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Peer-Reviewed Articles

Informing Social Work Practice Through Research With Parent Caregivers of a Child With a Life-Limiting Illness

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Pages 356-381 | Received 04 Nov 2011, Accepted 27 Jul 2012, Published online: 29 Nov 2012

REFERENCES

  • Aldwin , C. M. , Levenson , M. R. , & Spiro , A. , 3rd. ( 1994 ). Vulnerability and resilience to combat exposure: Can stress have lifelong effects? Psychology and Aging , 9 ( 1 ), 34 – 44 .
  • Ashby , M. A. , Kosky , R. J. , Laver , H. T. , & Sims , E. B. ( 1991 ). An enquiry into death and dying at the Adelaide Children's Hospital: A useful model? The Medical Journal of Australia , 154 ( 3 ), 165 – 170 .
  • Association for Children with Life-Threatening or Terminal Conditions, & their Families (ACT), Royal College of Paediatrics, & Child Health (RCPHC) . ( 2003 ). A Guide to the development of children's palliative care services . Bristol : UK .
  • Barakat , L. P. , Alderfer , M. A. , & Kazak , A. E. ( 2006 ) Posttraumatic growth in adolescent survivors of cancer and their mothers and fathers . Journal Pediatric Psychology , 31 ( 4 ), 413 – 441 .
  • Begun , A. ( 1993 ). Human behavior and the social environment: The vulnerability, risk, and resilience model . Journal of Social Work Education , 29 ( 1 ), 26 – 35 .
  • Benini , F. , Spizzichino , M. , Trapanotto , M. , & Ferrante , A. ( 2008 ). Pediatric palliative care . Italian Journal of Pediatrics , 34 ( 4 ). doi:10.1186/1824–7288-34–4
  • Bluebond-Langner , M. , Belasco , J. B. , Goldman , A. , & Belasco , C. ( 2007 ). Understanding parents' approaches to care and treatment of children with cancer when standard therapy has failed . Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology , 25 ( 17 ), 2414 – 2419 . doi: 10.1200/JCO.2006.08.7759
  • Burt , M. A. , & Katz , B. L. ( 1987 ). Dimensions of recovery from rape: Focus on growth outcomes . Journal of Interpersonal Violence , 2 ( 1 ), 57 – 81 .
  • Cadell , S. ( 2007 ). The sun always comes out after it rains: Understanding posttraumatic growth in HIV carers . Health & Social Work , 32 ( 3 ), 169 – 176 .
  • Cadell , S. ( 2012 ). Stress, coping, growth and spirituality in grief . In J. Groen , D. Coholic , & J. Graham (Eds.), Spirituality in education and social work: An interdisciplinary dialogue . Waterloo , ON , Canada : Wilfrid Laurier Press .
  • Cadell , S. , & Sullivan , R. (2006). Posttraumatic growth and HIV bereavement: Where does it start and when does it end? Traumatology , 12(1), 45–59.
  • Cadell , S. , Regehr , C. , & Hemsworth , D. ( 2003 ). Factors contributing to post-traumatic growth: A proposed structural equation model . American Journal of Orthopsychiatry , 73 ( 3 ), 279 – 287 .
  • Calhoun , L. G. , & Tedeschi , R. G. ( 1990 ). Positive aspects of critical life problems: Recollections of grief . Omega , 20 ( 4 ), 265 – 272 .
  • Contro , N. , Larson , J. , Scofield , S. , Sourkes , B. , & Cohen , H. ( 2002 ). Family perspectives on the quality of pediatric palliative care . Archives of Pediatric & Adolescent Medicine , 56 ( 1 ), 14 – 19 .
  • Corden , A. , Sloper , P. , & Sainsbury , R. ( 2002 ). Financial effects for families after the death of a disabled or chronically ill child: A neglected dimension of bereavement . Child: Care, Health, & Development , 28 , 199 – 204 .
  • Davies , B. , & Howell , D. ( 1998 ). Special services for children . In D. Doyle , G. Hanks , & N. MacDonald (Eds.), Oxford textbook of palliative medicine , ( , 2nd ed. , pp. 1077 – 1084 ). Oxford , United Kingdom : Oxford University Press .
