Abstract
Purpose
The purpose of this focused ethnographic study was to explore the quality of life (QOL) of school-age heart-transplant recipients.
Design and Methods
Semi-structured interviews were conducted with 11 parent-child dyads. Data were analyzed using content analysis and constant comparison.
Results
Participants identified key factors impacting the children’s QOL including: participation in normal activities, normalcy, staying healthy, sources of strength and support, and struggles (parents’ perspectives) and doing what kids do, being with family and friends, and being a heart transplant kid (children’s perspectives).
Practice Implications
Interventions focusing on the key factors identified by participants may impact the QOL of school-age heart-transplant recipients.
Search terms: Organ transplantation, quality of life, school-age children
Since the mid 1980s, heart transplantation (HT) has prolonged the lives of thousands of children with end-stage heart disease. However, few studies have explored children’s quality of life (QOL) after HT. Research that views QOL from a multi-dimensional perspective and incorporates both parents’ and children’s views is desperately needed to guide interventions that maximize QOL after HT. Therefore, the purpose of this research was to investigate the QOL of pediatric HT recipients from both the parents’ and children’s perspectives.
Literature Review
Though researchers have been exploring QOL in chronically ill children for two decades, research focusing on children post HT is rare. Early research defined QOL narrowly and focused on functional aspects of QOL such as participation in activities or New York Heart Association Functional Class (Pennington, Sarafian, & Swartz, 1985; Sigfusson et al., 1997). Though these studies reported good QOL for the majority of children based upon good functional status, viewing QOL along a single dimension is inconsistent with modern definitions of QOL, which indicate that QOL is a multi-dimensional phenomenon, including physical and psychosocial dimensions (Eiser & Morse, 2001; Hinds & Haase, 2003).
Early work that viewed QOL from a multi-dimensional perspective relied on psychosocial variables, such as emotional adjustment, relationships, behavioral problems, and intelligence quotient as proxies for QOL (Lawrence & Fricker, 1987; Wray, Radley-Smith, and Yacoub, 1992). Each of these teams described improvements in children’s QOL after heart or heart-lung transplant. However, serious educational, behavioral and social issues persisted post transplant. Though data were collected from both parents and children, data were not collected on the same variables; therefore, parent and child agreement could not be assessed.
More recent research teams (Apajasalo, Rautonene, Sintonen, & Holmberg, 1997; Pollock-BarZiv, Anthony, Nieedra, Dipchand, & West, 2003) have described children’s QOL as excellent and/or equivalent to that of healthy controls based upon multi-dimensional measures of QOL. However, the research teams also identified specific concerns. Apajasalo et al. reported pediatric heart, lung, and kidney transplant recipients’ (n = 59) scores on age-appropriate measures of QOL were equivalent to those of healthy controls. However, 8 to 11 year olds scored lower than healthy controls (p = .002), mostly related to the dimensions of concentrating, eating, and making friends (p < .05). The entire sample reported more problems with mobility, usual activities, and school than healthy controls. A second team (Pollock-BarZiv et al.) described excellent perceived QOL based upon a visual analog quality of life scale (VAQOL) and Pediatric Quality of Life Inventory 4.0 (PedsQL 4.0; Varni, Seid, & Kurtin, 2001) scores that were equivalent to healthy controls. However, subscale scores suggested that at least a subset of this group experienced physical and academic difficulties that negatively affected QOL. Each of these teams’ data were collected only from the children; therefore the parents’ views of the children’s QOL remain unknown.
While most of the research to date has been quantitative, a recent qualitative study (Olausson et al., 2006) described the QOL of 44 heart, lung, liver, or kidney transplant recipients between 4 and 18 years of age. Participants reported that the children’s lives were normal and did not revolve around the transplant experience. However, important social concerns were identified including the inability to keep up with peers, dislike of negative attention, and feeling different from peers because of scars. The Olausson et al. study was the first to explore children’s subjective perceptions in depth. However, parents were not interviewed, and their perceptions remain unknown.
