long-term gastrostomy in children: insights from expert nurses

LONG-TERM GASTROSTOMY IN CHILDREN: INSIGHTS FROM EXPERT NURSES

M. JANICE RADFORD, RN, MSN Sunny Hill Health Centre for Children, Vancouver, British Columbia, Canada

SALLY THORNE, RN, PhD School of Nursing, University of British Columbia, Vancouver, British Columbia, Canada

CAROL BASSINGTHWAIGHTE, RN MSN Nursing Respite Program, British Columbia Ministry of Health, Burnaby, British Columbia, Canada

Beyond its technical implications, long-term gastrostomy in children represents a multifaceted social and psychological challenge to families caring for medically complex children at home. In the context of a study of gastrostomy devices in children, the authors interviewed nurses nominated as experts in the care of such children and families. In this article, a secondary analysis of themes arising from those interviews reveals the considerable clinical practice knowledge involved in managing and coordinating this care. The insights from these expert nurses reveal strategies and approaches that have not been systematically reported in the literature on nursing roles in relation to gastrostomy. By documenting and reporting such insights, the authors hope to make accessible the reasoning that these experts have developed through experience, innovation, and education, and thereby to encourage nurses caring for families with such children to broaden and extend the scope of their traditional practice roles.

The gastrostomy tube is a technological device that allows food and fluids to be infused into the stomach, bypassing the mouth and esophagus. There are increasing numbers of children who are dependent on gastrostomy tubes for meeting all or most of their nutritional needs (Malki et al., 1991). Reasons for inserting a gastrostomy tube vary, but include severe gastroesophageal reflux secondary to a neurological disorder, con- genital abnormalities such as tracheoesophageal atresia, or acquired con-

This research was supported by a grant from the British Columbia Health Research Founda-

Address all correspondence to Sally Thorne, UBC School of Nursing, 2211 Wesbrook Mall, tion.

Vancouver, British Columbia, Canada V6T 2B5. E-mail: thorne@nursing.ubc.ca

Issues in Comprehensive Pediatric Nursing, 20:35-50, 1997 Copyrigh! 0 1997 Twlor & Francis

0146-0862/97 $12.00 + .OO 35

36 A4 .J Radforrd, S. Thorne, and C. Bassingthwaighte

ditions such as severe caustic bums to the esophagus (Coldicutt, 1994; Huddleston & Ferraro, 1991; Huth & O’Brien, 1987).

Literature that addresses gastrostomy tube insertion and management primarily focuses on the technical aspects of care (Coldicutt, 1994; Hagelgans & Janusz, 1994; Huth & O’Brien, 1987; Perez, Beckom, Jebara, Lewis, & Patenaude, 1984), although anecdotal evidence within these reports frequently notes caregiver burden and the psychosocial impact of gastrostomy (Huddleston & Ferraro, 1991; Malki et al., 1991). Because it is well known that managing a technology-dependent child in the home has a major impact on family life and health (Brophy, 1994), the importance of addressing the psychosocial needs of children and families who deal with gastrostomies has been acknowledged (Huddleston & Ferraro, 1991; Perez et al., 1984). However, the available literature on pediatric gastrostomy does not explore these issues in depth, nor does it address the implications of nursing roles in helping families cope with the challenge over time (Spalding, 1993).

PURPOSE OF THE CURRENT STUDY

Recognizing the absence of a strong evidence-based literature on the psychosocial needs of families who deal with gastrostomies, and observing that nurses and parents typically view aspects of gastrostomy management quite differently, we constructed a study to explore the multiple meanings of long-term gastrostomy in children with severe disability (Thorne, Radford, & McCormick, 1997). In this primary study, both parents and expert nurses were intensively interviewed to elicit their perspectives regarding the gastrostomy experience. Interviews were transcribed verbatim, and analyzed using an interpretivist, naturalistic inquiry approach (Lincoln & Guba, 1985; Schwandt, 1994). Findings from the study con- firmed that implications of gastrostomy are interpreted quite differently between parents and professionals, and that the family experience could be dramatically compromised by breakdowns in communication with the professionals. Further, it was revealed that although frontline nurses were often unaware of the complexity of the family experience and uninformed about the role that nurses might play in this regard, nurses with special expertise in pediatric long-term gastrostomy could articulate and recon- cile such perceptual differences and develop strategies to support and facilitate families in their adaptation to and management of the gastrostomy experience.

