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A qualitative interpretive study exploring parents’ perception of the parental role in the paediatric intensive care unit
Intensive and Critical Care Nursing (2011) 27, 143—150
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ORIGINAL ARTICLE
A qualitative interpretive study exploring parents’ perception of the parental role in the paediatric intensive care unit Kaitlin E. Ames a,∗, Janet E. Rennick b,c, Sophie Baillargeon b a
Paediatric Intensive Care Unit, The Hospital for Sick Children, Toronto,Ontario, Canada Montreal Children’s Hospital, McGill University Heath Centre, Montreal, Quebec, Canada c School of Nursing & Department of Paediatrics, Faculty of Medicine, McGill University, Montreal, Quebec, Canada b
Accepted 15 March 2011
KEYWORDS Parent experience; Parents’ perception; Paediatric intensive care unit; PICU; Intensive care; Parental role
Summary Objectives: The purpose of this study was to explore parents’ perception of the parental role in a tertiary care Canadian university affiliated hospital’s paediatric intensive care unit (PICU). Research methodology: A descriptive interpretive design was used with a purposive heterogeneous sample to reflect the range of children and parents normally admitted to the PICU. Semi-structured interviews were conducted with seven parents. Interview data were collected and analysed using the constant comparative method. Findings: Three main themes emerged: (1) being present and participating in the child’s care; (2) forming a partnership of trust with the PICU health care team; and (3) being informed of the child’s progress and treatment plan as the person who ‘‘knows’’ the child best. Conclusion: Enhanced understanding of the parental role in the PICU from the perspective of parents can help guide the development of strategies to more effectively support parents and promote parenting during this extremely stressful time. © 2011 Elsevier Ltd. All rights reserved.
Introduction Admission of a child to the paediatric intensive care unit (PICU) is an agonising experience for a parent. Fearful for their child’s survival, and in a foreign and highly technical environment, parents must surrender their responsibility as protector and primary caregiver to healthcare profes-
∗
Corresponding author. Tel.: +1 416-813-6486. E-mail address: [email protected] (K.E. Ames).
sionals (Gillis and Rennick, 2006). Communication is more difficult as children are often sedated and intubated, and their appearance, emotions and behaviours are often changed. Parents may feel immobilised and experience a sense of helplessness in not knowing how to care for their child (Shudy et al., 2006). Since the 1980s, parents have consistently identified alteration in their role as they transition from being parent of a well child to parent of a critically ill child as a tremendous stressor (Shudy et al., 2006). Despite this, few studies have used qualitative methodologies to better understand the nature of parental role alteration from the parent’s
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Table 1
Interview guide.
Question 1 2 3 4 5
6 7 8
Perhaps we can begin with your telling me a little bit about your experience in the PICU? As a parent you are used to taking care of your child’s needs in a certain way and you make sure he/she is well looked after. Yet, in the PICU, parents often say that so much of that changes. What has your experience been like? How would you compare the way you were able to look after your child in the PICU with how you are used to looking after your child at home? Can you describe for me what you were able to do or to say that was important to you in caring for your child in the PICU? What were you unable to do or say that you would have wanted to? Many parents describe that the way their child looks and behaves in the PICU is quite different from how they normally look and behave and that this is quite stressful. Was this similar to your experience? How did this affect, if at all, the way you cared for your child? Can you describe things that the health care team did that really helped or made it difficult for you to care for your child in the way you wanted to? Is there anything else that the health care team could have done to support you in taking care of your child in the PICU? Is there anything else you would like to add?
perspective. Since nurses are in a primary position to facilitate parenting, an enhanced understanding of parental role alteration from the parent’s perspectives would help direct nursing interventions to support parenting in the PICU.
Literature review A recent systematic review found the majority of studies on parenting the critically ill child focused on identifying parental stressors, needs and coping strategies (Shudy et al., 2006). In particular, Miles and Carter’s (1982) Parental Stressor Scale: Paediatric Intensive Care, has been used extensively to quantify the prevalence of parental stressors. Whilst parental role alteration is repeatedly identified by parents as their greatest stressor, the measure provides little insight into the nature of that role alteration. Other studies have used qualitative methodologies to explore families’ and parents’ PICU experiences. Roden (2005) found that parents understood their role to be what they would normally do at home; that is, ‘‘mothers do the mothering and nurses do the nursing.’’ Findings emphasised the importance of nurses and parents clarifying their role expectations at the beginning of their relationship to facilitate communication and overall care of the family in the PICU. However, studies eliciting the desired roles and expectations of parents from their perspective remain scarce. Snowdon and Gottlieb (1989) identified six types of parental roles in the PICU: vigilant parent, nurturer—comforter, medical parent, caregiver, entertainer and protector. This study contained an observational component that facilitated the identification of situational factors that may have contributed to altering the parenting role, including procedures at the bedside and the presence of family and friends. Facilitators and barriers to parenting in the PICU have also been identified. Noyes’ (1999) found the parental role was influenced by factors external to the parent—child subsystem, such as events preceding the PICU admission and the parents’ family support network. Mu et al. (1997) found parents’ perceptions of disempowerment and loss of the
parental role led them to expand their family’s boundary and build shared patterns of caregiving interactions with the PICU nurses. Tomlinson et al. (1999) reported that parents’ responses to surrendering their primary caregiving role in the PICU were not only affected by how nurses supplemented their role, but by how effectively nurses aided them in retaining their role as a parent. Whilst these studies highlight the importance of intervening to help parents establish their role in the PICU, our understanding of parents’ expectations and perceptions remains limited. This knowledge would allow clinicians to work with parents more effectively and support their essential contributions to their child’s care. The purpose of this study was to gain an in-depth understanding of parents’ perception of the parental role when they have a critically ill child in the PICU. The research questions were: (1) what are parents’ perceptions of their role in the PICU? (2) How do parents perceive their role to have been altered in the PICU? (3) What can nurses do to facilitate parenting in the PICU?
Methods Design A qualitative interpretive design was used to capture the contextual and unique nature of each parent’s experience, whilst elucidating the shared realities of similar healthillness experiences within the PICU (Sandelowski, 2000; Thorne et al., 1997).
Sample Children are admitted to the PICU with a wide range of medical diagnoses, ranging in age from infancy to 17 years; therefore, purposive sampling was used to ensure participants would reflect this heterogeneous group. Parents were included who spoke English, and whose child was being prepared for PICU discharge. Parents of children admitted for suspected abuse were excluded.
Parents’ perception of the parental role in the PICU Table 2
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Demographic information.
Parent
Child diagnosis
Child age
PICU length of stay
Previous PICU admission
Planned/emergency admission
Siblings
Dad 38 years, married
Motor vehicle accident with head injuries (left frontal lobe contusion, occipital fracture, brain oedema) Post Glenn procedure for hypoplastic left heart syndrome Coarctation of the aorta Post-operative tongue reduction and opioid withdrawal Septic shock
4 years
11 days
No
Emergency
3 brothers (15, 11, 8 years)
6 months
3 days
Yes
Planned
2 brothers (18 months and 3 years)
13 days
8 days
No
Emergency
6 months
7 days
Yes
Planned
1 brother (2 years) 2 siblings (9 and 4 years)
13 years
5 days
Yes
Emergency
1 brother 16 years)
3 months
6 days
Yes
Emergency
16 years
9 days
Yes
Emergency
1 brother (3 1/2 years) 1 sister (12 years)
Mom 26 years, married
Mom 34 years, married Mom, married
Dad 53 years, divorced and remarried Mom, married Mom 40 years, divorced
Respiratory distress Pneumonia and collapsed lung post-surgical extubation
Data collection Ethical approval for the study was obtained from the hospital’s Research Ethics Board, and written informed consent was obtained from each parent prior to commencing data collection. Data were collected using in-depth semistructured interviews. Interview questions (Table 1) were developed to ensure that various dimensions of the parenting experience were explored, whilst allowing parents to freely describe their own unique experiences (Morse and Field, 1995). Follow up questions and probes were used to further explore salient and relevant issues raised by parents (Rubin and Rubin, 2005). Interviews lasted between 25 and 60 minutes and were audio recorded. Field notes were recorded upon completion of each interview.
and clustered into themes by the research team (Corbin, 1986).
