Information for Families - Jack and Jill Foundation
This brochure contains useful information for all Jack & Jill families such as their role within the Foundation, liaison nurses, Respite Care, referral pathway, entitlements, education and much more.
Link to Download: Information for Families
Family Handbook - LauraLynn
The handbook contains summary information relating to the most common questions posed by families and we hope that this will act as a reference guide to you and answer any questions you may have.
Link to Download: Family Handbook
Parenting Positively: Coping with Death - Barnados/Family Support Agency
This booklet is for parents or carers of children between the ages of 6 and 12. It aims to give some explanation of how children at various stages of development understand death and will help those who are faced with the difficult task of talking to children about death and dying.
Death is an inevitable part of life and grief is a universal human process. We cannot shield children from the reality of death or the pain of loss. What we can do is help them to understand and grieve, and so equip them to be better able to cope
Link to Download:
- Parenting Positively - Coping with Death for Parents
- Parenting Positively - Coping with Death for Teenagers
- Parenting Positively - Coping with Death for Children
Experts agree that one of the most positive things you can do during your child’s life is focus on making memories. Having those wonderful shared experiences you have enjoyed with your child will not only help you to remember your time with your child but can act as bonding experience for the whole family in the present as well as the future.
“Making Memories” is a document created by Sharon Thompson, mother to Victoria Thompson, with advice from The Mothers of The Extra Special Kids Ireland Facebook page. The document details how and Sharon and other mothers have approached creating their own memory boxes.
Download: Making Memories
Things We Wish We Knew
This documented was written by Sharon Thompson and draws upon her's and her husbands experiences during the life of their daughter, Victoria Thompson. It takes a retrospective look at the time they spent in palliative care with their child and lists things they wish they knew from the very start.
Link to download: Things We Wish We Knew
A Parent’s Guide – Making Critical Care Choices for your Child
The document is written in a simple question and answer style format, and includes some of the key questions or concerns regarding critical care.
Link to Download: A Parent’s Guide – Making Critical Care Choices for your Child
Parenting a Child with a Life-Limiting Illness
Learning that a child has a life-limiting illness can be devastating. After learning the typical prognosis for the disease, it is not unusual to worry about the future and anticipate what’s to come. But with a slowly regressing illness, there is a lot of time to understand what you will need medically and emotionally. There will be time to connect with others and gain support; there will be time to explore treatment methods.
Link to Download: Toolkit: Parenting a Child with a Life-Limiting Illness
What happens if...?
Planning ahead for the needs of children and young people with life-limiting or life-threatening conditions - NHS South Central
This leaflet is for families who have a child or young person with a life-limiting condition. It provides information about an Advance Care Plan – what it is, how it is created and what it means for the
child. There is a separate leaflet for young people to read.
Link to download: What happens if...?
This Family Companion 2014
This Family Companion is designed especially for parents/carers and family members of children and young people who have been diagnosed with a life-limiting or life-threatening condition.
At a time when things can seem overwhelming, this Companion acts as a step by step guide through the complex and often confusing processes that take place following diagnosis.
It is designed to help parents think important things through, as well as provide information about what can be expected – explaining what should happen, why it should happen as well as making it clear what support should be made available, and where that support can be found.
Link to Download: A Family Companion 2014
Pediatric Starter Kit - The Conversation Project
The Pediatric Starter Kit offers advice and provides stories from parents and palliative care specialists who have been there. It provides questions that can help parents navigate the approach to the conversation based on the personality and cognitive level of the child.
Link to Download: Pediatric Starter Kit
Spiritual, religious and cultural wishes
Spiritual, religious and cultural wishes explains how spirituality, religion and cultural backgrounds can play a big part in shaping families’ wishes, and aims to give parents the confidence to ask professionals to care for their child in accordance with their values or beliefs, whatever they may be. It also explains the role of the chaplain or spiritual care team and emphasises that they are there to help everyone, regardless of faith.
Link to Download: Spiritual, religious and cultural wishes