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Initial analysis of a community-based bereavement programme.

INTRODUCTION

The leading child bereavement charity Winston's Wish aims to support children who have suffered a significant bereavement, to help them make sense of the death, to rebuild their lives and to develop resilience for their future. Winston's Wish SWITCH programme is a community outreach service that targets children aged 8-14 years who are at an increased risk of antisocial and self-destructive behaviour following bereavement, and may be on a pathway to youth offending. They may be experiencing difficulties in one of the following areas--truancy, exclusion and risk of expulsion from school, relationship breakdown with peers or family, difficulties with managing emotions or behaviours, and social isolation. These have all been highlighted as risk factors for difficulties with the criminal justice system. The SWITCH project is supported by the Big Lottery and is part of a wider project entitled Realising Ambition, which is managed by Catch 22. This is a social business that provides support to services, such as Winston's Wish. The project works in partnership with the Social Research Unit, Young Foundation and Substance. This article describes a service evaluation that was undertaken to understand the impact of the SWITCH programme on young people. The evaluation helps us to understand some of the limitations and benefits of the programme and informs future improvements.

A bereavement in childhood from a significant attachment figure can have a detrimental impact upon a range of developmental and life issues (Aynsley-Green et al, 2012; Ribbens McCarthy & Jessop, 2005). The Child Bereavement Network has suggested that 5 per cent of children within the UK are bereaved of a parent or sibling before the age of 16 (Parsons, 2011). Akerman & Statham (2014) suggest that a bereavement in childhood impacts upon a child's wellbeing, short term and long term, specifically in areas of psychological health and educational attainment. It is typical, following a significant bereavement for a child to display a range of emotional and behavioural responses to their grief. These can be displayed in a variety of different ways. Dyregrov (2008) has outlined some of the more common reactions to grief which include--but are not limited to--anxieties, vivid memories and sleep difficulties. The complex responses of bereaved children can often be "forgotten" (Smith, 1999) by adults and their needs unheeded. It is important that child bereavement services, and indeed the wider network such as schools, are aware of the different ways a child can react to bereavement, in order to be able to support the child in the best way possible.

Theoretical grounding for child bereavement

There are a range of different bereavement theories that have been adapted and used across children's services. Three models in particular are the Dual Process Model (Stroebe & Schut, 1999), Continuing Bonds (Klass et al, 1996) and the Growing around Grief Model (Tonkin, 1996). When working with a child that has suffered a significant bereavement, it is important to keep in mind these theories, and to be able to apply them succinctly to appropriate situations.

What happens if childhood bereavement is unsupported?

It has been demonstrated that a significant bereavement in childhood can cause long-term risks to health and wellbeing, and if left untreated these can increase a young person's vulnerability to a range of behavioural, social and psychological difficulties (Ribbens McCarthy & Jessop, 2005, Penny & Stubbs, 2014). The likelihood of vulnerabilities to additional difficulties following a bereavement is increased if the young person is already experiencing difficulties within family and social relationships (Ribbens McCarthy & Jessop, 2005) or faces further changes and losses (Christ, 2005). A significant bereavement can increase a child or young person's vulnerabilities and can lead to behaviour that is difficult to manage, for example aggression, and result in destructive coping mechanisms such as criminal behaviour. These coping behaviours, coupled with a significant bereavement, can impact on a young person facing the difficulties of balancing school, home life and peer relationships and possibly facing a pathway into the criminal justice system (Vaswani, 2008).