Evaluation of rigour To increase credibility, field notes and transcripts were compared and combined to create an accurate representation of the parents’ experiences. Investigator triangulation was used to reduce the likelihood of biased interpretation of the data (Polit and Beck, 2004). Confirmation of preliminary interpretations from early interviews was sought through member-checking with parents of later interviews. An audit trail of interview transcripts, field notes, data reduction and investigator documentation was systematically collected to ensure dependability (Polit and Beck, 2004).
Data analysis
Results
Data were analysed using the constant comparison method described by Burnard (1991). Audiotapes were transcribed verbatim and all textual data (transcripts and field notes) were read in their entirety. Line-by-line coding of the raw data was completed and comments or statements describing the parental role and facilitators of that role were identified. Using open and axial coding, all text deemed relevant to the research questions was highlighted and given a provisional label, remaining as close to the original data as possible. Codes for all of the textual data were combined
Parents of seven children hospitalised in the PICU of a tertiary care, Canadian university affiliated paediatric hospital were recruited. This sample size allowed for a rich and holistic understanding of the parental experience, and facilitated a meaningful case-oriented analysis (Sandelowski, 1995). Parents ranged in age from 26 to 53 years, and children from 13 days to 16 years. Children had a variety of medical diagnoses (see Table 2). Parent interviews revealed experiences filled with a range of emotions from fear, guilt and helplessness to relief,
146 hope and cautious optimism. Parents consistently stated that their greatest concern was the survival of their child, and that their role as a parent was to ensure their child was well cared for. Whilst each parent prefaced his or her interview with a similar assertion that their role was limited in the PICU, their narratives revealed that they perceived three important dimensions of the parenting role: (1) being present and participating in the child’s care; (2) forming a partnership of trust with the PICU health care team; and (3) being informed of the child’s progress and treatment plan as the person who ‘‘knows’’ the child best. Ways in which the parental role can be facilitated by the PICU staff are also identified within each dimension.
(1) Being present and participating in the child’s care in the PICU Parents actively sought ways to interact and be present with their child who was often heavily sedated, and connected to various tubes and monitors in the foreign environment of the PICU. In particular, knowing they were doing something important for their child was a recurrent theme. Parents described three principal ways in which they participated in their child’s care: (a) just being there and providing comfort, (b) active caring and (c) providing explanations and reassurance to their child. (a) Just being there and providing comfort. In the words of one mother, ‘‘Being a parent is just being there and talking with him.’’ When asked to describe what they were able to do with their child in the PICU, the first thing all parents said was ‘‘just being there.’’ As expressions of comfort, this meant sitting with their child, watching over him/her, praying for him/her, touching his/her hand, talking to him/her, and telling him/her ‘‘mommy (or daddy) loves you,’’ even if the child was sedated. One mother poignantly stated the importance of being there: ‘‘He’s my boy, and I am the mother. I know he sees that I will be there for him . . . He’s sleeping but I know he sees I am beside him and I take care of him, and that is the most important thing.’’ Although being present with their child was very important to parents, many underscored the helplessness they felt to do much more than that. In particular, parents mourned not being able to hold their child — either because the child was intubated or because of other contraindications. One mother lamented, ‘‘That was probably the hardest, not being able to hold her. Especially when she . . . when you could see that she was uncomfortable. You know? She was looking at you like, ‘Why aren’t you picking me up? What’s going on here?’’’ This resulted in what one father described as a sense of powerlessness. (b) Active caring. Many parents described being able to actively care for their child, although for some this was not possible until their child’s medical condition stabilised. Parents of younger children expressed satisfaction in bathing their child and changing diapers. One mother explained, ‘‘I’ve participated in her care . . . You know, obviously I can’t administer drugs or anything like that, but if I want
K.E. Ames et al. to [I can] feed her, hold her or calm her down.’’ A parent of an older child who helped staff weigh his son stated: ‘‘I would help with the tubes, and roll and help lift him. I actually felt like I was helping out with something. And I think my son knew I was there too. So I felt very, I felt good about that.’’ Parents sometimes found it difficult to interact with their child due to fear of interfering with monitoring equipment and access lines. They were unsure of when and how to touch their child. One mother explained: I would have liked to pick him up . . . I had to ask at the beginning, ‘Can I touch him? Can I hold his hand? Can I do it?’ And they said ‘yes’. Maybe telling me before — you can do this, like, because you’re so scared of doing something wrong. (c) Providing explanations and reassurance to their child. Parents also had a role in explaining things to their children and reassuring them. One parent described helping his son struggle through existential questions and the expectation of a long recovery using words such as, ‘‘You will get through this’’ and ‘‘It’s nobody’s fault, not yours. The doctors did the best they could, you were sicker than they thought, or you thought you were . . . but now you’re on your way.’’ This father also stated that parents have a role in helping their children express their emotions: ‘‘[It’s important for] one of us, like parents, me being there or his mom being there . . . so he can actually let go a little bit, and cry a little bit.’’ Parents with younger children often reassured their child through their presence at the bedside.