Though research on QOL in children after HT remains in its infancy, research has progressed from single-dimensional to multi-dimensional assessment of QOL. Though the studies describe good or improved QOL, they also have revealed social and academic concerns, behavior problems, and issues related to activities and mobility. We have not yet compared parents’ and children’s perceptions of child QOL post HT. This is crucial information because parents’ and children’s perceptions differ in other pediatric chronic illnesses and do not do so according to a set pattern (Eiser & Morse, 2001). Further, because parents make medical decisions for their children based upon their own assessments of their children’s QOL, understanding how parents’ and children’s perceptions compare will promote incorporation of children’s perspectives into medical decision-making. Therefore, findings from this study provide an important view of QOL post HT from both the children’s and parents’ subjective perspectives.
Aims
The aims of this study were to 1) describe school-age children’s and parents’ perceptions of the children’s QOL post HT, including key factors that may impact the children’s QOL, and 2) compare the children’s and parents’ views of the children’s QOL post HT.
Methods
Design
A focused ethnographic approach was selected to permit holistic and meaning based examination of the QOL from the insider’s (child’s and parent’s) perspective (Wolf, 2007). Recipients and their parents comprise an important cultural subgroup with shared meanings, beliefs, and experiences (Wolf) that must be understood in order to understand the QOL of children after HT.
Sample and Sampling Process
After obtaining institutional review board approval, purposive sampling techniques were used to select school-age HT recipients and their parents for the study. English-speaking parent-child dyads were eligible for inclusion if the child was between 6 and 12 years of age, at least 6 months post most recent HT, and received follow-up care at the large regional transplant clinic that served as the recruitment site.
Qualitative Interviews
The research team developed separate interview guides for the parents and children. The parent interview guide was developed based upon the work of McSweeney and colleagues (1995) with adult HT recipients and their spouses (see Table 1). The child interview guide was an adaptation of an interview guide used by Hinds et al. (2004) for children with cancer (Green, McSweeney, Ainley, & Bryant, 2007). Each guide was reviewed by content and methods experts prior to use.
Table 1.
Parent Interview Guide
| Parent | |
|---|---|
| Lead in/Global question | Tell me about your child’s life since the heart transplant. |
| Main questions | Tell me about times since the transplant that have been especially good for your child. |
| Tell me about times since the transplant that have been especially bad for your child. | |
| What are the key factors that affect your child’s quality of life? | |
| How do you go about deciding what activities you will allow your child to participate in? | |
| How has having a heart transplant been for your child? | |
| Is there anything else you would like to say? |
The Principal Investigator (PI), an advanced practice nurse with more than a decade of experience caring for children and families after transplant, conducted all of the qualitative interviews to provide consistency. Children and parents were interviewed separately. All interviews occurred at a time and location of the participant’s choice, usually the family home or a private location in the hospital. Children’s interviews were initiated by asking them to draw a picture of themselves on a good day to establish rapport and facilitate a more natural conversational flow. Although all participants addressed the topics on the interview guide, the semi-structured format allowed them to tell their stories in the manner they chose. Therefore, questions were not necessarily asked in sequential order. Parent interviews lasted, on average, 1.5 to 2 hours, whereas the child interviews lasted approximately 30 to 60 minutes. Follow-up interviews lasted 5-10 minutes. All interviews were audiotaped and transcribed verbatim.
Data analysis
Each interview transcript was checked for accuracy before entering it into Ethnograph 5.0 (Seidel, 1998), a data management program. Data collection and analysis were concurrent as is standard with qualitative studies (Morse & Field, 1995). Content analysis was used to identify raw data clusters in individual interviews followed by constant comparison to compare each data cluster with all other data clusters. This process was applied initially to each individual participant’s interview to identify the individual perspective. Next, the process was applied to the child interviews and parent interviews separately to identify child and parent perceptions of the child’s QOL and the key factors identified by each group as impacting QOL. Following this between-groups analysis, the researcher compared the parent and child perspectives, both across dyads and across all children and adults to allow comparison of the child and parent perspectives. Through this iterative process, clusters were combined based upon similar meanings to yield factors. The factors with similar meanings were then combined to yield more abstract themes. An experienced qualitative researcher reviewed coding and analysis to enhance trustworthiness, the qualitative counterpart to reliability and validity.
Results
Findings are presented in the following order: sample description, parents’ views, and children’s views. Finally, the parents’ and children’s views are compared and discussed. To assist the reader key themes are italicized and the factors that comprise the themes are underlined.
