Introduction of the Parent Supporter Role

General Principles

Regardless of role or situation, the most basic principle is the importance of listening to what individual people say they want rather than presuming what they need. Families say they want: information, choices, control and permission to grieve.

Being There Is More Important Than What You Do; Listening Is More Important Than Talking

There is often a pressure to know the right things to say, and a fear of saying the wrong things. We can end up feeling so anxious that we cannot listen! Be assured that simply by being in attendance or by making your visit you are doing something useful. If you are offering emotional support by listening as well, then you are doing a great deal. You are conveying the messages that the family is not carrying a social disease and that you are not afraid of their pain. You are still going to feel pretty helpless, but it is important to recognise that as a feature of bereavement support, and not to let the feelings of helplessness prevent your making contact.

Be Clear About Your Involvement

First, you need to be clear about your role and what support you are offering. This should then be made clear to the bereaved person, even if your …title (i.e. Peer/Parent Supporter) appears to make it obvious. … It is good practise to leave behind some written confirmation of who you are and where you can be contacted.

These may well be routine procedures, but they take on added importance in bereavement when people commonly feel impotent and confused. The newly bereaved may be particularly vulnerable to people who are keen to peddle their own belief systems. Remember, too, that many bereaved parents lose faith in any justice in the world and are sensitive to further disappointment. The helper therefore needs to be scrupulous about keeping appointments, keeping time and promising only what is realistic in terms of further support.

The issue of confidentiality also needs to be considered carefully. Reassurance should be given that private information will be treated sensitively, and that any information shared is strictly in the interests of the bereaved person.

Use The Child’s Name

This means so much to parents, for the name keeps alive the memory of this child. It is an acknowledgement that the child really existed at a time when it is difficult for parents to separate reality from fantasy. Saying the name also means that you are interested in the child, whether or not you knew him/her, and that you recognise the meaning of the child’s absence. It can be tempting to tiptoe round the child, in the mistaken belief that mentioning them will upset the parent. A moment’s reflection is sufficient to realise that the grief for the child is ever-present, that being ‘upset’ is entirely appropriate and that it is our own fear of painful feelings getting in the way. Asking about the child, looking at photographs and mementoes are ways of paying respect to child and parent, and help to facilitate expression of grief.

Avoid Platitudes and Euphemisms

Having respect for another person, regardless of age, race and social background, is one of the core conditions for a helping relationship. Respect can be shown for the other person’s feelings, thoughts and beliefs, whether or not one agrees with them. Lack of respect is shown in patronising comments, discounting remarks, moralising and platitudes.

A platitude is defined as ‘an empty remark made as if it were important’. To apply well-worn phrases which so easily miss the mark is insulting. Using any phrase which begins ‘At least ……..’ only serves to undermine the bereaved person’s suffering. Sadly parents hear them all too often: ‘At least you have two other healthy children’ or ‘At least you are young enough to have another child.’

A euphemism is a device for describing something unpleasant in milder terms in an attempt to avoid the unpleasantness. Death is riddled with euphemisms such as ‘We’ve lost him’ and ‘She passed away’. Euphemisms should not be used because they can cause misunderstanding and because they avoid reality. There is no way of dressing up the harsh fact of death.

Each Bereavement Is Unique

First, it helps to remember that each child is a unique individual. Even a premature baby will have unique characteristics. All the particular features of the child need to be mourned and as the child is often idealised by the parents, which is not to deny the special courage of many terminally ill children, you may be able to help them grieve for the whole child, warts and all.

Second, it is important to recognise each bereaved person as an individual and to allow them the uniqueness of their own loss without constant comparisons with others’ experiences or, worse still, your own. This denies the bereaved person the opportunity to be seen and accepted for themself. Out of this attention to the individual comes the ability to see more clearly the world through their eyes. Empathy is another of the core conditions, which encourage trust in a helping relationship.

People come before theory. An understanding of patterns and common features is valuable: it serves to reassure you, and shared experience is comforting for the bereaved. But you can never presume to know how it is, so avoid saying, ‘I know how you feel’.

It is also useful to remember that everything has to be done again by the parents and family for the first time after the child’s death – the first meal, the first visit to a supermarket, the first Christmas, the first holiday.

Seeing Is Believing

It is difficult to accept the reality of death, and more so if a healthy child dies suddenly. Those who grieve a personal loss need to see some evidence to connect what they understand in their heads with what they know in their hearts. Parents want to say goodbye and feel physically close in death. Parents have the right to see their dead child, however shocking or distressing that may be. They need preparation more than protection. Your patient understanding may be required in helping them consider the pros and cons, with time to make an informed choice.

The same general principle applies to whether siblings should be encouraged or discouraged to see the dead child. Children are often resentful later if they were not given the choice. Very often, children are protected from knowing the full extent of the last illness and from seeing the dying child in the last hours. Even children of a very young age benefit from being included in the reality of the situation. These sensitive issues are for the parents to resolve, but they may ask for your help in thinking them through.

