Spiritual & emotional needs of siblings of a child with a rare disease

• Research type

  Research Study

• Full title

  What are the spiritual and emotional needs of siblings of children and young people who have a rare disease with complex care needs? What are the resourcing implications of these needs for the support of siblings?

• IRAS ID

  213307

• Contact name

  Sally Nash

• Contact email

  sallynash1@nhs.net

• Sponsor organisation

  Birmingham Children's Hospital NHS Foundation Trust

• Duration of Study in the UK

  0 years, 8 months, 27 days

• Research summary

  This is a qualitative study which aims to find out what the spiritual and emotional needs are of children and young adults aged between 8 and 18 who have one or more siblings under 16 with a chronic rare disease. The methods used will be a questionnaire, an interview and focus groups.
  We use the following concepts for spirituality for this project and all related documents:
  “… spiritual needs may relate to issues of love, hope, security,...lack of control, friendship, sexuality, appearance, feelings of fear, vulnerability, anxiety, not feeling protected and questions of faith and life… spiritual care concerns itself with the big questions of life involving who someone is, their purpose, their destiny, their identity,... potentially a relationship with the transcendent” and meaning making. (Nash, P., Nash, S. and Frith, C (2011) Perspectives on spirituality and sick children and young people in a multicultural paediatric hospital context- identifying and responding to spiritual needs. Conference paper: http://www.inter-disciplinary.net/wp-content/uploads/2011/02/nashspaper.pdf)

  NICE defines emotional wellbeing as including "being happy and self-confident and not anxious and depressed"(https://www.nice.org.uk/advice/lgb12/chapter/introduction). Following on from this an emotional need is something which detracts from emotional wellbeing and includes issues in relationships with self, others, and the community.

• REC name

  West Midlands - Black Country Research Ethics Committee

• REC reference

  17/WM/0038

• Date of REC Opinion

  17 Feb 2017

• REC opinion

  Further Information Favourable Opinion