Sample Description
Eleven racially diverse parent-child dyads participated in the study (see Table 2). Parents who participated were primarily female (91%) with a mean age of 34 years. Only 30% were employed outside the home, and all had at least a high school education. The average age of the children (7 girls and 4 boys) in the sample was 9 years. Most were transplanted prior to 4 years of age for congenital heart disease. All of the children were attending school. Parents reported that 4 of the children were in special education classes or had cognitive delays.
Table 2.
Child and Parent Demographics (N = 22)
| Participants | ||
|---|---|---|
| Age | Children: | Parents: |
| mean 9.1 ± 1.95 years (range 6-11) | mean 34 ± 5.79 years (range 29-50)* | |
|
| ||
| Gender | Children: | Parents: |
| Female 7 | Female 9 | |
| Male 4 | Male 2 | |
|
| ||
| Race | Children and Parents: | |
| Native Hawaiian or Pacific Islander | 2 | |
| White | 14 | |
| Black or African American | 6 | |
|
| ||
| Reason for transplant | Congenital heart disease | 10 |
| Cardiomyopathy | 1 | |
|
| ||
| Child’s age at transplant | mean 2.3 years ± 2.75 (range 0.07-9 years) | |
| 82% at less than 5 years of age | ||
|
| ||
| Number of medications per child | 6.2 ± 2.9 (range 4-14) | |
|
| ||
| Parent’s marital status | Married | 9 |
| Divorced | 2 | |
|
| ||
| Parent’s highest education | 12th grade or GED | 4 |
| Some college or vocational school | 4 | |
| College graduate | 2* | |
|
| ||
| Parent’s employment status | Currently employed | 3 |
| Not currently employed | 7* | |
|
| ||
| Annual family income | Less than $10,000 | 1 |
| $20,000 -$29,999 | 1 | |
| $30,000 -$39,999 | 4 | |
| $40,000 -$49,999 | 4* | |
Not answered by 1 participant
Parents’ Views
Twelve global factors that parents’ perceived as key factors affecting their child’s QOL emerged in response to the interview questions (see Table 3). The factors were then collapsed based upon similarities in meaning into five broad themes: enjoyable activities, normalcy, staying healthy, sources of strength and support, and struggles. Parents’ overall descriptions of QOL are presented first, followed by the key themes that emerged from the interviews.
Table 3.
Themes and Factors Parents Described as Affecting Their Children’s QOL
| Theme | Factors Reporting (N = 11) | Raw Data Quotes |
|---|---|---|
| Enjoyable activities | Participate in enjoyable activities (n = 11) |
|
| Restrictions/limitations (n = 10) |
|
|
|
| ||
| Normalcy | Being a normal child (n = 6) |
|
| Treating them normal (n = 1) |
|
|
| Making the regimen normal (n = 3) |
|
|
| Siblings and friends (n = 3) |
|
|
|
| ||
| Staying healthy | Following regimen (n = 6) |
|
| Being vigilant (n = 3) |
|
|
|
| ||
| Source of strength and support | Family (n = 4) |
|
| God (n = 2) |
|
|
| Friends (n = 1) |
|
|
| Transplant experience (n = 1) |
|
|
Note: QOL = Quality of life
Overall QOL
In response to the broad opening interview question of, “Tell me about your child’s life since the transplant,” the majority reported “really very good.” Three of the parents used the word normal, indicating that they perceived their children’s lives and the quality of those lives as “normal” or “just like a normal child’s.” According to the parent of a 9-year-old boy, “He doesn’t look at it like, ‘okay, I’m different.’ He just lives life like he is normal.” Two parents, though also positive, used more neutral phrases such as “He has been doing fine” and “She has adapted real well to life.” None of the parents described the children’s QOL using negative terms.
More than 75% of the children were infants or toddlers when transplanted. Three parents felt that this made life easier for their children and made comments such as, “The fact that she got the transplant when she was 3 months old made a huge difference because she never knew any difference.” Parents of children who were toddlers or older at transplant had clear memories of how much better the child’s life was after the transplant. A parent of a child who was school age when she received the transplant described the impact of transplant by saying:
Beforehand, you hate to say it was awful, but it was. And I guess at the time it was happening, it was normal for her and that’s the way she’d been since birth, so you maybe didn’t see those things until you look at the videos now, see how she is now, all the things she can do now that she couldn’t do then, and then you realize the difference and how much better her quality of life is all around…Everything is better. I think her health is better. She feels better; she has more energy to do things; she’s out in social situations.
