Emerging evidence suggests that when patients' preoperative expectations align with their understanding of surgical goals, greater satisfaction and ultimately better treatment outcomes are realized (Bowling et al., 2012; Hafkamp et al., 2020; Laferton et al., 2017; Sieberg et al., 2017). Early work has focused specifically on individual patient expectations; virtually nothing is known about the role of expectations by proxy on the patient care experience. Such is the case for parental caregivers of children with complex medical conditions. Children with severe cerebral palsy (CP) comprise one such group as they often undergo extensive orthopaedic surgeries throughout childhood. Understanding parental expectations specific to the orthopaedic surgeries recommended for their child is necessary and an integral part of shared decision-making, realistic goal setting, and, ultimately, satisfaction with the patient experience. Heretofore, only nascent work has investigated this relationship. This is of concern as parents' own experiences and beliefs help shape their decision-making, perceptions of their child's perioperative trajectory, satisfaction with care, and ultimately the trust they place in the caregiving team (Czerniak et al., 2020).

Background

Cerebral Palsy

Parental caregivers of children with CP want the best for their child but this can be difficult to discern, especially when their child is severely affected. Cerebral palsy is the most prevalent cause of motor disability in children, occurring in approximately every one to four children per 1,000 live births (National Center on Birth Defects and Developmental Disabilities, 2020). Cerebral palsy is a complex condition characterized by a group of chronic disorders of movement and posture that clinically manifest themselves through disrupted sensory-motor, cognitive, behavioral, and functional abilities (Rosenbaum et al., 2007). The manifestations of CP vary in severity; the Gross Motor Function Classification System (GMFCS) rating scale classifies functional abilities from I (significant functional ability) to V (significant functional disability; Rosenbaum et al., 2008). Approximately 25%-35% of children with CP are classified as GMFCS IV-V CP due to the profound developmental disruptions they experience (Howard et al., 2005; Kirby et al., 2011; Westbom et al., 2007). They are unable to sit, stand, or walk independently and usually exhibit numerous medical and cognitive comorbidities, resulting in total dependence on caregivers for all activities of daily living (Rosenbaum et al., 2008).

Cerebral palsy is not a progressive disorder, but the underlying musculoskeletal deformities worsen as these children age and result in secondary issues such as scoliosis and spastic hip instability, and secondary comorbidities including neurological, respiratory, and gastrointestinal issues. All of these lead to increasing caregiver burden. A series of orthopaedic surgeries are recommended. These surgeries have proven successful in remedying structural deformities (Bergman et al., 2006; Whitaker et al., 2015; Yee et al., 2008; Zarrinkalam et al., 2011). Functional gains from these surgeries result in modestly improving the child's health-related quality of life but do not reduce caregiver burden (DiFazio et al., 2022).

Preoperative Expectations and Postoperative Satisfaction

The more a word is used the less clarity it has-such is the case with expectations. The term has been applied to system and provider factors (e.g., time availability, organizational health literacy, culture of paternalism, etc.), patient factors (e.g., sociocultural factors, type of condition, and prognoses), and treatment outcomes (health-related quality of life, satisfaction, cost of care; Bowling et al., 2012). For the purpose of this discussion, the term expectations is defined as those future-directed beliefs parental caregivers hold regarding the postoperative outcomes their child will experience as a result of the surgery. Through this lens, parental caregivers' satisfaction with their child's postoperative outcomes will be viewed.

Some extant literature on adult orthopaedic patients' expectations has demonstrated that preoperative expectations are associated with postoperative outcomes in orthopaedic surgery. Greater preoperative expectations predicted greater improvements in function and pain following shoulder surgery (Henn et al., 2007; Swarup et al., 2017) and total knee replacement (Cross et al., 2009; Gandhi et al., 2009; Judge et al., 2011). Greater expectations also led to improvements in function following spine surgery (Soroceanu et al., 2012; Yee et al., 2008).

