Supporting bereaved parents: a phenomenological study of a telephone intervention programme in a paediatric oncology unit

Authors

  • Philip Darbyshire,

    1. Authors:Philip Darbyshire, PhD, RNT, MN, Director, Philip Darbyshire Consulting, Adelaide, SA, Professor, School of Nursing and Midwifery, Monash University, Caulfield, Vic., Adjunct Professor, School of Nursing and Midwifery, University of Western Sydney, Sydney, Australia and Honorary Visiting Professor, College of Human and Health Sciences, Swansea University, Wales, UK; Alexandra Cleghorn, RN, Nurse Education Facilitator, Women’s and Children’s Hospital, Adelaide, SA; Maeve Downes, RGN, RSCN, Safety Quality & Risk Consultant, Clinical Governance Unit, Women’s and Children’s Hospital, Adelaide, SA; Joanna Elford, MPsych, BBSc, Psychologist, Families SA, DECD, SA; Anne Gannoni, PhD, MPsych, BA, Chief Clinical Psychologist, Department of Psychological Medicine, Women’s and Children’s Hospital, Adelaide, SA; Cheryl McCullagh, RN, BN, MHSM, The Sydney Children’s Hospitals Network, Westmead, NSW; Rosalyn Shute, PhD, BSc, Adjunct Professor of Psychology, Flinders University, Adelaide, SA and University of Ballarat, Ballarat, Vic., Australia
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  • Alexandra Cleghorn,

    1. Authors:Philip Darbyshire, PhD, RNT, MN, Director, Philip Darbyshire Consulting, Adelaide, SA, Professor, School of Nursing and Midwifery, Monash University, Caulfield, Vic., Adjunct Professor, School of Nursing and Midwifery, University of Western Sydney, Sydney, Australia and Honorary Visiting Professor, College of Human and Health Sciences, Swansea University, Wales, UK; Alexandra Cleghorn, RN, Nurse Education Facilitator, Women’s and Children’s Hospital, Adelaide, SA; Maeve Downes, RGN, RSCN, Safety Quality & Risk Consultant, Clinical Governance Unit, Women’s and Children’s Hospital, Adelaide, SA; Joanna Elford, MPsych, BBSc, Psychologist, Families SA, DECD, SA; Anne Gannoni, PhD, MPsych, BA, Chief Clinical Psychologist, Department of Psychological Medicine, Women’s and Children’s Hospital, Adelaide, SA; Cheryl McCullagh, RN, BN, MHSM, The Sydney Children’s Hospitals Network, Westmead, NSW; Rosalyn Shute, PhD, BSc, Adjunct Professor of Psychology, Flinders University, Adelaide, SA and University of Ballarat, Ballarat, Vic., Australia
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  • Maeve Downes,

    1. Authors:Philip Darbyshire, PhD, RNT, MN, Director, Philip Darbyshire Consulting, Adelaide, SA, Professor, School of Nursing and Midwifery, Monash University, Caulfield, Vic., Adjunct Professor, School of Nursing and Midwifery, University of Western Sydney, Sydney, Australia and Honorary Visiting Professor, College of Human and Health Sciences, Swansea University, Wales, UK; Alexandra Cleghorn, RN, Nurse Education Facilitator, Women’s and Children’s Hospital, Adelaide, SA; Maeve Downes, RGN, RSCN, Safety Quality & Risk Consultant, Clinical Governance Unit, Women’s and Children’s Hospital, Adelaide, SA; Joanna Elford, MPsych, BBSc, Psychologist, Families SA, DECD, SA; Anne Gannoni, PhD, MPsych, BA, Chief Clinical Psychologist, Department of Psychological Medicine, Women’s and Children’s Hospital, Adelaide, SA; Cheryl McCullagh, RN, BN, MHSM, The Sydney Children’s Hospitals Network, Westmead, NSW; Rosalyn Shute, PhD, BSc, Adjunct Professor of Psychology, Flinders University, Adelaide, SA and University of Ballarat, Ballarat, Vic., Australia
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  • Joanna Elford,

    1. Authors:Philip Darbyshire, PhD, RNT, MN, Director, Philip Darbyshire Consulting, Adelaide, SA, Professor, School of Nursing and Midwifery, Monash University, Caulfield, Vic., Adjunct Professor, School of Nursing and Midwifery, University of Western Sydney, Sydney, Australia and Honorary Visiting Professor, College of Human and Health Sciences, Swansea University, Wales, UK; Alexandra Cleghorn, RN, Nurse Education Facilitator, Women’s and Children’s Hospital, Adelaide, SA; Maeve Downes, RGN, RSCN, Safety Quality & Risk Consultant, Clinical Governance Unit, Women’s and Children’s Hospital, Adelaide, SA; Joanna Elford, MPsych, BBSc, Psychologist, Families SA, DECD, SA; Anne Gannoni, PhD, MPsych, BA, Chief Clinical Psychologist, Department of Psychological Medicine, Women’s and Children’s Hospital, Adelaide, SA; Cheryl McCullagh, RN, BN, MHSM, The Sydney Children’s Hospitals Network, Westmead, NSW; Rosalyn Shute, PhD, BSc, Adjunct Professor of Psychology, Flinders University, Adelaide, SA and University of Ballarat, Ballarat, Vic., Australia
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  • Anne Gannoni,

