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The Challenge of evaluating a child bereavement programme

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The Challenge of evaluating a child bereavement programme

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Developing services for bereaved children: a discussion of the theoretical and

    practical issues involved

     112JULIE STOKES, JODI PENNINGTON, BARBARA MONROE, DANAI 34PAPADATOU & MARILYN RELF 12Gloucestershire Royal Hospital, Gloucester; St Christopher‟s Hospice, London, 34United Kingdom; University of Athens, Greece; Sir Michael Sobell House, Oxford,

    United Kingdom.

    ABSTRACT The purpose of this paper is to address some important issues that relate to the development of bereavement services for children and the resources

    and skills needed to provide these services. The impetus for this paper came from a

    consensus session entitled ‘Bereaved Children: theoretical perspectives on service thdevelopment’, organized by the Bereavement Research Forum for the 5 Congress

    of the European Association for Palliative Care in London, September 1997. This

    session moved the debate from identifying the needs of bereaved children to looking

    at the development of appropriate services. The theoretical, contextual and external

    factors which shape and focus services were discussed at the session and the

    themes have been developed and presented in this paper. Services for bereaved

    children are beginning to develop in the UK, with minimal national debate and no

    agreed standards or guidelines. Using the ‘needs’ of bereaved children identified from existing services (information, companionship, emotional expression and

    opportunities to remember), this paper discusses issues such as models of care, the

    skills required for work with bereaved children, who should provide services and how

    they may be funded.

How do we respond to bereaved children?

Across Europe and particularly in the UK, the past decade has seen a growing

    professional and public interest in the needs of bereaved children and young people.

    In some palliative care and hospice environments, the experience of working with

    families where a death is expected has led to the development of skills and

    resources to meet some of these needs (Couldrick, 1993; Monroe, 1995, 1998;

    Stokes, 1998). However, each year many children are also bereaved following a

    sudden death. For these children, there is often little or no support. Only a handful

    of systematically organized community services offering support to all bereaved

    children, young people and their families has been established.

Their existence has stimulated an important debate about the development of future

    services.

While there is evidence that children who experience the death of a parent are at

    increased risk of developing psychiatric problems (Weller et al., 1991; Black & Young,

    1995), most children‟s services currently available concentrate on children when grief

    has become complicated. In the UK, a bereaved child showing signs of disturbed

    behaviour, anxiety, depression or school refusal is usually referred to a Child and

    Adolescent Mental Health Team. Unless particularly acute, these referrals cannot be

    given high priority and a lack of resources can result in waiting lists in excess of six

    months. A community-based service for bereaved children can offer support to a

    larger number of children and may also help to reduce pressure on existing children‟s

    services.

    Correspondence to: Julie Stokes, Consultant Clinical Psychologist, Winston’s Wish, Gloucestershire Royal

    Hospital, Great Western Road, Gloucester, GL1 3NN. Tel/Fax 01452 394377; email:

    info@winstonswish.org.uk

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    Case Study illustrating the difficulty accessing services for children following a bereavement

Michael (aged 12) walked into his home after school to discover the body of his

    father, who had hanged himself. Following problems both at home and at school,

    Michael’s mum had sought help for her son for nearly a year without success –

    including being on the waiting list for a specialist at the Child Mental Health service.

    It was by accident that she finally got in touch with a local hospice social work

    department. Michael was offered six individual sessions, with his mum present some

    of the time. This resulted in a return to regular school attendance and socializing

    with friends. Michael said that he felt better and his mum reported that he displayed

    greater self-confidence. The aim of the sessions was to give Michael an opportunity

    to ask difficult questions relating to his father's suicide, such as ‘What is depression?’ ‘Does it hurt when you die by hanging?’ ‘Was it because Dad didn’t love me

    anymore?’ Michael and his mum were able to discuss their memories of Dad.

    Michael said the sessions also helped him to feel closer to ‘Dad’, rather than only

    remembering him as ‘a man who committed suicide’.