Successfully meeting shared expectations demonstrates effective communication between the patient and the providers and is more likely to lead to optimal patient outcomes (Chou et al., 2009; Staiger et al., 2005). However, concordance between patients' and surgeons' expectations for improvements in symptoms and overall functioning following spine surgery was fair with only those patients having greater expectations than surgeons (Lattig et al., 2013; Mancuso et al., 2021). The strongest predictors of discordance in patient-surgeon satisfaction were unmet patient expectations following hip and knee replacement surgery (Harris et al., 2013). Patients and healthcare providers can have quite different interpretations of surgical success, suggesting that both perspectives need to be considered when evaluating the success of an intervention. Patients should be viewed as partners in the healthcare team, but due to inconsistencies in research methodologies the literature does not provide a well-defined relationship between the two (Cortes et al., 2019; Filbay et al., 2018; Hafkamp et al., 2020; McHugh & Luker, 2012; McGregor et al., 2013; Munn et al., 2021; Swarup et al., 2019; Tilbury et al., 2016).

Virtually no work has been done to examine the effects preoperative expectations have on postoperative satisfaction in pediatric surgeries, and in the extant literature, none focus on pediatric patients with CP (Sieberg et al., 2017; Westin et al., 2012). In the study by Capjon and Bjork (2010), parents who were interviewed prior to their child's surgery were ambivalent to subjecting their children with GMFCS I-III CP to additional procedures. They felt compelled to do so, however, due to their children's deteriorating physical capacity, pain and fatigue, and increasing difficulty in sustaining peer interactions. The parents were cautiously optimistic about the outcome, but unfortunately no postoperative interviews were conducted to compare preoperative expectations and postoperative outcomes. Tsibidaki et al. (2019) focused their qualitative investigation on Greek parents' expectations following orthopaedic surgical corrections for their child with GMSCS V CP using semistructured interviews. Analyses using a descriptive interpretive approach within a pragmatic perspective revealed that while the majority of parental caregivers viewed their child's CP as a major lifelong condition requiring expert care, they held unrealistic preoperative expectations regarding surgical outcomes, with many hoping that their child's improved movement and gait would allow them to walk and experience a much fuller health-related quality of life. Conversely, roughly a third of parents (n = 7/22) viewed the surgery as palliative in nature. When expectations were not met, parents experienced dissatisfaction with the postoperative outcomes (Tsibidaki et al., 2019).

Study Objectives and Aims

The overall objectives of this study were to evaluate preoperative expectations of caregivers of children with GMFCS IV-V CP who underwent hip or spine surgeries and to assess how realistic they were, the implications they had on postoperative satisfaction, and how this relationship evolved over a 5-year period. The study aims were as follows:

Aim I: Explore variations among parental caregivers' preoperative expectations.

Aim II: Identify changes in parental caregivers' expectations preoperatively to 5 years postoperatively.

Aim III: Examine the relationships between the 6-week and 5-year postoperative expectation and satisfaction scores.

Methods and Materials

Design and Source of Data

A qualitative descriptive methodologic approach was used to explore themes related to parental caregiver expectations for Aims I and II (Kim et al., 2017). A descriptive quantitative method was used to examine the relationship between expectation and satisfaction scores for Aim III.

Data were collected as part of a larger 5-year longitudinal study, Health-related quality of life and caregiver burden after hip and spine surgery in nonambulatory children with severe cerebral palsy (Difazio et al., 2016a; 2016b,2017,2022). This study was conducted at a quaternary care children's hospital in the northeast United States. Institutional review board approval was obtained prior to its initiation.

Setting and Sample

Participants for this study were recruited from the interdisciplinary CP center, which follows these children longitudinally. The topic of surgery is introduced early in the child's life. When the ideal window approaches in the child's development for hip or spine surgery, the surgeon meets with the family to discuss the expected outcomes and benefits and risks of surgery. Emphasis of teaching is on the correction of the deformity, not on curing CP. For this study, parents were included if they met the following criteria: (1) had a child between the ages of 3-25 years with severe CP (GMFCS level IV-V), (2) the child was scheduled for hip or spine surgery, (3) he or she was the primary caregiver and cared for the child at home, (4) fluency in English, and (5) willingness to provide written consent.

Procedure

The study was explained to all participants and written and verbal informed consent was obtained. To measure caregiver burden, serial parent proxy measures were collected using the Assessment of Caregiver Experience with Neuromuscular Disease (ACEND) prior to and at 6 weeks and 3, 6, 9, 12, 24, and 60 months after surgery. The ACEND was selected because of its ability to assess the impact of caregiving experienced by caregivers of children severely affected by neuromuscular disorders (Matsumoto et al., 2011). It has two domains: physical impact (feeding/grooming/dressing, sitting/play, transfers, and mobility) and caregiver impact (time, emotions, and finance).

