Family-Focused Care Span

  • Michelle DiGiacomoEmail author
  • Slavica Kochovska
  • Philippa Cahill
  • Claudia Virdun
  • Jane L. Phillips
Reference work entry


A family-focused care approach in palliative care recognizes the fundamental role of families in contributing to the care of people with life-limiting conditions. It is essential that healthcare providers develop understanding of families’ needs and the skills to collaborate effectively with families caring for people at the end of their lives. This chapter introduces the concept and components of family-focused palliative care. It continues with a discussion of what patients and families perceive to be the most important aspects of end-of-life care. This chapter provides information to assist healthcare providers who work with people with life-limiting conditions and their families in providing family-focused care and to identify gaps and challenges to providing such care.


  1. Acquaviva KD. LGBTQ-Inclusive hospice and palliative care: a practical guide to transforming professional practice: Harrington Park Press, New York, USA; 2017.Google Scholar
  2. Arber A, Faithfull S, Plaskota M, Lucas C, de Vries K. A study of patients with a primary malignant brain tumour and their carers: symptoms and access to services. Int J Palliat Nurs. 2010;16(1):24–30.PubMedCrossRefGoogle Scholar
  3. Australian Bureau of Statistics. Australian social trends. Canberra: Australian Bureau of Statistics; 2010.Google Scholar
  4. Bamm E, Rosenbaum P. Family-centered theory: origins, development, barriers, and supports to implementation in rehabilitation medicine. Arch Phys Med Rehabil. 2008;89(8):1618–24.PubMedCrossRefGoogle Scholar
  5. Beale EA, Sivesind D, Bruera E. Parents dying of cancer and their children. Palliat Support Care. 2004;2(04): 387–93.PubMedCrossRefGoogle Scholar
  6. Benkel I, Wijk H, Molander U. Family and friends provide most social support for the bereaved. Palliat Med. 2009;23(2):141–9.PubMedCrossRefGoogle Scholar
  7. Cahill PJ, Lobb EA, Sanderson C, Phillips JL. What is the evidence for conducting palliative care family meetings? A systematic review. Palliat Med. 2017;31(3):197–211.PubMedCrossRefGoogle Scholar
  8. Chochinov HM. Dignity and the essence of medicine: the A, B, C, and D of dignity conserving care. Br Med J. 2007;335(7612):184–7.CrossRefGoogle Scholar
  9. Collier A, Sorensen R, Iedema R. Patients’ and families’ perspectives of patient safety at the end of life: a video-reflexive ethnography study. Int J Qual Health Care. 2015;28(1):66–73.PubMedCrossRefGoogle Scholar
  10. Dehlin L, Reg LM. Adolescents’ experiences of a parent’s serious illness and death. Palliat Support Care. 2009;7(1):13–25.PubMedCrossRefGoogle Scholar
  11. Denham, S. (2016). Family-focused care and chronic illness. Family-focused nursing care. S. Denham, S. Eggenberger, P. Young N. Krumwiede. Philadelphia, F.A. Davis Company.Google Scholar
  12. DiGiacomo M, Lewis J, Nolan MT, Phillips J, Davidson PM. Transitioning from caregiving to widowhood. J Pain Symptom Manag. 2013;46(6):817–25.CrossRefGoogle Scholar
  13. Fineberg IC, Bauer A. Families and family conferencing. In: Altilio T, Otis-Green S, editors. Oxford textbook of palliative social work. New York: Oxford University Press; 2011. p. 235–49.CrossRefGoogle Scholar
  14. Fineberg IC, Kawashima M, Asch SM. Communication with families facing life-threatening illness: a research-based model for family conferences. J Palliat Med. 2011;14(4):421–7.PubMedCrossRefGoogle Scholar
  15. Gofton TE, Graber J, Carver A. Identifying the palliative care needs of patients living with cerebral tumors and metastases: a retrospective analysis. J Neuro-Oncol. 2012;108(3):527–34.CrossRefGoogle Scholar
  16. Gott M, Allen R, Moeke-Maxwell T, Gardiner C, Robinson J. ‘No matter what the cost’: a qualitative study of the financial costs faced by family and whānau caregivers within a palliative care context. Palliat Med. 2015;29(6):518–28, 511pPubMedPubMedCentralCrossRefGoogle Scholar
  17. Hanly P, Maguire R, Hyland P, Sharp L. Examining the role of subjective and objective burden in carer health-related quality of life: the case of colorectal cancer. Support Care Cancer. 2015;23(7):1941–9.PubMedCrossRefGoogle Scholar