Enjoyable Activities
The first theme that emerged from the parents’ interviews was enjoyable activities, which focused on the child’s participation in enjoyable activities and any restrictions or limitations on participation. The most important factor was participation in enjoyable activities as evidenced by100% of parents reporting this factor, many of them multiple times. Parents described the importance of “being able to do all the activities he likes to do” and named activities such as Cub Scouts, playing basketball with friends, fishing, and swimming. Two parents discussed how much their children enjoyed school and described that as key to their children’s QOL.
The factor restrictions/limitations was closely related to participation in enjoyable activities. Four parents reported that they placed no restrictions on desired activities. Parents described the impact of restrictions (or the lack thereof) on QOL, including the mother of a 7-year-old girl who reported,
If I restricted her from everything, “You can’t go over there because you might get sick or you can’t do this because you might not feel well.” I just felt she wouldn’t have flourished as much as she has. We’ve never really tried to restrict her, and that has really helped because she doesn’t feel like she has to stand back while everybody else gets to participate.
The remainder of parents reported imposing restrictions primarily due to 1) transplant team advice (limiting sun exposure for example), 2) parental perceptions of infectious disease risk, or 3) the child’s physical ability. Two mothers described concerns regarding infectious disease risk in restaurant play areas, one of whom never allowed her child to play in those areas despite the child’s repeated requests to do so. Other parents described limitations in the child’s ability to participate in activities primarily because of lack of stamina and/or strength (n = 6). One mother reported that although her child played soccer, “Her stamina is not like theirs [healthy children]. Some of the skills that they have she just doesn’t have the strength.” Other parents reported that their children’s physical abilities were more limiting, including one parent who reported, “During the recess on the playground a lot of activity he couldn’t do. And a lotta sports he can’t play because it’s physical.” This seemed to be an increasing problem with age, particularly for boys interested in participating in sports. According to one mother,
And when it comes down to trying out for a team, we don’t even do it. You know, if we’ve gone to the practice and gone to the meeting and then he finds out there’s tryouts, he won’t do it. Because he knows he’s not gonna get picked.
Normalcy
Parents also described the importance of “just every bit of Normalcy they can have.” This theme comprised the factors being a normal child, treating them normal, making the regimen normal, and siblings and friends. Six parents described the importance of being a normal child. When asked about the key factors impacting their children’s QOL, parents responded with phrases such as “having a normal life like any other person” and “the fact that she can be normal now.” There was an important connection between being a normal child and participation in enjoyable activities as at least 2 of the parents defined being a normal child by being able to “do everything a normal kid would.”
Seven of the parents described the importance of “mostly just treating them as normal as possible.” Though this was not always easy for the parents, treating them normal meant the child was disciplined, had chores, was expected to do his/her homework, and “wasn’t treated special.” The mother of a 10-year-old boy described this so eloquently.
You can’t give a child that crutch to use for the rest of their life. I don’t ever wanna make him think that because he’s sick there might be certain things he should or shouldn’t have to do. There’s too many ways to find a crutch to keep you from maximizing your potential anyway. And I’m not gonna hand him one.
Three parents described the importance of making the regimen normal or incorporating the regimen into normal routines like “brushing your teeth or combing your hair.” Finally, 3 parents reported that having relationships with siblings and friends added normalcy to their children’s lives. According to one of the parents, “One or two really good friends…that she can just totally ignore it [transplant] if she wants to and just be normal. Just a couple of key people who treat her totally normal.”
Staying Healthy
Most of the parents identified the importance of staying healthy (n = 7) to their children’s QOL. This theme comprised the factors following the regimen and being vigilant. When the parents spoke about the importance of their children’s health, they used phrases, such as “keep her healthy” or “make sure she stays well,” suggesting they felt that they had some control over their children’s health. The factors following the regimen and being vigilant seemed to be the manner in which they tried to exert control. Though all parents believed in the importance of following the regimen, only 6 directly linked following the regimen to their children’s QOL. Parents (n = 3) also believed that their vigilance to their children’s health was important to their children’s QOL. One parent reported, “making sure she stays healthy and that you monitor or just being vigilant that you don’t let anything get to a point that could be serious.”