  • Davies , B. , Gudmundsdottir , M. , Worden , B. , Orloff , S. , Sumner , L. , & Brenner , P. ( 2004 ). “Living in the dragon's shadow”: Fathers' experiences of a child's life-limiting illness . Death Studies , 28 ( 2 ), 111 – 135 .
  • Davies , B. , Widger , K. , Steele , R. , Cadell , S. , Siden , H. , & Straatman , L. ( 2011 ). Research considerations in pediatric palliative care . In J. Wolfe , B. Sourkes , & P. Hinds (Eds.), Textbook of interdisciplinary pediatric palliative care , ( , 1st ed. , pp. 96 – 103 ). Philadelphia , PA : Saunders .
  • Dunn , D. S. ( 1994 ). Positive meaning and illusions following disability: Reality negotiation, normative interpretation, and value change . Journal of Social Behavior and Personality , 9 ( 5 ), 123 – 138 .
  • Elder , G. H. , & Clipp , E. C. ( 1989 ). Combat experience and emotional health: Impairment and resilience in later life . Journal of Personality , 57 ( 2 ), 311 – 341 .
  • Folkman , S. ( 1997 ). Positive psychological states and coping with severe stress . Social Science & Medicine (1982) , 45 ( 8 ), 1207 – 1221 . doi: S0277953697000403 [pii]
  • Frantz , T. T. , Trolley , B. C. , & Farrell , M. M. ( 1998 ). Positive aspects of grief . Pastoral Psychology , 47 ( 1 ), 3 – 17 .
  • Gilmer , M. J. , Foster , T. L. , Bell , C. J. , Mulder , J. , & Carter , B. S. ( 2012 ). Parental perceptions of care of children at end of life. American Journal of Hospice Palliative Medicine. Advance online publication. doi:10.1177/1049909112440836
  • Goldman , A. ( 1996 ). Home care of the dying child . Journal of Palliative Care , 12 ( 3 ), 16 – 19 .
  • Ickovics , J. R. , & Park , C. L. ( 1998 ). Paradigm shift: Why a focus on health is important . Journal of Social Issues , 54 ( 2 ), 237 – 244 .
  • Jones , B. ( 2005 ). Pediatric palliative and end-of-life care: The role of social work in pediatric oncology . Journal of Social Work in End-of-Life & Palliative Care , 1 ( 4 ), 35 – 62 .
  • Joseph , S. , & Linley , P. A. ( 2008 ). Trauma, recovery, and growth: Positive psychological perspectives on posttraumatic stress . Hoboken , NJ : John Wiley .
  • Kessler , B. G. ( 1987 ). Bereavement and personal growth . Journal of Humanistic Psychology , 27 ( 2 ), 228 – 247 .
  • Kumar , S. P. (2011). Reporting of pediatric palliative care: A systematic review and quantitative analysis of research publications in palliative care journals. Indian Journal of Palliative Care , 17(3), 202–209.
  • Lazarus , R. S. , & Folkman , S. ( 1984 ). Stress, appraisal, and coping . New York , NY : Springer .
  • Lehman , D. R. , Davis , C. G. , Delongis , A. , Wortman , C. B. , Bluck , S. , Mandel , D. R. , & Ellard , J. H. ( 1993 ). Positive and negative life changes following bereavement and their relations to adjustment . Journal of Social and Clinical Psychology , 12 ( 1 ), 90 – 112 .
  • Liben , S. , Papadatou , D. , & Wolfe , J. ( 2008 ). Paediatric palliative care: Challenges and emerging ideas . Lancet , 371 , 852 – 864 . doi: 10.1016/S0140–6736(07)61203–3
  • Macdonald , M. E. , Chilibeck , G. , Affleck , W. , & Cadell , S. ( 2010 ). Gender imbalance in pediatric palliative care research samples . Palliative Medicine , 24 ( 4 ), 435 – 444 .
  • Masten , A. S. , Best , K. M. , & Garmezy , N. ( 1990 ). Resilience and development: Contributions from the study of children who overcome adversity . Development and Psychopathology , 2 , 425 – 444 .
  • Masten , A. S. , Best , K. M. , & Garmezy , N. ( 1994 ). Resilience in individual development: Successful adaptation despite risk and adversity . In M. C. Wang , & E. W. Gordon (Eds.), Educational resilience in inner-city America: Challenges and prospects , (pp. 3 – 25 ). Hillsdale , NJ : Lawrence Erlbaum Associates .
