Gibson, F.

Greenfield, S.

Neilson, Susan

University of Worcester Research and Publications

! !!!FindingsMethodGP reflectionsInitiating contactGPs recognised that not all parents would needsupport but were unclear how to identify thosethat did.“I don’t want to keep pestering them but just want tolet them know ... I’m here if they do need help.” (GP11)“I guess we expect them to ask for  (bereavementsupport).” (GP 9) Level of contactThe type of bereavement contact had changedfrom face to face to telephone or letter.“In the past we used to do more bereavement visitsbut you just can't do that anymore ... It’ more of atelephone call really just to pass on condolences...”(GP20) Time pressuresGPs reported a change in practice with timepressures now making it virtually impossible toundertake home bereavement visits.“With pressures on time within general practice it’sgetting increasingly hard to do the job as it should bedone.” (GP 1) Bereavement guidelinesNone of the GPs had access to a local bereavementpolicy nor had undertaken bereavement coursesoutside of their basic training. Practice wasdetermined by the individual GP.“..you do it from the heart don’t you? ...as yourpersonality dictates.” (GP17)SummaryBackgroundProvision of bereavement help and support hastraditionally been seen as within the remit ofgeneral practice, but little is actually knownabout the support offered by GPs to parents whohave been bereaved through a childhood cancerdeath.Bereavement support in this context is rare forGPs but bereavement from child cancer deathsare relatively high compared to bereavementfrom other childhood diseases. The GP is the key community based healthprofessional with a long-term role in providingon-going medical care to the family. Parental bereavement from a childhoodcancer death can be one of the most stressful lifeevents faced. Effects are unique to each parent andsupport needs to be individually tailored. Inequity of bereavement services and both  theproficiency of bereavement assessmentsupport offered exists, with little known aboutthe GP’s actual role in bereavement. The unique model of palliative care that exists forchildren with cancer necessitates goodcommunication between primary and secondarycare in the planning and provision ofbereavement support. This is a summary of independent research funded by the National Institute for Health Research (NIHR)’sNIHR/CNO Clinical Lectureship programme. The views expressed are those of the authors, and notnecessarily those of the NHS, the NIHR or the Department of Health. Dr!Sue!Neilson,!School!of!Health!and!Popula7on!Studies,!University!of!Birmingham,!Edgbaston,!Birmingham,!B15!2TT.s.j.neilson@bham.ac.uk!!!!!!Telephone:!0121!333!9600•GPs have a role in ensuring an equitable, coordinated and consistent approach to                     bereavement support. • Direct contact prior to and following the death facilitates opportunities for assessmentand clarification of both the GPs role and the level and content of support being offered. • Parents appreciate GP contact but may require validation of their need to be seen. • Bereavement guidelines may help standardise support and be a specialist resource toGPs. •  Coordination of support between primary and secondary care is important.    Parent reflectionsContact methodThe five parents who had seen their GP describedthe contact as positive and perceived havingbeen given permission to make futureappointments if needed. Telephone contact wasappreciated with text being seen as anacceptable form of contact.“ (The GP would send)... a little text asking how Iam.” (Parent 24) Lack of clarity of GP roleParents did not always see their GP as someonethey could go to for help in bereavement.“I don’t want to waste (their) time.” (Parent 24)There was an identified need for validation fromthe GP that an appointment was appropriate useof their time.“My GP said I want you to come and see me. I docare about you, you are my patient.” (Parent 24) Validation of contactReluctance of bereaved parents to make contactwith their GP  due to lack of  role clarity andparent uncertainty may have contributed toidentified missed opportunities for validconsultations.“... You go if you’re unwell ... You have to approachthem … I  wouldn’t have expected the GP to comeand do a home visit ... I don’t know if that can bechanged because I do find bereavement a deep,dark place. There seems no purpose in life now.Nothing.”  (Parent 13)     IntroductionA community based qualitative study. Sample: GPs who had cared for a child (aged 0-18years) with cancer who had died within thefamily home and the bereaved parents. Participants were contacted by letter (GPs at 3months and parents 6 months) after the child’sdeath inviting them to participate. 1:1 semi-structured tape recorded  interviewswere undertaken with 18 general practitionersand 11 bereaved families. Grounded  theory analysis: chronologicalcomparative data analysis identifyinggenerated themes.Sue Neilson 1,2 Sheila Greenfield2  Faith Gibson3Birmingham Children's Hospital1, School of Health and Population Studies, University of Birmingham2Great Ormond Street Hospital for Children and London South Bank University 3SUPPORTING BEREAVED PARENTS:GP AND PARENT REFLECTIONS

Supporting Bereaved Parents: GP and Parent Reflections

http://eprints.worc.ac.uk/4779/1/Supporting%20Bereaved%20Parents%20-%20GP%20and%20parent%20reflections%20Sue%20Neilson%20final.pdf

Supporting Bereaved Parents: GP and Parent Reflections

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University of Worcester Research and Publications