Sources of Strength and Support
A third theme that emerged from the parent interviews was the importance of sources of strength and support to the child’s QOL. Family (n = 4), especially parents, was the most frequently identified source of support. One mother described the importance of “supporting it [the child’s own inner strength] with some outer strength; that if you need to lean on us, we’re here for you.” This same mother described the importance of friends “who are gonna be a major support system through your life,” but no others discussed friends.
Two parents identified the importance of God as a source of strength and support for their children. According to one of the parents, “Just keeping her spiritually grounded…teaching her you don’t wanna turn away from God because you have these things going on. If anything you want to turn to God and lean on Him.” Finally, one parent described the child’s transplant experience as a source of strength. Her words were,
I think that everything that she has been through has been an advantage for her…This has just made her so strong. She overcomes just about anything that gets in her way. I know it’s strange and I hate to say it, but I really think this has helped her through life. That if anything comes her way that she’s gonna overcome it.
Struggles
Though the parents’ descriptions of their children’s QOL were positive, all described struggles their children experienced; though they did not directly relate those struggles to the children’s QOL. The most frequently described struggle was treatment related distress, primarily related to blood draws (n = 5) and biopsies (n = 4). Parents of both boys and girls across all ages described difficulties related to blood draws. According to one parent, “Having his blood drawn every time. He just walks in that room and he starts crying… It is always hard to get his blood drawn, but it’s just part of it.” Parents described two difficulties associated with biopsies: fear or anxiety that seemed to increase with age (n = 2) and pain associated with bandage removal (n = 2). According to the father of an 11-year-old boy, “Well now that he is older the biopsies…he’s real aware of what is going on so he gets extra scared now.” The mother of a 6-year-old boy reported, “Biopsy isn’t nearly as bad as taking the bandage off. He has the most sensitive skin, and that is harder than the biopsy.” Five parents described difficulties the children experienced because of their appearance including being “self-conscious about the scar” and medication-related side effects such as “gums thickening.” They described additional struggles related to being teased or bullied (n = 7), usually due to medication related appearance changes, such as gingival hypertrophy. Others described struggles related to other medical problems such as renal dysfunction (n = 1), developmental delays (n = 2), depression (n = 1), and orthopedic problems (n = 2). Two of the parents reported that the “other health problem” had more of a negative impact on their children than the HT.
Children’s Views
A brief synopsis of the children’s views is presented below. A complete description of the children’s views is reported elsewhere, including a detailed table describing the themes, factors, and raw data that support each theme (Green, McSweeney, Ainley, & Bryant, 2007).
The majority of children reported that their lives were “mostly good” and described their lives using phrases such as “amazing that you made it through all of it” or “fun.” Only 1 child was not positive, a 6-year-old boy who described his life by writing the word “shots.” Though the children were mostly positive about their QOL, they described aspects of their lives that were both easy and not easy. Three key themes emerged from the children’s interviews: doing what kids do, being with friends and family, and being a heart transplant kid. An overview of the key themes, representing key domains impacting the children’s QOL, follows.
Doing What Kids Do
This theme focused on participation in developmentally appropriate recreational and educational activities and included descriptions of doing things/going places, favorite school activities, and hard things about school. Doing things/going places was the most important factor. The children described a multitude of activities such as going camping, riding bicycles, and playing with friends or siblings. Though the children stressed participation, the PI asked if there were activities the children would like to participate in but could not; 5 reported being unable to participate in desired activities. Two older children also discussed being unable to keep up with peers physically, indicating that “mostly I get tired before they do.”
All of the children were attending school: 10 in the community and 1 home-schooled. When describing good days at school, the children’s focus was favorite school activities, such as recess, music, or computer, rather than academics or accomplishments. Though favorite school activities were an area of focus, 5 of the children also described hard things about school, mostly being bullied or teased by peers. A bad day at school for 1 child was when a bully “makes fun …and he tries to get me to fight him, but I won’t.” Even more problematic for the children was being teased or bullied related to the transplant or medication side effects including “when my mustache was grown out…in kindergarten…they would always come in and start making fun of me.” Children also described being “made fun of” because of the sternotomy scar and “being picked on” for cyclosporine-related gingival hyperplasia.
