Families' Views of Pediatric Palliative Aquatics: A Qualitative Study

Original Article Families’ Views of Pediatric Palliative Aquatics: A Qualitative Study ---

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From the *Health Sciences Research Institute, University of California, Merced, California; †UCDavis Children’s Hospital, Sacramento, California. Address correspondence to Erin Gaab, PhD, Health Sciences Research Institute, University of California, 5200 Lake Rd, Merced, CA 95343. E-mail: [email protected] Received July 27, 2014; Revised September 26, 2014; Accepted September 29, 2014. 1524-9042/$36.00 Published by Elsevier Inc. on behalf of the American Society for Pain Management Nursing http://dx.doi.org/10.1016/ j.pmn.2014.09.012

Erin Gaab, PhD,* and David M. Steinhorn, MD†

ABSTRACT:

Although pediatric palliative care policies and services have been developed, research in this area continues to lag. An integrated model of palliative care has been suggested by the American Academy of Pediatrics and includes complementary and alternative services aimed at improving the well-being of children and their families. The firstknown pediatric palliative aquatics program (PPAP) in California uses several techniques to decrease pain and promote well-being through relaxation and interaction between patients, specialists, and family members. This study investigates the perceptions of family members of their children’s experiences with a PPAP. Researchers from an outside institution conducted focus groups and interviews. Themes were extracted from the focus group transcripts using Braun and Clarke’s method of inductive thematic analysis. Data were collected at the host site, local libraries, and participant homes. Participants were primary caregivers and siblings (n ¼ 23) of children in a PPAP, an independent children’s respite, transitional, and end-of-life care facility in California. The research described and drew implications from the diverse perceptions that family members expressed about the benefits of having a child in the PPAP, including sensory, physical, and social experiences. Although the PPAP aims to promote well-being through relaxation, several other benefits were expressed by family members of children going through the program, including pain relief. Published by Elsevier Inc. on behalf of the American Society for Pain Management Nursing

BACKGROUND The pediatric palliative aquatics program (PPAP) mirrors the goals of palliative care. The PPAP aims to ‘‘provide comfort and support, pain and symptom management, and quality of life for our patients at George Mark Children’s House’’ (GMCH; S. Pyatt, personal communication, February 2, 2013). The first-known PPAP was formalized in October 2006. The program builds on Jahara philosophy and incorporates techniques that cater specifically to the needs of children at GMCH. Jahara is ‘‘an aquatic therapy method founded in body awareness, healthy body mechanics and the gentle power of water. It consists of micro-adjustments Pain Management Nursing, Vol 16, No 4 (August), 2015: pp 526-533

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of the structural alignment of the body’’ (Jahara Technique Teachers Association, 2008). Adjustments are made by a Jahara specialist who works with clients in warm water using gradual, continuous movements. The creators of the method assert that there is no stated objective, but suggest that the technique promotes relaxation and feelings of well-being for the client.

LITERATURE REVIEW The need to focus on the quality of the lives of children receiving pediatric palliative pare (PPC) is an international issue (Himelstein, Hilden, Boldt, & Weissman, 2004), that might be improved with complementary and alternative treatment approaches (Mansky & Wallerstedt, 2006). Although some literature exists around complimentary and alterative water therapies for adults surviving the polio epidemic (Kinnaird & Becker, 2008), the findings may not apply to children in modern times. Several adult and child palliative care facilities contain spa pools (George Mark Children’s House, 2013; Worpole, 2009), although the extent and purpose of families’ pool usage is unknown. The PPAP described here is the only known program that specifically caters to PPC patients using aqua therapy techniques. Recommendations of health care providers for taking PPC patients into water are limited. Although PPC policies and services have been developed, research in this area is limited. Medical and academic institutions took a strong interest in this field less than two decades ago (Steele, Davies, Collins, & Cook, 2005). The American Academy of Pediatrics (Committee on Bioethics and Committee on Hospital Care, AAP, 2000) has recommended that palliative and respite care programs be developed and made widely available, that an integrated model of palliative care continue throughout the course of illness, and that research be increased within the field of palliative care. Evidence-based research that evaluates the effects of aquatic interventions is lacking (Getz et al., 2007).

