Final draft ICBN Pyramid of bereavement care document – September 2014
FINAL DRAFT
‘The Irish Childhood Bereavement Care Pyramid: a guide to support for bereaved children and young people’
September 2014
Acknowledgements
Parents and professionals who gave feedback on earlier models
ICBN framework subcommittee: Anne Marie Jones, Children’s University Hospital Temple Street (CHAIR) Ann D’Arcy, Our Lady’s Hospice and Care Services; Celine Deane, Beaumont Hospital; Orla Keegan, Irish Hospice Foundation ; Anne Staunton, Rainbows Ireland.
ICBN advisory board; Brid Carroll; Nuala Harmey; Gina Cantillion; Pat McCarthy; Estelle McGinley; Deirdre Roche, Sharon Vard
Nicola Jordan, ICBN Coordinator
Alison Penney, Childhood Bereavement Network (UK)
Marian Picard; Graphic designer
Citation: Irish Childhood Bereavement Network (2014) ‘The Irish Childhood Bereavement Care Pyramid : a guide to support for bereaved children and young people’ ICBN, Dublin
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
To view a copy of this license, visit http://creativecommons.org/licenses/by-nc-nd/4.0/ or send a letter to Creative Commons, 444 Castro Street, Suite 900, Mountain View, California, 94041, USA.
Date for revision: October 2015
IRISH CHILDHOOD BEREAVEMENT CARE PYRAMID
The Irish Childhood Bereavement Network (“ICBN”) has created the Irish Childhood Bereavement Care Pyramid as a quick reference guide for those who are concerned with identifying the needs of a child or young person who is bereaved. This document has been developed to explain the content of the pyramid and to elaborate and provide broad guidance to those concerned about children in their grieving processes.
The Pyramid explores three different facets of concern to adults when supporting a bereaved child. It looks at
a) The child’s needs which are explored in detail in Section 1 of this document;
b) The supports and services that are appropriate to address these needs (Section 2); and
c) The knowledge and competencies required by those individuals who set out to provide information, support, counselling and psychotherapy to children and young people who experience bereavement (Section 3).
In exploring the different level of need exhibited by children who are bereaved, the Pyramid divides these needs into those that apply to most children (Level 1), those that apply to some children (Level 2 and 3) and those that apply to few children (Level 4). The Pyramid recognises the essential role of families and communities in supporting bereaved children and sees the family (in most situations) as the primary source of support for a child in this circumstance. It emphasises the impact of time on the bereavement processes for any child as well as the need to recognise the impact of their developmental stage.
This document is intended for use by parents, teachers, health professionals, or any adult in contact with bereaved children and/or young people.
It should be noted that, in this document the term child, children or childhood is used to refer to children and young people 18 years and under.
The document content draws from the research and policy literature detailed in in the bibliography. The pyramid of bereavement care builds on other models of support in bereavement and general wellbeing as detailed in Appendix Two.
Section 1 The needs and responses of bereaved children and young people
Introduction: The first aspect of the Childhood Bereavement Care Pyramid helps to identify the needs and varying responses of children who are bereaved. The needs of children and young people have social, cognitive, emotional, physical and spiritual dimensions. A bereavement or significant loss adds to these on-going needs and results in children and young people having to develop new and different coping strategies. As well as needing help and support around the time of bereavement, children may need to revisit their bereavement and “re-negotiate” their loss in the context of their changing cognitive abilities. Children, by their very nature, have evolving needs as they move through developmental stages. These evolving needs are reflected in their bereavement journey over time.
In the main, children adjust to the bereavements that they experience in life within the context of their family and community, but a good understanding of their needs and reactions is essential to their support. Those who care for them need to understand and respond to ‘normal’ grief in order to identify the possibility of situations where children develop maladaptive behaviours.
a. Grief Reactions: Following a death, children can experience various grief reactions –
Emotional responses may include – fear, anxiety, confusion, anger, sadness, relief, loneliness, guilt, isolation;
Physical responses may include – low energy, interrupted sleep/eating patterns, unexplained aches, pains;
Behavioural responses may include – lack of concentration, memory loss, ‘acting out’, aggression, irritability or regression to behaviour more commonly associated with a younger age eg. bed wetting, sucking thumb etc;
Social responses may include – loss of self-esteem and confidence, withdrawal from friends and activities – including school attendance.
Children may exhibit none, some or many of these responses. All bereaved children and young people have the need for information, explanation and reassurance (Level 1). Depending on their personalities, the circumstances of the death, family functioning and a child’s stage of development, there may be additional needs. These include a need for help with normalising the experience (Level 2); a need for extra help with feelings or behaviours that are disrupting day to day life (Level 3) or for a very small number, needs which include addressing suicidal thoughts/behaviour and other clinical issues (Level 4).
Another key factor to keep in mind is the resilience of the bereaved child. Resilience refers to the child’s approach to control in their lives and their sense of hope about the future. Those with a strong sense of resilience believe that they can control their fates by their own actions. Research has shown that bereaved children may have a stronger belief that their lives are controlled by external factors and therefore developing the skills and coping strategies they need to deal with their bereavement may be more of a challenge. It can be helpful if bereavement support promotes that sense of resilience or mastery in the child.
b. Other influencing factors: Some children may develop bereavement responses that cannot be met by Level 1 support and will require additional support. This will be influenced by key factors which can include:
· Reaction and coping style of parent/parents and other family members- a family that is coping well will be a better support for a child;
· The beliefs exhibited by parents or others about grieving e.g. silence –“we don’t talk about our loss” or exclusion – “children don’t need to be included in rituals etc.”;
· Child’s Developmental Age – as children grow and develop their grieving may change;
· Child’s Relationship to the deceased – loss of someone close and familiar impacts on all parts of life and routine and may hurt more;
· Circumstances of the death- sudden, traumatic deaths can be more difficult to process but this is not always the case and can be influenced by on the developmental stage of the child and the reaction of the adults around them;
· Effect on the family unit – need to move house, change school, lose friends and less resources can be very difficult ;
· Culture/belief systems – this can be different for every child;
· Child’s understanding of death – this will be determined by age and a family’s openness in communication;
· Level of self-esteem/self-worth – some children have greater resilience than others.
