1. Carers NSW 2011 Biennial Conference " Changing Society; Changing Needs – new directions in carer support" ______________________________ Telephone Bereavement Support in rural and remote NSW Principle researcher: Alison Dawes – Palliative Care CNC, Dubbo Joan Ryan – Palliative Care CNC, RPAH

2. Bereavement Support While grief is a normal and unique emotional response to loss, bereavement is the period of time where people grieve (Kaunonen, et al 2000) Support during bereavement is considered an integral component of comprehensive palliative ( Palliative Care Australia, 2005)

3. What is Palliative care “…. An approach that improves quality of life of patients and their families facing the problem associated with life –threatening illness, through the prevention of suffering and by early identification and impeccable assessment and treatment of pain and other problems, physical, psychological and spiritual” World Health Organisation 2005

4. Project background Bereavement support is an integral component of a palliative care service Review of our local bereavement model as part of service planning delivery Major challenges exist to providing equitable, accessible and timely bereavement support to carers in rural and remote regions

5. Literature Review recognises experience of grief as universal and individual Considerable debate regarding what is the best evidenced based support model, what should be offered and by whom? (Milberg et al 2008), (Roberts and Gilloway, 2008) Some suggest that formal bereavement support may at times be unhelpful as uncomplicated grief is self limiting with family and friend support sufficient… and All efforts should be concentrated on identifying those at risk of a complicated bereavement about (5-33%) who will have severe symptoms in bereavement ( Jordan and Neimeyer 2003), (Schut and Stroebe 2005) The National Institute of Clinical Excellence recommends however a three teir support model : NICE( 2004 )

6. Palliative Care Service Region The North West region of NSW Includes both rural and remote communities Total population of approximately 100,000 Dubbo the regional centre of 40,000 people Travel times to region’s communities range from 30 to 280kms (one way) Support coordinated by specialist palliative care nurses supported by a monthly visiting medical clinic

7. NSW local health networks NSW Local Health Networks

8. Bereavement Support Service Profile Provided predominantly by a trained volunteer, predominantly by telephone Carers and family assessed as entering an ‘uncomplicated bereavement phase’ are eligible for telephone bereavement support (TBS) Support offered for up to 6 months following the death of the patient

9. Bereavement Support Model Trained Bereavement Volunteer (BV) attends weekly multi disciplinary care planning meeting Palliative Care Nurse Consultant (CNC) meets weekly with BV Palliative Care Nurse visits bereaved carers in first week of bereavement BV sends letter outlining the service and time of expected contact in 4 weeks.

10. Bereavement Service Review 2007 99 recorded deaths 123 referrals for TBS made (sometimes more than1 person/patient referred for TBS) 7 declined TBS at initial telephone contact Small unrecorded number declined TBS when seen by palliative care nurse in first week 15 people were unable to be contacted following 2 telephone calls 4 people referred on for support of bereavement assessed as ‘complicated’

11. Table 1: Relationship of telephone bereavement support recipients to the deceased, 2007

13. Importance of bereavement volunteers Commonly used in bereavement support Cost effective Normalise bereavement in that they are ‘lay’ community people Promote that grief in bereavement is natural When there is an adequate number and diversity of volunteers a service has the opportunity to provide bereavement support that is better matched to the recipients needs Must be adequate selected, trained and supported

14. Challenges of a Bereavement Volunteer Telephone Support Service Extreme care required in regard to selection, training, education Risk of becoming over involved, maintaining boundaries and sensing when to withdraw support Risk of not being able to negotiate a withdrawal Recruitment and retention could be unpredictable Confidentiality Staff support and clinical supervision Previous and personal experiences of bereavement

15. Research Study Question “In what ways is telephone bereavement support helpful for family members of deceased palliative patients in rural and remote settings? What are the limitations ?

16. Methodology Selection criteria 23 participants approached in order of them meeting selection criteria 9 face to face interviews and 1 letter included in data collection over the course of 2008 Qualitative study using semi structured, recorded interviews Thematic approach to research methodology

17. What did it tell us – themes developed 1. Normalisation of grief 2. Continuing sense of care 3. Acknowledging family and support networks 4. Support access 5. Impact on disclosure 6. Preference for physical presence

18. Normalisation of grief Avenue to communicate Non judgemental Understanding of the nature of grief I probably realise that it wasn’t so much grief counselling as an avenue to discuss my thoughts and feelings about Mum going and also about how the service was provided

19. Continuing sense of care Connection with the palliative care team appreciated… Still thinking of us Recollections with a person who understands Storytelling as a way of recall Carer recognised as important in providing the care Continuing sense of care Well I thought it was great because you get a lot of help when they are sick and when they have gone you are sort of left and it is lovely to know that somebody still cares and is concerned about you

20. Family Support Acknowledged Independent of family and friends Reducing the burden on their family Others going through their own grief Honest dialogue Many had adequate family support I knew I wasn’t going to get any help from anywhere else…now I am not saying anything about my own family but they have their own separate lives and asking them to cope with my grief …

21. Support access Ease and flexibility of access Convenient, non-threatening environment Positive for long distances, housebound or with limited resources I think it’s beneficial because you’re in your own home and not having to go out

22. Impacts on disclosure Anonymity, level of trust, positive boundary Avenue for feed-back New slate I think that the service needs to be linked with health services because what I am finding in my situation is that people do not want to know, They’ve still got the attitude leave her alone and it’s not my problem

23. Preference for a physical presence Physical contact for additional comfort Yearning for touch Acceptance of the limitations Sometimes I wished for the volunteer was here so she could put her arms around me but I know that she couldn’t be

24. Limiting factors identified Receiving support by telephone may inhibit the level of disclosure Support by telephone may limit the comfort gained by a physical presence Ratio of males to females significant

25. What are the key things we learnt? Reinforced not all carers require bereavement support BS can validate a normal grief response Normalises grief by receiving support from an ‘ordinary lay’ person Conduit carer support between death and the adjustment to their loss Provides independent support outside family, friends, social and spiritual networks Provision of anonymity and confidentiality vital Means of identifying carer’s at risk of a complicated bereavement

26. Carers comment The advantage of phone support is you are not facing a stranger, if the tears flow it’s not embarrassing…feelings can be brought out easier as you are on your own, just a beautiful, understanding voice becomes a lovely friend on the other end of the phone line Thank you