METHODS Patients, their siblings, and their primary caregivers reflected on their experiences with the PPAP at GMCH in focus group settings. Because most of the children in this population were not cognitively capable of communicating their perceptions in words due to disabilities, primary caregivers and siblings represented their children’s experiences. In addition to traditional focus group (Heary & Hennessy, 2002), interview

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(Banister et al., 1994), thematic analytic (Braun & Clarke, 2006) methods, and features of Participatory action research (Adelman, 1993) were adopted to empower families by enabling them to retell their stories and relate to other families in similar situations. Focus groups created a culture of reciprocity in which participants responded to each other (Coyne, Hayes, & Gallagher, 2009). Ethical clearance was obtained from the Institutional Review Board of the University of California, Merced (UCM13-0021) and informed consent from all involved adult participants (and assent from minors) was obtained before the start of the research. Primary caregivers and siblings of pediatric patients receiving hospice or palliative care services through GMCH were invited to participate. Participants were required to have a developmental level sufficient for answering the interview questions. Potential interviewees were invited to participate until the required number of participants was obtained. Five focus groups and five interviews were conducted in a semistructured manner using an interview schedule to prompt each conversation (Table 1). The interviews and focus groups lasted between 15 and 120 minutes each. Open-ended questions and prompts were used to encourage diverse responses. Participants’ relations to the patients varied slightly. Sixteen mothers, 3 fathers, 2 grandmothers, and 2 sisters took part. In terms of ethnicity, participants were white (12), black (5), Asian/Pacific Islander (2), Hispanic (1), and unreported (3). Their household incomes ranged from $10,000 to more than $250,000. Participants specified their religions as Christian (10), Jewish (1), Muslim (1), Agnostic (7), and unidentified (4). Their children who participated in the PPAP ranged in age from 4 to 23 years. Families of patients referred to the program were sampled purposively. They received invitational study brochures after consenting to at least one session in the GMCH palliative aquatics program. The families were invited to participate by a staff member at the host site. Although being contacted by a neutral recruiter outside the institution may have generated a more diverse sample, the private information of the participants took precedence. The staff member asked for participants’ preferred mode of contact (phone or email), by which the principal investigator or a research assistant (if their preferred language was not English) contacted them to explain the study. Five participants refused to participate or dropped out due to complex schedules that did not allow participation or feeling that they had not had enough experience with the PPAP to participate.

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TABLE 1. Families’ Perceptions of Pediatric Palliative Aquatics: Semi-structured Focus Group/ Interview Guide 1. In 2 or 3 minutes, could you please outline for me the background circumstances of your child’s medical condition and how you got to GMCH? 2. Could you say a little about how you went about deciding to get involved in the aquatics program? a. What did you expect of the aquatics program? b. Did you have any initial concerns? 3. What was the best part of aquatics program? What was the worst part of aquatics program? 4. Did you go in the water with your child? How do you think your child felt about the aquatics program? 5. Did you notice any changes in your child after the sessions? 6. If you could give any advice to families thinking about participating in the aquatics program, what would it be? 7. If you could give any advice to those run the aquatics program, what would it be? 8. Is there anything else you would like to talk about or that you thought about while we were talking?

Conducting transparent research helps to maintain cultural sensitivity and adherence to ethical guidelines. With the advice of the staff at GMCH, the palliative aquatics specialists, and colleagues at the University of California, Merced, an interview schedule was designed. The schedule (Table 1) includes appropriate topics for primary caregivers and other family members (including mature children) to discuss and leads gently into the topic of discussing the experience of the PPC patient and his or her siblings in the PPAP. The questions were piloted on the families of two former GMCH patients to ensure sensitivity and comprehensiveness. Because the schedules of some participants did not allow for a focus group method of data collection, some participants were interviewed. All focus groups and interviews were led by the principal investigator who has experience working with focus groups of bereaved children and parents in research and clinical contexts. Each focus group took place at a location convenient to the families participating. For the majority of the groups, this location was GMCH or a public library. Most of the interviews took place at participants’ homes. If participating at GMCH, the groups were held in private rooms and child care was provided for participants’ younger children by volunteer personnel trained to care for visitors at the house. The female principal investigator (Erin Gaab, PhD) conducted all of the focus groups and interviews as