  18. Haugen DF, Nauck F, Caraceni A. The core team and the extended team. In: Cherny NI, Fallon M, Kaasa S, Portenoy RK, Currow D, editors. Oxford textbook of palliative medicine. 5th ed. Oxford: Oxford University Press; 2015.Google Scholar
  19. Hudson P. Positive aspects and challenges associated with caring for a dying relative at home. Int J Palliat Nurs. 2004;10(2):58–65.PubMedCrossRefGoogle Scholar
  20. Hudson P, Quinn K, O’Hanlon B, Aranda S. Family meetings in palliative care: multidisciplinary clinical practice guidelines. BMC Palliat Care. 2008;7(1):12.PubMedPubMedCentralCrossRefGoogle Scholar
  21. Hudson P, Thomas T, Quinn K, Aranda S. Family meetings in palliative care: are they effective? Palliat Med. 2009;23(2):150–7.PubMedCrossRefGoogle Scholar
  22. Huizinga GA, van der Graaf WT, Visser A, Dijkstra JS, Hoekstra-Weebers JE. Psychosocial consequences for children of a parent with cancer: a pilot study. Cancer Nurs. 2003;26(3):195–202.PubMedCrossRefGoogle Scholar
  23. Isaac M, Curtis JR. Family conference. In: Yennurajalingam S, Bruera E, editors. Oxford American handbook of hospice and palliative medicine and supportive care. 2nd ed. New York: Oxford University Press; 2016.Google Scholar
  24. Johnson B, Abraham M, Conway J, Simmons L, Edgman-Levitan S, Sodomka P Ford D. Partnering with patients and families to design a patient-and family-centered health care system. Institute for Patient-and Family-Centered Care and Institute for Healthcare Improvement. Bethesda, MD: Institute for Family-Centered Care; 2008.Google Scholar
  25. Kennedy VL, Lloyd-Williams M. How children cope when a parent has advanced cancer. Psycho-Oncology. 2009;18(8):886–92.PubMedCrossRefGoogle Scholar
  26. King DA, Quill TE. Working with families in palliative care: one size does not fit all. J Palliat Med. 2006;9(3):704–15.PubMedCrossRefGoogle Scholar
  27. Kissane DW, Hempton C. Conducting a family meeting. In: Kissane DW, Bultz BD, Butow PN, et al., editors. Oxford textbook of communication in oncology and palliative care. Oxford: OUP Oxford; 2017.CrossRefGoogle Scholar
  28. Kochovska S, Luckett T, Agar M, Phillips JL. Impacts on employment, finances, and lifestyle for working age people facing an expected premature death: a systematic review. Palliat Support Care. 2017;21:1–13.Google Scholar
  29. Kristjanson LJ, Aoun S. Palliative care for families: remembering the hidden patients. Can J Psychiatr. 2004;49:359–65.CrossRefGoogle Scholar
  30. Lawton A, White J, Fromme EK. End-of-life and advance care planning considerations for lesbian, gay, bisexual, and transgender patients. J Palliat Med. 2014;17(1): 106–8.PubMedCrossRefGoogle Scholar
  31. Lethborg C, Kissane DW. The family perspective. In: Cherny NI, Fallon M, Kaasa S, Portenoy RK, Currow D, editors. Oxford textbook of palliative medicine. 5th ed. Oxford: Oxford University Press; 2015.Google Scholar
  32. Lobb EA, Kristjanson LJ, Aoun SM, Monterosso L, Halkett GK, Davies A. Predictors of complicated grief: a systematic review of empirical studies. Death Stud. 2010;34(8):673–98.PubMedCrossRefGoogle Scholar
  33. Macpherson C, Emeleus M. Children’s needs when facing the death of a parent from cancer: part one. Int J Palliat Nurs. 2007a;13(10):478–85.PubMedCrossRefGoogle Scholar
  34. MacPherson C, Emeleus M. Children’s needs when facing the death of a parent from cancer: part two. Int J Palliat Nurs. 2007b;13(12):590–7.PubMedCrossRefGoogle Scholar
  35. McCormack B, McCance T. Underpinning principles of person-centered practice. In: McCormack B, McCance T, editors. Person-centred practice in nursing and health care: theory and practice. Chichester: Wiley; 2016. p. 13–35.Google Scholar
  36. McIllmurray MB, Thomas C, Francis B, Morris S, Soothill K, Al-Hamad A. The psychosocial needs of cancer patients: findings from an observational study. Eur J Cancer Care. 2001;10(4):261–9.CrossRefGoogle Scholar
  37. Pace A, Di Lorenzo C, Guariglia L, Jandolo B, Carapella CM, Pompili A. End of life issues in brain tumor patients. J Neuro-Oncol. 2009;91(1):39–43.CrossRefGoogle Scholar
  38. Park EM, Check DK, Yopp JM, Deal AM, Edwards TP, Rosenstein DL. An exploratory study of end-of-life prognostic communication needs as reported by widowed fathers due to cancer. Psycho-Oncology. 2015;24(11):1471–6.PubMedPubMedCentralCrossRefGoogle Scholar
