Dataset Information

Patients' and parents' views regarding supportive care in childhood cancer.

ABSTRACT:

Purpose

Intensive therapies in pediatric malignancies increased survival rates but also occurrence of treatment-related morbidities. Therefore, supportive care fulfills an increasingly important role. In planning development of guidelines with incorporation of shared decision making, we noticed that little is known about the needs and preferences of patients and their parents. Our goals were therefore to investigate (1) which supportive care topics patients and parents regard as most important and (2) the preferred role they wish to fulfill in decision making.

Methods

This qualitative study consisted of three focus groups (two traditional, one online) with patients and parents of two Dutch pediatric oncology centers. Data were transcribed as simple verbatim and analyzed using thematic analysis.

Results

Eleven adolescent patients and 18 parents shared detailed views on various aspects of supportive care. Themes of major importance were communication between patient and physician (commitment, accessibility, proactive attitude of physicians), well-timed provision of information, and the suitability and accessibility of psychosocial care. In contrast to prioritized supportive care topics by medical professionals, somatic issues (e.g., febrile neutropenia) were infrequently addressed. Patients and parents preferred to be actively involved in decision making in selected topics, such as choice of analgesics and anti-emetics, but not in, e.g., choice of antibiotics.

Conclusions

Children with cancer and parents were provided a valuable insight into their views regarding supportive care and shared decision making. These results have important implications towards improving supportive care, both in selecting topics for guideline development and incorporating preferences of patients and parents herein.

SUBMITTER: Tenniglo LJA

PROVIDER: S-EPMC5577054 | biostudies-literature | 2017 Oct

REPOSITORIES: biostudies-literature

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Publications

Patients' and parents' views regarding supportive care in childhood cancer.

Tenniglo L J A LJA Loeffen E A H EAH Kremer L C M LCM Font-Gonzalez A A Mulder R L RL Postma A A Naafs-Wilstra M C MC Grootenhuis M A MA van de Wetering M D MD Tissing W J E WJE

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer 20170429 10

<h4>Purpose</h4>Intensive therapies in pediatric malignancies increased survival rates but also occurrence of treatment-related morbidities. Therefore, supportive care fulfills an increasingly important role. In planning development of guidelines with incorporation of shared decision making, we noticed that little is known about the needs and preferences of patients and their parents. Our goals were therefore to investigate (1) which supportive care topics patients and parents regard as most imp ...[more]

PMID: 28456909

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Project description:BackgroundThe choice between palliative chemotherapy (defined as the use of cytotoxic medications delivered intravenously for the purpose of our study) and supportive care alone is one of the most difficult decisions in pediatric oncology, yet little is known about the preferences of parents and health care professionals. We compared the strength of these preferences by considering children's quality of life and survival time as key attributes. In addition, we identified factors associated with the reported preferences.MethodsWe included parents of children whose cancer had no reasonable chance of being cured and health care professionals in pediatric oncology as participants in our study. We administered separate interviews to parents and to health care professionals. Visual analogue scales were shown to respondents to illustrate the anticipated level of the child's quality of life, the expected duration of survival and the probability of cure (shown only to health care professionals). Respondents were then asked which treatment option they would favour given these baseline attributes. In addition, respondents reported what factors might affect such a decision and ranked all factors identified in order of importance. The primary measure was the desirability score for supportive care alone relative to palliative chemotherapy, as obtained using the threshold technique.ResultsA total of 77 parents and 128 health care professionals participated in our study. Important factors influencing the decision between therapeutic options were child quality-of-life and survival time among both parents and health care professionals. Hope was particularly important to parents. Parents significantly favoured chemotherapy (42/77, 54.5%) compared with health care professionals (20/128, 15.6%; p < 0.0001). The opinions of the physician and child significantly influenced the parents' desire for supportive care; for health care professionals, the opinions of parents and children were significant factors influencing this decision.InterpretationCompared with health care professionals, parents more strongly favour aggressive treatment in the palliative phase and rank hope as a more important factor for making decisions about treatment. Understanding the differences between parents and health care professionals in the relative desirability of supportive care alone may aid in communication and improve end-of-life care for children with cancer.

Project description:The management of childhood asthma is often sub-optimal. Parents and other caregivers are primarily responsible for disease management and this responsibility includes communication with health professionals. The aim of this multi-perspective qualitative study was to explore the views of children, parents and health professionals to gain insight into the approach to clinical care in the management of childhood asthma. Interviews were held with nine parent-child (6-8 years) dyads, and 13 health professionals working in primary and secondary care. Interviews were transcribed verbatim and analysed thematically. Three key themes emerged that were common to all data sets; (1) Child and parent awareness of symptoms; (2) Management and child wellbeing; and (3) Professional communication education and consultation with families. Although some children demonstrate good awareness of symptoms and appropriate use of medication, some parents expressed difficulty in identifying triggers and symptoms of asthma. Furthermore, parents lacked awareness regarding appropriate use of medication for preventing and managing symptoms of asthma. Health professionals believed that communication and education was lacking. Data from all participants suggested that consultations could be enhanced with greater emphasis on children's and parents' perceptions of asthma in the development of asthma management plans. CHILDHOOD ASTHMA:GUIDING FAMILIES THROUGH DISEASE MANAGEMENT: Both parents' and children's perceptions and understanding of childhood asthma should be considered when developing asthma management plans. The management of asthma is challenging and can result in poor disease outcomes if care is not taken. An individual's perception of their (or their child's) asthma can also affect the efficacy of treatment. Aidan Searle at the Bristol Biomedical Research Centre, UK, and co-workers, interviewed nine parent-child groups and thirteen health professionals to determine their perceptions of childhood asthma management in primary care. While some children had a strong awareness of symptoms and appropriate medication use, some parents found it difficult to identify asthma triggers and symptoms. Parents also displayed a lack of understanding of management through medication. Health professionals focused on the need for clearer information for families when guiding management of childhood asthma.

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Dataset Information

Patients' and parents' views regarding supportive care in childhood cancer.

Purpose

Methods

Results

Conclusions

Publications

Patients' and parents' views regarding supportive care in childhood cancer.

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