It is estimated that rare diseases affect the lives of over three million people in the United Kingdom. Of these, a significant proportion are children and young people with genetic life-limiting or life-shortening conditions. This study used a qualitative approach with in-depth semi-structured interviews to explore the experiences of 10 adult siblings of a baby diagnosed with Trisomy 13 (Patau syndrome) or Trisomy 18 (Edward syndrome). Findings illustrate that parental grief from the time of their child's diagnosis onward is also experienced by siblings. Although young adults may have conflicting feelings as a bereaved sibling, there is evidence that the experience impacts on their world views and their attitudes about prospective and expectant parenthood. The study highlights the importance of providing siblings with short-term and long-term support from the time of their brother's or their sister's diagnosis onward and provides new understanding about benefit of professional and peer support in helping young adults develop resilience and coping strategies.
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Citation List Month
September 2017 List
Notes
Using Smart Source Parsing ( (pp 2017. Date of Publication: July 2017
Attitude Of Health Personnel; Cancer Palliative Therapy; Childhood Cancer; Communication Barrier; Communication Barriers; Critical Illness/nu [nursing]; Palliative Care/mt [methods]; Parental Attitude; Physician-patient Relations; Article; Cancer Mortality; Cancer Patient; Cancer Therapy; Child; Critical Illness/px [psychology]; Disease Management; Dying; Empathy; Female; Human; Humans; Interpersonal Communication; Medical Expert; Oncologist; Palliative Care/px [psychology]; Parent-child Relations; Parents/px [psychology]; Pediatrician; Psychologist; Quality Of Health Care; Self Defense; Structured Interview
Description
INTRODUCTION: Adequate communication by medical personnel is especially important at certain points during the treatment of childhood cancer patients. AIM: To investigate the timing and manner of communication with parents concerning the introduction of palliative care in pediatric oncology. METHOD: Structured interviews, containing 14 questions, were carried out with physicians working in pediatric oncology (n = 22). Codes were generated inductively with the aid of Atlas.ti 6.0 software. RESULTS: Interviews show a tendency of a one-step transition to palliative care following curative therapy. Another expert is usually involved in communication, most likely a psychologist. Regarding communication, there are expressions utilized or avoided, such as expressing clarity, self-defense and empathy. The communication of death and dying was the most contradictory. CONCLUSION: This was the first investigation regarding communication in pediatric palliative care in Hungary. Our results show that a modern perspective of palliative communication is present, but necessitates more time to become entrenched. Orv Hetil. 2017; 158(30): 1175-1181.
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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).
child death; parent; family; terminal care; priority journal; psychologist; doctor patient relation; constructive feedback; childhood cancer; cancer palliative therapy; cohort analysis; oncologist; structured interview; human; article; female; male; adult; exploratory research; time to treatment; ambivalence; data analysis software; Hungarian (citizen); Hungary
Description
Despite the continuous improvement of pediatric palliative care, medical professionals still face various barriers regarding its implementation; our aim was to investigate this question in Hungarian pediatric oncology practice. Structured interviews were carried out in person with physicians from the Hungarian Pediatric Oncology Group (n = 22). Codes were generated inductively with the aid of Atlas.ti 6.0 software. Most physicians placed the palliative care discussion at the end of curative treatment (n = 21) and preferred to conduct it in a team setting (n = 18), mainly in the presence of a psychologist. Preparing parents for the child's death can occur during the palliative care discussion (n = 3), in the child's final days/h (n = 6), gradually (n = 10), or never (n = 3). There are words consciously utilized and avoided during this discussion, with the word "death" proving to be the most ambivalent (utilized n = 5, avoided n = 6). Conclusions: There is no widely accepted unified practice among pediatric oncologists concerning the implementation of palliative care in Hungary. Despite the international recommendation, the common practice of timing is still at the end of curative treatment. Physicians rely on multidisciplinary teamwork, where the psychologist's role is the most prominent in this discussion.What is Known:* There is an international consensus that palliative care should commence at the diagnosis of a pediatric malignant disease regardless of illness outcome.* Barriers to the early implementation of palliative care in pediatric oncology involve resource-based and attitudinal factors.What is New:* In Hungary, where pediatric oncologists are sole decision-makers, early implementation of palliative care is rare.* There is a strong preference among physicians for working within a team, while also asserting that presence of team members may decrease the level of intimacy.
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).