Peer Reviewed Articles on Patient Family Centered Care in Pediatric Nursing
Front Pediatr. 2021; 9: 725040.
Parents' Views of Family unit-Centered Intendance at a Pediatric Intensive Intendance Unit of measurement—A Qualitative Report
Karina Terp
1Department of Health Sciences, Lund Academy, Lund, Sweden
Janne Weis
2Department of Neonatology, Copenhagen University Hospital, Copenhagen, Kingdom of denmark
Pia Lundqvist
1Department of Health Sciences, Lund University, Lund, Sweden
Received 2021 Jun 14; Accepted 2021 Aug four.
- Information Availability Statement
-
The datasets presented in this article are non bachelor because the information in the nowadays study is based on sensitive information from parents' when their critical sick child was hospitalized in a pediatric intensive care unit. Although all data is anonymized, it contains information and details that could enable identification of single individuals. According to the ethical approval and the General Data Protection Rules (GDPR) data would only be used for the stated purpose and merely be available for the researchers. Therefore, we stated in the in written information to the participants that data will not be shared. Requests to access the datasets should be directed to Karina Terp, es.ul.dem@pret.anirak.
Abstract
Purpose: To draw parents' views of family unit-centered intendance at a pediatric intensive care unit.
Pattern and Methods: A qualitative descriptive study with a deductive and inductive approach was conducted based on the principles of family-centered intendance. Inclusion criteria were parents of children cared for at a pediatric intensive care unit for at to the lowest degree 48 h. Parents of children who died during the hospital stay were excluded. The sample consisted of spontaneous responses from 70 parents to five open questions in the EMpowerment of PArents in THe Intensive Care questionnaire, which was completed at belch. The spontaneous responses were analyzed using thematic analysis.
Results: The analysis of the parents' argument illuminated that partnership, the essence of family-centered care, appeared incomplete. Partnership was particularly axiomatic regarding parents' experiences of being treated with empathy and respect. Information technology also seemed prominent in situations where the professional team provided support to the kid, parents, and family. Based on the parents' statements there was potential for development of the family unit-centered intendance approach in aspects such equally decision-making concerning care and treatment, as well as improving person-centered communication on order to capture parents' experiences and needs in the highly technological pediatric intensive intendance unit environment.
Conclusions: Although in general parents were satisfied with the care, areas for improvement were identified such equally participation in controlling nearly care and treatment as well as person-centered communication. The results can contribute to time to come quality improvement interventions focusing family centered care at pediatric intensive care units.
Keywords: family-centered care, pediatric intensive intendance, parent satisfaction, partnership, quality of intendance, qualitative approach
Introduction
Medical and technical development every bit well as improved nursing care have resulted in better outcomes and increased survival rates for children in need of pediatric intensive care. In Sweden, pediatric intensive care unit of measurement (PICU) admissions increased past 14% betwixt 2010 and 2019 (1). One reason for the increased admission rates might be that improvements in pediatric care have resulted in more advanced medical care at a PICU. Another reason can be our growing population, every bit the child (0–18 years) population in Sweden increased past about 10% between 2010 and 2019 (ii). Consequently, more than parents and families are living through the pediatric intensive intendance experience.
Previous studies have shown that parents of children cared for at a PICU feel stress due to the unfamiliar environment with an intense atmosphere, technological medical equipment, and monitors with sounds and alarms (3, 4). Furthermore, the child's changed appearance and behavior due to her/his status and medical treatment might negatively bear on the parents (v, 6), placing them at risk of developing both astute- and mail service-traumatic stress disorder. Symptoms such as anxiety, difficulties concentrating and sleep problems have been reported (6–viii).
Organizing pediatric intensive intendance in accordance with the principles of family unit-centered intendance (FCC) seems to be beneficial for parents both during hospitalization and mail service-belch, as it supports the parental role and strengthens family unit operation (ix, 10). Coyne (xi) describes that parents considered FCC of import for their child's well-being as they found that their specific knowledge virtually the child was cardinal for the quality of the care provided (11). The Constitute for Patient and Family-Centered Care emphasizes that the purpose of FCC is to achieve "partnership" between patient, families, and healthcare professionals (HCPs) characterized by common respect and dignity, sharing of professional every bit well equally person-specific data, and inclusion of patient and family in the care as well every bit in decisions virtually intendance and handling (12). FCC advocates parents' active participation in care planning and handling which increases their confidence likewise as satisfaction with intendance (13). Furthermore, parents, every bit well as nurses, reported that the child becomes more than confident and calmer when a parent is nearby during the hospital stay (11).
