JOURNAL OF PALLIATIVE MEDICINE Volume 17, Number 1, 2014 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2013.0117

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Siblings Caring for and about Pediatric Palliative Care Patients Erin M. Gaab, BSc(Hons), PhD,1 Glynn R. Owens, BTech(Hons), DPhil, DipClinPsych (BPS), AFBPsS,2 and Roderick D. MacLeod, MB, ChB, DRCOG, MMedEd, FRCGP, FAChPM, PhD 3

Abstract

Background: The experiences of young people who have siblings with life-limiting illnesses are not well understood. Aim: The study proposed to identify the concerns of siblings of pediatric palliative care (PPC) patients. Design and Measurement: Semistructured interviews were administered to participants and analyzed using qualitative inductive thematic analysis. Setting and Participants: Study subjects were 18 siblings of PPC patients aged 9 to 22 living in the Auckland area. Results: The siblings of PPC patients held concerns about their siblings’ impending death and desires to be involved in their lives and care. Conclusions: Siblings may benefit from opportunities to be involved in conversations about mortality and the care of their ill sibling. They are able to express their concerns and help provide care to PPC patients.

attention and status within the family.10,11 PPC patients have a great diversity of medical conditions (beyond cancer),12 creating a variety of needs of siblings of children with other life-limiting illnesses. Siblings may have a variety of concerns. Anticipating death is an obvious concern of those involved in caring for a palliative patient. Siblings of oncology patients may report heightened concerns about the impending death.13 During the high school years, they may be particularly vulnerable to a reconstruction of death-related concepts.14 The loss of a sibling at this time may threaten adolescents’ developmental needs and abilities to cope, causing them to experience a feeling of increased vulnerability.1,15 Grief in anticipation of this loss may not only be expressed in the emotional, expressive fashion that one might expect. Siblings might take another pattern that fits their own coping skills, such as displaying instrumental anticipatory grief.16 Siblings interviewed years after their brother or sister’s death spoke of wishing they had received more information about their sibling’s death before the terminal period.15,17 The transmission of information may be important for ensuring that siblings are able to prepare for impending deaths.18 The family-centered field of PPC is relatively new, with the first children’s hospice in the world established less than half a

Introduction

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oung people are affected when someone close to them dies.1 When the dying person is young, the abnormality of the situation2 and the relationship to the peer make coping especially challenging. Anticipated deaths, such as those of pediatric palliative care (PPC) patients, allow those involved time to prepare. The family-centered approach of PPC involves maintaining the integrity of each individual and the family as a whole.3,4 Understanding the needs of all family members,5 including the siblings of youth with life-limiting illnesses, has been advocated. However, research into PPC in New Zealand (NZ) is limited.6 The roles and needs of PPC patients’ siblings are unclear. A review of respite services in northern NZ revealed compromised family cohesiveness among parents caring for PPC patients.7 Though siblings are conventionally seen as the recipients of care within the context of the family, they may take on additional roles. The siblings of disabled children may be seen as active contributors to the family and the welfare of their siblings.8,9 Siblings of pediatric oncology patients have been found to demonstrate increased sibling maturity and empathy, though they may experience poor quality of life in emotional, family, academic, and social domains, and a loss of

1

Health Sciences Research Institute, University of California, Merced, California. Department of Psychology, University of Auckland, Auckland, New Zealand. 3 HammondCare and University of Sydney, Sydney, Australia. Accepted September 3, 2013. 2