The insights from the expert nurses reflected a body of clinical pruc- rice knowledge not currently accessible within the scholarly literature, and not apparent in the accounts of other nurses. To document themes within this practice knowledge and render it more accessible to frontline

Long- Term Gastrostomy in Children 37

nurses interested in providing the highest-quality nursing care to these children and families, a secondary analysis (Thorne, 1994) was conducted on data fiom the expert nurses to answer the research question: What strategies do expert nurses use to support families caring for children with gastrostomies?

SECONDARY ANALYSIS METHODS

The expert nurses interviewed for this study were recruited in a variety of ways. Nurses in clinical practice settings where this client population was common were asked to recommend individuals with expertise. Col- league networks, including participants and speakers at pediatric rehabili- tation conferences, were asked for recommendations. A call also was put out over nursing electronic mail networks for nurses with special background, education, or practice experience in long-term pediatric gastrostomy. A total of 16 expert nurses were identified. Of these, eight were from the western Canadian province in which the study was based, two fiom other major centers in Canada, and six from the United States. Half were based primarily in hospital settings, while the remainder had a combination of home care and in-patient experience with this population. Six had graduate degrees in nursing, and eight held clinical nurse special- ist or nurse clinician roles specializing in the care of children requiring gastrostomy. Seven of the nurses were interviewed face-to-face, and the remainder by telephone (sometimes augmented by E-mail interchanges). Informed consent was obtained in writing, by facsimile or by electronic mail as necessary. Interviews were audiotaped, transcribed verbatim, and analyzed for recurrent themes. While thematic analysis in the primary study related to nurses’ observations about how families experience long- term gastrostomy in children, this secondary analysis extended the accounts to permit a systematic description of what participants considered effective nursing knowledge, skill, and responsibility in relation to all aspects of the family’s gastrostomy experience.

FINDING#: INSIGHTS FROM THE EXPERT NURSES

Analysis of the accounts of expert nurses revealed three main themes. First, they documented a variety of approaches to support parent learning about gastrostomies. Second, they articulated competencies involved in bringing the contributions of unique nursing perspectives to a multidisciplinary health care team. And finally, they explained the importance of respect for a diversity of perspectives that families bring to caregiving and decision making.

38 M. J. Radforrd, S. Thorne, and C. Bassingthwaighte

Supporting Parent Learning

The expert nurses, whether primarily in hospital or community settings, all viewed parent teaching as a critical element of their role. They pointed out that staff nurses with whom they had worked in the hospital focused primarily on preparing the mother to do the tasks involved in gastrostomy feeding, but rarely considered the broader implications of having a gastrostomy. As one explained,

The teaching . . , doesn’t factor in all the other issues that might be going on with the mother at the time. . . . They just focus on, oh well, the mom has set up the bag feeding, knows how to work the pump if there’s a pump, is able to clean around the site, or whatever needed to be done.

In contrast, the expert nurses who participated in this study believed that simply teaching the tasks involved in the administration of feeds via gastrostomy was insufficient.

One area they identified as critically important was anticipatory planning, first in relation to the initial decision as to whether a gastrostomy tube was the appropriate plan of care, and later in helping parents plan for life at home following the child’s discharge from the hospital. For example, around the time of gastrostomy tube insertion, it was important to prepare parents for the possible feelings they might have, as one nurse explained:

I also think that what parents need is not just our enthusiasm about what a wonderful thing this is, but some understanding about. . . . Yes, it is going to be a change. Yes, you will have a hole in your child. Yes, there will be something in it, a foreign object. I think that our tendency is to overlook that part of the parents’ need to have some grief about it. Even if it is the best thing. Even if they say later . . . what a good thing it was for their child. I just think that we have to let them have some feelings about it.

Once the decision was made to have a gastrostomy, the expert nurses thought parents benefited from help to anticipate and plan for what life might be like at home. They believed that such planning commonly fell between the cracks of hospital and home-based services. As one com- mented, “I think that NICU [neonatal intensive care unit] nurses and nurses who discharge medically fragile kids to home should get out in the homes and see what these families go through so that they can appreciate and do a better job of discharge teaching.” Another recognized that demands of hospital routines were inherently different from the reality of caring for a child at home.