none of the participants who volunteered from the host site spoke Spanish or Mandarin (although resources were available for those speakers). The principal investigator began with 4 years of experience conducting and analyzing interviews and focus groups with this population and their children (Gaab, Owens, & MacLeod, 2012) Participants read information sheets, filled out consent forms, and recorded their demographic data on paper before proceeding to participate. Data collection concluded when saturation was reached. Discussions generated from the focus groups and interviews provided insights into the perceptions of the PPAP that families held and helped determine directions for improving the patient and family experience in the water and at GMCH. After the focus groups and interviews were conducted and recorded, the recordings were transcribed and coded. The principal investigator and her research assistants extracted themes arising from the focus groups using thematic analysis. The analysis was grounded in family systems theory, which proposes that the experiences of one person affect the experiences of his or her family members and the family adaptation and adjustment response model, which holds that families grow stronger or weaker in response to health condition stressors (Murray, Kelley-Soderholm, & Murray, 2007). After data were collected, follow-up letters were posted or emailed to families thanking them for their involvement. Thematic analysis is a method used by many psychologists (Braun & Clarke, 2006) to organize participants’ words into meaningful units in the context of a research question. The goal of conducting thematic analysis is to generate rich and detailed yet complex account of the data. In order to conduct this analysis, the analysts (the principal investigator and three trained research assistants) familiarized themselves with the data through transcription and memowriting, generated initial codes, drafted and defined themes based on the initial codes, revised the themes based additional re-examination of the original transcripts, and finally supported the themes and definitions with segments from the transcripts in a manuscript. Nvivo (NVivo qualitative data analysis software; QSR International Pty Ltd) was used to organize the data. Quality was ensured through checking for rich rigor, sincerity, credibility, resonance, significant contribution, ethics, and meaningful coherence (Tracy, 2010). Member checking was conducted with three research participants and triangulation of interview and focus group results across ages and disease statuses further validated the research results (Braun & Clarke, 2013).

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RESULTS AND DISCUSSION The following broad themes emerged from the focus group and interview-generated data: Through the PPAP, children gained the following: 1. New sensations through relaxation and symptom relief; 2. A new range of abilities and motion; and 3. A sense of independence through trusting others (Fig. 1).

The themes have been divided into categories in order to organize their experiences, although the concepts mentioned by participants frequently overlap and interrelate. New Sensations through Relaxation and Symptom Relief Participants described the PPAP as giving their children access to new sensations, enabled by the state of relaxation that the program generated. Almost all of the primary caregivers and siblings who participated in the study reported that while engaged in the PPAP, their children relaxed. Their children’s relaxed states while engaged in the PPAP were believed by many family members to have opened the children up to new sensations, experiences, and opportunities. In the case of one mother, the sensation of touching the water was seen as a valuable resource: ‘‘Her [the daughter’s] ability to use senses is so limited, you know. She can’t really reach out and touch anything. Her hands are crippled and so that feeling, that sensation, has got to be good for her.’’ The stimulation elicited by the water was seen as contributing to children’s well-being by their family members who witnessed them engaged in the program.

FIGURE 1.

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Perceived effects of the PPAP.

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Most of the primary caregivers seemed to view their children’s experiences in the water as facilitative of more relaxed muscle movements. One father spoke about the change in pace that seemed to alter his child’s tenseness. When in the PPAP pool, his daughter ‘‘slowed down; she wasn’t so sporadic . even when she’s out of the water you have a hard time holding her because she’s so stiff . but not in the water.’’ The PPAP provided a mechanism by which his child was able to experience relaxation and new sensations. Sometimes, families described symptom relief as one of the opportunities experienced by PPAPprovoked relaxation. Pain was frequently mentioned as one of the most important PPC symptoms to treat. One mother, whose child was participating in the PPAP to determine its effect on pain, witnessed the relaxation the program brought to her child: She would moan all the time, you know, the [painkiller] took the edge [off]. So my initial thought was not to give her the [painkiller] before she got in the pool, so [because] I wanted to see what affect it was and um it worked, it worked the spa pool; worked just like the [painkiller]. It took the edge off, it really took the edge off; it really did.

Other family members noted the lack of tolerance and withdrawal produced by the PPAP in contrast with that of the strong medications prescribed to PPC patients. Another parent described the pain relief as one of the most marketable components of the PPAP: You have to get that word out through the, the pain management because that’s what it’s all about. This is teaching; this is providing some relief, the benefits are wide ranging but initially, especially kids who are growing, . My child needs some pain management care. . The doctor can prescribe that.