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century years ago.19 Consequently, it is no wonder that there is a lack of research addressing the interests of siblings of PPC patients. Though studies of the siblings of cancer patients have been conducted,13 they are disease specific. Since PPC teams aim to help families of children with cardiovascular, malignant, neuromuscular, and other conditions, this study includes patients from each of those categories. The present exploratory study sought the voices of young people coping with a sibling’s disease in order to understand their current roles, needs, beliefs, and concerns. Methods Participants English-speaking siblings of children receiving PPC or who had received PPC prior to their death were invited to participate only after verbal permission was granted from their caregivers. A total of 18 young people aged 9 to 22 years participated, including bereaved (six months to two years after their sibling’s death) and nonbereaved children, due to the small number of children in the Auckland region utilizing palliative services. Those interviewed included seven bereaved sisters, five nonbereaved sisters, four bereaved brothers, two nonbereaved brothers. The participants came from a total of nine families. All siblings had coresided with a child receiving PPC for at least some of their childhood years. The participants’ siblings’ illnesses included cancers, heart conditions, and dystrophies, categorized in Table 1. Their ethnicities included European New Zealander, Maori, Pacific Island, and other European. The participants were recruited through the PPC Team, Child Cancer Foundation, Heart Children Foundation in Auckland, and True Colours in Hamilton, NZ, between February 2010 and March 2011. The PPC Team members, Heart Children Foundation family support people, and True Colours counsellors spoke directly about the research with families who fit participation criteria and delivered or posted brochures to them. The Child Cancer Foundation’s Caring magazine promoted the research. The majority of the families

were recruited through the PPC team, who identified them as English-speaking siblings of children not expected to survive until adulthood who had the cognitive ability to be able to verbalize their perspectives. Ethical approval of the study was granted by the Northern X Regional Ethics Committee, reference number 4531. Materials Eligible families received young person and adult participant information sheets detailing the study aim and procedures, consent forms (for parents/caregivers), and assent forms (for young people). After receiving consent of the PPC providers and family of the young people, the principal investigator (PI) met with the siblings to answer questions. Though a variety of instruments have been developed to assess the needs of caregivers of adult palliative patients,20 few exist for siblings of PPC patients. Semistructured interviews (see Appendix 1) were designed by health and clinical psychologists. All interviews were administered by the PI to consenting participants in their homes and audiorecorded— except one involving a participant who asked to respond to the questions in written format. Procedure After completion of the 15–80-minute interviews, the PI transcribed all the recorded data. The interviews were analyzed as a complete collection, discounting differences between the bereaved and nonbereaved siblings and between the male and female datasets to provide a more inclusive perspective of siblings’ experiences. Braun and Clarke’s method of inductive thematic analysis21 was applied. The transcripts were stored in NVivo qualitative data analysis software (NVivo 9; QSR International Pty Ltd, Doncaster, Victoria, Australia). After transcription, all the interviews were read multiple times and initial ideas for repeating subjects were recorded. Quotations related to the sibling’s experience were coded on a semantic level without interpreting statements of the

Table 1. Patients and Their Relatives Relationship with ill child Bereaved brother 1 Bereaved brother 2 Sister 1 Bereaved sister 2 Bereaved sister 3 Bereaved brother 3 Bereaved sister 4 Bereaved sister 5 Bereaved sister 6 Bereaved brother 4 Brother 5 Bereaved sister 7 Sister 8 Brother 6 Sister 9 Bereaved sister 10 Sister 11 Sister 12

Age at relative’s death (years)

Ill child’s illness

Ill child’s age at interview or death

12 14 11 22 22 10 11 10 14 10 10 17 13 9 14 19 9 11

Malignancy Malignancy Neuromuscular Malignancy Malignancy Neuromuscular Other Other Other Neuromuscular Cardiovascular Malignancy Cardiovascular Cardiovascular Cardiovascular Neuromuscular Malignancy Neuromuscular

