The Family's Experience Of The Child And/or Teenager In Palliative Care: Fluctuating Between Hope And Hopelessness In A World Changed By Losses
Bereavement; Family Health; Family/px [psychology]; Hope; Palliative Care; Adolescent; Child; Child Preschool; Female; Humans; Male; Young Adult
OBJECTIVES: to understand the family's experience of the child and/or teenager in palliative care and building a representative theoretical model of the process experienced by the family. METHODOLOGY: for this purpose the Symbolic Interactionism and the Theory Based on Data were used. Fifteen families with kids and/or teenagers in palliative care were interviewed, and data were collected through semi-structured interviews. RESULTS: after the comparative analysis of the data, a substantive theory was formed "fluctuating between hope and hopelessness in a world changed by losses", composed by: "having a life shattered ", "managing the new condition", "recognizing the palliative care" and "relearning how to live". Hope, perseverance and spiritual beliefs are determining factors for the family to continue fighting for the life of their child in a context of uncertainty, anguish and suffering, due to the medical condition of the child. Along the way, the family redefines values and integrates palliative care in their lives. CONCLUSION: staying with the child at home is what was set and kept hope of dreaming about the recovery and support of the child's life, but above all, what takes it away even though temporarily is the possibility of their child's death when staying within the context of the family.
Misko M D; dos Santos M R; Ichikawa C R; de Lima R A; Bousso R
Revista Latino-americana De Enfermagem
2015
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1590/0104-1169.0468.2588
Decision Making Process Of Parents With Seriously Ill Children At The Hospital
Objectives
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Identify the core category for parents of a seriously ill child about the decision making process at the hospital.
•
Identify parents' preferences when they have to make a decision on behalf of their seriously ill child.
Original Research Background
Changes related to the decision making of parents of seriously ill children at the hospital have been reported in the literature, emphasizing the active role of parents and professionals in sharing information. Professionals are unprepared to deal with the dying process, and parental involvement in decisions is important for the care and future of the family.
Research Objectives
This study aimed to understand the experience of parents of seriously ill children regarding the decision-making process in the hospital.
Methods
This is a qualitative study using Symbolic Interactionism and Grounded Theory as theoretical and methodological framework. Data collection was performed in a pediatric hospital in São Paulo, through active observation, hospital records and semi-structured interviews with 10 parents who had their children hospitalized with a life-threatening condition during the data collection period. The interviews were recorded and transcribed. Data was analyzed following the procedures of the Grounded Theory.
Results
After the theoretical saturation had been reached, it was possible to propose a theoretical model to explain the decision-making process of parents by the core category: Being good for my child is being good to me, and the following categories: being scary, recognizing that everything is being done for the child, needing information, deciding about the participation in decision-making, having faith and hope, and valuing a relationship of trust with health providers.
Conclusion
The results indicate that parents’ experience in decision-making is related to individual preferences and the relationship with the healthcare team, which allow them to trust some decisions to physicians and to play an active role as their children’s s advocates.
Implications for Research, Policy or Practice
Ensuring family care, from what parents consider good for their child, allows nurses to guarantee the active role of parents in the decision-making process.
Misko M; Bousso R; Santos MR
Journal Of Pain And Symptom Management
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
http://doi.org/10.1016/j.jpainsymman.2015.12.062