The concept of routinely providing services for all bereaved children and young

    people however, has produced differing opinions about the validity and efficacy of

    such services. Concerns from both ends of the debate have been neatly

    summarized recently in the British Medical Journal. While some professionals

    recognize that “we cannot afford to ignore the needs of bereaved children [when]

    interventions exist that can alleviate the immediate distress of childhood

    bereavement” (Black, 1996), others argue that the needs of this group can only be

    met at the expense of others:

     most bereaved children rely on family and personal resources to deal with their

    loss and do not require professional help…..it is difficult to justify diverting scare

    resources from the treatment of children with established mental disorders to

    provide counselling for children at risk. (Harrington, 1996)

It is important to acknowledge that professional support or „therapy‟ may not be

    routinely appropriate for all bereaved children and young people. This does not

    mean, however, that no level of support can be offered at all. Despite recent criticism

    of service provision for bereaved children, [1] professionals working directly with

    bereaved families suggest that the belief that most children will be well supported by

    family and friends is over-optimistic. Adults are often too concerned that they will say

    or do the wrong thing and want to believe that their children are coping „just fine‟

    (Stokes et al., 1997). They want to protect children from painful experiences, but in

    doing so often leave them confused and alone with their fears and fantasies (Monroe,

    1995; Thomson, 1995). Moreover, parents may be struggling with their own grief, as

    well as trying to understand their child‟s. Children can also try to „protect‟ those

    around them and a third party can be useful in encouraging conversations that may

    otherwise go unvoiced.

Case Study illustrating mutual protection between parents and child

Simone (age 4) and her mum enjoyed a close relationship. Simone was told about

    the still-birth of her brother, Jacob, and appeared to be ‘doing fine’. After a few

    months, a referral was made to a service working with bereaved children because

    Simone was blaming her mum for things and insisted that Jacob still visited her each

    night. Whilst alone during an assessment Simone was able to articulate her thoughts

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    and feelings about Jacob’s death, although later (in the presence of mum), she became fidgety and unable to talk openly).

While mum acknowledged being tearful when talking about Jacob, she felt that she

    encouraged conversations and was struggling to understand the change in her

    daughter’s usually ‘grown up’ manner. Simone used four sessions to explore her

    understanding of what ‘dead’ means, her feelings about Jacob and the loss of an

    expected ‘big sister’ role. Using practical activities, both mum and Simone found

    positive ways to share their ideas and thoughts about Jacob, as well as to express

    difficult feelings such as ‘angry’ and ‘sad’ in front of one another. Although Simone

    displayed no signs of being ‘at risk’ following Jacob’s death, both her mum and

    school teacher reported a significant improvement in their relationship with Simone.

There is no national collection of statistical information for the number of children and

    young people bereaved in the UK. It is therefore difficult to estimate the percentage

    of those who seek professional help, either directly after the death or in response to

    later problems. This lack of information must also say something about the way in

    which our society views childhood bereavement and the significance we attach to it.

    Despite this, professionals currently working with bereaved children and their families

    report an increasing number of requests for help not only from their locality but

    across the UK and Europe. During the development of The Candle Project [2] at St

    Christopher‟s Hospice in London, an unadvertised telephone service experienced a growing number of unsolicited calls, both from families and professionals, requesting

    advice about anticipated or actual bereavements. This suggests that existing

    services are seeing the tip of an iceberg regarding an unmet need for basic advice,

    support and resources. A lack of known sources results in a difficulty accessing

    information, a „lucky dip‟ in terms of locating services that can provide support.

Different ways of developing services for bereaved children

The Harvard Child Bereavement Study (Silverman & Worden, 1992, 1993), is one of

    the few studies of a normative population of bereaved children. The two-year study

    follows a non-clinical community sample of 125 children following a parental

    bereavement, compared with a control group of non-bereaved children. Researchers

    interviewed both the surviving parent and the children. Although it is acknowledged

    that more longitudinal studies are needed, the findings of this study have important

    implications for service development. Worden (1997) later uses them to identify

    three key models for children‟s services (see Fig. 1).

Given a lack of resources across many services working with children, the routine

    provision offered by a service based on Model „C‟ is often considered too costly. In the development of community bereavement services, targeting those children with

    the greatest need aims to maximize the resources available. Particularly when

    services are stretched to their limits, or potential referrers do not have the skills to

    identify those that require support, priority is often given to the children who are seen

    to be experiencing „problems‟ (Model „A‟). While ensuring support for some children,

    this approach gives a clear message that certain behaviours require intervention.

    However, while some children „act out‟, others do not. Studies interested in

    children‟s pain behaviour suggest that a quiet or playing child is not necessarily a

    pain-free child (Collier, 1997). Behavioural criteria alone may result in some children

    not receiving the support they need.

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    A. To offer intervention only where children display levels of emotional and

    behavioural problems or psychological distress. Worden recognises that such an

    approach requires observable levels of distress and we need to be satisfied in

    two areas: 1. that children not displaying certain behaviour do not require

    intervention and 2. that emotional and behavioural difficulties do not have to

    reach exaggerated levels before intervention is offered.