10 10 19 19 19 16 3 3 15 18 17 12 15 15 15 3 12 17

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64 young people. A few of the same quotations were allocated different codes (e.g., ‘activities with the ill child’ and ‘communication within family’). Other similar codes that arose from the data were gathered into potential themes (code families). The themes were reviewed by checking the associations to the quotations and the entire dataset, defined, and labeled. After initial coding, the two most robust themes were analyzed thematically: participants’ knowledge about death (‘The mortality of PPC patients described by siblings’) and involvement in the care of siblings (‘Helping PPC patients described by siblings’). Other themes are not included in this paper due to space constraints. Repeating codes were grouped together. The coding procedure was intended to identify the subthemes specific to each dataset. A Maori research companion verified cultural and methodological appropriateness through intercoding. A Maori research companion, a health psychology doctoral student, and another academic intercoded and revised to verify cultural and methodological appropriateness. Discrepancies were reconciled through discussion and consensus. The intercoding also served to ensure the coherence of the themes against participants’ accounts as conveyed across the interviews as a whole. This more holistic level of analysis helped identify what participants emphasized relative to each other. In order to ensure the accuracy of the qualitative analysis, credibility was addressed by gaining understanding of the target population through consultations with the PPC Team before and during the research process—a thorough rapport building process involving multiple meetings before the interviews took place—and through explanation of the opportunity to refuse participation to ensure that data was only collected from those who genuinely wanted to offer data freely. Transferability was addressed by defining the context in which the research took place (see Table 1 and the Methods section); and confirmability was addressed by rigorous adherence to Braun and Clark’s method of thematic analysis, outlined in their 2006 article.21 Results Though each young person interviewed held different perceptions of their situations, backgrounds, and issues, ‘helping’ and ‘mortality’ themes consistently arose. Based on the thematic analyses of interviews and the high degree of congruence between transcripts, these issues may be significant to siblings. The mortality of PPC patients described by siblings Most siblings at least mentioned the impending or past deaths of the ill children in their families, though mortality was not initially asked about in the interviews (see Table 1). They learned about the prognosis or death through a variety of channels and expressed the outcomes of obtaining the information. The impending or past death of their sibling was revealed to young people through several avenues. Their parents, doctors, or the ill children themselves told most of the siblings. They often noticed the ill children getting sicker as their symptoms became worse, but many did not fully expect their brother or sister to die in the end.

GAAB ET AL. I don’t think any of us expected her to die. I mean, we knew it could happen, but I don’t think we were prepared for it. (Bereaved sister 3)

Most siblings felt it was important to discuss the impending death, because it increased their understanding of the situation. The knowledge gave them a greater appreciation of their sibling, which usually resulted in them spending more time with them. They became more patient and accepting of the ill children. Several siblings mentioned feeling inexperienced and needing time to cope, prepare, and seek comfort in the situation. I prefer to know what was going on. I would hate being left out..It’s easier to cope if you know everything. If you’re left out, I find it would’ve been harder to cope.because you don’t know what’s going on or what’s happening. (Bereaved sister 2) [Siblings] should spend as much time as they can with.their sibling.because they’ll probably regret it if they don’t. And being young, it may affect them more than an older person. ’Cause if they don’t understand it, then they don’t realize what’s happening..And just learning to be patient and accepting of the young person when they’re sick and realizing that they do need more attention than you, but.it’s not their fault. It’s just because the other person’s sick. And probably joining in. Like if they’re told everything, they know that they feel a part of it. So that they’re not left out, then they probably.deal with it better. (Bereaved sister 3)

A few mentioned anger at being ‘left in the dark’ or expressed confusion and fear of siblngs’ symptoms without having them explained. One also mentioned that being misled at the end of her sibling’s life made it harder for her to cope later. You don’t want to talk to somebody at school, unannounced, and you don’t want to be left alone, but.people should know. It’s better to know than being left in the dark..Say you walk up and say something wrong.then you don’t know why everyone’s upset with you. I think people should tell. Even young kids should be told. It affects them. (Bereaved sister 2)

A few siblings also spoke about the negative consequences of anticipating their brother’s or sister’s death. A couple said they felt nervous when their sibling went to sleep and worried that they would not wake up. There was one time when [ill brother] didn’t wake up until like 3:00 in the afternoon and I was getting sort of scared ’cause I didn’t know that Mum was actually going in and checking up on him. So when I.woke up and came out, I was so relieved [laughs] ’cause I was getting a bit nervous. (Sister 1)

Some also did not want their friends to talk about the death and felt that the topic was often brought up too much, making it difficult to maintain normality. Many worried about losing the ill child. A couple suggested that it was more helpful to talk about how the ill child enjoys life than receiving pity or awkward sympathy. We always used to say that he won’t die.even though everyone around us was saying that he will.. We were just trying to say that he was normal and that he was like everyone else, but just like, stuck in a body where he couldn’t do anything.. They just like always brought up.that he wasn’t going to last forever. (Bereaved sister 4)

Siblings generally wanted to be informed of their ill siblings’ health statuses but did not want death/mortality to be the topic of every conversation.

