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A Bereavement information pack developed for families and carers

Author: Mary Butler - Clinical Nurse Specialist in Palliative Care
27 June 2017

A bereavement information pack has been developed for families and carers of patients looked after by the Waterford Hospice Homecare team.The development of the bereavement pack was an essential component of a change management project undertaken by clinical nurse specialist in palliative care, Mary Butler as part of her MSc in Bereavement Studies. <br /><br />The project started in December 2015 and was completed in April 2016. Here Mary Butler gives a detailed account of the development of the resource from her initial research to presenting details of the project to a major palliative care conference in Madrid.

“The development of the bereavement pack was an essential component of a Change Management project towards the author’s MSc in Bereavement Studies.  The project started in December 2015 and was completed in April 2016.  
Waterford Hospice Movement is a voluntary organisation part funded by the Health Service Executive (HSE) which provides palliative care to patients and their families at home, in the Community Hospital and Nursing Homes.  The team consists of a full time Nursing Manager, Office Administration Manager, two Complimentary Therapists, six Clinical Nurse Specialists and one RGN.  Clinical governance is provided by the Palliative Care Consultant in University Hospital Waterford.  The service is run by a Voluntary Committee which meets on a monthly basis.

 The aim of the project was that each family/carer would be given an information pack by a nurse when she carries out a bereavement visit.  It gives people information about the normal process of grief, helps them to identify when their grief is abnormal and when they need to seek help.  

 Review of the bereavement literature highlighted the fact that there was a gap in the level of bereavement support provided by Waterford Hospice Home Care.  As an organisation, we were providing the emotional and psychological support but not the information on the process of grief and on the support services that are available locally.

 Grief is a normal reaction to bereavement.  However, some people who are bereaved may not understand the process of grief, so accessible information should be provided on grieving and how to access support services.  The value of written information is that people can read it in their own time and use the information as they feel appropriate.

The bereavement information pack consists of a bereavement information leaflet.  It provides information on the process of grief and the associated emotions with the aim of helping people to feel supported.  It acknowledges their loss but at the same time reminds them of their resilience to cope with their grief.  It also gives details of the contact numbers for local support agencies and information on how to access national resources.

 The inclusion of the Citizens Advice Booklet in the pack addresses the aim of minimising additional stressors i.e. financial hardship and isolation.

 We also have access to leaflets from Barnardos, Anam Cara and The Irish Hospice Foundation.  Nurses can include these leaflets in the pack if they feel they would be of benefit to a family. 

 An evaluation form is included in the pack together with a s.a.e. Recipients can give anonymous feedback about the bereavement information pack.    Example comments include:

‘Knowing when to ask for help and where to find it is very important and this information is well covered here’
‘The information leaflet is very helpful.  It makes me feel normal in my grief’.

 Bereavement packs are generally issued on average 12 days after death occurs.  Responses follow typically 48 days later if they are sent.  Between April 2016 and April 2017, 230 bereavement packs were given to families/carers.  There were 30 returned evaluation forms. Of the 30 responses, 6(20%) used the chance to provide positive feedback for their care and/or to request further help.

"In July 2016, I submitted an abstract describing the process of the development of the bereavement information pack to the 15th World Congress of the European Association for Palliative Care.  It was accepted as a poster presentation and I attended the conference in May 2017.  It was a fantastic experience as I had never previously attended such a large scale Conference.  I felt very proud to represent Waterford Hospice Home Care and to showcase our bereavement work.  One of the highlights for me was to attend talks given by researchers whose work I had referenced in my literature review for the bereavement information pack.Since the introduction of the bereavement information pack there has been an emphasis on development of this aspect of our service.  We have developed a Bereavement Policy for Waterford Hospice Home Care.  The pack is visible evidence that we provide bereavement support to families/cares of patients that we have had the privilege of knowing and caring for. “

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