In addition, three questions on the ACEND asked about the caregivers' expectations of, and satisfaction with, their child's surgical treatment. The responses to these questions provide the data utilized for this study. In Question 1, parents were asked to write a short narrative in response to the following open-ended question: "What were your expectations of the treatment?" Of note, the ACEND does not contain a parallel open-ended question assessing parental caregivers' satisfaction with treatment. In Question 2, parents then were asked to report whether the treatment met their expectations on a 5-point ordinal scale from 1 = "never" to 5 = "always." The third question was related to their satisfaction with the surgery. Parents answered on a 6-point ordinal scale to rate their satisfaction from 1 = "Extremely dissatisfied" to 6 = "Extremely satisfied."

Analytic Strategy

Conventional content analysis was used for Aims I and II as it is the appropriate strategy for conducting exploratory work in an area where there is little known information about a phenomenon and the goal is to begin identifying common themes (Hsieh & Shannon, 2005; Vaismoradi et al., 2013). For each analysis, two investigators independently read the text for the presence of selected words and themes present in the open-ended responses. Inferences were then made as to the meaning of the text. The entire team then reviewed and reached consensus on the findings. Descriptive statistics were used for Aim III to examine the expectation and satisfaction scores from the ACEND.

Results

The overall initial sample comprised 70 children with GMFCS IV-V CP who underwent hip (n = 43, 61.4%) or spine (n = 27, 38.6%) surgery. There were no significant differences between the groups of parental caregivers for children undergoing hip or spine surgery in terms of age, gender, or education.

The final sample for Aim I, with its focus on preoperative expectations regarding surgical outcomes for their child, was reduced to 60 as 10 responses on the ACEND's open-ended questions were missing. Thirty-eight (63.3%) were from parental caregivers of children undergoing hip surgery and 22 (36.7%) from parental caregivers of children undergoing spine surgery. For Aim II that examined changes in expectations over a 5-year trajectory, only paired responses from the preoperative and 5-year postoperative assessment points were included. The final sample was 18 responses, 11 (61.1%) from parental caregivers of children undergoing hip surgery and seven (38.9%) from parental caregivers of children undergoing spine surgery. As with all longitudinal studies, attrition resulted from loss to follow up over the study's 5-year trajectory including incomplete responses on the ACEND and, in some cases, child mortality (n = 9). Although the actual number of responses decreased from the preoperative to 5-year period, the proportions between responses specific to hip and spine surgeries were the same. The relationship between expectations and satisfaction was then examined in Aim III. To accomplish this, paired responses from Aim II-where completed expectation and satisfaction ordinal scores existed-were used. This yielded a final sample of 11 responses, eight (72.7%) from parental caregivers of children undergoing hip surgery and three (27.3%) from parental caregivers of children undergoing spine surgery.

Aim I: Explore Variations Among Parental Caregivers' Preoperative Expectations

Initial data extraction revealed 12 codes-the original words or phrases describing preoperative expectations. These were first combined into meaningful categories from which three interrelated themes emerged. These themes represented the three types of preoperative expectations held by caregivers: (1) the surgery would lead to increasing functionality, (2) the surgery would lead to increasing comfort, or (3) the surgery would allow for the child's health to be maintained and future complications to be avoided (see Table 1). A trajectory of parental expectations was evident. They moved along a continuum from highly realistic:

Table 1. Parental Caregiver Preoperative Expectations of Surgery

Straighten legs, extend standing, more mobility

Increased comfort

Prevent curve from getting worse

to hopeful:

Out of wheelchair, first to walker, then to Canadian crutches

Spend more time in stander and gait trainer

Prevent long term pain

to being completely unrealistic:

Walk independently

Weight-bear and walk

See her becoming independent

as noted in these quotes in response to the question: "What were your expectations of the treatment?"

A few responses were completely inconsistent with either the clinical parameters or the developmental course of GMFCS IV-V CP, calling into question parental caregivers' overall appreciation for the severity of their children's CP and underlying neurologic pathophysiology. These two quotes capture parental caregivers' wish for their child to recapture abilities they never had.

Restore walking ability.

Improved comfort which should provide for regaining capabilities.