    B. To offer intervention to those children identified at risk by use of a screening

    measure. The preventative mental health model of early screening aims to target

    potential „at risk‟ groups for early intervention in order to reduce the likelihood of

    long term negative sequelae. If the development of an effective screening

    measure is possible, more longitudinal studies are needed to develop a valid tool

    that is reliable over time and across differing populations.

    C. To offer intervention routinely to all bereaved children and their families,

    recognizing that “the death of a parent is one of the most fundamental losses a

    child can face.” (Worden, 1997: 9). However, Worden reports that only a third of

    the children observed were considered „at risk‟ during the two year study. Since

    it appears that only a significant minority are „at risk‟ and most adjust well,

    Worden questions both the need and cost effectiveness of this approach.

    (Adapted from Worden (1997), pp. 150-151)

    FIGURE 1. Models of intervention for bereaved children

Adopting „Model B‟ in the development of community bereavement services provides

    a response to some of the above concerns. With limited resources, a screening

    measure is preferable to relying solely on the presence of behaviours described in

    „Model A‟. Screening measures developed from longitudinal studies with bereaved

    children (e.g. Worden, 1997) may be used to target those requiring help. However,

    reliance on such a tool also raises a number of potential problems. Clearly, business

    managers will be keen to target resources for those who are most in need, although

    clinicians need to feel comfortable that such a screening tool is totally reliable. A

    survey of risk assessment tools used with adult populations revealed that this is not

    always the case (Payne & Relf, 1994). General concerns about the development of

    a screening measure are validity and efficacy across populations and over time. The

    assumption that a distinct and observable „at risk‟ or „potential for at risk‟ group can

    be identified has implications for the administration of a screening measure. Can

    such a measure be sensitive, yet robust enough to account for the changing needs of

    bereaved children and their parents? Could a screening tool, used at a single point

    in time produce an accurate picture of a family‟s needs? Would the family measured

    to be „coping just fine‟ not be offered any support? If so, this may not necessarily be

    a view that accurately reflects the experience of the family. Furthermore, is there

    sufficient evidence to indicate when such a tool should be used: at one week following a death, one month, six months, a year?

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Using theoretical development to inform service provision

The recently developed Dual Process Model of Loss (Stroebe & Schut, 1995, 1999)

    conceptualizes grief as a dynamic process. This model describes an oscillation

    between focusing upon and avoiding the loss experience, acknowledging that both

    responses can occur alongside one another. This fits with the experiences of both

    bereaved people and professionals (Papadatou, 1999). For example, in a single day

    a parent whose partner has died may engage in a range of restorative activities

    (cooking supper, filling out a job application, picking up children from school). S/he

    may also spend time focusing on the loss (looking at photographs, memories

    sparked by a song on the radio, comforting an upset child at bedtime) and his/her

    emotional state will reflect these different activities.

The Dual Process Model may also be helpful in understanding the protection and

    „balancing‟ that clinicians have observed among family members. A child may

    recognize that a parent is easily upset or anxious when talking about a dead family

    member (focusing upon the loss) and engage in restorative behaviour such as not

    talking about the person who died or behaving in a way that distracts the parent.

    This can be useful and adaptive for the family (distracting and supporting one

    another) or it can lead to problems (misinterpreting behaviour and feelings).

    Developing community-based bereavement services that reflect this dynamic process

    aims to facilitate coping in families and promote understanding of how individual

    family members are grieving. For a screening measure to be useful it must be

    sensitive to such a process.

A community-based support service for all bereaved children

Considering the limitations of Models „A‟ and „B‟ described above, a growing number

    of services advocate the use of Model „C‟ as a basis for service development.[3] As

    such services emerge, it is important to develop an effective network between

    services: for communication, agreement on standards and to provide up to date

    information for the general public and professionals.[4]

A working example of this is Winston‟s Wish,[5] a community-based grief support

    programme for children in Gloucestershire (Stokes & Crossley, 1995; Pennington &

    Stokes, 1998). Since 1992 Winston‟s Wish has been developing a service designed

    to promote the psychological well-being of all children and young people who

    experience the death of a close family member. Around 250 referrals are taken each

    year (based on a health population of 500,000) for children and young people

    between the age of five and 16 coping with either the sudden or expected death of a

    mother, father or sibling. The programme‟s philosophy forms the basis for services

    that have been developed[6] (all or some of which may be provided by a community

    based service):

? a careful assessment of each family‟s needs in their own home;

    ? „Camp Winston‟, a residential weekend for 5-16 year olds;

    ? „Camp Winston‟ for parents; ? a support programme for schools;

    ? individual work when grief is complicated;

    ? residential weekends for those affected by suicide;

    ? social activities to help maintain friendships;

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? information evenings and social events for parents;

    ? telephone advice supported by books and leaflets;

    ? support for children where a close member of the family is dying; ? the positive involvement of children in funerals.