The following subsections outline some of the key areas that may be affected by unsupported childhood bereavement:

a) Educational attainment

Following a bereavement, children may face difficulties with underachieving (Abdelnoor & Hollins 2004b), truanting, difficulties with concentration (Dyregov, 2004), and attentional problems (Haine et al, 2008, Akerman & Statham, 2014). The research has also demonstrated that they are more at risk of future unemployment in adulthood (Parsons, 2011).

b) Mental health difficulties

A significant bereavement in childhood can result in several difficulties, in particular anxiety (Fauth et al, 2009), depression (Brent et al, 2009), conduct disorder (Fauth et al, 2009), and in some cases post-traumatic stress disorder (PTSD) (Melhelm et al, 2008). It is estimated that approximately 50-60 per cent of all children and young people who are bereaved of a parent show distress and depressive symptoms which persist over time (Parsons, 2011).

c) Risk of youth offending

It has been reported that a bereavement experienced by a youth offender is typically more traumatic and violent (Vaswani, 2008). Approximately 13 per cent of young people under the supervision of Youth Offending Teams (Youth Justice Trust, 2003), 17 per cent of persistent young offenders (Vaswani, 2008), and 10 per cent of prisoners (Boswell, 1996) had suffered a significant childhood bereavement.

METHOD

Description of the SWITCH intervention

The SWITCH programme includes up to four family meetings, four group sessions for children and young people (after school, two hours), and one celebration day. The groups and family meetings are delivered by senior practitioners, who are trained in working in bereavement, family therapy and counselling and they are supervised by a qualified psychologist.

Referral information

Figure 1 illustrates the referral criteria used for the SWITCH programme. The referrer is typically a social worker, teacher or parent.

Family meetings

During the intervention the practitioners aim to support the children and young people to understand the finality of death, to create an attachment to the person who has died by retaining a continuing bond, to have a final goodbye, and to provide a visual representation of the sequence of events that preceded the death and events at the time. The child is supported to express difficult emotions, and given permission, within a safe environment, to explore all feelings and memories whether positive or negative. The development of coping skills will be individual to each child and family, but it is crucial that children develop the skills to identify and manage arousal to high emotions, and give them permission to seek help from others to regulate their behaviour.

Group work

All the children and young people are invited to take part in four group sessions, held over a two-week period. The aim is to share the grief experiences with others, to reduce the sense of 'aloneness' and feeling different from their peers. An important element of the group work is the permission given to be a child and have fun without feeling guilty or anxious. The group is designed for a maximum of six children with a shared age and level of maturity. Group work involves the use of creative activities, talking together, and thinking and sharing, which allows the child to continue the bond with the person that has died (Rothaupt & Becker, 2007). Additionally memory activities are completed within the group. Sometimes, there are no 'special memories' only difficult ones and it is important that the children have the reflective time and space to process that, as well as the death.

Following completion of the group, the children are invited to a celebration day. Having fun and feeling good is an important part of the bereavement intervention (Brewer & Sparkes, 2011).

Description of service evaluation

The aim of the service evaluation was to initially understand the impact that the SWITCH programme may be having upon children and young people. We examined data taken from baseline to six months follow up after completing a SWITCH intervention, using the Strengths and Difficulties Questionnaire (SDQ). Following a referral to SWITCH from school, social worker or their GP, the children were asked to complete the SDQ within their initial assessment in their home environment. Six months after the completion of the programme, children were asked to complete the post SDQ measure.

Participants

As the study was part of an existing service participants completed the intervention as normal so standardised ethical review was not needed. The SWITCH project complies with ethical considerations, as set internally, in conjunction with the Social Research Unit. The data were anonymised and used only for evaluation purposes. All participants gave written consent to data collection and could decline or withdraw at any time of the programme.

The participants in the service evaluation were children who started and completed the SWITCH programme between 15.01.2013 and 17.10.2014. Pre- and post-group data were available for 127 children within this time period. The length of time since the bereavement varied with each child, however the minimum was six months and the maximum was five years and two months. In all, 31 children and young people did not complete a post SDQ and 52 children and young people did not complete a pre or post questionnaire, within the time frame. These children were not included in this sample if they did not have the pre and post SDQ.

Outcome measure

The Strengths and Difficulties Questionnaire (Goodman, 1991,2001) is used widely across children and adolescent mental health services and children's charities, as well as other child bereavement services. The SDQ measures children and young people's behaviours, emotions and relationships through 25 items across five subscales--emotional distress, hyperactivity and attention difficulties, behavioural difficulties, peer problems and pro social behaviours. The first four areas can be summed for an overall stress score. The SDQ scoring range for the overall stress score is between 0-40. A score of less than 13 is normal, and more than 17 is cause for concern.

