The impact on families when a child has a rare genetic diagnosis

• Research type

  Research Study

• Full title

  The impact on family functioning, parenting and parent-child relationships when a child is given a diagnosis of a rare genetic condition.

• IRAS ID

  172999

• Contact name

  Joanne Harris

• Sponsor organisation

  Teesside University

• Duration of Study in the UK

  1 years, 0 months, 1 days

• Research summary

  This study aims to qualitatively explore the factors that may impact family functioning, parenting and the parent-child relationship when a child has received a rare genetic diagnosis. Parents of children aged 11 or younger that have received a rare genetic diagnosis within the last 3-11 months will be invited to participate.

  The study will use a Grounded Theory (GT) approach. The initial research question and aims are intentionally broad to allow for the exploration of this novel area. The GT approach allows themes to directly emerge from the data with limited bias from existing literature and theories and the researcher's preconceived ideas. The data dictates the direction of the study and the relevant concepts systematically refine the initial research question. Systematic data collection and analysis identifies, develops and provisionally verifies concepts to form an explanatory theory.

  Questionnaires will initially offer a cursory perspective of the concepts and inform the first interview schedule, as well as supporting further data collection and concept discovery. Intensive semi-structured interviews will provide the majority of data. Data collection and analysis will run simultaneously, using the GT approach until theoretical saturation has been reached. This is where novel concepts no longer arise from the data (Corbin & Strauss, 1990).

  An explanatory model will contribute to the very limited literature of understanding the impact upon families and inform development of the regional genetics service. The GT approach will identify the causal factors that impact the families within the sample and provide direction for future research.

• REC name

  North East - Newcastle & North Tyneside 1 Research Ethics Committee

• REC reference

  15/NE/0180

• Date of REC Opinion

  22 Jul 2015

• REC opinion

  Further Information Favourable Opinion