Bereavement responses should be contextualised in relation to the factors leading up to the death, the family circumstance and other day-to-day aspects of the child’s life. Interventions at Level 2 or 3 may be considered for a child where some of the key factors identified above exist and where they are exhibiting some of the reactions identified earlier.
c. When grief reactions are more severe: Studies show that while symptoms such as separation distress, depression, anxiety, behavioural issues and social withdrawal are, to some degree, aspects of the usual response to bereavement in childhood, these do not necessarily lead to psychological or pathological problems. The bereavement itself does not significantly increase the risk for psychiatric disorder in children. However, research has found that there are particular circumstances where the usual resources of chid/family are overwhelmed. In these situations, the child or family struggle to deal adequately with the demands created by the death and its aftermath. This is particularly relevant in cases of suicide and traumatic death.
In the following scenarios, research has shown that some bereaved children may require extra support:
- parental death following divorce/separation or parental mental illness;
- death from inherited and transmitted conditions;
- difference (e.g.; living in a different cultural context);
- pre-existing mental health issues;
- children with special needs.
These children may need the support of a specialist service providing Level 3 or 4 bereavement supports.
Figure One: Bereaved Children’s Needs – from general (level 1) to complex (level 4)
Level / NeedLevel 1 – Need for Explanation and Reassurance / Need support from family, extended family, from friends - much of children’s understanding of the world comes through family & significant adults in their lives
Need their families to have key information and resources in order to support with understanding
Need age appropriate information in clear and concrete/concise language
Need to have their thoughts, feelings and opinions listened to and acknowledged
Need to know that it is okay not to be sad all of the time, children dip in and out of sadness
Need to control some parts of their lives; have routines and predictability
Need close relationships and reassurance
Level 2 – Need to Normalise and Enhance Coping / Need to feel less isolated and to meet others in similar situations
Need to develop coping strategies and acknowledge feelings
Need to build new explanations as they develop emotionally, cognitively & socially over time; revisiting what the loss means
Need to have their thoughts, feelings and opinions listened to and acknowledged in a more formal setting and outside of the family
Children need to develop a story of their changing life
Level 3 – Additional Needs / Help with grief reactions that are interfering with day to day engagement – marked changed behaviour /personality - anxiety, withdrawal, isolation, aggression, anger.
Help with deaths which may be surrounded by secrecy or stigma
Help to cope conflicting emotions, with guilt, confusion, blame and relief
Extra help, for themselves & for families, to understand emotional and behavioural experiences of children with learning difficulties who are bereaved.
Level 4 - Complex Needs / Help with grief reactions and responses that are presenting as acute and require an immediate professional intervention – self harm, suicidal ideation, depression
Help with pre-existing mental health issues such as anxiety/ depression
Help with – persistent distress & preoccupation with circumstances of death
Section 2 Bereavement Support for children and young people
Introduction: This second aspect of the pyramid of bereavement care aims to inform and signpost practitioners to the various levels of support, types of care and interventions required.
The majority of children can be supported successfully within the family system. While ‘generic’ responses and needs are detailed below, the unique context of the particular child must be the central filter when considering a response.
Level 1 – Information and Guidance: This level of support is aimed at giving parents, families and others the knowledge and skills to support children following a death. It
· Provides children with choice with regards to viewing a body and inclusion in the funeral rituals;
· Gives age appropriate, honest information in clear concrete language;
· Recommends routines should be maintained – when a death occurs the family’s world can become chaotic. Keeping routines creates security for a child;
· Offers reassurance –children worry that a remaining parent/family members can also die children can often think they are to blame for a death. They need to know that the pain will ease with time and talking can help
· Helps children understand that it is okay not to be sad all of the time – childrens’ grief is intermittent and intense but not always continuous like adults;
· Allows children to have their thoughts , feelings and opinions heard at the time of the death and in the aftermath;
· Acknowledges children’s loss and gives them opportunities to talk and to remember.
This level of support provides information and guidance to parents, teachers and other key adults in a child’s life prior to, at the time of the death, and in the aftermath of a death over time. This information can be accessed on the Irish Childhood Bereavement Network’s website (www.childhoodbereavement.ie) and includes leaflets, booklets, websites, and help lines available in local communities and support services.
Level 2 – Organised Bereavement Support: Support services and types of care at Level 2 cater for children who need some extra support to make sense of the world after their loss. It can provide an opportunity to:
· normalise the grief process;
· allow children to meet others in the same situation which can ease the feeling of isolation that many children feel;
· develop coping strategies;
· understand and acknowledge feelings.
This type of support and care is generally provided in health care settings and /or community based voluntary groups through the use of individual and group interventions.
Level 3 – Professional Counselling: If a child requires level three supports, it is likely that the child or young person will be exhibiting symptoms already outlined but over a prolonged period of time and impacting on their day to day functioning. Examples of this could include: regularly not wanting to go to school; anxiety when separated from significant adult; and on-going difficulties eating and sleeping.
These symptoms may be exacerbated by circumstances that have occurred in the child’s life prior to the death or events that are happening within the family or child’s social network. Examples of the type of circumstances to be aware of are:
a. Complex family history including; multiple deaths, history of violence, addiction, on-going stressors, adults unavailable to offer emotional support to child because they are overwhelmed with their own grief. Issues such as these may need to be addressed along with bereavement issues so would require more intensive psychotherapy.