Long-Term Gastrostomy in Children 39

What sometimes happens is that a child is being continuously tube fed and being primed to go home and, all of a sudden, the realization is, “Oh, my goodness, we can’t expect a 24-hour drip going on at home. We better get him on a more regular thing.” And occasionally that happens just because there’s been so much focus on some very fragile medical problems.

Nurses in this study tailored their teaching strategies to fit the stage of convalescence of the child, as well as the learning style of the parents. As one explained,

There’s a different kind of teaching when you get onto the long-term thing, when you’re talking about going home, and the parents are taking much more charge. They’re learning it little by little. Each family has its own pace. Some become experts in no time at all and others need a lot of help. They just can absorb a little bit at a time. And others, you know, you just sort of say, if you can use a microwave . . . its not very different when you set the feeding pump. If you’re using a button and getting that con- nected to the feeding bag, it’s not very different from plugging in a telephone to the telephone jack. If you can do that you’ll be able to look after this equipment.

Thus, expert nurses viewed their role as anticipatory planner and teacher to be broader than merely preparing parents to perform the tasks associated with gastrostomy feeding. They began the process of anticipatory planning before the decision to insert the tube had been made, giving parents information that would help them make that decision. They acknowledged and allowed for expression of some of the more negative feelings parents might have about their child having a gastrostomy. They adapted hospital equipment and routines to fit into family routines at home, predicting and troubleshooting potential problems the parents might face.

A second strategy to support parent learning was to have experienced parents talk to parents who were considering gastrostomy surgery for their child. Expert nurses took an active role in matching parents, as well as facilitating their meeting. When matching experienced with new parents, they looked for similarities between families, such as the age and/or cognitive ability of the child, or ethnicity, rather than a common medical diagnosis. As one explained, ccIym looking for the commonalities that will help them speak to one another.”

Nurses found that experienced parents were often strong advocates for gastrostomy feeding, and that parents considering gastrostomies for their children heard information differently when it was presented by another parent instead of a health professional.

40 A4 J Radford, S. Thorne, and C. Bassingthwaighte

It is much more beneficial to that family making that decision, rather than all of the health care professionals sitting around and telling them what a good idea it is. And not one of us has a g-tube ourselves. Not one of us has a child that’s tube fed. But if you can select a family that has gone through this decision-making that . . . is using, or just recently was using the tube feeding, that’s the kind of information that this parent needs to hear. How did that tube feeding change their life?. . . . Just proving to that new family that there is life after this.

However, according to these experts, the nurse’s role did not end with matching appropriate parents and setting up a meeting. As one explained, it was important to attend the meeting as a facilitator or gatekeeper to guide the process and ensure that the information exchanged was con- structive and applicable.

A third strategy used by these nurses to support parent learning en- tailed using the concept of normalization to guide parents with the management of gastrostomies. For example, they discussed eating and drink- ing patterns in terms of what would be normal for a child without a gastrostomy, and used that as a guideline regarding frequency of feeding, appropriate length of feeding time, and location for meals. Generally, nurses recommended that children be fed at the same time as other children, and in the same place, whether that be at the family table or the school cafeteria. Recognizing the strong connection between feeding and nurturing, these nurses supported parents of infants by suggesting strategies to make feeding as normal as possible.

I think that what’s real important is that the families still feel that they can nurture their child even though, for instance, the child may have a hun- dred percent of the feedings from a gastrostomy tube. But it’s important that the families still get warm fuzzies from doing this, so we really in- struct them in holding the child, offering them the pacifier or maybe do some kind of oral stimulation and hold them close so they can still get- I mean feeding is such a multi-sensory event-and trying to do that as much as possible, even though they’re not tasting by mouth. I think it’s just real important to make feeding an experience even though there is a gastrostomy tube, because I think the mother and father really lose out on an important experience in feeding their child if their child gets nothing but gastrostomy feeding.

Because feeding is an important factor that influences the normal development of the relationship between mother and baby, expert nurses supported mothers’ efforts to feed their infants by mouth, as a supplement to gastrostomy feeding, when it was safe to do so.

Long- Term Gastrostomy in Children 41

Sometimes, if the kid could just eat by mouth, that would just make all the difference in the relationship between the child and the parents. And that’s why, even if this child would take one ounce every three hours, or not even that much, sometimes it was at least some kind of interaction. And the moms were able to make a bottle and I would see some of these mothers trying to mix a little bit of Similac, or Progestimil, usually it was with a little bit of rice cereal, they would make it look like they were fixing a five course meal (laughter). You know, I would see how important it was for them to do that oral feeding for their child.