The Winston‟s Wish service acknowledges the particular importance of both involving

    the whole family and providing the opportunity to meet others with similar experiences. This is underpinned by the belief that parental support is an integral part of supporting bereaved children. Such routine services may also have a health-promotional role, preventing problems escalating to a more serious level. Indeed, it is possible that community-based services may serve to relieve the burden on specialist services, such as Child and Adolescent Mental Health. Working in partnership, community-based interventions could act as a screening measure in themselves, a filter for referrals on to specialist mental health services where necessary.

    Interestingly while the Harvard Child Bereavement Study (Silverman & Worden, 1992) reports that self-esteem is not initially affected, at two years following a parental bereavement self-esteem is significantly lower among bereaved children (Worden, 1997). Experience at St Christopher‟s Hospice suggests that relatively short-term

    help can be effective in areas such as children‟s self-esteem and problem behaviours.

    In a short-term consultancy service offered by the hospice, only 10% of accepted referrals needed more support than the maximum six sessions offered.

Case Study illustrating the service that can be offered by a community based

    intervention

    Mathew, age 13, experienced the death of both his younger twin brothers (Joseph and Tim) from a rare form of leukaemia. His parents were divorced and Mathew lived with his dad, who was very protective of him. Mathew was offered six sessions, with his dad joining him for some of the time on three of those occasions. During the sessions both Mathew and his did felt more able to talk about the anger that Mathew was venting on things around the house and about how much this worried his dad. They were able to begin putting together a ‘memory book’ about the twins. Before this time, they had both avoided talking about Joseph and Tim in each other’s company. After completing the sessions, both attended a one day bereavement group and Mathew said it was good to meet other young people of his own age that ‘know how I feel’. Mathew’s dad said he felt less afraid of bringing up the subject of the twins and talking about feelings with Mathew.

    Such interventions could, in principle, improve both access to services and acceptability to the family. With many parents reluctant for their children to acquire a psychiatric record, community-based services may actually have a role in normalizing the experience of bereavement. This may help to avoid stigmatization and counter the view that grief is an „illness‟. Psychiatric interventions often require lengthy and costly professional input that may be targeted at one child in particular (who can sometimes become the focus for negative family attention and a useful distraction from the needs and hurts of others). As it is the family that cares for children long after the cessation of professional contact, it may be argued that any intervention should be targeted at the family unit (Worden, 1991). The provision of routinely available community-based services can highlight the importance of the family as the provider of long-term care. It is vital that parents are helped to understand and

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support their children without professional services excluding them or failing to

recognize their role.

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    A CHARTER FOR BEREAVED CHILDREN

This has been written following our conversations with over 1,500 bereaved children

    and their families since Winston‟s Wish began in 1992. Although supporting a

    bereaved child can seem a daunting challenge, we have found there are simple and

    straightforward ways that can make a positive difference to a grieving child. If we live

    in a society that genuinely wants to enable children and young people to re-build their

    lives after the death of a family member, then we need to respect their rights to the

    following.

1 ADEQUATE INFORMATION

Bereaved children are entitled to receive answers to their questions and information

    that clearly explains what has happened, why it has happened and what will happen

    next.

‘Daddy died of a tumour, but I don’t know what a tumour is.’ Alice, age 6, whose

    father died of stomach cancer.

2 BEING INVOLVED

Bereaved children should be asked if they wish to be involved in important decisions

    that have an impact on their lives (such as planning the funeral, remembering

    anniversaries).

‘I helped to choose mum’s favourite music, which they played at her funeral.’ Kim,

    age 12.

    3 FAMILY INVOLVEMENT

Bereaved children should receive support which includes their parent(s) and which

    also respects each child‟s confidentiality.

‘Meeting other parents in exactly the same situation as me was so helpful.’ John

    whose wife died from a brain haemorrhage.

    4 MEETING OTHERS

Bereaved children can benefit from the opportunity of meeting other children who

    have had similar experiences.

‘Often I want to break down and cry but I can’t do that in front of my school

    mates…..meeting all those other kids who have been through the same thing…..I

    don’t feel alone any more.’ Colin, age 12, whose mother died.

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    5 TELLING THE STORY

Bereaved children have a right to tell their story in a variety of ways and for those

    stories to be heard, read or seen by those important to them. For example, through

    drawing, puppets, letters and words.