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Helping PPC patients described by siblings

Discussion and Conclusions

Most siblings expressed the importance of helping the ill child in their families. They provided practical support in the form of transporting wheelchairs; fetching medications, games, schoolwork, and other things; cleaning dishes and ill children’s rooms; and (in the case of several bereaved siblings) fulfilling postdeath wishes. They wanted the ill child in their family to be happy, so sang and joked with them, left them alone when required, and comforted them. They helped in order to worry less, provide comfort, keep things positive and normal, and feel the joy of helping.

While the existing literature indicates that siblings are concerned about each other, there is still a lack of research on the issues of siblings’ real and desired roles. For this reason, health care providers may be unaware of the best way to assist siblings as ill children’s diseases progress. To address this gap in our knowledge, we conducted this research to document siblings’ self-reported concerns, perceptions, and experiences. The current roles and needs of ill children’s siblings reflect those of concerned caregivers. Young people indicated that their involvement in the exchange of information and support was significant to them. The support needs of siblings interviewed are largely consistent with other studies. Brothers and sisters of pediatric oncology patients value emotional, instrumental, and informational support as the most helpful in their adjustment to having a chronically ill sibling.22 The concerns expressed by siblings of children receiving PPC clustered around two main themes: helping behavior and mortality. The siblings interviewed wanted to be enabled and informed in those areas. This study indicates that addressing these concerns may be warranted within some families. Communicating about the end of life is important to families; studies find that caregivers’ comments regarding helping indicate a desire to protect and prepare their children.23 Caregivers may be able to prepare children by addressing support and health topics with them.24 Caregivers who are apprehensive about sharing about those topics may take note: being involved in the ill child’s care and conversations about their general health status were discussed in mostly positive terms by the siblings interviewed. The consequences of talking to siblings about sensitive issues are likely to outweigh the costs of remaining silent. Siblings may benefit from providing assistance as well. Perhaps by engaging in helping behavior, the young people interviewed were being instrumental16 in their anticipatory grief. In order to fulfill young people’s cognitive and active coping styles, caregivers may involve them in caring for their brothers and sisters. Open, transparent, directive instructions on how siblings of children receiving PPC can help their families, especially their ill siblings, would have likely been appreciated by all the participants, who valued being helpful and involved. This study is limited by several factors. Recruiting siblings of children receiving PPC is challenging due to the small population in NZ and the gatekeepers involved. Participants included both bereaved and nonbereaved 9–22-year-old siblings, despite the obvious differences between the experiences of bereaved and nonbereaved individuals. In order to maintain high ethical standards, sensitivity to participant needs took priority. Participation was entirely voluntary and the permission of potential participants’ medical team or supportive organization was sought before that of caregivers. Most of the young people agreed to participate once all the other gatekeepers consented. The sample of participants is small, context specific, and not necessarily representative of the population at large. The children came from a variety of ethnicities, cultures, ages, and genders and their siblings’ diseases varied. Any of these factors may have influenced their participation in caregiving activities.

I always help him when he’s in the wheelchair and.I used to help my mum get him into the shower.. Normally he would get stuck between the rocks with his wheelchair and then I would have to go and get him help. (Bereaved brother 4)

Some siblings mentioned that they were happy to help by sacrificing time with caregivers so that the ill child could be looked after. They recognized the ill children’s needs which were greater than their own and most expressed gratitude that the ill children received extra attention. [Ill sister] got a lot more attention than me.. She’s the one that’s sick.. Can’t get angry with that.. They need attention and that to get better. I didn’t mind it, actually! (Bereaved sister 2)

When asked how siblings could be better supported by others (see questions 10–12, Table 1), many brothers and sisters expressed that helping the ill child in their family was helping them. Friends who visited, prayed for, and stuck around ill children were valued by siblings. One sibling responded to the question, ‘What has your family or doctors done that has been helpful for you?’ with, Be there when I’ve needed them and showed love to me and my brother. (Bereaved sister 7)