(2) Forming a partnership of trust with the PICU team In addition to participating in the child’s care, part of the parental role included forming partnerships based on trust with the PICU team. Parents recognised their child’s critical illness necessitated the acute medical and clinical expertise of the health care team. However, they also realised their child’s well-being was dependent upon their own contribution to care, including: (a) sharing their expertise as the child’s parent, (b) building trust with the team and (c) taking care of themselves. (a) Sharing their expertise as a parent. Parents emphasised that as the parent, they had knowledge about their child’s nature that the PICU staff did not. Sharing this expertise was an important part of their parental role. One mother explained: [The physician] sometimes asked for my opinion, because he knows it’s my child . . . I know what the problem is with my child. . . . I know what’s happening with my child because I am with him [all the] time. . . . I know the situation. I know when he is a little bit down and when he is going to go very bad. I see the little things . . . I am the mother! Parents described an eagerness to share their child’s unique cues and indicators of pain and discomfort. One parent explained, ‘‘I know that she never cries, so if
Parents’ perception of the parental role in the PICU she’s crying that means that she is uncomfortable . . . She usually only cries if she is hungry, tired or uncomfortable.’’ Parents shared their child’s likes and dislikes, giving suggestions to nurses about what would make their child more comfortable. Parents identified a number of ways in which their expertise was elicited by staff, including: being asked what their child normally did at home, being included in the assessment of their child’s physical condition, being encouraged to contribute to their child’s well-being through normal parental activities such as feeding, and lastly, in the words of one parent, ‘‘helping me to focus on the baby and not the monitors.’ (b) Building trust with the team. In addition to sharing their expertise with the team, part of parenting in the PICU included relinquishing control as primary care provider and trusting the health care team to take over. One mother poignantly described this: . . . it’s difficult as I usually control all of A’s care . . . to relinquish some portion of that for medications and for decisions that just by their medical training I’m not equipped to make. Just that, in your mind, is difficult because you’ve given over control of your child whom you usually look after to that person. But the nursing staff has been very good about letting me do the things that I am skilled to do. Most parents described managing multiple parenting demands whilst their child was in the PICU. These included taking care of other children, attending to household responsibilities or getting respite and nourishment. When leaving the PICU, parents felt an important part of their role was ensuring their child was safe. One mother described how she would carefully observe the staff taking care of her child: ‘‘Like if it’s someone new, you watch them . . . and then the next day, it’s still them. So it’s good . . . they have seen her and taken care of her more than once, so that helps.’’ Parents also needed to ensure the staff member caring for their child knew about the child’s nature and ways they preferred to be comforted. Trust was fostered through interactions with the health care team. One mother described how a nurse tried to emulate her way of comforting her child. Oh, I definitely trust them . . . I saw [a nurse] yesterday trying to hold her the same way I would and, you know, comforting her. I had left for coffee and she had woken up and the [the nurse] told me to go [again] and have a break, and I did. (c) Taking care of themselves. When parents felt cared for, such as being asked daily how they were coping, they felt better able to parent their child. In order to be present and interact with their child, parents recognised they had to take time out for respite and to manage other demands. One mom described it as a balancing act in which taking care of herself was always the last priority. If he was home, then I would be the one if he’s crying, and I would be the one if he’s hungry . . . and the
147 fact that I left him last night for the first time, I’m scared of that bonding being altered . . . You know it’s balancing the bonding with him, and it’s balancing the security of my other child, you know? And it’s taking care of me. That comes last . . . So we called here, and they were good at explaining ‘‘He’s calm, he’s ok, he’s sleeping. You can call all night if you want.’’ In addition to being able to call 24-hours a day, parents described several ways they received care from staff, including: being encouraged to get respite, having someone present to answer questions, being provided with explanations of procedures and interpretation of results, and being reassured of the normalcy of their child’s behaviour and responses to treatment.
(3) Being informed of the child’s progress and treatment plan as the person who ‘‘knows’’ the child best An important dimension of the parental role was acquiring information and gaining knowledge about the child’s treatment and recovery in the PICU. Parents described their role as knowledge seekers, including: (a) knowing their child’s status, (b) understanding the care provided to their child and (c) knowing what to expect next. (a) Knowing their child’s status. Parents were adept at monitoring their child’s condition in the PICU. They sought information about their child’s physiological status by continuously observing their child, reading the cardiac monitors and asking staff, ‘‘Is that normal?’’ and ‘‘What does that mean?’’ Parents quickly learned what were considered ‘‘good’’ values for their child. Knowing how to interpret the monitors was important because it allowed parents to independently evaluate how well their child was doing. One father described reading the monitors whilst his daughter was sedated to reassure himself that she was still alive. I think I tried to get only the essentials of being alive . . . the heartbeat, the blood pressure, that kind of thing. Not more than that . . . I didn’t want to ask every single detail. Just wanted to know, is she alive? Parents also ascertained their child’s status by surveying the number of wires and tubes connected to their child. One mother explained that the number of intravenous lines for medications upon her child’s admission was overwhelming but as she saw the number become less, this was an indication of her child’s recovery. Parents also observed the number of staff members and the intensity of their actions as indicative of their child’s status. One mother stated: You just saw five people around, working all the time, and I think that was hard for us. We had trouble staying there because we panicked the whole time . . . The tubes were ok, it’s the reactions . . . because it looked really serious by the amount of people that were there . . .
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All parents emphasised that frequent feedback from staff was critical in helping them understand their child’s condition and relieving their sense of helplessness. (b) Understanding the care provided to their child. In addition to knowledge regarding their child’s status, it was important for parents to understand the care that was being provided to their child. Parents described how being educated about medical interventions such as intubation, sedation, opioid use, intravenous lines and chest tubes led to an understanding of their child’s appearance and behaviours. This, in turn, helped moderate parents’ emotional reactions and allowed them to care for their child. One mother described the importance of understanding her daughter’s morphine withdrawal reaction following surgery: ‘‘I didn’t want her to have to go through withdrawal, but I understood why . . . Maybe if I [had not been] educated I would be angry.’’ Understanding her daughter’s reactions helped this mother to remain present and comfort her daughter. Parents sought knowledge about their child’s care by being assertive and asking questions, and being present and actively listening. Prior experience with health care providers gave some parents more confidence to ask questions; however, the amount of information parents wanted varied, with some wanting only basics and others wanting to know ‘‘everything’’. It was evident that some parents had learned the language and routines of the PICU to gain the information they wanted. For example, parents recalled the names of medications and routes of administration, their side effects and the physiological indicators of their effectiveness. Despite learning some medical language, parents noted how important it was for staff to explain the care in simple terms. One father described how medical staff ‘‘came down’’ to his level in the language they used to describe his child’s care. So we weren’t in the dark . . . they would hold their little conferences . . . and they’d all talk shop. They’d talk about this and that, and we gave him potassium, and other technical terms which I don’t know, but then they’d take the time, come down, [italics added] and the doctor would say, ‘‘Well what we were talking about was this,’’ and they would explain, ‘‘This is what’s happening now, this is what we’re doing here’’. . . that was a calming thing. Parents found this knowledge helped them feel less helpless and provided some direction for participating in their child’s care. One parent said, ‘‘With him, I can’t [do a lot] right now. I know I can’t, and I don’t know if I would want to yet because of the arterial line and everything, you know? Just touching and talking to him, and feeding him for now is ok.’’ (c) Knowing what to expect next. Acquiring knowledge about what to expect in the PICU was an ongoing process for parents. Commonly, parents reported having received anticipatory information regarding their child’s appearance and the PICU environment, but emphasised that they had needed to continue asking questions throughout their child’s stay. One parent commented, ‘‘when your kid . . . comes here . . . they tell you so much information sometimes . . . it’s
just a blur. And I think it is really important that there is a person that will answer the questions . . . on an ongoing basis.’’ Knowledge often had an empowering quality for parents, especially the wisdom they gained from prior PICU experiences. Three parents explicitly stated they experienced a difference in their reactions and responses between their first and subsequent experiences, the first being more of a ‘‘shock’’ and more ‘‘traumatic.’’ Their familiarity with the PICU gave them confidence to seek information and participate in their child’s care. Parents with experience felt confident, for example, making suggestions to nurses about what would make their child more comfortable. However, prior experience was not always helpful. One parent described his child’s second PICU admission as just as traumatic as his first. This parent struggled with memories of a previous intensive care unit experience with another family member in which the outcome was not favourable. In general, previous positive PICU experiences helped parents feel better prepared for what they would see and experience, which, in turn made them feel less helpless.
Discussion Results of this study provide insight into the parental role from the perspectives of parents with a critically ill child in the PICU. Commonly, parents felt this was a time when their emotions, combined with the medical complexity of their child’s needs, were overwhelming. Yet all study participants felt that parenting their critically ill child was of fundamental importance. This consisted of being present and actively participating in their child’s care, forming a trusting partnership with the PICU team, and keeping abreast of their child’s progress and treatment plan as the one who ‘‘knows’’ the child best.