As one nurse explained, the language professionals use when speaking with parents can contribute to perceptions of normalcy regarding gastrostomies. “People talk about feeds and they should be meals-these are gastrostomy meals, they’re not gastrostomy feeds. You know, the mo- ment you get a gastrostomy you don’t really talk about lunch anymore, or breakfast.” Further, some nurses recommended that thinking about what is normal in terms of intake of water could be useful in guiding parents in decisions about appropriate times to give extra fluids, thus maintaining adequate hydration.

One other thing I’ve noticed is that these kids hardly ever get a drink of water. If you think of these school kids, they run around and they run to the water fountain and they have a drink of water and then off they go. But nutrition is such an important part of the lives of these ones (children with gastrostomies), and so everything is nutrient dense. You pack as much nutrition into these liquid formulas that you can. . . . And maybe when the weather is hot it encourages people to give them extra water, but for most of the time they never get just plain water or clear liquids.

Thus, expert nurses supported parent learning in three ways. They used anticipatory planning to assist parents in initial decision making regarding gastrostomy surgery, as well as planning for life at home with a gastrostomy. They facilitated parent-to-parent support by matching experienced parents with those who were considering gastrostomy surgery for their child. And finally, they used the concept of normalization to guide parents in the management of their children’s gastrostomies.

Active Teamwork

The second theme arising from the data revealed the value of active teamwork in coordinating health care. Expert nurses viewed themselves as an integral part of the team of professionals who worked with children with gastrostomies. Respecting the important contributions of other professional disciplines, they also articulated a unique nursing perspective that was essential to a successful client experience.

42 M. J. Radford, S. Thorne, and C. Bassingthwaighte

While some nurses were a part of formal teams, meeting regularly to discuss the children newly referred to them or to follow up on children they had seen earlier, others described a less formal team structure in- volving consultation with various professionals on an as-needed basis. Such multidisciplinary teams often consisted of occupational therapists, physiotherapists, speech therapists, dietitians, nurses, and physicians from various specialties. In some instances, pharmacists, social workers, child care workers, or teachers also participated. Nurses often spoke of parents as members of the health care team.

Because of the complexity of decisions regarding gastrostomy as an intervention, the expert nurses articulated many benefits accruing from a team approach to care for these children and families.

Certainly the nutritionist plays a key role here in determining that this is not an optimum level of nutritional health. And the primary caregiver would be saying things like, “Well, we have an awful lot of statistics on this particular case, (he’s) showing a lot of chest-related problems.” And assessments by the P.T, 0.T.-particularly the 0 .T .would suggest, based on all of the other information from the rest of the team . . . that we have something here that needs to be addressed in terms of, either safe nutritional intake, or chronic problems with the chest, that could be related to aspiration and whatever, and then with the pediatrician and primary physician involved here, some diagnostic tests might be ordered on recommendations or suggestions from the team.

Thus, each professional perspective contributed to a comprehensive view of the child’s condition and needs “because you can’t isolate any part of them. You have to make sure that everything is the best it can be so they can get through their difficulties.” However, because of the number of professionals involved, the potential existed for parents to get conflicting opinions as to the best approach to their child’s care. Therefore, an important benefit of working as a team, and sharing perspectives among professionals, was that parents received more consistent information.

You have to monitor and gather your facts and get the whole team of specialists to sort of work together and as one go present the results to the family. You can’t have all these different people running at different times and confusing them (parents). It really has to be done in concert.

The team approach also permitted analysis of the more global implications of health service delivery. When professionals met together over time, strategies to improve coordinated and comprehensive programming could be discussed and implemented.

I met with a group about five years a g o 4 think it started because we were so concerned about the lack of resources for these families-and we

spent a lot of time in the last five years trying to develop it. And it’s been really great for our hospital in terms of getting our group where nursing, O.T.s, physio and a dietitian-we’ve worked really hard to look at the identification of these children, having resources in place before a problem exists, having resources available for all parents, not just the ones who have a very high need and very visible needs, but any child who is going to be tube fed gets all of these resources (and) information.