Communication is essential in FCC as it affects the manner data is shared between the HCPs, the parents, and the child. In some cases, the child is unable to speak for her/himself due to young age, sedative medicine, or care on a ventilator (fourteen, xv). Foster et al. (xvi) showed that parents viewed good communication with HCPs equally significant and wanted to be well-informed about their child's care during her/his hospital stay. In social club to piece of work in accord with the principles of FCC, nurses need to change their professional arroyo from being the sole "expert" to inviting next of kin and the patient to participate in the planning and implementation of intendance (16). This highlights a need for knowledge and experience of communication styles, such equally person-centered communication, which is based on a dialogue between the person being cared for, her/his next of kin, and the HCPs (17, 18).
Information technology has also been established that parents' satisfaction with care increases when the healthcare team works according to the principles of FCC. Previous studies have shown that working in accordance with FCC improves both the child'south and the parents' well-beingness, and increases the prophylactic of the child (13, xix). Despite this knowledge, it appears to be difficult to fully implement FCC in practice (20). However, trivial is known well-nigh parents' views of FCC related to pediatric intensive care in Swedish settings. Parents' experiences can guide the further evolution, implementation and adaptation of FCC in the PICU context to meet both children'due south and parents' needs, leading to a sustainable outcome.
Aim
To describe parents' views of family-centered care in a pediatric intensive care unit.
Methods
Design
In the present written report, a qualitative descriptive method with a deductive and inductive approach (21) was used. The study was conducted as role of a larger study to psychometrically evaluate the EMpowerment of PArents in THe Intensive Care (EMPATHIC-thirty) questionnaire past Latour et al. (22) in a Swedish setting.
Setting
The study was conducted in two out of the four Swedish PICUs. Each unit of measurement has near 350 admissions per year. Each of the study units contains eight–12 beds, where the variation in the number of beds is mainly due to organizational reasons such as reduced staffing during weekends and holiday periods. The units primarily treat children from within their own catchment area, although children in need of high technological care can be referred from hospitals outside the PICUs' catchment area. The units take unlimited access for parents, siblings, and other relatives. In the intensive care room, the parents cannot spend the night in a bed next to the child due to limited space but are offered a chair. However, all parents and siblings are offered accommodation at a Ronald Mc Donald house nearby. The units have both single and multi-bedded rooms. Parents are normally not present during the daily rounds simply are informed by the physicians afterwards. They are ordinarily invited to attend intendance procedures, including cardiopulmonary resuscitation. The physician responsible for the kid may vary on a weekly ground due to the physicians' schedule. The healthcare professional team in this study comprises physicians, nurses, and banana nurses.
Sample
The sample consists of parents' spontaneous responses to the 5 open questions (Figure 1) in the Swedish version of the Empathic-xxx questionnaire. The translation of the Swedish EMPATHIC-30 followed methodological procedures and psychometric evaluation. Inclusion criteria were parents whose kid had been cared for at the PICU for at least 48 h and who had a good command of both spoken and written Swedish. An exclusion criterion was parents of children who died during hospitalization.
The five open up-ended questions in the EMPATHIC-xxx. *Added questions in the Swedish version.
In total 234 questionnaires were distributed, and the response rate was 42.7% (n = 100). Iii questionnaires were excluded due to not meeting the inclusion criteria (n = 2) or being returned blank (due north = one). Of the final 97 questionnaires, 72 % (n = 70) were included in this study (mothers: north = 40; fathers: n = 30). The 27 excluded questionnaires had either no responses to the open questions or they were but answered briefly with, e.g., good.
