Telling the story of childhood cancer: an evaluation of the Discovery Interview methodology conducted within the Queensland Children's Cancer Centre

Background: The Discovery Interview methodology was introduced to Oncology Services Group in 2012 as a service improvement strategy and was evaluated positively by staff and families. It enabled clinical staff to hear the deidentified families’ stories, understand their experience, and implement process and practice enhancements. Objective: This study collected family stories following treatment for childhood cancer at the tertiary center in Queensland, with the goal of raising awareness and improving family experience. Method: Twenty-five families were interviewed via an interview spine which covered the major stages of cancer treatment and themes were extracted. Results: Major themes were psychological support needs, adapting to the new normal, and rebuilding relationships. After treatment, the parent had time to reflect on their experience and lost the reassurance of regularly attending the tertiary hospital. There was ongoing anxiety regarding relapse. Parents reported various coping strategies and some wanted to maintain contact with other oncology families. Families strived to get back to a level of normality such as attending school and experienced some challenges in relationships with family and friends. Conclusion: Families needed support and reassurance from their local health professionals to navigate the ongoing challenges following treatment.

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“It's Not Humanly Possible to Do Everything”: Perspectives on Intervention Decision-Making Processes of Parents of Children with Autism Spectrum Disorders

Perspectives on Language Learning and Education ◽

10.1044/lle22.1.13 ◽

2015 ◽

Vol 22 (1) ◽

pp. 13-21 ◽

Cited By ~ 5

Author(s):

Erinn Finke ◽

Kathryn Drager ◽

Elizabeth C. Serpentine

Keyword(s):

Decision Making ◽

Individualized Education Program ◽

Children With Autism ◽

Autism Spectrum ◽

Sources Of Information ◽

Individual Decision ◽

Decision Making Processes ◽

Spectrum Disorders ◽

Interview Methodology ◽

Communication Interventions

Purpose The purpose of this investigation was to understand the decision-making processes used by parents of children with autism spectrum disorder (ASD) related to communication-based interventions. Method Qualitative interview methodology was used. Data were gathered through interviews. Each parent had a child with ASD who was at least four-years-old; lived with their child with ASD; had a child with ASD without functional speech for communication; and used at least two different communication interventions. Results Parents considered several sources of information for learning about interventions and provided various reasons to initiate and discontinue a communication intervention. Parents also discussed challenges introduced once opinions of the school individualized education program (IEP) team had to be considered. Conclusions Parents of children with ASD primarily use individual decision-making processes to select interventions. This discrepancy speaks to the need for parents and professionals to share a common “language” about interventions and the decision-making process.

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