Unveiling a fragile spirituality: Experiences of connectedness in pediatric palliative care

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Parental Physical Proximity in End-of-Life Care in the Pediatric Intensive Care Unit 53 INTRODUCTION When a child is treated in a pediatric intensive care unit (PICU), parents often feel at a loss in the alienating high-tech environment (Balluffi et al., 2004; Meert, Briller, Schim, & Thurston, 2008). Caring for their child themselves is often hampered by the necessary medical equipment and procedures such as insertion of IV lines and/or the presence of drains. Anxiety and stress levels can be high, especially when the child is in danger of dying. The staff is aware of this; concern for the families is naturally included in pediatric care, especially in palliative care (“American Academy of Pediatrics. Committee on Bioethics and Committee on Hospital Care. Palliative care for children,” 2000; Boss et al., 2014; Jones, Contro, & Koch, 2014). In order to fulfill their role as a parent and to be there for their child, they need support from the medical and nursing staff (Davidson et al., 2007; Liben, Papadatou, & Wolfe, 2008; McGraw et al., 2012). However, it is not easy for PICU staff to give high-quality effective end-of-life care, including care for the parents (Longden, 2011; Polikoff & McCabe, 2013). The time between the possibilities of cure and the imminence of death, the transition to end-of-life care, may be very short. End-of-life care is therefore often a matter of ad hoc decisions. The needs and perceptions of parents who lose their child in the ICU have been investigated in international research programs. Effective communication, participation in decision making, and the possibility to fulfill the parent role until the very end proved important features (Aschenbrenner, Winters, & Belknap, 2012; Longden, 2011; Polikoff & McCabe, 2013). Meeting their wishes is important as the child’s death often leaves parents in long-term psychological distress (Meert et al., 2010). From the perspective of parents, preservation of the integrity of the parent-child relationship is one of the priorities of pediatric end-of-life care (Kars, Grypdonck, & van Delden, 2011; McGraw et al., 2012; Meyer, Ritholz, Burns, & Truog, 2006). Having the opportunity to be the parent and to act accordingly is very important in this context. When parents can feel connected to the child in all phases of the bereavement process, they feel better able to adapt to the loss (Meert, Briller, Schim, Thurston, & Kabel, 2009). This connection does not end with death. In fact, bereaved parents experience continuous bonds with their child (Klass, Silverman, & Nickman, 1996; Longden, 2011; Rosenblatt, 2000; Talbot, 2002; Tedeschi & Calhoun, 2004). Continuing the bond with a deceased loved one can be part of the process of adaptation to loss, as long as the reality of the death is also fully realized (Field, 2008). Physical care provision and physical proximity have been recognized as essential expressions of the parent-child relationship and connection (McGraw et al., 2012; Meyer et
54 Chapter 3 al., 2006). Yet these conditions are hard to realize in a PICU, where the patient is almost never without tubes, lines, drips, bandages etc. How this affects physical attachments between parents and their sick child has not yet been explored in detail. The aim of this study was to explore in what sense physical aspects influence the parent-child relationship in end-of-life care in the PICU. MATERIALS AND METHODS Design This study is part of a larger research project exploring meaningful experiences of parents whose child died in the PICU. To identify features of meaning and significance, we applied a qualitative research design with unstructured in-depth interviews with prompts given to elicit information from parents when necessary, 5 years after the death of their child. Setting The setting for this study was the 34-bed multidisciplinary tertiary care PICU of the Erasmus MC-Sophia Children’s Hospital, Rotterdam, the Netherlands. Interviews were conducted in 2013 and 2014. Participants In the years 2008 and 2009, 92 children had died in the PICU. Thirty-eight children were randomly selected using a random number generator. This approach, although not typical in qualitative research, was chosen because the interviewer worked in the department and we wanted to make clear that the selection of parents was not based on personal preference. The parents of these children were invited by letter to have an interview concerning their experiences in the PICU at the time of death of their child. The letter explained that they need not respond if they did not want to participate and in that case would not be contacted again. Six letters came back unopened. Of the remaining 32 invitations, 20 were accepted (response rate 62.5 %). After 20 responses data saturation was reached. It was left to the choice of the parents whether they wanted to be interviewed individually or as a couple. The study was approved by the Erasmus MC medical ethical review board (No. 2011- 436). Written informed consent was obtained from all participants.