Being with Friends and Family
The second key theme was being with friends and family, which encompassed spending time with, interacting with, and doing things/going places with friends and family. This theme was the second most important as evidenced by the frequency of the children’s responses to the interview questions. Ten of the 11 children identified the importance of doing things and going places with friends and family and described activities such as “family movie” or “watch tv with [friend’s name].” Six children described the importance of being with or seeing friends and family using age-appropriate language, such as “hanging out with friends,” “seeing my friends at school,” etc. Of note, 5 of the 6 children were girls, suggesting this factor may be more important to girls in this age range. The children described both supportive and negative interactions with friends and family.
Being a Heart Transplant Kid
The final key theme for the children was being a heart transplant kid, which consisted of the factors: taking care of my heart, my body, other health problems, and the transplant team. This was not the children’s central focus. However, this theme appeared to gain more importance as children matured because the older children identified this theme more frequently. The most notable aspect of this factor was the children’s discussion of painful and/or scary aspects of ongoing treatment, including needle sticks (n = 6) and biopsies (n = 3). The children also described problems with their bodies (n = 4), including changes in appearance related to medication, such as hirsutism and scars. In addition, 3 children identified the negative impact of other health problems on their QOL, including asthma and gastrointestinal problems. The child with asthma reported that his asthma bothered him more than having an HT and described incidents such as, “One time we were out shooting [basketball] and you have to run around the park for 4 times…I almost lost my breath and I almost passed out.” Finally, 3 female participants identified the transplant team as a positive aspect of being a heart transplant kid. They described going to clinic as an enjoyable social event where they got to see their doctors and nurses. One child admitted that she loved the attention she received there and that the team was “like family.”
In conclusion, the children were positive about their QOL, indicating that it was “mostly good.” However, they described aspects of life that were not easy. The prime importance of two of the key themes, doing what kids do and being with friends and family, is developmentally appropriate for school-age children, particularly since they tend to interpret health and illness in terms of interference with desired activities (Vessey & Rumsey, 2004). However, one would expect that a sense of accomplishment might also be important developmentally (Vessey & Rumsey, 2004), and this was not the case.
Comparison and Discussion
This was the first study to compare parents’ and children’s subjective perceptions of the children’s QOL post HT (see Table 4). Both groups were generally positive about the children’s QOL. However, there were important differences as have been described in other pediatric chronic illness populations (Eiser & Morse, 2001; Parsons & Brown, 1998). Overall, the parents were more positive than the children, both within and across dyads. Parents used more positive descriptors to describe their children’s QOL, such as “really very good,” while children tended to say “mostly good” to describe their QOL. Parents were also more likely to identify factors that contributed positively to the children’s QOL. Since this study investigated school-age children, it is unknown if parents are more positive across all age groups or if this is unique for parents of school-age children. Other studies have reported lower QOL for children between 8 and 11 years of age, the age range of most of the children in this study (Apajasolo et al., 1997). The parents in this study may have been more positive than the children because they had clear memories of the children’s health pre HT and a full appreciation of the positive health changes post HT. In contrast, most of the children in this study did not remember their experiences pre-transplant and, therefore, their perceptions were unaffected by the positive health changes post transplant.
Table 4.
Comparison of Parent and Child Views of the Child’s QOL after Heart Transplant
| Agreed |
|
| Differed |
|
Both parents and children described struggles or aspects of life post transplant that were not easy. Parents were much less likely to describe those struggles as negatively impacting the children’s QOL because they did not always affect the child on a daily basis. Therefore, parents may not have fully appreciated the impact of struggles (as defined by the parents) or being a heart transplant kid (as defined by the children) on the children’s QOL. Other researchers have reported that parents do not fully appreciate transplanted children’s distress (Shemesh, Annunziato, & Shneider, 2005), perhaps because parents believe that the improved prognosis balances the distress. For children, this is not the case, which is probably related to cognitive limitations in understanding the concept of prognosis.