Siblings generally wanted to help more. They also expressed special gratitude for the help that ill children provided to them, which was both practical and emotional in nature. When asked, ‘What else would be helpful for you or for other young sisters or brothers like you?’ one participant responded, More support and understanding.like what’s wrong when they’re still with it.. I didn’t really have time to make sense of it. I had to just.deal with it.. We didn’t really expect it. They could’ve helped us to.just to.help; how to help your sister. These are some things that might help her and things not to do ’cause it makes her get sick or something ’cause for the first time we had to just figure it out by ourselves. (Brother 6)

Being included in the care of ill children was important to most siblings. ‘[It is helpful] that we can do jobs for people when they are sick and.get them what they want and get them what they need.’ (Bereaved brother 2)

When asked about their roles, needs, beliefs, and concerns when coping with a sibling’s disease, siblings mentioned the mortality of ill children and how they helped them. They expressed the significance of communicating about death, the avenues through which it occurred, and the consequences of so doing and spoke broadly about the importance of caring for the child receiving PPC in their family.

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GAAB ET AL.

More research with the siblings of children receiving PPC is needed to test the generalizability of these findings. It seems clear that some siblings of children with life-limiting illness value the opportunity to talk about the illness. Given this, and the fact that they may also value participating in caregiving roles, it would be valuable to extend this type of research further. A quantitative study of siblings’ desires and wishes (including that of being involved in caring for and conversing about their sibling) may enable practitioners to pinpoint their needs more effectively. A list of directive instructions on how siblings of children receiving PPC can help their families could be constructed by children through participatory action research25 or through another method that engages them in helping behavior. As previously stated, understanding the needs of siblings and other family members5 has been advocated. It may not only be parents who feel empowered by being involved in discussions and contributing to the care of the ill child. Siblings may benefit from altruistic acts. By being involved in caregiving for their ill siblings, they can learn and practice active coping skills. Acknowledgments We thank the participating brothers and sisters and their caregivers for their courage, trust, and altruism. Author Disclosure Statement No competing financial interests exist. References 1. Shipkey N: Impact of sibling death on older adolescents. ProQuest 2008. Doctor of Nursing Science, The State University of New York of Buffalo. 2. Balk DE, Zaengle D, Corr CA: Strengthening grief support for adolescents coping with a peer’s death. Sch Psychol Int 2011;32(2):144–162. 3. Widger K, Steele R, Oberle K, Davies B: Exploring the supportive care model as a framework for pediatric palliative care. J Hosp Palliat Nurs 2009;11(4):209–216. 4. Himelstein BP: Palliative care for infants, children, adolescents, and their families. J Palliat Med 2006;9(1):163–181. 5. Knapp C, Madden V, Curtis C, Sloyer P, Shenkman E: Family support in pediatric palliative care: How are families impacted by their children’s illnesses? J Palliat Med 2010;13(4):421–426. 6. Hynson J, Drake R: Paediatric palliative care in Australia and New Zealand. In: Knapp C, Madden V, Fowler-Kerry S (eds): Pediatric Palliative Care: Global Perspectives. New York: Springer Netherlands, 2012, pp. 379–402. 7. Bierman J (ed): Review of Respite Services for Children in the North Health Region. North Auckland: Health Funding Authority, 1998. 8. Edwards R, Hadfield L, Mauthner ML: Children’s understandings of their sibling relationships. London: National Children’s Bureau for Joseph Rowntree Foundation, 2005. 9. Gillies V, Lucey H: ’It’s a connection you can’t get away from’: Brothers, sisters and social capital. J Youth Stud 2006;9(4):479–493.

