A qualitative investigation of fathers' experiences of looking after a child with a life-limiting illness, in process and in retrospect

Clinical Child Psychology and Psychiatry

Volumn 12, Issue 4, 2007, Pages 549-565

  Ware, Jane ^a,c   Raval, Hitesh ^b  

^a KENT AND MEDWAY NHS AND SOCIAL CARE PARTNERSHIP TRUST   (United Kingdom)

^b UNIVERSITY OF ESSEX   (United Kingdom)

^c CAMHS   (United Kingdom)

Author keywords

Childhood life limiting illness; Fathers; Gender differences; Impact of illness; Interpretative Phenomenological Analysis (IPA)

Indexed keywords

ARTICLE; CHILD CARE; CHILD HEALTH; CHILD PARENT RELATION; CLINICAL PRACTICE; COPING BEHAVIOR; DEATH; EMOTIONALITY; HUMAN; INTERVIEW; MEDICAL RESEARCH; PARENTAL BEHAVIOR; PERCEPTION; PHENOMENOLOGY; QUALITATIVE RESEARCH;

ADAPTATION, PSYCHOLOGICAL; ADULT; ATTITUDE TO DEATH; CAREGIVERS; CHILD; CHRONIC DISEASE; FATHER-CHILD RELATIONS; FATHERS; FEMALE; GENDER IDENTITY; GRIEF; HOME NURSING; HUMANS; INTERVIEW, PSYCHOLOGICAL; LIFE CHANGE EVENTS; MALE; MARRIAGE; PALLIATIVE CARE; PROFESSIONAL-FAMILY RELATIONS; SOCIAL SUPPORT; TERMINAL CARE;

EID: 35448992073     PISSN: 13591045     EISSN: 14617021     Source Type: Journal    
DOI: 10.1177/1359104507080981     Document Type: Article

References (42)