Instrument
EMPATHIC-xxx is an instrument measuring parents' satisfaction when their child is cared for at a PICU. The questionnaire consists of v domains that correspond with the concepts of FCC: information, care and cure, system, parental participation, and professional attitude. The parents charge per unit their experiences on a half-dozen-point Likert scale ranging from 1 "certainly no" to 6 "certainly yes" or Not Applicative (NA). The original EMPATHIC-xxx concludes with four open-ended questions inviting parents to describe their experiences of their fourth dimension at the PICU in free text. In the Swedish version, one more question was added with a focus on the parents' experiences of participating in the child's intendance (Figure 1). The EMPATHIC-30 was developed and psychometrically evaluated in the Dutch linguistic communication and showed a satisfactory result, with Cronbach'southward Alpha varying between 0.73 and 0.83 for the domains and 0.93 for the total scale (22). The instrument has been translated into other languages with acceptable psychometric properties (23, 24). Permission to translate and psychometrically evaluate the Empathic-xxx was obtained from the original author (Latour J.).
Data Collection
Parents who met the inclusion criteria received brief oral information about the study from the nursing staff at the ward in connection with the child'due south discharge from the PICU. Those who were interested in participating received an envelope with written information almost the study, a document for informed consent, the EMPATHIC-30 questionnaire and a pre-stamped envelope. If parents had not been asked to participate before the kid was discharged, a short alphabetic character informing them about the report and an envelope with information as described above were sent to them past post by a secretarial assistant at the PICU. Data drove took place from February 2018 to September 2020.
Framework
The theoretical FCC framework in the present report was the "Patient- and Family unit-Centered Intendance" (PFCC) model as defined by the Institute for patient and family-centered care (12). According to the chosen framework, it is the patient and her/his family who define their family. The patient and family are viewed as essential allies in a mutually respectful partnership and determine the extent to which they wish to participate in intendance and decision making. The iv core concepts in the framework are: Nobility and Respect, highlighting the importance of the professional squad listening to the wishes of the patient and family, equally well as respecting their values and cultural background; Data Sharing, which refers to collaboration through mutual information sharing between the patient, family, and professionals. The importance of continuous, honest, and accurate information is emphasized equally necessary for integrating patients and families in decision-making; Participation, representing professionals' encouragement and support to motivate the patient and family unit to participate in care and decisions co-ordinate to their ain ability and desires; Collaboration includes the role of patients, families, the professional healthcare squad, and healthcare leaders in policy and program evolution, research activities, and intendance delivery. Partnership is achieved when cooperation between patient, family, and HCPs is proficient in accordance with the core concepts in the framework (12).
Data Analysis
First, a deductive thematic analysis guided by the core concepts of FCC in the PFCC model (12) was conducted in accordance with Braun and Clarke (21). Initially, familiarization with the data was obtained by reading and rereading the text. The data were then carefully reviewed and compiled in a split document, providing an overview of the entirety of the information. The data were then deductively coded based on the PFCC core concepts: Dignity and respect, Information sharing, Participation, and Collaboration (12), which constituted the themes. Subsequently, the start author (KT) inductively sorted and coded the statements within each theme, and and so grouped codes with a similar content into subthemes. All authors discussed the codes and subthemes until consensus was accomplished (21).
Ethical Considerations
The study was canonical past the regional ethical review lath in Lund (Ref 2018/547, 2019-04602) and was conducted in accordance with the Helsinki Annunciation of 2013 (25). The parents recruited at the units received oral and written information earlier their child'due south discharge, while those who were included after their child's discharge received extensive written data. The written information stated that participation was voluntary, that they could withdraw at whatsoever time without giving a reason, and that confidentiality was ensured. Written informed consent was obtained.
Results
A variety of patterns inside the data emerged during the assay of the 70 parents' statements pertaining to the open questions in the EMPATHIC-30. Parent characteristics are presented in Table 1. The children (n = 46) varied in age from newborn to 15-years and duration of their hospital stay varied betwixt two and 84 days. The children's characteristics tin be found in Table 1.
