The parents' ability to attend to the 'voice of their child' with incurable cancer during the palliative phase
| Autor: | Leonie C. de Bock, Mieke Grypdonck, Johannes J. M. van Delden, Marijke C. Kars |
|---|---|
| Rok vydání: | 2015 |
| Předmět: |
Adult
Male Parents Palliative care Adolescent media_common.quotation_subject Phase (combat) Developmental psychology Young Adult Perception Neoplasms Interview Psychological Humans Conversation Young adult Parent-Child Relations Child Applied Psychology Qualitative Research media_common Communication Perspective (graphical) Palliative Care Infant Middle Aged Psychiatry and Mental health Child Preschool Chronic Disease Female Thematic analysis Psychology Qualitative research |
| Zdroj: | Health psychology : official journal of the Division of Health Psychology, American Psychological Association. 34(4) |
| ISSN: | 1930-7810 |
| Popis: | Objective In pediatric oncology, parents want, and are expected, to act and decide in the best interest of their child. A recent qualitative study (PRESENCE study) indicated that parents had difficulty in doing so. The aim of this subanalysis was to describe and offer an explanation for the parents' actions in expressing and handling of "the voice of the child." Method A multicenter, qualitative research study comprising 37 interviews conducted with 34 parents of 17 children with incurable cancer, cared for at home, during the palliative phase. A thematic analysis was conducted. Results The "voice of the child" becomes manifest in the parents' expressions of the child's needs and perceptions. Parents who actively searched to understand their child's inner perspective used direct and indirect strategies. Parents preferred indirect strategies when their child avoided talking or when they considered the conversation as threatening for the child, or for themselves. Even if the parents show an intense involvement in the care and support of their child; they can still have difficulty acknowledging the child's perspective. An inability to take into account the child's perspective was largely due to the parents' own struggle to cope with loss. Conclusions Whether or not the voice of children approaching the end-of- life is heard, often depends on their parents' ability to give them a voice. Professional caregivers have a difficult task in supporting parents in giving their child his or her voice, while at the same time preserving their, and their parents', ability to cope. |
| Databáze: | OpenAIRE |
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