In another case of a boy who was experiencing previously difficult-to-control pain, the mother’s relief may have been perpetuated by her lack of expectations around the PPAP: ‘‘I had no idea it was going to be so fast but just to see the pain taken off of him and the relaxation that he was able to have was so important and I would trade 2 years for 1 month of that.’’ Many parents clearly perceived that PPAP significantly affected their children’s quality of life. The value of providing relaxation to their children through the PPAP was described by parents in terms of decreased symptoms, paced movements, and comfortable facial expressions. When asked about their desired frequency and duration for giving their children access to PPAP experiences, most parents wanted their children in the pool for at least one session per day. When agreeing with one mother’s suggestion of PPAP sessions once a day, another parent expressed a desire for more:

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Well, she’s right. Once a day would be great, but I would also want it more . like with a [health care] program, where it’s kinda like mandatory . I love PT [physical therapy] and OT [occupational therapy] but actually the stuff she does here . it’s way better for her and me . everyone learns more about her through the water.

Participants’ suggested session durations ranging from 30 to 90 minutes. Not all parents believed that the PPAP strengthened their children, however. Some described time in the water as ‘‘weakening’’ their child, such as in the case of patients with cystic fibrosis (a learning experience described in Theme 4.3). However, others viewed the time as ‘‘energizing.’’ One mother described her experience watching her child in the water: ‘‘It’s just as relaxing, I would like to go in just to watch [be] cause it’s so relaxing and peaceful and it’s so soothing to see a child have make these progresses, which are so small to our standards but they’re so huge on the scale of where they are going.’’ The ‘‘progresses’’ referred to by the mother, which relaxed the mother (vicariously) as well as the child, will be expanded on in Theme 4.2. Although not explicitly a part of the PPAP, the warm pool was used to diagnose an issue that had previously caused one patient pain. His mother described the diagnostic process, aided by the PPAP pool: It was [the medical staff’s] recommendation . to try and understand where the pain was coming from that they . get him in the water . to see if they could communicate with him . and get a sense from him to try to diagnose what the problem was. .They got him in the tub, and they started to talk to him and say ‘‘Where does this hurt? How does this feel?’’ and they very slowly. looked at him.. Not only were trying to get a sense of where this pain was coming from, but a sense of how he communicates, so they can. make further better decisions. And it was through communication between [the patient] and the staff in that warm pool that they were able to diagnose and make changes to his protocol and . to use the palliative care. in the pool to overcome this pain that he had been having for over a year and a half.

The PPAP pool assisted the health care providers in communicating with and relaxing the patient. The diagnosis resulting from this PPAP intervention was critical for at least one patient, according to his mother. Participants generally viewed the stimulation that children received in the PPAP as provocative of positive new sensations. For many children in the PPAP, the number of experiences that they have access to were limited. Therefore, participating family members were generally grateful for the ability to capitalize on

the opportunity to generate new sensations through the PPAP. Range of Abilities and Motion Beyond simply providing their children with a relaxing environment and passive sensory stimulation, many participants perceived that the PPAP allowed their children a greater range of motion and access to new physical and social capabilities. One father described his child’s increased range of motion as the defining beneficial feature of the PPAP: ‘‘We have a pool at home and [son] loves it. I think the difference though here is that you have [PPAP specialist] who does range of motion.’’ The PPAP specialist’s goals of improving respiratory status, relaxing the child for better sleep, relieving pain and neural irritability, and providing a feeling of weightlessness may have contributed to the child’s perceived increasing abilities and range of motion. The PPAP provoked openness to new experiences by a few primary caregivers and their children. One mother suggested the different features of the PPAP allowed her access to new abilities: ‘‘[My child] lets me just put her in the water and see what happens. and she’s different. we can try different things. with her arms. and to me that’s huge. because I want to be able to see what she can do. and show her what she can do. if you can see your hand moving in front of you and you can see your legs kicking.’’ The child’s awareness of her new abilities was noted as another feature of her participation in the program. Participants viewed new social and physical experiences as advantageous to their child’s development. The family members’ perceptions of children’s experiences ranged from feeling their muscles relax to weightlessness (as aimed for by the specialist): Bath time is her favorite at home. But here it’s entirely different because [in PPAP] it’s a giant pool and I think for the first time she actually felt weightless, um. And her joints are very stiff and very restricted and tight so it’s difficult for her to move around. And so when she was in the tub here, she was kicking about in a way that I had never seen. It just seems like she was experiencing freedom for the first time, so it was really touching.