Parental contributions to the care of their child in the PICU An important aspect of a collaborative partnership involves not only the two-way sharing of expertise, but sharing the physical care of the child as well. Power and Franck (2008) defined parental participation as the ‘‘physical, psychological and social activities performed by parents to improve the health and/or psychological well-being of the child . . .’’ Parents in this study firmly believed that actively participating in their child’s care was crucial to their child’s emotional and physical well-being. Indeed, one study has identified benefits of parental participation in PICU care, including reduced parent and child anxiety, decreased length of stay, and decreased tension between parents and staff when role expectations are unambiguous (Just, 2005); however, the definition and benefits of parental participation in the PICU have not been well established. Studies in the adult intensive care unit (ICU) literature reveal that family members often wish to participate in the care of family members, and perceive participation as positive, productive and supportive of their relationship with the patient (Van Horn and Kautz, 2007). Findings of the current
Parents’ perception of the parental role in the PICU study suggest that, despite the complexity of their child’s needs and their states of overwhelming stress, parents also express an earnest desire to be involved in their child’s care. Parents felt that by being involved, they experienced a greater sense of purpose in their role. Whilst parents wished to be involved in providing care, they often felt unsure when and how to touch, hold or interact with their child. They said it would be helpful to receive this information from staff as early in the child’s PICU stay as possible. Parents found it helpful when staff provided opportunities for parents to engage in such activities as feeding, holding, bathing, reading to and talking to their child.
Sharing their parental expertise Parents suggested that when PICU staff valued their input and insight or took their suggestions into consideration, they felt more efficacious as a parent. Parents relied on the medical expertise of the PICU team, but perceived that as a parent, they had expertise about their child that the staff could not have — insight that they believed could improve their child’s care. For example, one mother talked about her unique ability as the child’s mother to pick up on subtle cues from her son that indicated his level of physical distress or comfort. Another mother spoke about knowing her daughter’s ‘‘nature,’’ something that she did not feel the staff would know without her input. Parents described their role in terms of being sensitive and responsive to their child’s unique cues and sharing this information with the health care team. In so doing, parents worked in tandem with the health care team and felt they were protecting their child and ensuring he/she received the best care possible. Study findings suggest it is important that parents form a partnership with the PICU staff in caring for the sick child. In the general nursing literature, a collaborative partnership has been defined as ‘‘an interpersonal relationship between two or more people who work together towards a mutually defined purpose’’ (Gallant et al., 2002, p. 151). In the PICU, that mutual purpose can be understood as providing the best care possible for the child from a holistic perspective. Parents described several ways in which the PICU team could facilitate this aspect of the parental role, including eliciting parents’ opinions in the team’s daily physical assessments of the child, and valuing parents’ insight about their child’s nature and personality. In the adult ICU literature, Williams (2005) looked at the contribution families make to the care of their loved one in the ICU from the nurses’ perspectives. Nurses noted that families provided invaluable information about the patient as a person and this, in turn, helped them respond more appropriately to the patients’ needs. In addition, this process of sharing was considered vital to both the nurse—family relationship and nurse—patient relationship in that it engendered trust in the nursing care provided. It was hypothesised that this, in turn, was related to improved outcomes for the patient and the family.
Obtaining information about their child PICU research conducted to-date has emphasised the importance of maximising the provision of information to parents
149 to reduce their stress, anxiety and sense of helplessness (Shudy et al., 2006). Certainly the importance of providing tailored information to parents on an ongoing basis cannot be overemphasised. Parents in this study wanted to know about their child’s physiological status and test results, what treatments were being provided, and the reasons for those treatments. They also wanted anticipatory guidance on what to expect regarding their child’s recovery, and to understand goals the team had established for their child that would indicate recovery was taking place. However, our findings emphasise that information alone is not sufficient to support parents in the PICU. One intervention study that was successful in reducing parental stress (Curley and Wallace, 1992), focused on enhancing the dynamic and reciprocal interaction between parents and nurses in the PICU. As one mother from our study emphasised, it is this personal contact and interaction with PICU staff that is imperative in supporting the parental role.
Limitations and further research The parent’s role in the PICU is influenced by dynamic relationships and interactions with the child and with members of the health care team. This study did not include an observational component, which may have yielded a richer and more complete contextual understanding of the parental role in the PICU. In addition, the scarcity of information on the parental role in the PICU directed the research to include a heterogeneous sample of parents. Although not a focus of the current study, results do suggest prior PICU experience generally helps inform parents of their role during subsequent PICU admissions; however, one father described his previous experience as unhelpful and felt it contributed to anxiety. Further studies with larger sample sizes that seek to include PICU sub-populations are necessary to determine how the parental role is impacted, and how participation varies between parents whose child is admitted for the first time and those who have had previous experiences. Similarly, perceptions of parents whose child’s admission was planned versus those whose admission was unplanned may differ in terms of role expectations; or, perhaps there is a trajectory along which role expectations develop and unfold, based on the length of time the child is in the PICU, and the parents’ experience and comfort level. Other variables that may impact the parental role include parents’ marital status, the child’s diagnosis and age. Grounded theory methodology may be useful in eliciting this information. Finally, future research might focus on the effect of parental participation on the care of the child.
Conclusions Building on previous research that consistently identifies parental role alteration as parents’ greatest stressor during a child’s PICU hospitalisation, this study provides new insight into parents’ perceptions of how their role may be altered, and the resultant implications for clinical practice. Three dimensions of the parental role in the PICU were identified, including being present and participating in their child’s care, building a trusting partnership with the health care team so they can share their parental expertise, and
150 being informed of their child’s progress and treatment plan to enhance the reciprocal relationship between parents and staff. Parents identified corresponding facilitators of parenting, such as guidance to participate in their child’s care, inclusion of parents’ expertise by staff in their assessments of the child, and provision of tailored information. Understanding parents’ perceptions of their role can provide invaluable insight into their experiences, ultimately directing staff to facilitate parenting in the PICU.
Funding K.E. Ames was funded for this study by Groupe de Recherche Interuniversitaire en Interventions en Sciences Infirmières du Québec (GRIISIQ) and the Canadian Nurses Foundation (CNF), Nursing Care Partnership Program. J.E. Rennick is an FRSQ Clinical Research Scholar, and holds a New Investigator Award from Sick Kids Foundation/IHDCYH-CIHR National Grants Program. Dr. Rennick is a member of the McGill University Health Centre Research Institute, which is funded by the FRSQ.