For children below the age of 11 years, we asked parents or carers to complete this on their behalf. For children over the age of 11, we asked children to complete a self-report version. The SDQ is a standardised measure that has been thoroughly researched in child and adolescent services. It has a strong test-retest reliability of .62 and the criterion validity is judged to be adequate (Goodman, 1997).

RESULTS

Initial results of the SWITCH programme

As a part of the regular service outcome monitoring, all children and young people who are involved in the SWITCH programme, complete a Strength and Difficulties Questionnaire (SDQ) pre and six months following the completion of the intervention. The mean age of participants was 12.27 (SD=2.03, range= 8-14 years); 52 per cent were male and 48 per cent were female; 37 per cent had experienced death of a father, 34 per cent a grandparent, 15 per cent a mother; 97 per cent of deaths were accidents or an illness, and 3 per cent were suicide bereavements.

As can be observed in the table we noticed a decrease in the overall stress scores from baseline to follow up. There is a slight difference between baseline (mean=16.83, SD=7.09) and follow up (mean=16.24, SD=5.62) on the parent reporting SDQ (n=31). Furthermore Cohen's effect size (d=0.046) for these results suggests they are statistically insignificant. However, in the young person self-reported SDQ results (n=96), there is a larger difference between baseline (mean=18.56, SD=6.33) to follow up (mean=15.62, SD=6.57). A Cohen's effect size (d=0.22) for these results suggests a low clinical significance.

The table illustrates the differences between parent and child reporting on the breakdown of the different SDQ domains. It is notable that there is a decrease from baseline to follow up in emotional distress, behavioural difficulties, and hyperactivity and peer problems. These results suggest a small clinical significance in the reduction across the domains. There is a slight increase in pro-social behaviour, which again suggests a small clinical significance from the impact of the SWITCH programme.

DISCUSSION

These preliminary results are promising and suggest that from baseline to follow up the SWITCH programme may contribute to a reduction in the impact of difficulties on a child's life. The results suggest that this is across several domains, including emotional distress, behavioural difficulties, hyperactivity and peer problems. It could be suggested that the SWITCH programme supports a reduction in areas that should impact upon a child's ability to concentrate in school, and to develop and maintain appropriate peer and family relationships, and thus could lead to a reduction in the likelihood of developing further risk factors of progressing into the criminal justice system. It is important to note that although the initial results of the SWITCH programme are promising, there are a variety of confounding factors that can impact upon these results, such as improvement in home life, parent more able to parent as their acute grief lessens, changes in school, general adolescent transitions and development of emotional maturity. Additionally due to the nature of childhood bereavement, it is highly likely that the feelings of anxiety and other grief symptoms would have decreased after a period of time. Therefore it is impossible to attribute the improvements in the SDQ purely to the SWITCH programme

Limitations with the evaluation

One of the main limitations of the evaluation was that it only used the SDQ, thus the data gathered was purely based on self-reporting and was not objective. The evaluation did not gather any background information on the children's levels of educational attainment and pre-existing mental health disorders that may have impacted upon their involvement with the group. Additionally data were just gathered from a specific sample, from the two sites in West Sussex and Gloucestershire. For the purpose of the evaluation, children were only included that had completed the SWITCH evaluation and the post intervention SDQ. Despite having no drop out, once children are signed up to SWITCH, data from a group of children could not be included as they did not complete the SDQ pre and post measures. The reasons for children and young people not completing the post SDQ were mainly due to lack of resources, changes in children's situation, or difficulties with engagement. Further evaluation is currently being undertaken to understand the reasons for these children dropping out of the programme, as this information could help to guide future developments and make it more accessible.

Implications for clinical practice

The SWITCH programme was developed to support children and young people who are more at risk of becoming youth offenders. The practitioners that work with these families have observed that the children and young people often report that they are better able to cope and feel that they are a different person after engaging with a SWITCH programme. One of the main implications of the intervention is the benefits of successful engagement with difficult or hard-to-reach families. The team have suggested a number of reasons for this, which include a 'fun' approach, being outside of school, and the fact that practitioners are 'persistent' with the children. Also, group sizes are small and sessions are of a short duration.