Tabular array 1
Characteristics of participants included in the written report.
| Participants | Percentage | |
|---|---|---|
| (n = 70) | (%) | |
| Parents | ||
| Mothers | forty | 58 |
| Fathers | 30 | 42 |
| Parents' historic period | ||
| Hateful | 37 | |
| Range | 32 (23–55) | |
| Education level | ||
| • Primary schoolhouse | 2 | iii |
| • High school | 24 | 34 |
| • University/college | 41 | 59 |
| • Other education | 2 | 3 |
| Ethnicity | ||
| • Swedish | 63 | 90 |
| • European | six | 9 |
| • Other | 1 | 1 |
| Parents' previous feel of PICU | ||
| Yep | 14 | twenty |
| No | 56 | 80 |
| Child's age n = 47 | ||
| • 0–6 years | 43 | 91 |
| • 7–xviii years | 4 | ix |
| Length of stay | ||
| • 2 days | 7 | 10 |
| • 3–seven days | 32 | 46 |
| • 8–10 days | 5 | 7 |
| • >10 days | 26 | 37 |
| Mechanical ventilation ( north = 47) | ||
| • Yes | 44 | 93 |
| • No | three | 7 |
An incomplete partnership was the overarching theme reflecting parents' views of FCC at a PICU. An incomplete partnership emerged due to the fact that the content of parents' statements reflecting partnership appeared more prominent in some of the chief themes than in others. Partnership became particularly evident in the parents' experiences of being treated with empathy and respect, equally well as in situations where the professional team provided support for the child, parents, and family as a whole. Still, at that place was potential for development when it came to achieving partnership in aspects such equally taking an active role in decisions concerning intendance and treatment, too as in person-centered communication that could capture parents' experiences and needs in the PICU's loftier technological environment. The overarching theme, themes, and subthemes are presented in Figure 2.
Overarching theme, main themes, and subthemes.
Dignity and Respect
Encountering a Caring and Inclusive Atmosphere Enables Support
Although parents described a cluttered time and being in a state of daze, which made information technology difficult for them to handle the situation of having a kid in need of pediatric intensive intendance, they felt well-cared for from their first encounter with the HCPs at the PICU. They experienced that the members of the professional team did their utmost for the kid and family unit, even when they had a heavy workload. The parents felt supported in their overwhelming situation when they received attention from the professionals on the squad, which in turn strengthened their relationship.
"Despite all the difficult information, operations and such it felt wonderful to be surrounded past all those fine people." (J)
Although the parents considered the professional squad treated them well and with respect, some felt that they needed more support and understanding. They described shortcomings, especially when the child had disabilities.
"I think that information technology should be possible to accommodate the care to the patient." (G)
The parents described feeling ignored when their expertise equally a parent was non requested, such as how to best approach their child in caring situations. Parents also wished that some of the professionals would accept exhibited a gentler approach toward their child.
Parental Trust Was Increased past Continuity and Competence in the Professional Squad
Even though the parents experienced fear and anxiety about their child'southward status, likewise every bit the ongoing medical intendance and handling, they constitute that the PICU itself created a sense of security. They described that the professional team delivered high-quality care. The professional team'southward competence induced confidence in the parents, fifty-fifty when emergencies occurred. They described the professional person team as calm and acting in a style that created a sense of trust. When necessary, the parents felt safe about handing over their child'southward care to the professional person team. They also felt able to get out the PICU in the knowledge that their child was well-taken intendance of.
"I felt incredibly secure knowing that our child was receiving the best possible intendance." (C)
On the other hand, when contradictory opinions about the child'south care and treatment occurred amongst the professional team, the parents became unsure nearly the professionals' competence, which was a source of stress. Frequent staff changes in the professional squad around the child also created a sense of insecurity amongst parents. From their perspective, everything functioned all-time when the professional team members knew them and their child.
"In my view one negative attribute is new staff all the time. Doctors every bit well equally nurses. And so much extra piece of work for everybody." (I)
Discharge was associated with conflicting emotions. The parents found it difficult to exit the safe PICU surroundings and the highly competent professional squad. Despite the fact that it was positive that the child had recovered and could be transferred to an ordinary pediatric unit of measurement, they felt anxious well-nigh having to have responsibleness for the child'south continued daily care. The need to create relationships with new staff members was also stressful for them.
"Leaving the intensive intendance unit and coming to an ordinary ward e'er feels a little unsafe." (U)
Parents of children with disabilities experienced the high competence of the PICU staff as relief from their role equally a chief caregiver. They felt safety handing over the responsibility for their child's daily intendance to the professional team.
"That was the first fourth dimension I felt prophylactic handing over responsibility" (M)
Data Sharing
The Significance of Continuous Individualized Data
The parents felt supported when they received continuous data from the professional person team about their child's care. They felt they could ask questions without feeling foolish. If the child'south condition changed, the professional squad took the time to explain the current state of affairs and go through the changes in care and treatment. The parents experienced that the professional team focused on the whole family, and when necessary, the information was even comprehensible for siblings.
