiness likely influences not only the extent of parental involvement but also the emotional experiences and emotional impact of participation on parents. Understanding the factors that shape parental readiness, including health literacy, prior experience, and the support provided by NICU staff, is critical for developing effective implementation strategies. Future research should therefore examine parental readiness as a determinant of engagement in pain management and as a target for interventions designed to optimize parent and infant outcomes.
4.3. Limitations
This systematic review has numerous limitations that must be considered when interpreting the findings. The exclusion of non‐English research in this review may limit the generalisability of the findings within a global context, as the experiences of parents in other non‐English speaking countries not included in this review were not considered. Additionally, there is potential bias from the included studies as established in the risk of bias assessment. Specifically, criteria D1 present an uncertain level of bias in all of the included studies in the congruity between the stated philosophical perspective and the research methodology. Lastly, only three databases were used in the search which may lead to missed research.
4.4. Conclusion
This systematic review synthesized and appraised the experiences of families in family‐integrated approaches to infant and neonatal pain management in the NICU. The findings highlight challenges and opportunities parents experience that impact their involvement in family‐integrated approaches to infant pain management in the NICU. Future clinical practice in the NICU may address these challenges through emphasizing parental education and fostering a NICU environment that is supportive, collaborative, and inclusive of all parents and their involvement in infant pain management. Future research should explore the experiences of healthcare workers and fathers in family‐integrated approaches to infant and neonatal pain management. This will allow us to understand the challenges they face and may lead to improved delivery of family‐integrated approaches to infant and neonatal pain management in the NICU. This systematic review also highlights existing knowledge gaps regarding parental readiness to participate in pain management, indicating a need for further research.
Conflicts of Interest
The authors declare no conflicts of interest.
Supporting information
Appendix 1: pne270017‐sup‐0001‐Appendix 1.docx.
Goddard J., Homfray J., Govindaswamy P., and Ilhan E., “The Experiences of Families in Family‐Integrated Approaches to Neonatal and Infant Pain Management in the Neonatal Intensive Care Unit: A Systematic Review,” Paediatric and Neonatal Pain 8, no. 2 (2026): e70017, 10.1002/pne2.70017.
Funding: The authors received no specific funding for this study.
Contributor Information
James Goddard, Email: jamesdanielgoddard@gmail.com.
Emre Ilhan, Email: emre.ilhan@mq.edu.au.
Data Availability Statement
The data used in this systematic review is publicly available online and is referenced in the reference section of this manuscript.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Appendix 1: pne270017‐sup‐0001‐Appendix 1.docx.
Data Availability Statement
The data used in this systematic review is publicly available online and is referenced in the reference section of this manuscript.