Limitations of the SWITCH programme

However, there are some limitations to the programme. It is a challenge to run the group work with a range of different ages, background, types of death and time frame since the person has died. The aim of a broad referral criteria is to capture a wide range of children, but it often means that there are a number of conflicting variables within a group. There can often be a range of different capacities, ages, personalities and behavioural difficulties within a group. These can all impact upon the smooth running of the group. Additionally, the significance that each child places on the death can be an issue. The programme is delivered across a wide geographical area, which has implications for the amount of travelling the team has to undertake. There have been practical challenges, including engaging parents in the group work, travel difficulties with getting children to the groups, and the challenges of the programme being held across two hubs in West Sussex and Gloucestershire affecting successful joined up working. Winston's Wish started in 1992, and has established itself as one of the leading child bereavement charities. SWITCH was a new, funded programme set up within Winston's Wish. There have been challenges setting up the programme within an existing service, but these have been minimal. We have in place a specific manual, with peer-peer observation, supervision and ongoing team meetings for all staff involved in the programme to maximise standardisation across teams.

CONCLUSION

Overall, the initial results from SWITCH are promising. However there are several areas that require further attention. In particular, the service is interested in conducting research to understand the long-term effect of the SWITCH programme, to explore whether there has been a significant impact of the bereavement intervention upon children and young people's behaviour, relationships and educational attainment. It would also be interesting to compare this data to a sample of typically developing children to further understand the impact that the programme is having. It would be useful to interview parents and children to understand individual perspectives of the programme. And it is important to gather information on educational attainment, as this is an area that has been highlighted in research as affected by childhood bereavement. There are several limitations with this service evaluation, but the initial results suggest that the SWITCH programme may have an impact on a sample of vulnerable, difficult-to-engage children and young people.

Key points

* SWITCH is a community-based bereavement intervention, targeted at children who have suffered a significant bereavement and are at risk of antisocial and self-destructive behaviour in areas of school, home life and relationships

* The intervention includes four family meetings, four group sessions for children and young people (after school, two hours), and one celebration day

* The service evaluation studied a sample (n=127) of pre- to six months post-intervention completion scores on the Strength and Difficulty Questionnaires (SDQ)

* Overall, the initial evaluation results are promising, but more robust research needs to be undertaken to understand the full impact of the SWITCH programme.

KATE HILL BSc (Hons), MSc Researcher at Winston's Wish, national child bereavement charity

References

Abdelnoor, A. and Hollins, S. (2004a). How children cope at school after family bereavement. Educational and Child Psychology. 21(3): 85-94.

Akerman, R., and Statham, J. (2014). Bereavement in childhood: the impact on psychological and educational outcomes and the effectiveness of support services. London: Child Wellbeing Research Centre and the Institute of Education.

Boswell, G. (1996). Young and dangerous: The backgrounds and careers of Section 53 offenders. Vermont: Ashgate Publishing Company.

Brewer, J., & Sparkes, A. (2011b). Parentally bereaved children and post-traumatic growth: Insights from an ethnographic study of a UK childhood bereavement service. Mortality. 16 (3): 204-22.

Christ, G. H., Raveis, V. H., Seigel, K., Karus, D., & Christ, A. E. (2005). Evaluation of a preventative intervention for bereaved children. J Soc Work End Life Palliat Care. 1 (3): 57-81.

Dyregrov, A. (2004). Educational consequences of loss and trauma. Educational and Child Psychology. 21 (3): 77-84.

Dyregrov, (2008). Grief in children. A handbook for adults. London: Jessica Kingsley Publishers.

Goodman R (1997). The Strengths and Difficulties Questionnaire: A Research Note. Journal of Child Psychology and Psychiatry. 38 (5): 581-6.

Fauth, B., Thompson, M., and Penny, A. (2009). Associations between childhood bereavement and children's background, experiences and outcomes. Secondary analysis of the 2004 Mental Health of Children and Young People in Great Britain data. London: National Children's Bureau.