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K.E. Ames et al. Miles MS, Carter MC. Sources of parental stress in pediatric intensive care units. Children’s Health Care 1982;11:65—9. Morse JM, Field PA. Qualitative research methods for health professionals. 2nd ed. London: Sage; 1995. Mu P, Tomlinson P, Huckabay LM, Heims ML. Parental experiences and meaning construction during a pediatric health crisis. Western Journal of Nursing Research 1997;19:608—28. Noyes J. The impact of knowing your child is critically ill: a qualitative study of mothers’ experiences. Journal of Advanced Nursing 1999;29(2):427—35. Polit DF, Beck CT. Nursing research: principles and methods. 7th ed. Philadelphia: Lippincott Williams & Wilkins; 2004. Power N, Franck L. Parent participation in the care of hospitalized children: a systematic review. Journal of Advanced Nursing 2008;62(6):622—41. Roden J. The involvement of parents and nurses in the care of acutely-ill children in a non-specialist paediatric setting. Journal of Child Health Care 2005;9(3):222—40. Rubin HJ, Rubin IS. Structuring the interview. In: Qualitative interviewing: the art of hearing data. 2nd ed. Thousand Oaks: Sage; 2005. p. 129—51. Sandelowski M. Sample size in qualitative research. Research in Nursing & Health 1995;18:179—83. Sandelowski M. Whatever happened to qualitative description? Research in Nursing & Health 2000;23:334—40. Shudy M, de Almeida M, Ly S, Landon C, Groft S, Jenkins TL, et al. Impact of pediatric critical illness and injury on families: a systematic literature review. Pediatrics 2006;118:S203—18. Snowdon AW, Gottlieb LN. The maternal role in the pediatric intensive care unit and hospital ward. Maternal-Child Nursing Journal 1989;18(2):97—115. Thorne S, Kirkham SR, MacDonald-Emes J. Interpretive description: a noncategorical qualitative alternative for developing nursing knowledge. Research in Nursing & Health 1997;20:169—77. Tomlinson PS, Swiggum P, Harbaugh BL. Identification of nurse—family intervention sites to decrease health-related family boundary ambiguity in PICU. Issues in Comprehensive Pediatric Nursing 1999;22:27—47. Van Horn ER, Kautz D. Promotion of family integrity in the acute care setting. Dimensions of Critical Care Nursing 2007;26(3):101—7. Williams CMA. The identification of family members’ contribution to patients’ care in the intensive care unit: a naturalistic inquiry. Nursing in Critical Care 2005;10(1):6—14.
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ORIGINAL ARTICLE
A qualitative interpretive study exploring parents’ perception of the parental role in the paediatric intensive care unit Kaitlin E. Ames a,∗, Janet E. Rennick b,c, Sophie Baillargeon b a
Paediatric Intensive Care Unit, The Hospital for Sick Children, Toronto,Ontario, Canada Montreal Children’s Hospital, McGill University Heath Centre, Montreal, Quebec, Canada c School of Nursing & Department of Paediatrics, Faculty of Medicine, McGill University, Montreal, Quebec, Canada b
Accepted 15 March 2011
KEYWORDS Parent experience; Parents’ perception; Paediatric intensive care unit; PICU; Intensive care; Parental role
Summary Objectives: The purpose of this study was to explore parents’ perception of the parental role in a tertiary care Canadian university affiliated hospital’s paediatric intensive care unit (PICU). Research methodology: A descriptive interpretive design was used with a purposive heterogeneous sample to reflect the range of children and parents normally admitted to the PICU. Semi-structured interviews were conducted with seven parents. Interview data were collected and analysed using the constant comparative method. Findings: Three main themes emerged: (1) being present and participating in the child’s care; (2) forming a partnership of trust with the PICU health care team; and (3) being informed of the child’s progress and treatment plan as the person who ‘‘knows’’ the child best. Conclusion: Enhanced understanding of the parental role in the PICU from the perspective of parents can help guide the development of strategies to more effectively support parents and promote parenting during this extremely stressful time. © 2011 Elsevier Ltd. All rights reserved.
Introduction Admission of a child to the paediatric intensive care unit (PICU) is an agonising experience for a parent. Fearful for their child’s survival, and in a foreign and highly technical environment, parents must surrender their responsibility as protector and primary caregiver to healthcare profes-
∗
Corresponding author. Tel.: +1 416-813-6486. E-mail address: [email protected] (K.E. Ames).
sionals (Gillis and Rennick, 2006). Communication is more difficult as children are often sedated and intubated, and their appearance, emotions and behaviours are often changed. Parents may feel immobilised and experience a sense of helplessness in not knowing how to care for their child (Shudy et al., 2006). Since the 1980s, parents have consistently identified alteration in their role as they transition from being parent of a well child to parent of a critically ill child as a tremendous stressor (Shudy et al., 2006). Despite this, few studies have used qualitative methodologies to better understand the nature of parental role alteration from the parent’s
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Table 1
Interview guide.
Question 1 2 3 4 5
6 7 8
Perhaps we can begin with your telling me a little bit about your experience in the PICU? As a parent you are used to taking care of your child’s needs in a certain way and you make sure he/she is well looked after. Yet, in the PICU, parents often say that so much of that changes. What has your experience been like? How would you compare the way you were able to look after your child in the PICU with how you are used to looking after your child at home? Can you describe for me what you were able to do or to say that was important to you in caring for your child in the PICU? What were you unable to do or say that you would have wanted to? Many parents describe that the way their child looks and behaves in the PICU is quite different from how they normally look and behave and that this is quite stressful. Was this similar to your experience? How did this affect, if at all, the way you cared for your child? Can you describe things that the health care team did that really helped or made it difficult for you to care for your child in the way you wanted to? Is there anything else that the health care team could have done to support you in taking care of your child in the PICU? Is there anything else you would like to add?
perspective. Since nurses are in a primary position to facilitate parenting, an enhanced understanding of parental role alteration from the parent’s perspectives would help direct nursing interventions to support parenting in the PICU.
Literature review A recent systematic review found the majority of studies on parenting the critically ill child focused on identifying parental stressors, needs and coping strategies (Shudy et al., 2006). In particular, Miles and Carter’s (1982) Parental Stressor Scale: Paediatric Intensive Care, has been used extensively to quantify the prevalence of parental stressors. Whilst parental role alteration is repeatedly identified by parents as their greatest stressor, the measure provides little insight into the nature of that role alteration. Other studies have used qualitative methodologies to explore families’ and parents’ PICU experiences. Roden (2005) found that parents understood their role to be what they would normally do at home; that is, ‘‘mothers do the mothering and nurses do the nursing.’’ Findings emphasised the importance of nurses and parents clarifying their role expectations at the beginning of their relationship to facilitate communication and overall care of the family in the PICU. However, studies eliciting the desired roles and expectations of parents from their perspective remain scarce. Snowdon and Gottlieb (1989) identified six types of parental roles in the PICU: vigilant parent, nurturer—comforter, medical parent, caregiver, entertainer and protector. This study contained an observational component that facilitated the identification of situational factors that may have contributed to altering the parenting role, including procedures at the bedside and the presence of family and friends. Facilitators and barriers to parenting in the PICU have also been identified. Noyes’ (1999) found the parental role was influenced by factors external to the parent—child subsystem, such as events preceding the PICU admission and the parents’ family support network. Mu et al. (1997) found parents’ perceptions of disempowerment and loss of the
parental role led them to expand their family’s boundary and build shared patterns of caregiving interactions with the PICU nurses. Tomlinson et al. (1999) reported that parents’ responses to surrendering their primary caregiving role in the PICU were not only affected by how nurses supplemented their role, but by how effectively nurses aided them in retaining their role as a parent. Whilst these studies highlight the importance of intervening to help parents establish their role in the PICU, our understanding of parents’ expectations and perceptions remains limited. This knowledge would allow clinicians to work with parents more effectively and support their essential contributions to their child’s care. The purpose of this study was to gain an in-depth understanding of parents’ perception of the parental role when they have a critically ill child in the PICU. The research questions were: (1) what are parents’ perceptions of their role in the PICU? (2) How do parents perceive their role to have been altered in the PICU? (3) What can nurses do to facilitate parenting in the PICU?
Methods Design A qualitative interpretive design was used to capture the contextual and unique nature of each parent’s experience, whilst elucidating the shared realities of similar healthillness experiences within the PICU (Sandelowski, 2000; Thorne et al., 1997).
Sample Children are admitted to the PICU with a wide range of medical diagnoses, ranging in age from infancy to 17 years; therefore, purposive sampling was used to ensure participants would reflect this heterogeneous group. Parents were included who spoke English, and whose child was being prepared for PICU discharge. Parents of children admitted for suspected abuse were excluded.