"…the staff members took the time to explain everything they did, even to the older sister." (B)
Parents also valued data about situations that occurred when they were not present, such equally during surgery or transport between different units. In astute situations, the professional team members focused on the critically sick child and put broadcasting of information on hold. However, every bit soon every bit the situation allowed, the parents reported receiving attending from a team member who informed them about the critical situation.
"…when everything had calmed downwards and was over the staff members were very caring towards united states and gave us a lot of data and support." (A)
Conversely, parents likewise mentioned times when they had not received adequate data or experienced that information had been withheld. They speculated that this might have been because the healthcare team assumed they could not comprehend the data. The parents expressed that no matter how bad the state of affairs was they wanted the HCPs to share all information about the child'south condition with them.
"Just we didn't sympathize the seriousness of our child's situation until information technology became VERY serious. If this was down to poor information or that nosotros didn't want to assimilate information technology, I don't know. Probably both." (I)
Handling Transitions Through Information
Despite feelings of anxiety when their kid was transferred from the pediatric unit of measurement, parents felt capable of handling the situation if they were properly informed prior to the transition. Being involved in transfer planning and having an opportunity to visit the new unit or see the professional team there before the transfer were perceived as positive by the parents.
"…of course nosotros wanted to stay there and were a bit scared about changing to the ward – but both doctors and nurses helped us to handle our anxiety!" (D)
Transitions were challenging for the families. About challenging was the shift from high technological care to an ordinary pediatric unit. One parent stated:
"Overwhelming, like going from the Hilton to a youth hostel." (H)
Parents had a negative experience of the transfer to another unit when they were not informed in advance. They felt overtaken past the decision and, in some cases, did not believe that their child was well-plenty to be transferred.
Participation
Establishing a Partnership Based on Sensitivity to Parental Strengths and Vulnerability
Parents described developing a valuable human relationship with the professional team and felt included every bit role of the team. They experienced collaboration with the professional team as efficient, and that the team members were responsive to their wishes when planning the kid's intendance. When parents were exhausted, they felt the members of the professional team were sensitive to the fact that they lacked the energy to participate in the child's care. When this happened, the team cooperated with the parents and offered them space and fourth dimension for recovery, as well every bit support from a social worker or psychologist. This helped the family to handle the situation.
"…Nosotros could be involved as much as we wanted without feeling whatsoever kind of pressure …" (Thousand)
However, some parents did not wish to participate in their child's care planning and determination-making because they believed they lacked the required skills.
"I don't await to 'be actively involved in the determination process' when my child is undergoing intensive care." (O)
Parents as well described occasions when they were not fully satisfied with their child'due south care, especially when they had wishes that differed from the plans of the professional team. When this occurred, parents felt overlooked. In some cases, they considered that the kid received poorer care because their participation was neglected, causing them to feel stressed and frustrated.
"The staff should listen more to the parents" (Y)
Feeling Valuable When Participating but Needing Encouragement
The parents appreciated being encouraged to participate in their child'southward care. Being able to practise something valuable for their child fabricated them feel important. They stated that the professional team respected the extent to which they wanted to participate, which mainly involved practical tasks such equally bathing, feeding, and changing diapers. If they felt confident and ready for more avant-garde daily care, the professional squad supported them step by step, in accordance with the parents' wishes and capabilities.
"The staff members were very professional and responsive and good at explaining things to us in piece of cake steps so that we felt condom and confident." (C)
At the same time parents described that their participation in their child's care depended on the willingness of individual members of the professional person team to invite them. Some were more probable to allow them to participate, while others excluded them.
"A negative attribute when we came here was that I wasn't immune to be in the room only had to wait in the relatives' room. Which for me was a disappointment not to be in that location with them and be close." (F)
When the staff performed care procedures based on routines and did not include them, they felt excluded as a parent. This was also the case when they were left out of discussions concerning their kid's care and handling.