Beyond participation in such multidisciplinary discussions, the expert nurses in this study viewed themselves as active agents in both establish- ing and supporting such teams. By virtue of their intimate involvement in feeding children, and discussing feeding patterns or issues with parents, nurses were often the initial team members to note “red flags” such as frequent choking during oral feeds, taking an extraordinarily long time for feeds, or a history of frequent aspiration pneumonia. Bringing such issues to a case conference or team meeting, they were instrumental in initiating discussion about possible gastrostomy surgery. The nurses also viewed themselves as having a holistic view of the child and family. This included looking at psychosocial issues, as well as physical aspects of care, and incorporating recommendations from other professionals into a meaningful whole.

Caregiving by its nature looks at the person in its entirety with all dimen- sions considered. I think that’s one of the unique things about nursing, that we have that responsibility to look at past, present, future, family as an integral unit, incorporate all the recommendations from all disciplines into a meaningful twenty-four hour kind of care-execute it, evaluate it, meet all your goals at the end.

Having a holistic view might mean alerting others on the team to possible implications of a suggested approach. For example, one nurse described a possible scenario of physicians identifying gastrostomy surgery as the obvious solution to a feeding problem, but not recognizing the implications for the family.

Sometimes [physicians] don’t bring the rest of us along with them quite, if you know what I mean. “There it is. This is what’s needed and what’s the fuss?” I don’t see that from every physician, but I do meet that attitude sometimes. “A tube’s needed, so let’s put one in. What’s the discussion about?’ In many cases I feel like it’s up to the nurses to say back to the physicians, “Here’s what the issues are for this family.” It’s certainly my job a lot of times.

Another nurse described part of her role as “moderating the enthusiasm” of others who might not have an understanding of the implications of some action. She gave the example of a teacher or occupational therapist

44 M J. Radford, S. Thorne, and C. Bassingthwaighte

wanting to put ketchup on the food of a child who was reluctant to eat, not realizing that the child had gastroesophageal reflux and the reluctance might not be due to the taste of the food, but rather remembered discomfort from previous episodes of aspiration. Because of their holistic view of the child, these nurses believed that their’s was the only discipline in a position to identify and act on such potential risks.

Active teamwork was identified by many of the nurses in this study as being critical to the coordinated care of children with gastrostomies. A multidisciplinary team approach tapped a variety of professional perspectives without giving inconsistent messages to parents. Further, it offered a mechanism to identify system gaps and improve health care delivery systems. As active team participants, expert nurses took leadership in coordinating seamless care from the identification of the need for gastrostomy surgery through to a holistic orientation to psychosocial and physical care.

Honoring Diversity

The third theme emerging from the interviews with expert nurses was that of accepting and respecting diverse views on family life, child care, and health problem management. For example, the nurses recognized that while the views of health professions disciplines were inherently dis- tinct, and that parental views might differ dramatically from professional opinions, all such views could be valid interpretations of a situation.

Various team members will look at a particular behavior of a child and interpret it a certain way, and the family will look at the same behavior, in the same context, and will have a completely different slant on what that behavior means. . . . We see that, actually quite often, where caregivers will be picking up . . . on certain cues from a child that will indicate to them that this is not pleasurable, this is uncomfortable, whatever. A parent may see that completely opposite. Or vice versa, where a caregiver may say, “Oh, this looks to me like pleasure.” A parent may interpret this as pain, or discomfort. So I think that, for me, really makes this whole issue extremely complicated. Because it’s perceptions of reality and it depends on what perspective, or what discipline one is-what focus, what bias one comes into the situation with.

Understanding these differences between parental and professional

In many cases the nurses are much more likely to come to that conclusion [that a child would benefit from having a gastrostomy] more quickly. On some level it’s kind of routine for us, and that’s what I was alluding to

perspectives influenced nurses’ interactions with parents.

when I said that we needed to give people time to experience it as parents, not as we experience it.

Because they could appreciate the credibility of a number of different perspectives, these nurses focused their interpretations on the uniqueness of each child and situation, and the need to “find out what’s the most important thing for this child” when working with a family. For example, as they explained, parents who want to take their child swimming might prefer to have a gastrostomy device that lies flush to the skin, and is therefore less obvious than a tube. Other parents might prefer a straight tube because of previous difficulties with skin breakdown, or its straight- forward re-insertion procedure. Exploring the parents’ perspective on the situation allowed these nurses to advocate for the families at all stages of the gastrostomy process and influence decisions with regard to the surgical procedure, device selection, and all aspects of gastrostomy management.