Aim II: Identify Changes in Parental Caregivers' Expectations Preoperatively to 5 Years Postoperatively

Paired parental caregiver expectations from their preoperative to 5 years postoperative responses on the ACEND's questions were then analyzed using the overall categories of functionality, comfort, and maintenance/prevention of future issues, the three themes derived in Aim I. The focus of parental caregivers' expectations remained consistent for one-half of the parental caregivers (50% [n = 9]) across these two time periods. Examples of demonstrated consistency included the following:

Participant 1, preoperatively: "Most importantly to gain improved comfort through better hip placement, hip flexion, and range of motion in legs."

Participant 1, 5 years postoperatively: "Better positioning and comfort."

Participant 2, preoperatively: "I expect [her] to work hard and become independent for the quality of her life."

Participant 2, 5 years postoperatively: "That [she] will have an ample amount of independence in the future."

Participant 3, preoperatively: "Better life, breathe better."

Participant 3, 5 years postoperatively: "Better quality of life."

Of the 50% whose expectations changed, the majority of parental caregivers experienced diminished expectations with 77.8% (n = 7) moving from corrective to palliative expectations. Examples of this shift in expectations included the following:

Participant 1, preoperatively: "We hope that the surgery will help her positioning so she can sit more comfortably and possibly walk in her walker more easily."

Participant 1, 5 years postoperatively: "Keep her as comfortable as possible."

Participant 2, preoperatively: "To take better steps with right leg, better positioning, and better trunk support."

Participant 2, 5 years postoperatively: "Hip pain to be better."

Participant 3, preoperatively: "With [him] straighter he may be better able to use upper extremities. May be more proficient in using the [augmentative & alternative communication device]."

Participant 3, 5 years postoperatively: "My son needed his neuromuscular scoliosis corrected because of the looming pulmonary issues."

Improving functionality and maintaining health were paramount for the majority of parental caregivers prior to their child's surgery, often tied with hopes for their child's greater mobility, less pain, and greater independence. Five years postoperatively, parental caregivers were less preoccupied with functional abilities and more focused on comfort and palliation.

Aim III: Examine the Relationships Between the 6-Week and 5-Year Postoperative Expectation/Satisfaction Scores

With caregivers demonstrating a range of preoperative expectations and some experiencing changes in expectations over time, implications of these expectations on satisfaction were examined. The self-reported expectation and satisfaction scores provided by parental caregivers at the 6-week and 5-year postoperative assessments were surveyed. The available scores were then matched to the paired responses from Table 2 for a final total of 11 separate case reports (see Table 3). Regardless of parental caregivers' preoperative expectations, their consistency or transformation at 5 years postoperatively, or their reported expectation scores, a clear relationship between expectations and postoperative satisfaction was not identified. Of note, however, is that for the majority of parental caregivers, expectations regarding their child's surgical outcomes were met and that they were satisfied.

Table 2. Changes in Preoperative Parental Caregiver Expectations: Preoperatively to 5-year Postoperatively

Table 3. Relationships Between Parental Caregiver Preoperative Expectations and 5-Year Postoperative Expectations and Satisfaction

Discussion

The extant literature on expectations primarily focuses on patients' expectations for their own clinical outcomes. This study provides initial but substantive insights into expectations by proxy. First and foremost, parental caregivers' expectations specific to their child's surgical outcomes were generally consistent with the goals of surgery as noted in Aim I findings, focusing on improved functional status and comfort. Overwhelmingly, expectations focused on positive outcomes that their child may experience, or, at a minimum, future problems that could be prevented. No parent, however, expressed concerns regarding the possibility of complications despite their child being at increased medical risk for surgery as discussed with the CP team in presurgical meetings. Of interest is that their expectations were focused directly on the child's well-being. Very few expectations directly or indirectly addressed improved ease of caregiving despite the interconnectedness between a child's comfort and functional abilities and caregiver burden (DiFazio et al., 2022).

Parental caregivers' expectations shifted somewhat over time from the preoperative period to 5 years postoperatively. Expectations for improved functionality diminished as expectations for child's comfort became more predominant. This is consistent as these children's general health deteriorate with age, growth, functional abilities, and more pronounced secondary comorbidities, such as respiratory and nutritional issues arise (Chiang et al., 2019). For example, for children undergoing spine surgery in the larger study from which this sample was drawn, improvements in the child's overall health-related quality of life-including activities of daily living and positioning-regressed to baseline after 2 years following spine surgery (DiFazio et al., 2017). In spite of shifts in expectations over time, parental caregivers were generally quite satisfied with the surgical outcomes both in the immediate 6-week postoperative period and at the 5-year postoperative period.