  • McMillen , J. C. ( 1999 ). Better for it: How people benefit from adversity . Social Work , 44 ( 5 ), 455 – 468 .
  • McMillen , J. C. , & Cook , C. L. ( 2003 ). The positive by-products of spinal cord injury and their correlates . Rehabilitation Psychology , 48 ( 2 ), 77 – 85 .
  • McMillen , J. C. , & Fisher , R. ( 1998 ). The perceived benefit scales: Measuring perceived positive life changes after negative events . Social Work Research , 22 , 173 – 187 .
  • McMillen , C. , Howard , M. O. , Nower , L. , & Chung , S. ( 2001 ). Positive by-products of the struggle with chemical dependency . Journal of Substance Abuse Treatment , 20 ( 1 ), 69 – 79 . doi: S0740547200001513 [pii]
  • Monterosso , L. , Kristjanson , L. J. , Aoun , S. , & Phillips , M. B. ( 2007 ). Supportive and palliative care needs of families of children with life-threatening illnesses in Western Australia: Evidence to guide the development of a palliative care service . Palliative Medicine , 21 , 689 – 696 .
  • Morrod , D. ( 2004 ). Make or break—Who cares for couples when their children are sick? Sexual and Relationship Therapy , 19 , 247 – 263 .
  • Park , C. L. , Cohen , L. H. , & Murch , R. L. ( 1996 ). Assessment and prediction of stress-related growth . Journal of Personality , 64 ( 1 ), 71 – 105 .
  • Parker , M. ( 1996 ). Families caring for chronically ill children with tuberous sclerosis complex . Family and Community Health , 19 , 73 – 85 .
  • Rapoport , A. , Beaune , L. , Weingarten , K. , Rugg , M. , & Newman , C. ( 2012 ). Living life to the fullest: Early integration of palliative care into the lives of children with chronic complex conditions . Current Pediatric Reviews , 8 ( 2 ), 152 – 165 .
  • Scannapieco , M. , & Jackson , S. ( 1996 ). Kinship care: The African American response to family preservation . Social Work , 41 ( 2 ), 190 – 196 .
  • Schneider , M. , Steele , R. , Cadell , S. , & Hemsworth , D. ( 2011 ). Differences on psychosocial outcomes between male and female caregivers of children with life-limiting illnesses . Journal of Pediatric Nursing , 26 ( 3 ), 186 – 199 .
  • Silver , R. L. , Boon , C. , & Stones , M. H. (1983). Searching for meaning in misfortune: Making sense of incest. Journal of Social Issues , 39(2), 81–101.
  • Steele , R. G. ( 2000 ). Trajectory of certain death at an unknown time: Children with neurodegenerative life-threatening illnesses . The Canadian Journal of Nursing Research (Revue Canadienne De Recherche En Sciences Infirmieres) , 32 ( 3 ), 49 – 67 .
  • Steele , R. , & Davies , B. ( 2006 ). Impact on parents when a child has a progressive, life-threatening illness . International Journal of Palliative Nursing , 12 , 576 – 585 .
  • Tedeschi , R. G. , & Calhoun , L. G. ( 1995 ). Trauma and transformation: Growing in the aftermath of suffering . Thousand Oaks , CA : Sage .
  • Tedeschi , R. G. , & Calhoun , L. G. ( 1996 ). The Posttraumatic Growth Inventory: Measuring the positive legacy of trauma . Journal of Traumatic Stress , 9 ( 3 ), 455 – 471 .
  • Tedeschi , R. G. , Park , C. L. , & Calhoun , L. G. ( 1998 ). Posttraumatic growth: Positive changes in the aftermath of crisis . Mahwah , NJ : Lawrence Erlbaum Associates .
  • Thompson , S. C. ( 1985 ). Finding positive meaning in a stressful event and coping . Basic and Applied Social Psychology , 6 ( 4 ), 279 – 295 .
  • Thornton , A. A. , & Perez , M. A. ( 2006 ), Posttraumatic growth in prostate cancer survivors and their partners . Psycho-Oncology , 15 , 285 – 296 .

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