  39. Patterson P, Rangganadhan A. Losing a parent to cancer: a preliminary investigation into the needs of adolescents and young adults. Palliat Support Care. 2010;8(3):255–65.PubMedCrossRefGoogle Scholar
  40. Phillips F. The experience of adolescents who have a parent with advanced cancer: a phenomenological inquiry. Palliat Support Care. 2015;13(4):1057–69.PubMedCrossRefGoogle Scholar
  41. Phillips F, Lewis FM. The adolescent’s experience when a parent has advanced cancer: a qualitative inquiry. Palliat Med. 2015;29(9):851–8.PubMedCrossRefGoogle Scholar
  42. Phillips JL, Lobb E, Mohacsi P, Heneka N, Currow D. Identifying systems barriers that may prevent bereavement service access to bereaved carers: a report from an Australian specialist palliative care service. Collegian. 2018;25(1):39–43.CrossRefGoogle Scholar
  43. Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P. The unmet supportive care needs of patients with cancer. Cancer. 2000;88(1):226–37.PubMedCrossRefGoogle Scholar
  44. Shear MK, Simon N, Wall M, Zisook S, Neimeyer R, Duan N, Reynolds C, Lebowitz B, Sung S, Ghesquiere A, Gorscak B, Clayton P, Ito M, Nakajima S, Konishi T, Melhem N, Meert K, Schiff M, O’Connor M-F, First M, Sareen J, Bolton J, Skritskaya N, Mancini AD, Keshaviah A. Complicated grief and related bereavement issues for DSM-5. Depress Anxiety. 2011;28(2):103–17.PubMedPubMedCentralCrossRefGoogle Scholar
  45. Speck PW. Teamwork in palliative care: fulfilling or frustrating? Oxford: Oxford University Press; 2006.CrossRefGoogle Scholar
  46. Stephen AI, Macduff C, Petrie DJ, Tseng F-M, Schut H, Skår S, Corden A, Birrell J, Wang S, Newsom C. The economic cost of bereavement in Scotland. Death Stud. 2015;39(3):151–7.PubMedCrossRefGoogle Scholar
  47. Torenholt R, Schwennesen N, Willaing I. Lost in translation – the role of family in interventions among adults with diabetes: a systematic review. Diabet Med. 2014;31:15–23.PubMedCrossRefGoogle Scholar
  48. Virdun C, Luckett T, Davidson PM, Phillips J. Dying in the hospital setting: a systematic review of quantitative studies identifying the elements of end-of-life care that patients and their families rank as being most important. Palliat Med. 2015;29(9):774–96.PubMedPubMedCentralCrossRefGoogle Scholar
  49. Virdun C, Luckett T, Lorenz K, Davidson PM, Phillips J. Dying in the hospital setting: a meta-synthesis identifying the elements of end-of-life care that patients and their families describe as being important. Palliat Med. 2017;31(7):587–601.PubMedCrossRefGoogle Scholar
  50. Wellisch DK. Family issues and palliative care. In: Chochinov HM, Breitbart W, editors. Handbook of psychiatry in palliative medicine. New York: Oxford University Press; 2000. p. 275–89.Google Scholar
  51. Williams AM, Wang L, Kitchen P. Differential impacts of care-giving across three caregiver groups in Canada: end-of-life care, long-term care and short-term care. Health Soc Care Community. 2014;22(2):187–96.PubMedCrossRefGoogle Scholar
  52. Wittenberg E, Goldsmith J, Ferrell B, Ragan SL. Promoting improved family caregiver health literacy: evaluation of caregiver communication resources. Psycho-Oncology. 2017;26(7):935–42.PubMedCrossRefGoogle Scholar
  53. Wong WK, Ussher J, Perz J. ‘Strength through adversity: bereaved cancer carers’ accounts of rewards and personal growth from caring. Palliat Support Care. 2009;7(2):187–96.PubMedCrossRefGoogle Scholar
  54. World Health Organisation. WHO definition of palliative care. 2018. Retrieved 6 Jan 2018, from
  55. Wright F. Family-focused care. In: Kaplow R, Hardin S, editors. Critical care nursing: synergy for optimal outcomes. Boston: Jones and Bartlett; 2007. p. 15–26.Google Scholar

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  • Michelle DiGiacomo
    • 1
    Email author
  • Slavica Kochovska
    • 1
  • Philippa Cahill
    • 2
  • Claudia Virdun
    • 1
  • Jane L. Phillips
    • 3
    • 4
  1. 1.Improving Palliative, Aged, and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of HealthUniversity of Technology SydneyUltimoAustralia
  2. 2.School of MedicineThe University of Notre Dame AustraliaDarlinghurstAustralia
  3. 3.Faculty of Health, Improving Palliative, Aged and Chronic Care Through Clinical Research and TranslationUniversity of Technology SydneyUltimoAustralia
  4. 4.School of NursingUniversity of Notre Dame Australia-SydneyDarlinghurstAustralia

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