Understanding the nature of the realistic expectations as contrasted to ideal/hopeful expectations needs further explication. If, for example, preoperative expectations are highly hopeful but become more realistic over time, how does this affect patient-centered education and shared decision-making? A multimethod study including a large, narrative review of qualitative and quantitative articles (n = 211) followed by instrument development investigated the structures and processes of healthcare visits. Across the study components, results revealed that patients' postvisit care experiences were lower than their hopes about what would occur; some were completely unmet with a few specifically related to condition management exceeding what they expected (Bowling et al., 2012). Fulfilled expectations around the processes of care influenced patient satisfaction. Whether patient expectations regarding the outcomes of care are realistic, however, is unclear.

Expectations by proxy and their role in decisions regarding surgery add another layer of complexity. Parental caregiver expectations are likely influenced by their previous encounters with the healthcare setting and personnel, individual temperament (optimistic, pessimistic), sense of self-efficacy, temporal orientation (present or future), other family, and other cultural and economic factors. A fuller understanding of this complex nexus of factors and how they influence perceptions and satisfaction with their child's care needs to be explored.

Shared Decision Making

Clear communication from the surgical team within a shared decision-making milieu is required when surgery is contemplated. Research has indicated that when queried about their expectations of care, adult patients' expectations of care focused on the processes of care, especially doctor-patient interactions (Bowling et al., 2012). A physician's character, demeanor, confidence and competence, ability to listen, and explain about their condition and treatment were critical to patients (Bowling et al., 2012). Parental caregivers are tasked with deciding for their child whether, and when, these surgeries should be performed. Preoperative discussions usually center on correcting the orthopaedic deficit which in turn, generally allows for some improvement in the child's ability to engage in activities of daily life, specifically sitting and fuller range of motion. The extent to which discussions between the parents and CP teams specifically explicate the limits surgical corrections have in addressing global developmental delay and impact on caregiver burden is unknown.

Limitations

These findings are limited to the role of parental caregiver expectations and satisfaction on the anticipated outcomes of their children's surgery as reported in responses to open-ended questions on the ACEND. Because these responses were drawn from a longitudinal data set, there were no opportunities for follow-up interviews allowing for a deeper exploration of relevant phenomena.

Implications for Nursing

Current Recommendations for Nursing Practice

Orthopaedic nurses caring for children with CP and other medically complex conditions are well positioned to assist families across the trajectory of surgical care. As these children are followed from birth, families often develop long-term trusting relationships with clinic nurses. When contemplating surgery, nurses should explicitly explore parental expectations regarding the procedure, follow-up care, and anticipated outcomes for their child. They can clarify any unrealistic misconceptions parents may hold while not diminishing parents' hope for a better future for their children. Preoperative teaching should specifically address the need for additional support following discharge to home so that parents can plan appropriately. This should be reinforced during discharge teaching. In addition, and from the vantage of parental expectations, detailed and personalized information specific to pain management, positioning, and device utilization using a teach-back approach should be addressed prior to discharge (Kornburger et al., 2013.) Although these parents routinely provide comprehensive care for their child, inpatient nurses would be remiss to assume that these parents are well prepared to cope with their child's care demands immediately upon discharge. Consideration should be given to adapting postdischarge patient satisfaction surveys to explicitly include questions as to whether expectations were met or were not met. This can then serve as a quality metric and guide any needed practice changes.

Future Directions for Nursing Research

A fuller understanding of parental caregiver expectations of surgical treatments and outcomes is needed to explore specific facets of the relationships between expectations and satisfaction. Future qualitative research using in-depth serial interviews would further explicate our understanding of the role hope plays in establishing realistic or unrealistic expectations and how these change over time. In addition, focusing on the congruency of parental caregiver expectations and those of providers and how best to ensure that families "hear" what providers think they are saying is critical. Such information is foundational to creating educational interventions designed to improve shared decision-making. Finally, parental caregiver expectations of their child's surgical outcomes need to be explored within the greater context of care provision. Nursing, with its holistic lens, is perfectly situated to advance the science in these areas.

Conclusions

Nurses working alongside families of children with CP are in unique position to facilitate an appreciation for parental caregiver expectations of surgical treatments. Developing a deeper understanding of the role parental expectations play across the perioperative trajectory will improve communication, lead to more realistic goal setting, and result in more personalized teaching for the child and the family. Together, these changes will contribute to improving surgical outcomes of these children and their families.

References