Parents’ perception of the parental role in the PICU Table 2
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Demographic information.
Parent
Child diagnosis
Child age
PICU length of stay
Previous PICU admission
Planned/emergency admission
Siblings
Dad 38 years, married
Motor vehicle accident with head injuries (left frontal lobe contusion, occipital fracture, brain oedema) Post Glenn procedure for hypoplastic left heart syndrome Coarctation of the aorta Post-operative tongue reduction and opioid withdrawal Septic shock
4 years
11 days
No
Emergency
3 brothers (15, 11, 8 years)
6 months
3 days
Yes
Planned
2 brothers (18 months and 3 years)
13 days
8 days
No
Emergency
6 months
7 days
Yes
Planned
1 brother (2 years) 2 siblings (9 and 4 years)
13 years
5 days
Yes
Emergency
1 brother 16 years)
3 months
6 days
Yes
Emergency
16 years
9 days
Yes
Emergency
1 brother (3 1/2 years) 1 sister (12 years)
Mom 26 years, married
Mom 34 years, married Mom, married
Dad 53 years, divorced and remarried Mom, married Mom 40 years, divorced
Respiratory distress Pneumonia and collapsed lung post-surgical extubation
Data collection Ethical approval for the study was obtained from the hospital’s Research Ethics Board, and written informed consent was obtained from each parent prior to commencing data collection. Data were collected using in-depth semistructured interviews. Interview questions (Table 1) were developed to ensure that various dimensions of the parenting experience were explored, whilst allowing parents to freely describe their own unique experiences (Morse and Field, 1995). Follow up questions and probes were used to further explore salient and relevant issues raised by parents (Rubin and Rubin, 2005). Interviews lasted between 25 and 60 minutes and were audio recorded. Field notes were recorded upon completion of each interview.
and clustered into themes by the research team (Corbin, 1986).
Evaluation of rigour To increase credibility, field notes and transcripts were compared and combined to create an accurate representation of the parents’ experiences. Investigator triangulation was used to reduce the likelihood of biased interpretation of the data (Polit and Beck, 2004). Confirmation of preliminary interpretations from early interviews was sought through member-checking with parents of later interviews. An audit trail of interview transcripts, field notes, data reduction and investigator documentation was systematically collected to ensure dependability (Polit and Beck, 2004).
Data analysis
Results
Data were analysed using the constant comparison method described by Burnard (1991). Audiotapes were transcribed verbatim and all textual data (transcripts and field notes) were read in their entirety. Line-by-line coding of the raw data was completed and comments or statements describing the parental role and facilitators of that role were identified. Using open and axial coding, all text deemed relevant to the research questions was highlighted and given a provisional label, remaining as close to the original data as possible. Codes for all of the textual data were combined
Parents of seven children hospitalised in the PICU of a tertiary care, Canadian university affiliated paediatric hospital were recruited. This sample size allowed for a rich and holistic understanding of the parental experience, and facilitated a meaningful case-oriented analysis (Sandelowski, 1995). Parents ranged in age from 26 to 53 years, and children from 13 days to 16 years. Children had a variety of medical diagnoses (see Table 2). Parent interviews revealed experiences filled with a range of emotions from fear, guilt and helplessness to relief,
146 hope and cautious optimism. Parents consistently stated that their greatest concern was the survival of their child, and that their role as a parent was to ensure their child was well cared for. Whilst each parent prefaced his or her interview with a similar assertion that their role was limited in the PICU, their narratives revealed that they perceived three important dimensions of the parenting role: (1) being present and participating in the child’s care; (2) forming a partnership of trust with the PICU health care team; and (3) being informed of the child’s progress and treatment plan as the person who ‘‘knows’’ the child best. Ways in which the parental role can be facilitated by the PICU staff are also identified within each dimension.
(1) Being present and participating in the child’s care in the PICU Parents actively sought ways to interact and be present with their child who was often heavily sedated, and connected to various tubes and monitors in the foreign environment of the PICU. In particular, knowing they were doing something important for their child was a recurrent theme. Parents described three principal ways in which they participated in their child’s care: (a) just being there and providing comfort, (b) active caring and (c) providing explanations and reassurance to their child. (a) Just being there and providing comfort. In the words of one mother, ‘‘Being a parent is just being there and talking with him.’’ When asked to describe what they were able to do with their child in the PICU, the first thing all parents said was ‘‘just being there.’’ As expressions of comfort, this meant sitting with their child, watching over him/her, praying for him/her, touching his/her hand, talking to him/her, and telling him/her ‘‘mommy (or daddy) loves you,’’ even if the child was sedated. One mother poignantly stated the importance of being there: ‘‘He’s my boy, and I am the mother. I know he sees that I will be there for him . . . He’s sleeping but I know he sees I am beside him and I take care of him, and that is the most important thing.’’ Although being present with their child was very important to parents, many underscored the helplessness they felt to do much more than that. In particular, parents mourned not being able to hold their child — either because the child was intubated or because of other contraindications. One mother lamented, ‘‘That was probably the hardest, not being able to hold her. Especially when she . . . when you could see that she was uncomfortable. You know? She was looking at you like, ‘Why aren’t you picking me up? What’s going on here?’’’ This resulted in what one father described as a sense of powerlessness. (b) Active caring. Many parents described being able to actively care for their child, although for some this was not possible until their child’s medical condition stabilised. Parents of younger children expressed satisfaction in bathing their child and changing diapers. One mother explained, ‘‘I’ve participated in her care . . . You know, obviously I can’t administer drugs or anything like that, but if I want
K.E. Ames et al. to [I can] feed her, hold her or calm her down.’’ A parent of an older child who helped staff weigh his son stated: ‘‘I would help with the tubes, and roll and help lift him. I actually felt like I was helping out with something. And I think my son knew I was there too. So I felt very, I felt good about that.’’ Parents sometimes found it difficult to interact with their child due to fear of interfering with monitoring equipment and access lines. They were unsure of when and how to touch their child. One mother explained: I would have liked to pick him up . . . I had to ask at the beginning, ‘Can I touch him? Can I hold his hand? Can I do it?’ And they said ‘yes’. Maybe telling me before — you can do this, like, because you’re so scared of doing something wrong. (c) Providing explanations and reassurance to their child. Parents also had a role in explaining things to their children and reassuring them. One parent described helping his son struggle through existential questions and the expectation of a long recovery using words such as, ‘‘You will get through this’’ and ‘‘It’s nobody’s fault, not yours. The doctors did the best they could, you were sicker than they thought, or you thought you were . . . but now you’re on your way.’’ This father also stated that parents have a role in helping their children express their emotions: ‘‘[It’s important for] one of us, like parents, me being there or his mom being there . . . so he can actually let go a little bit, and cry a little bit.’’ Parents with younger children often reassured their child through their presence at the bedside.