10. Alderfer MA, Long KA, Lown EA, Marsland AL, Ostrowski NL, Hock JM, Ewing LJ: Psychosocial adjustment of siblings of children with cancer: A systematic review. Psychooncology 2009;99. 11. Hamama R, Ronen T, Feigin R: Self-control, anxiety, and loneliness in siblings of children with cancer. Soc Work Health Care 2000;31:63–83. 12. Feudtner C, Kang TI, Hexem KR, Friedrichsdorf SJ, Osenga K, Siden H, Friebert SE, Hays RM, Dussel V, Wolfe J: Pediatric palliative care patients: A prospective multicenter cohort study. Pediatrics 2011;127(6):1094–1101. 13. Havermans T, Eiser C: Siblings of a child with cancer. Child Care Health Dev 1994;20(5):309–322. 14. Noppe IC, Noppe LD: Evolving meanings of death during early, middle and later adolescence. Death Stud 1997;21(3): 253–275. 15. DeVita-Raeburn E: The Empty Room: Surviving the Loss of a Brother or Sister at any Age. Dordrecht, Heidelberg, London, New York: Scribner Book Company, 2004. 16. Martin TL, Doka K: Men Don’t Cry, Women Do: Transcending Gender Stereotypes of Grief. Philadelphia, PA: Brunner/Mazel, 2000. 17. Nolbris M, Hellstro¨m A-L: Siblings’ needs and issues when a brother or sister dies of cancer. J Pediatr Oncol Nurs 2005; 22(4):227–233. 18. Davies B: Shadows in the Sun: Experiences of Sibling Bereavement in Childhood. Philadelphia, PA: Brunner/Mazel, 1999. 19. Worswick J: A House Called Helen: The Development of Hospice Care for Children, 1st ed. Oxford: Oxford University Press, 1993. 20. Hudson PL, Trauer T, Graham S, Grande G, Ewing G, Payne S, Stajduhar KI, Thomas K: A systematic review of instruments related to family caregivers of palliative care patients. Palliat Med 2010;24(7):656–668. 21. Braun V, Clarke V: Using thematic analysis in psychology. Qual Res Psychol 2006;3:77–100. 22. Murray JS: A qualitative exploration of psychosocial support for siblings of children with cancer. J Pediatr Nurs 2002; 17(5). 23. Gaab EM: Primary caregivers’ decisions around communicating about death with children involved in pediatric palliative care. 2013;15(6):322–329. 24. Richmond J, Colman W: After the death of a child: Helping bereaved parents and brothers and sisters. DevelopmentalBehavioral Pediatrics 4th ed. Philadelphia, PA: Saunders Elsevier, 366–372. 25. Baum F, MacDougall C, Smith D: Participatory action research. J Epidemiol Community Health 2006;60(10): 854–857.

Address correspondence to: Erin M. Gaab, BSc(Hons), PhD Health Sciences Research Institute University of California, Merced 5200 Lake Road Merced, CA 95340 E-mail: [email protected]

(Appendix follows /)

SIBLING PERCEPTIONS IN PPC

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Appendix 1. A Semistructured Interview Given to Patient’s Sibling 1. Let’s draw a family tree. a. Who else do you see often? Do you have any pets? 2. Tell me something about your brother/sister. What do/did you like to do with him/her? a. When you talk to your friends about your brother/sister, what do you tell them about him/her? 3. How do/did you get on with your brother or sister? a. Has it always been/was it always that way? 4. If I was to ask your brother or sister to tell me about you, what do you think he/she would say? a. What might he/she say if I asked him/her to tell me about you in three words? b. If I asked your brother/sister what you do for him/her, what would he/she say? 5. What are some things you and your brother/sister had fights about? 6. How is your brother/sister doing? (Only asked to siblings of living patients.) 7. What is/was tough about having an unwell brother/sister? a. Other brothers/sisters find.(less time with mum and dad, etc.) to be hard. What do you think about that? 8. Is there anything you worry/worried about with him/her? a. What do/did you do when you are/were worried about him/her? b. Who do/did you talk to? c. Do you use Facebook, Bebo, Myspace, or other social networks? If so, how (messages, wall posts)? 9. What do you remember about being told about your brother’s/sister’s illness? a. What do you remember about the day your brother/sister was diagnosed with his/her illness? 10. What has your family/whanau/doctors done that has been helpful for you? a. What have your friends done that has been helpful for you? b. What else would be helpful for you or other young people like you? 11. What should other young people know about what it’s like to be a young person with an unwell brother/sister? a. What advice would you give to another young person like you? 12. What should adults know about what it’s like to be a young person with an unwell brother/sister? 13. Has anyone else asked you questions like these before? Who? 14. I’ve just asked you heaps. Is there anything that you would like to ask me?

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Siblings caring for and about pediatric palliative care patients.

The experiences of young people who have siblings with life-limiting illnesses are not well understood...
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