An awareness and acceptance of parental perspectives also involved recognition that adaptation to the major challenges associated with gastrostomy typically requires significant modifications to the procedures that are taught to them by professionals if families are to manage at home. One nurse described such a family: “They had tailored their family life. For example, like the schedules-the health specialists said, ‘Feed every four hours,’ or whatever. They’d change that. They would feed according to what they felt the child needed.” According to these nurses, parents were more likely to communicate honestly with professionals who understood the parents’ perspective.

I guess they [parents] came to a point where they felt that they were the experts in their child’s care. And they weren’t seeking out the opinions of the professionals as much anymore. There were certain ones they would rely on . . . that they felt saw things their way and . . . were acting in the best interest of their child. So they would align themselves with those professionals. But certain ones they knew, like they would maybe still have to go see them, but they wouldn’t sort of listen to what they said- they wouldn’t take anything that they said to heart-and they’d just know that they knew what was best for their child because they’ve been looking after them twenty-four hours a day and knew what was best for them.

The idea of the parent-as-expert was facilitated by what could be described as a family-centered philosophy that was present in some health care facilities. “We’ve always tried to see the child first as part of the family and try to, whenever possible, take direction from the family. They have the long haul.” For many expert nurses, recognition of the central role of the family was understood as consistent with the broader changes taking place within the health care system.

46 M J. Radford, S, Thorne, and C. Bassingthwaighte

Because of the changes in health care, it’s [family-centered philosophy] happening everywhere . . . the movement for everything to be closer to home, and families are taking a much greater role in health care. If you go to acute care, there’s so much day surgery, and people are being sent home much sooner. And it’s the families that have to pick up the care and get much more involved.

Respecting parents’ unique perspectives and incomparable contributions to their childrens’ care, the expert nurses supported trends toward more active parental involvement in the health care team. However, honoring parent perspectives also required that nurses sometimes had to ac- cept decisions that differed significantly from those that professionals might make. As one explained, “We’re expected to empower people, and we’re empowering them to make decisions. And then we’re not happy with the decision they’re making. It’s great if it all falls together nicely in a little package, but life’s not like that often.”

These nurses made it clear that acknowledging parental perspectives was not always easy or comfortable for professionals. Because of this, they theorized about the differences between themselves and professionals who were less tolerant of diversity. Several described themselves as having an inquiring approach to their practice. As one explained, “I’m always questioning all the time. It’s just my nature I think, and I’m curious and I like to get to the source of things. If it’s equipment, I often phone the company rep and just talk to them.” The nurses also gave examples of taking the initiative to learn more about a topic, when there was something about which they were unsure.

I’m fairly mature in my nursing career, but I still always, before I do anything for anybody, I still question it. . . . And anything that I’m expected to do, I want to know it’s valid and it has good results. With gastrostomies, 1 think of the actual equipment and the food and the pumps and every little detail. . . . I want to say to myself, “Is this the best that we can use for this person?’ Whether it’s a tiny little adapter that’s about half an inch or less, or a big pole that stands beside them.

Beyond issues of direct care and equipment, these nurses also reflected on the more abstract aspects of working with families, such as the ethical implications of gastrostomy when it meant extending life. For example, one nurse described a child with a degenerative condition who showed little response to his parents or caregivers. The child’s parents wished to have gastrostomy surgery performed, but many professionals thought “nature should have been allowed to take its course.” Another nurse’s comments suggested her ability to understand both the parental

and professional perspectives, and also to tolerate her own uncertainty about a difficult issue.

I have seen anger . . . from staff about that kind of an issue. But it’s hard to know. It isn’t really much of a life, what those children lead. But I also feel that it’s not up to me to say you may not feed your child. So, in that way, I’m not sure what I would do. You know, I used to think I knew the answers to things [laughs]. That’s the thing that I have learned over time myself is that I don’t know the answers to things. I only know the best that I can do every day. So I can’t say if I were in that situation that I wouldn’t ask somebody to put a gastrostomy tube in my child. I can’t say that.

