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

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The Fragile Spirituality of Parents whose Children died in the Pediatric Intensive Care Unit 103 the impact of spiritual connectedness to the child, to life, and to transcendence is not recognized at all. Spirituality is more than the adherence to a particular view of life. Health care professionals would do well to acknowledge the existential dimension which is part of the human condition. The hope that people cherish both in sickness and in the confrontation with death is not a denial of reality, as is often thought (Sisk, Kang, & Mack, 2018). When in end-of-life care parents voice their hope of a miracle, health care professionals often keep telling them how desperate the child’s condition is (Superdock et al., 2018). In line with findings from Kamihara and co-workers on hope in the context of childhood cancer, our findings show that the contradiction between reality and meaningful experiences that transmit hope, is not problematic to parents (Kamihara, Nyborn, Olcese, Nickerson, & Mack, 2015). Physicians and nurses who are conscious of the fact that families interpret the situation on a different level, are better able to support parents. This underlines the relevance of the concept of Patient and Family Centered Care, in which the perspective of the family is important. Health care professionals are really to listen to what is important to families in their anguish (Meert, Clark, & Eggly, 2013). Strengths and Limitations A strength of our research is that it reveals expressions of spirituality that so far have received little attention. The fact that spirituality can be discovered in people’s stories, even when they do not adhere to a belief or religion, contributes to better understanding of the relevance of spirituality in health care. We realize that our findings may not be generalizable to all bereaved parents. The special spirituality we discovered may be especially found in secularized societies in which belief in a Higher power of God is no longer dominant. A limitation of the study is that the participants were predominantly native Dutch parents, with only one parent from another cultural background. Administering an interview in parents’ home environment can be considered both a strength and a limitation. The strength is that parents felt at ease and could set the pace of the interview. A possible limitation is that of researcher bias. In the interaction between parents and the interviewer, elements of parents’ stories could have been consciously or subconsciously stressed or neglected. In other circumstances or with another interviewer their stories might have been narrated differently. In addition, we cannot rule out certain social desirable responses. For instance, we asked open questions about parents’ experiences and their personal interpretation but when we asked a question like “Do you still feel connected to your child?”, parents might have interpreted this as something they should feel.
104 Chapter 5 CONCLUSIONS In the confrontation with the loss of their child, parents encounter special experiences of a transcending kind, which help them stay connected to their child during the endof-life stage (in the PICU) and after death. We consider these experiences manifestations of a ‘fragile spirituality’, which is a form of spirituality that is fragmentary, unbound, ambivalent, and referring to another dimension in this life. This spirituality is significant in the perspective it offers in the existentially disrupting reality of loss. Thus, the spiritual dimension is part of end-of-life care, and all caregivers should be aware of its relevance and consider offering appropriate compassionate care. ACKNOWLEDGMENTS We warmly thank the participating parents for being open to share their personal experiences. We thank J. Hagoort for editorial assistance.
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VU Research Portal Unveiling a frag
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UNVEILING A FRAGILE SPIRITUALITY Ex
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VRIJE UNIVERSITEIT Unveiling a frag
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CONTENT Prologue and Dedication 7 C
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Prologue and Dedication 9 PROLOGUE
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Chapter 1 Introduction
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16 Chapter 1 ill children. Health c
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18 Chapter 1 to change either the s
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20 Chapter 1 Although lived religio
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22 Chapter 1 tions of the impact of
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24 Chapter 1 REFERENCES Armbruster,
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26 Chapter 1 Superdock, A. K., Barf
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30 Chapter 2 ABSTRACT This is a stu
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32 Chapter 2 In this paper, we focu
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34 Chapter 2 illness itself, leadin
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36 Chapter 2 moving inexplicably, o
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38 Chapter 2 ‘nowhere’. What th
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40 Chapter 2 According to the paren
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42 Chapter 2 there was no satisfact
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44 Chapter 2 of mourning, does not
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46 Chapter 2 Stroebe, M., Schut, H.
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Chapter 3 Parental Physical Proximi
Page 56 and 57: Parental Physical Proximity in End-
Page 68: Parental Physical Proximity in End-
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: 102 Chapter 5 In the present study,
Page 109 and 110: 106 Chapter 5 Meert, K. L., Thursto
Page 112: A little baby girl (15 months old)
Page 115 and 116: 112 Chapter 6 ABSTRACT Spirituality
Page 117 and 118: 114 Chapter 6 to life experiences w
Page 119 and 120: 116 Chapter 6 tion is experienced t
Page 121 and 122: 118 Chapter 6 FRAGILE SPIRITUALITY
Page 123 and 124: 120 Chapter 6 and words become theo
Page 125 and 126: 122 Chapter 6 REFERENCES Armstrong,
Page 128: Chapter 7 General Discussion
Page 131 and 132: 128 Chapter 7 on experiences of pos
Page 133 and 134: 130 Chapter 7 contact or a simple w
Page 135 and 136: 132 Chapter 7 ing after her daughte
Page 137 and 138: 134 Chapter 7 Accepting hope in hop
Page 139 and 140: 136 Chapter 7 In addition, explorat
Page 141: 138 Chapter 7 Korte, A. M. (2011).
Page 146 and 147: And then came COVID-19 143 Conseque
Page 148: And then came COVID-19 145 REFERENC
Page 152 and 153: Summary 149 A pediatric intensive c
Page 154 and 155: 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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