‘My picture shows the car banged dad on the head, he fell of his bike, hit his head

    and died later in hospital.’ Georgina, age 7, whose father died in a road accident.

    6 EXPRESSING FEELINGS

Bereaved children should feel comfortable expressing all feelings associated with

    grief, such as anger, sadness, guilt and anxiety, and to be helped to find appropriate

    ways to do this.

‘It’s alright to cry and OK to be happy as well.’ James, age 9, whose dad died from a

    heart attack.

7 NOT TO BLAME

Bereaved children should be helped to understand they are not responsible and not

    to blame for the death.

‘I now understand it wasn’t anyone’s fault.’ Chris, age 12, whose dad died by suicide.

    8 ESTABLISHED ROUTINES

Bereaved children should be able to choose to continue previously enjoyed activities

    and interests.

‘I went to Brownies after Meg died, I wanted my friends to know.’

    9 SCHOOL RESPONSE

Bereaved children can benefit from receiving an appropriate and positive response

    from their school or college.

‘My teacher remembers the days which are difficult, like Father’s Day and dad’s

    birthday.’ Alex, age 9.

10 REMEMBERING

Bereaved children have a right to remember the person who has died for the rest of

    their lives if they wish to do so. This may involve re-living memories (both good and

    difficult) so that the person becomes a comfortable part of the child‟s on-going life

    story.

‘I like to show my memory book to people who didn’t have the chance to know my

    dad.’ Bethany, age 8, whose father died from cancer.

    FIGURE 2: A Charter for Bereaved Children

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The functioning of the surviving parent has been identified as an important factor in a

    child‟s adjustment following the death of a parent (Elizur & Kaffman, 1983; Silverman & Worden, 1993). Many families will benefit from access to routine support to

    promote adaptive coping. Some parents may simply want the opportunity to talk to

    someone with experience in supporting other bereaved children, while others will use

    support over a longer period. This requires a flexible response by services and an

    open referral process that is easy to access by parents and those who work with

    children. As well as knowledge about services, access to advice and resources can

    raise awareness of the specific needs of bereaved children for both parents and

    significant others in the child‟s environment (such as healthcare professionals and

    teachers). Acknowledging a child‟s bereavement in general practice notes can help

    to identify whether there is an increase in the number of GP visits following a death in

    the family (Lloyd-Williams et al., 1998). Teaching staff can benefit from developing

    skills and guidelines for responding positively to a death in the school community.[7]

Flexibility also requires that services respond positively to the context-specific

    challenges of their local area or country, acknowledging particular social and cultural

    issues (Young & Papadatou, 1997). Interventions offered should be accessible and

    relevant, responding with sensitivity to the needs of the population served. Such

    considerations may in some way explain the low attrition rates observed in

    established community-based services. It is also important that services develop

    relevant outcome measures, evaluating the efficacy of interventions in terms of their

    stated aims. These aims may include: providing information, enhancing coping

    strategies, improving family communication, providing an opportunity to meet others

    with similar experiences (Stokes et al., 1997).

    A continuing bond for children?

Only one third of children in the Harvard Child Bereavement Study (Silverman &

    Worden, 1992) were considered „at risk‟ over a two-year period. Does this mean that

    two-thirds of the sample required no intervention at all? It is interesting to consider

    what it means for those children to be involved in the study. Bereaved children

    offered a simple intervention are reported to be more able to talk about their dead

    parent (Black, 1991). The opportunity to „tell their story‟, to be heard and ask

    questions, albeit as part of a research process, could be considered an intervention

    in itself. Following a bereavement, adults often express a need for opportunities to

    talk about their experience of the illness, death and their relationship with the

    deceased in order to discover its meaning.

Evidence from studies of parental grief suggest that people continue to have a

    relationship with the deceased, that bonds continue in some form rather than being

    completely severed, and that this is adaptive (Klass, 1988). Children also maintain a

    connection to their deceased parent, reporting the importance of objects belonging to

    the deceased, dreams and a sense of presence (Silverman et al. 1992; Worden,

    1997). Bereaved children, along with adults, need to find an appropriate place for the

    dead person in the context of their ongoing lives. This meaning-making process is

    ongoing and involves working out „why‟ their parent died and also „what role‟ this

    parent would now have in their lives. These are part of the recently discussed

    concept of “Continuing Bonds” (Klass et al., 1996), one which fits well with the

    development of the Dual Process Model and current interests in biography and

    narrative (Walter, 1996). Clinical observations of over 1,500 children on the

    Winston‟s Wish programme suggest that being given permission to talk about and

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