Awareness and acceptance of diverse views helped nurses appreciate the uniqueness of each child and family, thereby facilitating their advocacy role. The expert nurses in this study believed that parents tended to communicate more honestly with professionals who “saw things their way.” As well, they identified a family-centered philosophy as facilitating the acceptance of parents’ perspectives and their contributions as active members of the health team. Finally, nurses described characteris- tics of themselves, such as curiosity and a reflective nature, that may have contributed to their ability to honor diversity.

DISCUSSION AND IMPLICA TIONS

The accounts of expert nurses reveal that holistic care for families in which a child has a gastrostomy requires considerably more than technical skill and emotional support. Indeed, it is apparent that expert nurses draw on a broad range of competencies which are intricately linked in a comprehensive approach to a complex social as well as medical challenge. In the context of an intervention such as gastrostomy, expert nurses practice as active participants and often leaders within multidisciplinary health care teams. Their unique perspective, deriving from both an intimate knowledge of activities of daily living and an inherently holistic orientation to illness experience within families, places nurses in the position of bringing critical information to the team’s attention, recognizing the broader implications of team decisions, and predicting potential problems for which anticipatory guidance is indicated. Since the nursing literature in relation to gastrostomy typically considers nursing roles to begin following the surgical intervention, the important contributions of nurses at all phases of the process are an especially significant contribution of these accounts.

The conflictual nature of gastrostomy decision making and management, arising from the diverse perspectives brought to bear on the matter

48 M. J, Radford, S. Thorne, and C. Bassingthwaighte

by different professional orientations as well as family values, suggests that nursing is in a position to serve as a cultural broker coordinating and managing decision-making processes. Such a role clearly requires a strongly internalized definition of nursing’s domain and contribution, as well as the communication and leadership skills to enact advocacy roles that extend beyond the boundaries of specialized health care settings. To balance the competing demands of child safety and respect for families, nurses require expertise in diplomacy, negotiating, and conflict resolu- tion. Further, they clearly require an ability to appreciate the implications of decisions beyond the immediate situation at hand and to tolerate the inherent ambiguities of ethical dilemmas as they are played out in real life.

Such broad coordinating roles for nursing have been articulated in relation to the needs of families caring for children with other forms of medically complex conditions (Deatrick & Knafl, 1990; Deatrick, Knafl, & Guyer, 1993). For example, the role of nursing in identifying and supporting normalizing strategies within families has been well articulated (Deat- rick, Knafl, & Walsh, 1988; Knafl & Deatrick, 1986). In particular, where a technological intervention is introduced into family life, the complexities of management seem to require increasingly sophisticated nursing involvement. Scharer and Dixon (1 989), for example, found that effective support for parents of ventilator-dependent children at home included assisting parents to be assertive within health care bureaucracies and to develop negotiation skills for dealing with health care professionals.

As Sandelowski (1 993) pointed out, technology dependency represents an important new area of nursing inquiry because technological interven- tions have generated complex conditions that transform human capaci- ties, anatomize the body and experience, and reinforce states of contin- gency. When a technological device renders possible that which was pre- viously impossible, it alters the balance of decision making and raises new moral and ethical questions. In the case of gastrostomy, it is well recognized that the capacity to feed artificially does raise the specter of life prolongation, placing the burden of decision making on human actors rather than nature (Barnie, 1990). The decision to nourish a child in this manner is therefore not morally neutral or devoid of ethical implications for professionals or families.

While technological intervention has long been a feature of the hospital, families are increasingly faced with the challenge of such technologies at home. Beyond the technical skills involved in managing a device, families in such situations clearly need considerable support in “keeping the technology humane” (Zerwekh, 1995). As Liaschenko (1 994) explained, the moral geography of home care demands that we rethink many of our assumptions about how care ought to be delivered and evaluated. When

the context of care is family life, the traditions arising from biomedicine (our “institutional seeing”) are no longer applicable.

Thus, these findings underscore the inherent complexities facing families caring for medically complex children at home and for the nurses who support them. The accounts of expert nurses reveal nursing knowledge in action, a multifaceted coordinating, supporting, anticipating, and guiding role that links the diverse contributions of the health care disciplines with the mundane and everyday priorities of family life. The challenge of supporting families in their efforts to care for children with gastrostomy at home extends far beyond the technical and biomedical, requiring consciousness of the social, political, and the moral. It requires nurses who are confident in their roles, capable of working within ambi- guity and diversity, and capable of leadership within the health care team.

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long-term gastrostomy in children: insights from expert nurses

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