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VU Research Portal Unveiling a frag
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UNVEILING A FRAGILE SPIRITUALITY Ex
Page 6 and 7: VRIJE UNIVERSITEIT Unveiling a frag
Page 8: CONTENT Prologue and Dedication 7 C
Page 12 and 13: Prologue and Dedication 9 PROLOGUE
Page 16: Chapter 1 Introduction
Page 19 and 20: 16 Chapter 1 ill children. Health c
Page 21 and 22: 18 Chapter 1 to change either the s
Page 23 and 24: 20 Chapter 1 Although lived religio
Page 25 and 26: 22 Chapter 1 tions of the impact of
Page 27 and 28: 24 Chapter 1 REFERENCES Armbruster,
Page 29: 26 Chapter 1 Superdock, A. K., Barf
Page 33 and 34: 30 Chapter 2 ABSTRACT This is a stu
Page 35 and 36: 32 Chapter 2 In this paper, we focu
Page 37 and 38: 34 Chapter 2 illness itself, leadin
Page 39 and 40: 36 Chapter 2 moving inexplicably, o
Page 41 and 42: 38 Chapter 2 ‘nowhere’. What th
Page 43 and 44: 40 Chapter 2 According to the paren
Page 45 and 46: 42 Chapter 2 there was no satisfact
Page 47 and 48: 44 Chapter 2 of mourning, does not
Page 49: 46 Chapter 2 Stroebe, M., Schut, H.
Page 54 and 55: Chapter 3 Parental Physical Proximi
Page 58 and 59: Parental Physical Proximity in End-
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Page 72 and 73: Chapter 4 The Importance of Parenta
Page 74 and 75: The importance of parental connecte
Page 90: Upon my entering the ward a neonato
Page 93 and 94: 90 Chapter 5 ABSTRACT Spiritual car
Page 95 and 96: 92 Chapter 5 practice, and to help
Page 97 and 98: 94 Chapter 5 Parents were selected
Page 99 and 100: 96 Chapter 5 Table 1 Examples of sp
Page 101 and 102: 98 Chapter 5 somehow: he does it ag
Page 103 and 104: 100 Chapter 5 ‘there is more betw
Page 105 and 106: 102 Chapter 5 In the present study,
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104 Chapter 5 CONCLUSIONS In the co
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106 Chapter 5 Meert, K. L., Thursto
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A little baby girl (15 months old)
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112 Chapter 6 ABSTRACT Spirituality
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114 Chapter 6 to life experiences w
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116 Chapter 6 tion is experienced t
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118 Chapter 6 FRAGILE SPIRITUALITY
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120 Chapter 6 and words become theo
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122 Chapter 6 REFERENCES Armstrong,
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Chapter 7 General Discussion
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128 Chapter 7 on experiences of pos
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130 Chapter 7 contact or a simple w
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132 Chapter 7 ing after her daughte
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134 Chapter 7 Accepting hope in hop
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136 Chapter 7 In addition, explorat
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138 Chapter 7 Korte, A. M. (2011).
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And then came COVID-19 143 Conseque
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And then came COVID-19 145 REFERENC
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Summary 149 A pediatric intensive c
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Summary 151 The research findings e
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Summary 153 sionals provide ground
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Samenvatting 157 Een Pediatrische I
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Samenvatting 159 ouders allerlei me
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Samenvatting 161 sensaties, maar oo
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Dankwoord
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170 Dankwoord Dick Tibboel was dege
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172 Dankwoord De betekenis van kind
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Unveiling a fragile spirituality: Experiences of connectedness in pediatric palliative care

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