The positive emotions reportedly brought about by watching her child in the pool may have increased the mother’s ability to connect with her child socially through empathizing with a new experiential state. The feeling of ‘‘freedom’’ is further described later. The sentiment of increased social openness was suggested in several contexts, such as in the context of openness to the therapist and openness to engagement with family members: ‘‘He was a lot more

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accepting to new people while he was in the water [be] cause they would have volunteers come in and he wasn’t as objective to having new people around him when he was in the water.’’ One parent suggested the program’s value in normalizing the patient as a child: ‘‘It’s a family activity; it’s not just about relaxation. Like you said, he gets to play. . This is something he and his brother can do together. something we can all do together as a family. instead of yet another therapy.’’ The PPAP may enable children to focus on their roles as siblings, sons and daughters, rather than as patients. One mother described her son’s trust in the PPAP therapist as facilitative of his increased range of social well-being and motion, despite his history of his social and physical ‘‘closed-ness’’: He does. not open up to anybody who he is not extremely comfortable around. He had white coat syndrome. If you are white, he shut down. He would close-, cross his arms and go to sleep; he had nothing to do with you. [With the PPAP specialist] he would let himself loosen up and I could see his shoulders broadening, and his-, I mean we’re not talking like going from a ball to straight but just the degrees he went was such importance because he would never do it on his own. You would have to push and you would have to pull and you had to prod. And this she actually just holding him, he was just letting it go. [With] every sigh, he would go a little bit further and a little bit further, and a little bit further. [Big sigh.] It was nice.

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skin, for their skin health, and just being in that . free space.’’ The feeling of independence or freedom, often provoked by families’ trust in the therapist and the program, may have been felt by more than just patients. Engaging in the PPAP requires the trust of the primary caregivers as well. Most parents answered the question about how their child arrived at the site of the PPAP with recollections of hesitation. For example, one mother described her concerns about trusting others with her child: ‘‘Like most parents, I wanted to do everything myself. And as a result of that, I became a little burnt out so .I was a little apprehensive and afraid.’’ Almost all of the participants entered the facility with similar hesitations. However, once involved in the program, most parents were able to gain trust, ‘‘freeing’’ them from a sense of always needing to protect their children: I was caring for my daughter and . I have been taking care of her . since she was 4. You know in a very weak state of life . I wanted to do everything myself. And as a result of that, I just became a little burnt out so . I was a little apprehensive and afraid you know. But I did, I did um. I got on the tricycle and, you know, and I used the training wheels and all that kind of thing but then I got very, you know, comfortable with leaving her and then I was introduced to [PPAP specialist]. She came to the room and she introduced herself to me and my family and . it was just a godsend. It really relaxed her because her . illness causes her muscles to tense.

The PPAP seemed to prompt trust from children either through or as a result of their increased sensations and abilities.

The PPAP allowed both children and their primary caregivers to face fears in a safe environment. In almost every case, the parents and children did not regret ‘‘taking the plunge’’:

Independence through Trusting Others Several primary caregivers suggested that children who open up to engagement with the PPAP experience enriching sensations and enhanced physical and social states. Additionally, primary caregivers suggested that a feeling of independence may have been fostered through children’s involvement in the PPAP:

She was very happy, she was really, really happy um [because] like I said initially, . she’s afraid of water um but I noticed here she’s not afraid to let go . she’s not afraid she’s going to go under. Yeah, so it’s very safe, very safe for her. She felt safe, she feels safe when she’s in there [because] if she didn’t she wouldn’t go in there.

He could be weightless .he would just melt. .And within two minutes there would be these huge yawns (laughs) and . so relaxed with the weight off his body and .he started to move in ways that he can’t move outside of the water .And this is him, not even [PPAP specialist] moving it or not even us moving him it but he can do it on his own.was huge.

The theme of freedom emerged from several primary caregivers’ transcripts when speaking about the PPAP. One mother described her child’s time in PPAP as ‘‘Just that experience of just being submerged fully in water is just great for their relaxation and their

A concern about risk-taking behaviors of family members in the water was expressed by one parent, but seemed to outweigh the benefits: Once we get her in there . we can swing her around. and do things that I know [PPAP specialist] would probably go. ‘Oh my God; be careful!’ [laughs] . Well, my girls are [elementary school age]. so they’re scary. but. she gets happy. and I’m like, ‘‘Nooo’’. but you know. they are more of a risk takers. so they’ll splash her. I would say, ‘‘No, no, no. watch the G tube. watch this. watch that. her neck. it’s going under water’’. and they’re like, ‘‘Mom calm down’’. and I’m like, No, we cannot have any more problems’’. because

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you know, she already disabled. We don’t need the ambulance coming’ out here trying to figure out what this baby is doing with us.but she loves it. It’s just huge.