1. Association for Children with Life-threatening or Terminal Conditions and their Families. (ACT). (2001). Palliative care for young people 13-24. A joint report by ACT, National Council for Hospice and Specialist Palliative Care and Scottish Partnership Agency for Palliative and Cancer Care. Bristol: Author.
2. Association for Children with Life-threatening or Terminal Conditions and their Families. (ACT). (2003). Voices for change: Current perceptions of services for children with palliative care needs and their families. Bristol: Author.
3. Chesler, M.A., & Parry, C. (2001). Gender roles and/or styles in crisis: An integrative analysis of the experiences of fathers of children with cancer. Qualitative Health Research, 11, 363 - 384.
4. Clarke, J.N., & Fletcher, P. (2004). Parents as advocates: Stories of surplus suffering when a child is diagnosed and treated for cancer. Social Work In Health Care, 39, 107 - 127.
5. 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, 111 - 135.
6. Davies, R., Davis, B., & Sibert, J. (2003). Parents' stories of sensitive and insensitive care by paediatricians in the time leading up to and including diagnostic disclosure of a life-limiting condition in their child. Child: Care, Health and Development, 29, 77 - 82.
7. Department of Health. (2004). National service framework for children, young people and maternity services: Disabled children and young people and those with complex health needs (standard 8). London: Author.
8. Eagly, A.H., Beall, A.E., & Sternberg, R.J. (Eds.). (2004). The psychology of gender (2 nd Ed.). New York: The Guilford Press.
9. Eiser, C. (1996). Helping the child with chronic disease: Themes and directions. Clinical Child Psychology and Psychiatry, 1, 551 - 561.
10. Elliott, R., Fischer, C.T., & Rennie, D. (1999). Evolving guidelines for publication of qualitative research studies in psychology and related fields. British Journal of Clinical Psychology, 38, 215 - 229.
11. Frosh, S. (1995). Unpacking masculinity. In C. Burck & B. Speed (Eds.), Gender, power and relationships. London: Routledge.
12. Goldman, A. (1998). ABC of palliative care: Special problems of children. British Medical Journal, 316, 49 - 52.
13. Hardley, M. (1998). The social context of health. Buckingham: Open University Press.
14. Hodgkinson, R., & Lester, H. (2002). Stresses and coping strategies of mothers living with a child with cystic fibrosis: Implications for nursing professionals. Journal of Advanced Nursing, 39, 377 - 383.
15. Hunt, A. (2003). Parents experience of caring for a child with life-limiting or life-threatening illness. PaedPalLit, 2, 8 - 10.
16. Jorm, A.F. (1994). Characteristics of Australians who reported consulting a psychologist for a health problem: An analysis of data from the 1989-1990 national health survey. Australian Psychologist, 29, 212 - 215.
17. Katz, S. (2002). When the child's illness is life threatening: Impact on the parents. Pediatric Nursing, 28, 453 - 463.
18. Kellehear, A. (1998). Health and the dying person. In A. Peterson & C. Waddell (Eds.). Health matters: A sociology of illness, prevention and care. Buckingham: Open University Press.
19. Lee, C., & Owens, R.G. (2002). The psychology of men's health. Buckingham: Open University Press.
20. Lenton, S., Stallard, K., Lewis, M., & Mastroyannopoulou, K. (2001). Prevalence and morbidity associated with non-malignant, life-threatening conditions. Child: Care, Health and Development, 27, 389 - 398.
21. McNeil, T. (2004). Fathers' experience of parenting a child with juvenile rheumatoid arthritis. Qualitative Health Research, 14, 526 - 545.
22. Mastroyannopoulou, K., Stallard, P., Lewis, M., & Lenton, S. (1997). The impact of childhood non-malignant life-threatening illness on parents: gender differences and predictors of parental adjustment. Journal of Child Psychology and Psychiatry, 38, 823 - 829.
23. Mays, N., & Pope, C. (2000). Assessing quality in qualitative research. British Medical Journal, 320, 50 - 52.
24. Menzies Lyth, I.E.P. (1988). Containing anxiety in institutions: Selected essays. London: Free Association Books.
25. Nightingale, D., & Cromby, J. (1999). Social constructionist psychology: A critical analysis of theory and practice. Buckingham: Open University Press.
26. Phares, V., Lopez, E., Fields, S., Kamboukos, D., & Duhig, A.M. (2005). Are fathers involved in pediatric psychology research and treatment? Journal of Pediatric Psychology, 30, 631 - 643.
27. Price, J., & Leaver, L. (2002). Beginning treatment. British Medical Journal, 325, 33 - 35.
28. Sloper, P. (2000). Prediction of distress in parents of children with cancer: A prospective study. Journal of Pediatric Psychology, 25, 79 - 91.
29. Smith, J.A. (1995). Semi-structured interviewing and qualitative analysis. In J.A. Smith, R. Harré, & L. Van Langenhove (Eds.), Rethinking methods in psychology. London: SAGE.
30. Smith, J.A. (Ed.). (2003). Qualitative psychology: A practical guide to research methods. London: SAGE Publications.
31. Smith, J.A. (2004). Reflecting on the development of interpretative phenomenological analysis and its contribution to qualitative research in psychology. Qualitative Research, 1, 30 - 54.
32. Smith, J.A., Jarman, M., & Osborn, M. (1999). Doing interpretative phenomenological analysis. In M. Murray & K. Chamberlain (Eds.). Qualitative health psychology: Theories and methods. London: SAGE Publications.
33. Smith, J.A., & Osborn, M. (2003). Interpretative phenomenological analysis. In J.A. Smith (Ed.), Qualitative psychology: A practical guide to research methods. London: SAGE Publications.
34. Steedman, P.H. (1991). On the relations between seeing, interpreting and knowing. In F. Steier (Ed.), Research and reflexivity. London: SAGE Publications.
35. Steele, R.G. (2002). Experiences of families in which a child has a prolonged terminal illness: Modifying factors. International Journal of Palliative Nursing, 8, 418 - 434.
36. Sutherland, R., Hearn, J., Baum, D., & Elston, S. (1994). Definitions in paediatric palliative care. Health Trends, 25, 148 - 150.
37. Tudiver, F., & Talbot, Y. (1997). Why don't men seek help? Family physicians' perspectives on help-seeking behaviour in men. Journal of Family Practice, 48, 47 - 52.
38. Turpin, G., Barley, V., Scaife, J., Slade, P., Smith, J.A., & Walsh, S. (1997). Standards for research projects and theses involving qualitative methods: Suggested guidelines for trainees and courses. Clinical Psychology Forum, 108, 3 - 7.
39. Wallander, J.L., & Varni, J.W. (1998). Effects of pediatric chronic physical disorders on child and family adjustment. Journal of Child Psychology and Psychiatry, 39, 29 - 46.
40. Willig, C. (2001). Introducing qualitative research in psychology: Adventures in theory and method. Buckingham: Open University Press.
41. Yardley, L. (2000). Dilemmas in qualitative health research. Psychology and Health, 15, 215 - 228.
42. Young, B., Dixon-Woods, M., Windridge, K.C., & Heney, D. (2003). Managing communication with young people who have a potentially life-threatening chronic illness: Qualitative study of patients and parents. British Medical Journal, 326, 305 - 309.