Collaboration
Unmet Needs Resulting in Suggestions for Possible Improvements
During their child's hospitalization, the parents expressed needs indicating the necessity for improvements in the unit of measurement. Parents described a need for a private space where they could be alone to e.g., breastfeed and talk with their spouse as well as a room for resting. The parents would accept appreciated been shown around the unit and receiving information about where they could ready their food, eat or make a cup of coffee. They found information technology frustrating that they were unable to figure this out until several days afterward their child had been admitted to the PICU. They expressed that knowing about the being of these facilities at the ward could have helped them to remain close to their child when they wanted a cup of coffee or something to eat.
The parents wished for more than comfy pillows, duvets, and ergonomic chairs, every bit they often spent many hours at the PICU. This became even more evident for mothers who had recently given birth.
"…to the parents, an ergonomic chair or cushion. You are sitting there with your kid for hours and want to be close." (E)
Discussion
In the present study, parents' views of FCC were described equally "an incomplete partnership." Our findings identified "partnership" between parents and HCPs every bit more evident in some of the framework concepts than in others. Co-ordinate to the Institute for patient and family-centered intendance, partnership betwixt patients, families, and HCPs constitutes the essence when the cadre concepts of FCC are achieved (12). As in other intendance settings, achieving partnership in pediatric intensive care requires an established relationship and collaboration between the child, her/his family, and the HCPs that is grounded in mutuality and where they jointly set and attain the goals for the child's care (nine, 12). In the present study, it appeared that the parents experienced that partnership was partially achieved when they were treated with empathy and respect, and support was provided for the child, parents, and the family every bit a whole. This is in line with the results from earlier studies, elucidating how emotional support from the professional person team strengthens the human relationship and interaction between the team and the parents. This course of caring is significant for FCC and considered ane of its key aspects (26–28).
Although the parents were generally positive and satisfied with the FCC, a number of areas emerged with potential for development. One such area was the core concept "Information sharing," where in that location were occasions when parents felt that the professional person team withheld information to "protect" them or they were given information at very short observe, e.1000., before transfer to some other unit, which caused them stress and anxiety. Transfer from the PICU to another pediatric unit with a lower level of care is often associated with distress for the parents (29) and they therefore need to be prepared well in advance. In their study, Hakio et al. (xxx) showed that parents who had been informed and prepared for a transfer in proficient time had fewer negative experiences. Even so, our findings illustrate that parents were mainly satisfied with the information they received. They found that the professional team adjusted information based on who they were talking to and that siblings were given historic period-appropriate information. Beingness well-informed created a sense of security amid the parents. This is in line with earlier studies showing that good communication between parents and the healthcare team reduces parental stress and increases satisfaction. It also provides opportunities for parents to participate in decision-making regarding their child's intendance and treatment. Ultimately, good communication enables both the kid and the family to be partners in care based on the principles of FCC (31, 32). Communication is of importance when sharing information. Data provided in the form of one-way communication may non meet the parents' needs. Foster, Whitehead, and Maybee (33) refer to communication equally a primary tool for achieving FCC. Working according to FCC principles requires extensive knowledge of person-centered communication, which is a two-fashion communication style that takes the parents' perspective into consideration when adjusting complete and authentic information to be shared betwixt the parents and HCPs (17, 18).
In the nowadays study, the parents described occasions when the professional team did non collaborate with them about their child's intendance and treatment. 1 reason for this may be that due to a high workload the professional team ofttimes worked according to routines rather than relation-based care incorporating the parents and kid. Shields et al. (34) described various caregiving models, eastward.g., the professional person-led model and the professional person-centered model. When these models are employed, HCPs provide care based on the diagnosis and the department's guidelines for the organisation of care rather than tailored to the individual needs of the child and her/his family. Support from the organization (35, 36) as well as education virtually FCC comprising the cadre concepts and the overall goal of the care model (27, 37) are required for the successful implementation of FCC.
The development of a partnership is dependent on close collaboration between the parents and the HCPs (12). It was evident that when lack of continuity in staffing occurred, the parents in our study became distressed and the human relationship established between them and the professionals was interrupted. This finding is consequent with the study by Gill et al. (27). In that location can exist several reasons why continuity is non achieved, for example there may be schematic reasons or staff shortages on the unit. When staff continuity cannot be achieved, this tin can be bridged by clear individual intendance plans developed in collaboration with the parents according to the principles of FCC. Individual care plans are ofttimes used in palliative intendance likewise as during end-of-life care at the PICU in lodge to fulfill the parents' and the child'southward wishes (38).