Through the PPAP, families were able to connect in different ways without the necessity of support from medical equipment or assistive devices: It brought him a lot of joy. There is one other thing, you guys, there’s a closeness. I think I’ve mentioned it before. . When you’re in the water with them. you get to be more close to them. than when they are in a chair or in a bed or whatever. . It was so much easier just to put my arms under his shoulders . I was able to hold him standing up and I. he outweighs me by quite a bit. but you know, I was able to hold him up that way. you can’t even do that kind of stuff [outside of the water].

PPAP was seen facilitative of independent living and disease management for a few of the children as well. For one adolescent’s mother, PPAP was a means of teaching her son how to keep healthy: ‘‘[PPAP] was a break. getting him to think outside the box about how he might keep himself healthy. getting him to gain ownership of his own disease and his own treatment and understanding it.’’ A discussion of sexuality followed the mother’s comment above, suggesting the primary caregiver’s approval of children reaching culturally appropriate developmental milestones. In addition to providing pain relief and otherwise difficult-to-access experiences, some parents viewed PPAP as a form of supplemental self-care training. It was another avenue through which children might experiment with the effects of the environment on their bodies. Another mother described the additional support that the PPAP provided to her son: We learned between that program and then the pulmonary rehab program that he was in on is that the warm water weakens him, so it makes him be more aware of. like taking a shower or taking a bath or that kind of thing. that that winds him and that makes him very weak and so he learned that getting out of the hot tub. It really helped him kind of learn to. maybe it doesn’t necessarily tie in 100% to what I think my treatment is. but. it all comes together. He’s learning how to manage his own care and manage. and recognize his own, I don’t want to say, weaknesses.

The above-mentioned adolescent also learned to handle self-image issues while in the water. Without a shirt, his chest and G-tube were more visible, allowing him access to experimenting with handling his own feelings of exposure and potential insecurity. However, the primary caregiver viewed the effects of the water on his body as a teaching tool:

[My son used PPAP] to help him understand the mucus out, that the water, humidity, and exercise helped him clean the mucus out which then allowed him to be able to go do other things in the afternoon like play basketball that he probably wouldn’t have been able to do had he not cleaned the mucus out in the morning. So. she was able to kind of tie it together for him and help him see the bigger picture, and that’s one of the things I think for us is a little different.

Several parents said the PPAP taught their children to function and support themselves physically and emotionally. One grandmother mentioned that her granddaughter conquered her fear when engaged in the PPAP: ‘‘She’s normally afraid of water. When we go swimming she won’t really, she’ll put her feet in but she won’t get in. But here, she’ll get in the hole, in the spa, and she’s not afraid.’’ One may infer that through enabling medically fragile children to conquer fears, their sense of freedom might develop. Another mentioned the therapeutic benefits that generated a sense of dignity in her son: ‘‘Now he. can talk again and laugh. and hold his head up.’’

IMPLICATIONS FOR NURSING AND PRACTICE Nurses who work with PPC patients and families might consider the use of gentle motions in warm water to empower children in managing their illnesses. By using noninvasive interventions such as those utilized by the PPAP, health care providers not only give children access to a range of new experiences, but avoid tolerance and withdrawal issues posed by more traditional methods.

CONCLUSION According to their family members, the PPAP gave children access to new capabilities and experiential learning. Through relaxation, children were often viewed as empowered to relieve their own symptoms and explore the world through new sensations and a wider range of abilities. This may ultimately lead to children’s strengthened feelings of independence. The trust that the participating primary caregivers and children put into the program may have been essential to their achievements. This study was limited by the lack of published articles which focus on complimentary aquatic services for PPC patients (this is the first to our knowledge). Because we only know of the existence of one PPAP in the world, a selection bias is inevitable. This issue was circumvented by the selection of qualitative

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research, which acknowledges the context from which participants are drawn. In the future, we hope that more quantitative studies will be conducted to assess quality of life and physiological responses of children receiving PPC to PPAPs. Considering that several primary caregivers expressed that the PPAP could replace expensive, toleranceproducing medications their children take, the economic effect of enrolling PPC patients in similar PPAPs might also be a consideration in the creation of PPC services.

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Acknowledgments This paper would not have been possible without the generosity and support of the participating families and staff at George Mark Children’s House (especially Sheila Pyatt, RN), undergraduate research assistants from the University of California, Merced (especially Michelle Burrowes, Iliana Fierros, and Mirian Velazquez-Martinez), and the Health Sciences Research Institute (especially Paul Brown and Jan Wallander). This research was funded by the Health Sciences Research Institute at the University of California, Merced.

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