(2) Forming a partnership of trust with the PICU team In addition to participating in the child’s care, part of the parental role included forming partnerships based on trust with the PICU team. Parents recognised their child’s critical illness necessitated the acute medical and clinical expertise of the health care team. However, they also realised their child’s well-being was dependent upon their own contribution to care, including: (a) sharing their expertise as the child’s parent, (b) building trust with the team and (c) taking care of themselves. (a) Sharing their expertise as a parent. Parents emphasised that as the parent, they had knowledge about their child’s nature that the PICU staff did not. Sharing this expertise was an important part of their parental role. One mother explained: [The physician] sometimes asked for my opinion, because he knows it’s my child . . . I know what the problem is with my child. . . . I know what’s happening with my child because I am with him [all the] time. . . . I know the situation. I know when he is a little bit down and when he is going to go very bad. I see the little things . . . I am the mother! Parents described an eagerness to share their child’s unique cues and indicators of pain and discomfort. One parent explained, ‘‘I know that she never cries, so if
Parents’ perception of the parental role in the PICU she’s crying that means that she is uncomfortable . . . She usually only cries if she is hungry, tired or uncomfortable.’’ Parents shared their child’s likes and dislikes, giving suggestions to nurses about what would make their child more comfortable. Parents identified a number of ways in which their expertise was elicited by staff, including: being asked what their child normally did at home, being included in the assessment of their child’s physical condition, being encouraged to contribute to their child’s well-being through normal parental activities such as feeding, and lastly, in the words of one parent, ‘‘helping me to focus on the baby and not the monitors.’ (b) Building trust with the team. In addition to sharing their expertise with the team, part of parenting in the PICU included relinquishing control as primary care provider and trusting the health care team to take over. One mother poignantly described this: . . . it’s difficult as I usually control all of A’s care . . . to relinquish some portion of that for medications and for decisions that just by their medical training I’m not equipped to make. Just that, in your mind, is difficult because you’ve given over control of your child whom you usually look after to that person. But the nursing staff has been very good about letting me do the things that I am skilled to do. Most parents described managing multiple parenting demands whilst their child was in the PICU. These included taking care of other children, attending to household responsibilities or getting respite and nourishment. When leaving the PICU, parents felt an important part of their role was ensuring their child was safe. One mother described how she would carefully observe the staff taking care of her child: ‘‘Like if it’s someone new, you watch them . . . and then the next day, it’s still them. So it’s good . . . they have seen her and taken care of her more than once, so that helps.’’ Parents also needed to ensure the staff member caring for their child knew about the child’s nature and ways they preferred to be comforted. Trust was fostered through interactions with the health care team. One mother described how a nurse tried to emulate her way of comforting her child. Oh, I definitely trust them . . . I saw [a nurse] yesterday trying to hold her the same way I would and, you know, comforting her. I had left for coffee and she had woken up and the [the nurse] told me to go [again] and have a break, and I did. (c) Taking care of themselves. When parents felt cared for, such as being asked daily how they were coping, they felt better able to parent their child. In order to be present and interact with their child, parents recognised they had to take time out for respite and to manage other demands. One mom described it as a balancing act in which taking care of herself was always the last priority. If he was home, then I would be the one if he’s crying, and I would be the one if he’s hungry . . . and the
147 fact that I left him last night for the first time, I’m scared of that bonding being altered . . . You know it’s balancing the bonding with him, and it’s balancing the security of my other child, you know? And it’s taking care of me. That comes last . . . So we called here, and they were good at explaining ‘‘He’s calm, he’s ok, he’s sleeping. You can call all night if you want.’’ In addition to being able to call 24-hours a day, parents described several ways they received care from staff, including: being encouraged to get respite, having someone present to answer questions, being provided with explanations of procedures and interpretation of results, and being reassured of the normalcy of their child’s behaviour and responses to treatment.
(3) Being informed of the child’s progress and treatment plan as the person who ‘‘knows’’ the child best An important dimension of the parental role was acquiring information and gaining knowledge about the child’s treatment and recovery in the PICU. Parents described their role as knowledge seekers, including: (a) knowing their child’s status, (b) understanding the care provided to their child and (c) knowing what to expect next. (a) Knowing their child’s status. Parents were adept at monitoring their child’s condition in the PICU. They sought information about their child’s physiological status by continuously observing their child, reading the cardiac monitors and asking staff, ‘‘Is that normal?’’ and ‘‘What does that mean?’’ Parents quickly learned what were considered ‘‘good’’ values for their child. Knowing how to interpret the monitors was important because it allowed parents to independently evaluate how well their child was doing. One father described reading the monitors whilst his daughter was sedated to reassure himself that she was still alive. I think I tried to get only the essentials of being alive . . . the heartbeat, the blood pressure, that kind of thing. Not more than that . . . I didn’t want to ask every single detail. Just wanted to know, is she alive? Parents also ascertained their child’s status by surveying the number of wires and tubes connected to their child. One mother explained that the number of intravenous lines for medications upon her child’s admission was overwhelming but as she saw the number become less, this was an indication of her child’s recovery. Parents also observed the number of staff members and the intensity of their actions as indicative of their child’s status. One mother stated: You just saw five people around, working all the time, and I think that was hard for us. We had trouble staying there because we panicked the whole time . . . The tubes were ok, it’s the reactions . . . because it looked really serious by the amount of people that were there . . .
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All parents emphasised that frequent feedback from staff was critical in helping them understand their child’s condition and relieving their sense of helplessness. (b) Understanding the care provided to their child. In addition to knowledge regarding their child’s status, it was important for parents to understand the care that was being provided to their child. Parents described how being educated about medical interventions such as intubation, sedation, opioid use, intravenous lines and chest tubes led to an understanding of their child’s appearance and behaviours. This, in turn, helped moderate parents’ emotional reactions and allowed them to care for their child. One mother described the importance of understanding her daughter’s morphine withdrawal reaction following surgery: ‘‘I didn’t want her to have to go through withdrawal, but I understood why . . . Maybe if I [had not been] educated I would be angry.’’ Understanding her daughter’s reactions helped this mother to remain present and comfort her daughter. Parents sought knowledge about their child’s care by being assertive and asking questions, and being present and actively listening. Prior experience with health care providers gave some parents more confidence to ask questions; however, the amount of information parents wanted varied, with some wanting only basics and others wanting to know ‘‘everything’’. It was evident that some parents had learned the language and routines of the PICU to gain the information they wanted. For example, parents recalled the names of medications and routes of administration, their side effects and the physiological indicators of their effectiveness. Despite learning some medical language, parents noted how important it was for staff to explain the care in simple terms. One father described how medical staff ‘‘came down’’ to his level in the language they used to describe his child’s care. So we weren’t in the dark . . . they would hold their little conferences . . . and they’d all talk shop. They’d talk about this and that, and we gave him potassium, and other technical terms which I don’t know, but then they’d take the time, come down, [italics added] and the doctor would say, ‘‘Well what we were talking about was this,’’ and they would explain, ‘‘This is what’s happening now, this is what we’re doing here’’. . . that was a calming thing. Parents found this knowledge helped them feel less helpless and provided some direction for participating in their child’s care. One parent said, ‘‘With him, I can’t [do a lot] right now. I know I can’t, and I don’t know if I would want to yet because of the arterial line and everything, you know? Just touching and talking to him, and feeding him for now is ok.’’ (c) Knowing what to expect next. Acquiring knowledge about what to expect in the PICU was an ongoing process for parents. Commonly, parents reported having received anticipatory information regarding their child’s appearance and the PICU environment, but emphasised that they had needed to continue asking questions throughout their child’s stay. One parent commented, ‘‘when your kid . . . comes here . . . they tell you so much information sometimes . . . it’s
just a blur. And I think it is really important that there is a person that will answer the questions . . . on an ongoing basis.’’ Knowledge often had an empowering quality for parents, especially the wisdom they gained from prior PICU experiences. Three parents explicitly stated they experienced a difference in their reactions and responses between their first and subsequent experiences, the first being more of a ‘‘shock’’ and more ‘‘traumatic.’’ Their familiarity with the PICU gave them confidence to seek information and participate in their child’s care. Parents with experience felt confident, for example, making suggestions to nurses about what would make their child more comfortable. However, prior experience was not always helpful. One parent described his child’s second PICU admission as just as traumatic as his first. This parent struggled with memories of a previous intensive care unit experience with another family member in which the outcome was not favourable. In general, previous positive PICU experiences helped parents feel better prepared for what they would see and experience, which, in turn made them feel less helpless.