A strength of the present report is that due to the inclusion criteria at that place is a variation in the children's length of stay at the PICU. We may have captured a broader view of FCC as the length of stay varied from 2 to 84 days, in add-on to the variation in diagnosis. Parents might experience and view FCC differently depending on the severity of their kid's status and whether the intendance was due to planned surgery, or an acute incident. Another strength is the articulate methodological description providing the reader with a possibility to appraise the confirmability (39). Regarding pre-understanding, the three authors have no PICU experience, although their background is loftier technological intendance ranging from intensive neonatal and adult care to anesthesiology and ambulance care. However, at that place are some limitations. Parents whose kid died during hospitalization were excluded and it is possible that they might have different experiences to those of the parents in the nowadays written report. The information were based on 5 open questions from the EMPATHIC-30 questionnaire. This implies that nosotros were unable to pose follow-upward questions or inquire for clarification. On the other hand, the parents wrote many detailed descriptions of their experiences, providing rich data for the analysis and thereby the structures of the parents' experiences were extensive. Furthermore, using the information the parents provided through written descriptions allowed us to proceeds an insight into their experiences without having to request their time for an interview. When a child has been cared for at a PICU, parents are often in a vulnerable situation (4) and an interview might only increment their burden. Data drove was ongoing for a long period, which might have involved changes in intendance procedures, working methods, and greater sensation of the FCC concept on the part of staff. When discussing transferability it should be borne in mind that PICUs in Sweden and internationally are not designed in the same manner, they take different resources, internal policies, and distribution of staff. However, the findings tin can guide the further development of FCC in pediatric intensive care.
Conclusion
Overall, the parents described positive experiences of FCC at the PICU. Although parents in general were satisfied with the care during their child'due south hospitalization, areas for improvement in terms of achieving partnership were identified, mainly in aspects such equally participation in conclusion-making about care and handling besides as person-centered communication. The input from the parents in our study is valuable and can contribute to the pattern of interventions for quality improvement in FCC at PICUS. These findings emphasize the importance of using an instrument that focuses on satisfaction with care as the results can serve as a quality indicator of care delivery.
Data Availability Statement
The datasets presented in this article are not available because the data in the present written report is based on sensitive information from parents' when their disquisitional ill kid was hospitalized in a pediatric intensive care unit. Although all data is anonymized, it contains information and details that could enable identification of single individuals. According to the upstanding approval and the General Data Protection Rules (GDPR) data would merely be used for the stated purpose and only be available for the researchers. Therefore, we stated in the in written data to the participants that data will not be shared. Requests to admission the datasets should exist directed to Karina Terp, es.ul.dem@pret.anirak.
Ethics Statement
The studies involving human participants were reviewed and canonical by regional ethical review lath in Lund (Ref 2018/547, 2019-04602) and was conducted in accordance with the Helsinki Declaration of 2013 (25). The participants provided their written informed consent to participate in this study.
Writer Contributions
This study was designed past PL, KT, and JW. PL led the enquiry as a senior researcher. KT performed the data collection and was responsible for the analysis discussing the result with PL and JW throughout the process and wrote the manuscript. PL and JW contributed with their expertise during the process of writing all parts of the article. All authors read and approved the final manuscript.
Conflict of Involvement
The authors declare that the research was conducted in the absence of whatever commercial or financial relationships that could be construed as a potential conflict of involvement.
Publisher's Note
All claims expressed in this article are solely those of the authors and exercise not necessarily correspond those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Whatever product that may exist evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.
Acknowledgments
The authors limited their gratitude to the parents who participated in the study. We also wish to give thanks the staff at the PICUs who helped to inform the parents about the written report and Monique Federsel for revising the language.
Glossary
Abbreviations
| PICU | Pediatric intensive care unit of measurement |
| FCC | family-centered intendance |
| PFCC | Patient- and Family unit-Centered Care |
| HCPs | Wellness care professionals |
| EMPATHIC-30 | EMpowerment of PArents in THe Intensive Care. |
Footnotes
Funding. The study was supported by the Mjölkdroppen foundation, Helsingborg Sweden and Lund University's APC Fund.
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