The role of the hospice in supporting kinship care networks

Categories: Care.

Linda McEnhill, CEO of Ardgowan Hospice in Greenock, Scotland, and Mark Stogdon, Director of Patient and Family Support at North London Hospice, explain how hospices can support young people growing up in kinship care.

Ardgowan Hospice in Greenock is marking Scottish Kinship Care Week due to an award from the St James’ Place Foundation 2018 grant round which is focussed on meeting the needs of ‘hidden’ or disenfranchised carers.

In conjunction with North London Hospice who are also grant holders, we are responding to the issues highlighted in the Grandparents Plus publication Growing up in Kinship Care a longitudinal study detailing how the life experiences of young people (aged 16 – 25) are impacted by growing up in Kinship Care.

Issues for young people in kinship care

This study demonstrates the predominantly good overall outcomes for children and young people growing up in kinship care, across a range of domains (education, physical and mental health) in comparison with those children growing up in non-kinship, local-authority care.

However, the study also demonstrates cause for concern when comparing the outcomes of these young people to the general population. Those growing up in kinship care did significantly less well with 48 per cent of the young people still struggling with multiple aspects of their lives, including education, psychological wellbeing, use of substances, offending behaviour, teenage pregnancy and access to education, training or employment.

 Should hospices be involved in kinship care?

This is the obvious question for both North London Hospice and Ardgowan Hospice, as with constrained resources neither are seeking to spread themselves even more thinly. However embedded within this report are figures which mandate our involvement. Of those young people featured in the study 26 per cent had entered kinship care due to the death of a parent and 38 per cent had experienced the death of one or both parents. For hospices committed to serving our communities by enhancing their capacity, there is resonance in the report’s conclusion that:

“This is an issue that has not received much attention but had a major detrimental impact on some young people. It is important that these young people and their carers are linked to bereavement services”.

We also know, from experience, that the outcomes for bereaved young people are intimately related to the resilience of their adult carers and so the findings that emotional, practical and financial support is patchy for kinship carers is cause for concern. Much of the support requested by kinship carers is that which we routinely provide but is nonetheless vital.

“Support and advice for kinship carers is important, so that they can help young people to cope better with the range of challenges they face. This may include dealing with … complex feelings associated with parental death and feelings of guilt, self-blame and loss of their siblings”.

However hospices can offer more; one of the limitations of this study is that it focusses only on formal kinship care arrangements due to the difficulty of identifying and accessing those inhabiting informal arrangements.

Undoubtedly the impacts of bereavement on kinship networks are much greater for informal situations which lack all of the (albeit limited) statutory supports and, as most hospices will be able to testify, sometimes will lack the robustness that formal agreements about who the kinship carers can be, how and where the young people will be cared for bring. Given our context of death and dying these are precisely the types of kinship care circumstances we encounter.

Do hospices support kinship care networks? Do they support them well?

The answer to the first part of the question is a resounding ‘Yes!’ of course we do. With regard to the latter part of the question the answer given, until now, by Ardgowan Hospice and North London Hospice, and we suspect most others (especially those without child bereavement services) is we don’t know.

The reason for this is that our hospices haven’t captured information specifically identifying kinship carers and the young people they care for. This means that although we have anecdotal accounts of supporting kinship networks we have no data to evidence this claim and no means of targeting our interventions or consulting on the same. This is vitally important given that, in some cases, we will be the only agency involved as the death of an adult caregiver initiates the need for kinship care and, where properly targeted support (including referral) may reduce the potential isolation, poverty and negative impacts on young people growing up in kinship care.

Benefits to the kinship network and the hospice

It is early days for our projects but there are already tangible ‘partnership-working’ benefits:

  • Benefitting the hospice: statutory kinship care agencies providing in-house training for our staff (shared with neighbouring hospices) on changed legislation
  • Advantaging a wider range of beneficiaries than we would ordinarily reach e.g. Ardgowan Hospice Project Lead has facilitated grief awareness sessions with statutory and voluntary kinship care agencies and has spoken with adults and young people experiencing loss about their support needs
  • Resulting in new models of working: North London Hospice has appointed a (non-palliative care) kinship coordinator and Ardgowan Hospice is seconding a kinship care worker from Barnardo’s, there is much to learn from this.
  • Potentially resulting in learning for the national hospice movement; both hospice project teams meet virtually to compare results and to theorise about their experience across diverse demographics with an aim of sharing their learning widely.

St James’ Place Foundation has enabled the resource with which to experiment with new care models which will advantage the entire network of support for kinship care in our respective catchments.

The resource needed to sustain the relationships and care models at the end of the project is minimal in relation to the potential impacts remembering that “without additional help, the life chances of some of these young people will remain compromised. We welcome the opportunity to link with other hospices who have dedicated Kinship Care Services. Watch this space!

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