Fantasy Is Worse Than Reality

Knowledge is power, and having information gives one a greater sense of control in any situation. When parental responsibility is involved, the need for information is paramount. The paternalism of the medical profession is thankfully giving way to an understanding of how important it is to keep parents fully involved and consulted. As well as being ethically correct, this enables parents to work through their reactions to the death. What is not known will be imagined and almost invariably the fantasy turns out to be worse than the reality. Younger children have the doubtful advantage of literal imagination, which can be very confusing and worrying for them if they hear only half a story and if questions are not answered honestly.

Involve All the Family

At the time of the death the mother is often protected from harsh realities, but afterwards she tends to be the focus of attention: ask directly after the welfare of the father and other children too. If your advice and help are sought in the practical arrangements for the funeral and other rituals, remember the benefits if all the family can be involved. Parents, children and grandparents are much more likely to be able to support each other in their grief later if they have felt included in decisions about the form of service, the wording on a wreath or headstone and what happens to the child’s possessions.

There Are No Experts

Of course there are those who have more experience of dealing with child death and bereaved families and those whose training equips them for special tasks. But in most situations the person best qualified to offer support is someone who is already known and trusted by the family. Bereavement work makes everyone feel inadequate and it is tempting to look around for an ‘expert’ who can do a better job. The only experts on this unique experience are the family. Being supportive is much more about being there, rather than doing something. You will, however, need support and supervision for a variety of reasons.

You Will Need Support

Feelings of helplessness are common in this type of support work and these feelings need to be expressed without fear of being judged as inadequate. Sensitive support of bereaved families is stressful and requires recognition of the demands being made of you. You may find yourself affected on several levels: by the family’s grief, by memories of your own losses, by fears of the future, by anger and frustration at feeling so powerless to help. It is important that you off-load or debrief with the SIDS and Kids or Hope Bereavement Care counsellor whenever necessary.

The learning points from these general principles are now summarised and offered as a check against your own experience:

• Show your concern by being there for the family;

• Listen more than you talk;

• Be clear about what you are offering;

• Be courteous and considerate;

• Use the child’s name;

• Encourage the family to talk about the child;

• Avoid meaningless platitudes;

• Respect the uniqueness of the family’s experience;

• Enable the family to make informed choices;

• Pay attention to brothers and sisters;

• Encourage the family to share decisions;

• Do not underestimate the value of your support;

• Get support for yourself.

Skills

The two foundation skills required for bereavement support are basic to all effective communication: attending and listening. They are, of course, interrelated.

Attending

Paying attention means being alert to someone and being interested in what they have to say, which communicates the message that they are of value. That in itself encourages trust and free expression and has a healing effect. Attending means suspending one’s own concerns and prejudices and being in a state of ‘not knowing’. As well as conveying respect, attending also enables the listener to observe the whole person as communicated by body language and non-verbal behaviour. Good attention is demonstrated by:

• Setting the scene: even before the communication starts, the way in which a person is greeted conveys respect;

• Making eye-contact is crucial; facial expressions, nods and grunts also provide physical evidence of being attended to;

• Removing barriers such as desks, equipment and papers and sitting at the same level and

• Avoiding distracters such as bleeps and telephones.

Listening

Listening is a complex activity. It includes:

• Giving attention;

• Receiving information;

• Taking in the thoughts and feelings conveyed;

• Interpreting behaviour;

• Noticing key points and themes;

• Checking that you have heard and understood correctly.

The focus remains on the speaker when the listener reflects back what has been heard. Restatements, paraphrasing and summarising the messages received form an important part of the process for several reasons:

• The speaker is assured of your understanding;

• If you have got it wrong, the speaker can correct you;

• The speaker can hear the effect of what they are saying.

Listening involves considerable self-discipline. It means suspending your own assumptions, judgements, advice and solutions. It may also mean tolerating silence, allowing the speaker time and space to gather thoughts and give expression to feelings.

Active Listening

While active listening forms the cornerstone of bereavement support, to facilitate the expression of the disordered thoughts and feelings of grief, other approaches may be required for ongoing support. More directive strategies may also be indicated when the bereaved person finds it difficult to talk, or when uncompleted mourning tasks have been identified.

Prompts

Some people welcome invitations to talk about their loved one, particularly if they have been discouraged from doing so by others. Open questions about the child might be:

‘Can you tell me more about?’

‘What sort of child was he/she?’

‘What are your special memories?’

Photographs and mementoes provide a fund of recollections and a genuine interest in sharing them encourages warmth and trust.

Rituals

Bereavement is made up of many little good-byes and it may be appropriate to construct together some private rituals to help the bereaved deal with difficult memories. For instance, a parent at the Alder Centre requested help with revisiting the road junction where her daughter had been killed years previously. Another parent helped her child grieve for a friend, whose funeral they had been unable to attend, by releasing helium balloons with goodbye messages on them.

Writing

For many parents and siblings, writing becomes an important (healing) tool. When such writing can be shared, it is a powerful communicator of inner feelings. For those who are anguished by things left unsaid to the child, the device of writing a letter, addressed as it were to the child, can be liberating.

Alternatively, an audio tape could be made, with messages interspersed with favourite music.

Scrapbooks

Photographs, keepsakes, written memories, pictures of favourite TV shows can all contribute to an album of memories.

Last reviewed: 17/4/24