    1. Authors:Philip Darbyshire, PhD, RNT, MN, Director, Philip Darbyshire Consulting, Adelaide, SA, Professor, School of Nursing and Midwifery, Monash University, Caulfield, Vic., Adjunct Professor, School of Nursing and Midwifery, University of Western Sydney, Sydney, Australia and Honorary Visiting Professor, College of Human and Health Sciences, Swansea University, Wales, UK; Alexandra Cleghorn, RN, Nurse Education Facilitator, Women’s and Children’s Hospital, Adelaide, SA; Maeve Downes, RGN, RSCN, Safety Quality & Risk Consultant, Clinical Governance Unit, Women’s and Children’s Hospital, Adelaide, SA; Joanna Elford, MPsych, BBSc, Psychologist, Families SA, DECD, SA; Anne Gannoni, PhD, MPsych, BA, Chief Clinical Psychologist, Department of Psychological Medicine, Women’s and Children’s Hospital, Adelaide, SA; Cheryl McCullagh, RN, BN, MHSM, The Sydney Children’s Hospitals Network, Westmead, NSW; Rosalyn Shute, PhD, BSc, Adjunct Professor of Psychology, Flinders University, Adelaide, SA and University of Ballarat, Ballarat, Vic., Australia
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  • Cheryl McCullagh,

    1. Authors:Philip Darbyshire, PhD, RNT, MN, Director, Philip Darbyshire Consulting, Adelaide, SA, Professor, School of Nursing and Midwifery, Monash University, Caulfield, Vic., Adjunct Professor, School of Nursing and Midwifery, University of Western Sydney, Sydney, Australia and Honorary Visiting Professor, College of Human and Health Sciences, Swansea University, Wales, UK; Alexandra Cleghorn, RN, Nurse Education Facilitator, Women’s and Children’s Hospital, Adelaide, SA; Maeve Downes, RGN, RSCN, Safety Quality & Risk Consultant, Clinical Governance Unit, Women’s and Children’s Hospital, Adelaide, SA; Joanna Elford, MPsych, BBSc, Psychologist, Families SA, DECD, SA; Anne Gannoni, PhD, MPsych, BA, Chief Clinical Psychologist, Department of Psychological Medicine, Women’s and Children’s Hospital, Adelaide, SA; Cheryl McCullagh, RN, BN, MHSM, The Sydney Children’s Hospitals Network, Westmead, NSW; Rosalyn Shute, PhD, BSc, Adjunct Professor of Psychology, Flinders University, Adelaide, SA and University of Ballarat, Ballarat, Vic., Australia
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  • Rosalyn Shute

    1. Authors:Philip Darbyshire, PhD, RNT, MN, Director, Philip Darbyshire Consulting, Adelaide, SA, Professor, School of Nursing and Midwifery, Monash University, Caulfield, Vic., Adjunct Professor, School of Nursing and Midwifery, University of Western Sydney, Sydney, Australia and Honorary Visiting Professor, College of Human and Health Sciences, Swansea University, Wales, UK; Alexandra Cleghorn, RN, Nurse Education Facilitator, Women’s and Children’s Hospital, Adelaide, SA; Maeve Downes, RGN, RSCN, Safety Quality & Risk Consultant, Clinical Governance Unit, Women’s and Children’s Hospital, Adelaide, SA; Joanna Elford, MPsych, BBSc, Psychologist, Families SA, DECD, SA; Anne Gannoni, PhD, MPsych, BA, Chief Clinical Psychologist, Department of Psychological Medicine, Women’s and Children’s Hospital, Adelaide, SA; Cheryl McCullagh, RN, BN, MHSM, The Sydney Children’s Hospitals Network, Westmead, NSW; Rosalyn Shute, PhD, BSc, Adjunct Professor of Psychology, Flinders University, Adelaide, SA and University of Ballarat, Ballarat, Vic., Australia
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Philip Darbyshire, Director, Philip Darbyshire Consulting, PO Box 144, Highbury 5089, SA, Australia. Telephone: +61 (0) 430079597.
E-mail:philip@philipdarbyshire.com.au

Abstract

Aims and objectives.  This study sought to discover bereaved parents’ perspectives and experiences of a nurse-led, ward-based, telephone support programme in a children’s oncology unit.

Background.  Parental grief is especially intense and long-lasting, and many parents can experience serious psychological problems. The oncology team learned that some parents felt ‘forgotten’ or ‘abandoned’ following their child’s death and addressed this concern by initiating and subsequently evaluating a telephone bereavement support programme.

Design.  An interpretive phenomenological investigation of the experiences of six parents who participated in the programme.

Methods.  Parents shared their experiences and perceptions of the programme in individual interviews. Interpretive phenomenology and thematic analysis guided the interviews’ interpretation to ascertain both the parents’ experiences of the programme and their understandings of everyday clinical terms such as ‘support’ or ‘reassurance’.

Results.  Parents found the programme supportive, especially valuing ongoing contact with a nurse who ‘knew them’. Telephone contact was preferred to visiting the hospital, which brought back painful memories. Calls were important elements in helping parents create meaning and memory around their deceased child.

Conclusions.  Regular telephone contact over an agreed period from a familiar member of the child’s treating team can create a more positive and supportive bereavement experience for parents in the year following their child’s death. The specific findings are discussed in the context of the death of a child as a crisis of meaning.

Relevance to clinical practice.  Clinical nurses are ideally placed to use existing close relationships to extend care and support to bereaved parents. This study shows how nurses can identify service gaps, work with interdisciplinary team colleagues to initiate appropriate actions and participate in the essential evaluation subsequently required.

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