Haine, R. A., Ayers, T. S., Sandler, I. N. & Wolchik, S. A (2008). Evidence-based practices for parentally bereaved children and their families. Professional Psychology: Research and Practice. 39 (2): 113-21.

Klass D, Silverman S, Nickman S. (1996). Continuing bonds: new understandings of grief. Washington: Taylor and Francis.

Melhem, N. M., Walker, M., Moritz, G. and Brent, DA. (2008). Antecedents and sequelae of sudden parental death in offspring and surviving caregivers. Arch PediatrAdolesc Med, 162 (5): 403-10.

Parsons, S. (2011). Long-term impact of childhood bereavement: preliminary analysis of the 1970 British cohort study (BCS70), London: Child Well-Being Research Centre.

Penny, A. and Stubbs, D. (2014). Bereavement in childhood, what do we know in 2014? London: NCB.

Ribbens McCarthy, J. and Jessop, J. (2005). Young people, bereavement and loss; Disruptive transitions? London: National Children's Bureau.

Rothaupt, J. & Becker, K. (2007). From Decathecting to Continuing Bonds: A Literature Review of Western Bereavement Theory. The Family Journal. 15 (1): 6-15.

Smith, S.C. (1999). The Forgotten Mourners. London: Jessica Kingsley Publishers.

Stroebe, M. & Schut, H. (1999). The dual process model of coping with bereavement: rationale and description. Death studies. 23 (3): 197-224.

Tonkin, L. (1996) Growing Around Grief--another way of looking at grief and recovery. Bereavement Care. 15 (1): 10.

Vaswani, N. (2008). Persistent Offender profile: focus on bereavement, Glasgow: Criminal Justice Social Work Development Centre for Scotland.

Youth Justice Board (2005a). 'ASSET Mental Health Screening Tool' http//www.yjb.gov.uk/en-gb/practitioners/ Health/ MentalHealth/ accessed 22/03/14.

Youth Justice Trust (2003). On the case. Manchester: Youth Justice Trust.

Table 1. Baseline and follow up SDQ's overall stress scores
dependant on informant and gender.

SDQ         Group       Male          Female        Total
Informant
                        N    Mean     N    Mean     N    Mean
                             (SD)          (SD)          (SD)

Parent      Baseline    16   16.60    15   17.07    31   16.83
(n=31)                       (6.30)        (8.02)        (7.09)

            Follow up   16   16.53    15   14.87    31   16.24
                             (4.66)        (7.62)        (5.62)

Child       Baseline    49   18.45    47   17.9     96   18.56
(n=96)                       (7.9)         (5.5)         (6.33)

            Follow up   49   16.10    47   15.1     96   15.62
                             (6.7)         (6.4)         (6.57)

Table 2. Breakdown of SDQ results across the different domains

SDQ             Group       Emotional    Behavioural    Hyperactivity
Informant                   Distress     Difficulties

                            M (SD)       M (SD)         M (SD)

Parent (n=31)   Baseline    5.4 (2.7)    4.0 (2.0)      6.5 (2.45)
                Follow up   4.6 (2.8)    3.4 (2.0)      5.5 (2.6)
Child (n=96)    Baseline    5.1 (2.3)    4.2 (2.1)      5.9 (2.0)
                Follow up   4.1 (2.3)    3.9 (2.2)      6.7 (1.9)

SDQ             Group       Peer        Pro-social
Informant                   Problems

                            M (SD)      M (SD)

Parent (n=31)   Baseline    3.0 (2.0)   7.3 (2.0)
                Follow up   2.3 (2.0)   7.5 (2.0)
Child (n=96)    Baseline    3.2 (2.4)   7.3 (2.0)
                Follow up   2.1 (1.6)   7.8 (1.8)
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Title Annotation:PROFESSIONAL AND RESEARCH
Author:Hill, Kate
Publication:Community Practitioner
Article Type:Report
Geographic Code:4EUUK
Date:Nov 1, 2015
Words:3751
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