Parents and children agreed on the most important theme impacting children’s QOL – described as enjoyable activities by the parents and doing what kids do by the children. Despite this, parents described perhaps unnecessary restrictions, such as not allowing the child to play on a restaurant playground because of fear of infectious diseases. Further, both groups reported that the children have decreased stamina relative to their peers that interfered with participation in desired activities. The lack of stamina is likely a reflection of impaired exercise performance as has been reported by other researchers who have evaluated exercise capacity using graded cycle or treadmill protocols (Davis et al., 2006).
The second most frequent theme that parents identified, normalcy, was not identified by the children. It is striking that the children did not use the word normal at all when parents often used it in response to the interview questions. However, the children clearly valued normal childhood activities (doing things/going places and being with family and friends). The parents’ focus on “normal” may indicate that they recognize how important normal childhood activities are to the children. However, it may be that parents use their perceptions of normalcy as a benchmark against which to compare their children and other children’s activities. Additionally, since most of the children did not remember their life pre transplant, their lives post transplant were likely normal to them.
The theme staying healthy was yet another key domain that was not identified by the children. The children discussed activities to maintain health and the impact of those activities on their QOL. They did not identify their state of health as key to their QOL. The fact that the children did not identify staying healthy may reflect that they take their current state of health for granted, since only 2 of the 11 remembered the time before transplant. In addition, the parents’ discussions made it clear that they felt very responsible for their children’s health. Statements such as “make sure she stays well” and “keep her healthy” made it appear that parents felt they had some control over their children’s health, mostly through monitoring and vigilance.
Research Implications
This study provided initial insights into parents’ perceptions of children’s QOL post HT and how those perceptions compare to the children’s perceptions. Perhaps of greater importance, the findings provide focus areas for nursing interventions that would likely improve the QOL of children after HT, including parent education that encourages and supports child participation in developmentally appropriate activities and interventions to decrease pain with repetitive medical procedures. However, additional research is needed including multi-site studies with larger samples, research focusing on the perceptions of fathers, and research focusing on the QOL of HT in other age ranges. Further, longitudinal studies would help to elucidate how the parents’ and children’s perceptions change with time post transplant and children’s developmental maturity.
How Do I Apply These Findings to Nursing Practice?
Routine assessment of children’s QOL from both the children’s and the parents’ perspectives with each clinical contact is essential. The children in this study described their lives using “easy” and “not easy” language. Simply asking the children what is easy for them and what is not easy for them may give important clues to their QOL and assist in developing interventions that might improve QOL such as coping-skills training and/or peer support.
Participation in activities was the most important theme identified by both parents and children. Education and support that empowers parents and children to select activities that the children enjoy is very important. However, a small number of parents described restricting activities that the children desired, perhaps unnecessarily. Therefore parent education and support that helps them interpret the medical instructions in the least restrictive manner is essential. Further, many children lacked stamina and strength by both parent and child report. Interventions to improve stamina and strength, such as cardiac rehabilitation within the first 3 months post HT as recommended by Fricker (2002) and strength training, may improve QOL as well as cardiopulmonary fitness.
Both parents and children described the negative impact of repetitive painful aspects of the transplant regimen. Therefore, evidence-based interventions aimed at decreasing the pain associated with minor procedures should improve children’s hospital and clinic experiences substantially, and for some children, this would also improve their QOL. This may have the added benefit of improving the QOL of parents of HT recipients, as Tilford et al. (2005) have described the negative relationship between parent QOL and child pain in families with a child who has a chronic medical condition.
Acknowledgments
This study was funded by the National Institutes of Health, under Ruth L. Kirschstein Nursing National Research Service Award F31NR009133 from the National Institute of Nursing Research, Society of Pediatric Nurses, Gamma Xi Chapter of Sigma Theta Tau International.
The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institute of Nursing Research, the National Institutes of Health, or other funding agencies.
Contributor Information
Angela L. Green, John Boyd Family Endowed Chair in Pediatric Nursing and Director of Nursing Research, Arkansas Children’s Hospital, Little Rock, AR, USA.
Jean McSweeney, Professor, College of Nursing, University of Arkansas for Medical Sciences, Little Rock, AR, USA.
Kathy Ainley, Transplant Coordinator, Arkansas Children’s Hospital, Little Rock, AR, USA.
Janet Bryant, Transplant Coordinator, Arkansas Children’s Hospital, Little Rock, AR, USA.
References
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