Discussion Results of this study provide insight into the parental role from the perspectives of parents with a critically ill child in the PICU. Commonly, parents felt this was a time when their emotions, combined with the medical complexity of their child’s needs, were overwhelming. Yet all study participants felt that parenting their critically ill child was of fundamental importance. This consisted of being present and actively participating in their child’s care, forming a trusting partnership with the PICU team, and keeping abreast of their child’s progress and treatment plan as the one who ‘‘knows’’ the child best.
Parental contributions to the care of their child in the PICU An important aspect of a collaborative partnership involves not only the two-way sharing of expertise, but sharing the physical care of the child as well. Power and Franck (2008) defined parental participation as the ‘‘physical, psychological and social activities performed by parents to improve the health and/or psychological well-being of the child . . .’’ Parents in this study firmly believed that actively participating in their child’s care was crucial to their child’s emotional and physical well-being. Indeed, one study has identified benefits of parental participation in PICU care, including reduced parent and child anxiety, decreased length of stay, and decreased tension between parents and staff when role expectations are unambiguous (Just, 2005); however, the definition and benefits of parental participation in the PICU have not been well established. Studies in the adult intensive care unit (ICU) literature reveal that family members often wish to participate in the care of family members, and perceive participation as positive, productive and supportive of their relationship with the patient (Van Horn and Kautz, 2007). Findings of the current
Parents’ perception of the parental role in the PICU study suggest that, despite the complexity of their child’s needs and their states of overwhelming stress, parents also express an earnest desire to be involved in their child’s care. Parents felt that by being involved, they experienced a greater sense of purpose in their role. Whilst parents wished to be involved in providing care, they often felt unsure when and how to touch, hold or interact with their child. They said it would be helpful to receive this information from staff as early in the child’s PICU stay as possible. Parents found it helpful when staff provided opportunities for parents to engage in such activities as feeding, holding, bathing, reading to and talking to their child.
Sharing their parental expertise Parents suggested that when PICU staff valued their input and insight or took their suggestions into consideration, they felt more efficacious as a parent. Parents relied on the medical expertise of the PICU team, but perceived that as a parent, they had expertise about their child that the staff could not have — insight that they believed could improve their child’s care. For example, one mother talked about her unique ability as the child’s mother to pick up on subtle cues from her son that indicated his level of physical distress or comfort. Another mother spoke about knowing her daughter’s ‘‘nature,’’ something that she did not feel the staff would know without her input. Parents described their role in terms of being sensitive and responsive to their child’s unique cues and sharing this information with the health care team. In so doing, parents worked in tandem with the health care team and felt they were protecting their child and ensuring he/she received the best care possible. Study findings suggest it is important that parents form a partnership with the PICU staff in caring for the sick child. In the general nursing literature, a collaborative partnership has been defined as ‘‘an interpersonal relationship between two or more people who work together towards a mutually defined purpose’’ (Gallant et al., 2002, p. 151). In the PICU, that mutual purpose can be understood as providing the best care possible for the child from a holistic perspective. Parents described several ways in which the PICU team could facilitate this aspect of the parental role, including eliciting parents’ opinions in the team’s daily physical assessments of the child, and valuing parents’ insight about their child’s nature and personality. In the adult ICU literature, Williams (2005) looked at the contribution families make to the care of their loved one in the ICU from the nurses’ perspectives. Nurses noted that families provided invaluable information about the patient as a person and this, in turn, helped them respond more appropriately to the patients’ needs. In addition, this process of sharing was considered vital to both the nurse—family relationship and nurse—patient relationship in that it engendered trust in the nursing care provided. It was hypothesised that this, in turn, was related to improved outcomes for the patient and the family.
Obtaining information about their child PICU research conducted to-date has emphasised the importance of maximising the provision of information to parents
149 to reduce their stress, anxiety and sense of helplessness (Shudy et al., 2006). Certainly the importance of providing tailored information to parents on an ongoing basis cannot be overemphasised. Parents in this study wanted to know about their child’s physiological status and test results, what treatments were being provided, and the reasons for those treatments. They also wanted anticipatory guidance on what to expect regarding their child’s recovery, and to understand goals the team had established for their child that would indicate recovery was taking place. However, our findings emphasise that information alone is not sufficient to support parents in the PICU. One intervention study that was successful in reducing parental stress (Curley and Wallace, 1992), focused on enhancing the dynamic and reciprocal interaction between parents and nurses in the PICU. As one mother from our study emphasised, it is this personal contact and interaction with PICU staff that is imperative in supporting the parental role.
Limitations and further research The parent’s role in the PICU is influenced by dynamic relationships and interactions with the child and with members of the health care team. This study did not include an observational component, which may have yielded a richer and more complete contextual understanding of the parental role in the PICU. In addition, the scarcity of information on the parental role in the PICU directed the research to include a heterogeneous sample of parents. Although not a focus of the current study, results do suggest prior PICU experience generally helps inform parents of their role during subsequent PICU admissions; however, one father described his previous experience as unhelpful and felt it contributed to anxiety. Further studies with larger sample sizes that seek to include PICU sub-populations are necessary to determine how the parental role is impacted, and how participation varies between parents whose child is admitted for the first time and those who have had previous experiences. Similarly, perceptions of parents whose child’s admission was planned versus those whose admission was unplanned may differ in terms of role expectations; or, perhaps there is a trajectory along which role expectations develop and unfold, based on the length of time the child is in the PICU, and the parents’ experience and comfort level. Other variables that may impact the parental role include parents’ marital status, the child’s diagnosis and age. Grounded theory methodology may be useful in eliciting this information. Finally, future research might focus on the effect of parental participation on the care of the child.
Conclusions Building on previous research that consistently identifies parental role alteration as parents’ greatest stressor during a child’s PICU hospitalisation, this study provides new insight into parents’ perceptions of how their role may be altered, and the resultant implications for clinical practice. Three dimensions of the parental role in the PICU were identified, including being present and participating in their child’s care, building a trusting partnership with the health care team so they can share their parental expertise, and
150 being informed of their child’s progress and treatment plan to enhance the reciprocal relationship between parents and staff. Parents identified corresponding facilitators of parenting, such as guidance to participate in their child’s care, inclusion of parents’ expertise by staff in their assessments of the child, and provision of tailored information. Understanding parents’ perceptions of their role can provide invaluable insight into their experiences, ultimately directing staff to facilitate parenting in the PICU.
Funding K.E. Ames was funded for this study by Groupe de Recherche Interuniversitaire en Interventions en Sciences Infirmières du Québec (GRIISIQ) and the Canadian Nurses Foundation (CNF), Nursing Care Partnership Program. J.E. Rennick is an FRSQ Clinical Research Scholar, and holds a New Investigator Award from Sick Kids Foundation/IHDCYH-CIHR National Grants Program. Dr. Rennick is a member of the McGill University Health Centre Research Institute, which is funded by the FRSQ.
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