Child life-limiting illnesses are those from which there is no reasonable hope of cure and from which children will die. Only recently have these illnesses been recognized as a discrete category and thus relatively little research has focused specifically upon this group of children and their families. This study utilized qualitative methods to investigate the experience of fathers, a group who are often under-represented in child illness research. The research aim was to gain an understanding of fathers' experiences of having a child with a life-limiting illness, its impact upon them, and their perceptions of service provision. The data from eight interviews was analysed using Interpretative Phenomenological Analysis. Four main themes emerged highlighting the fathers' feeling that their world had been turned upside down, how they lived with the knowledge their child would die, how men perceive themselves as different from women, and the fathers' wish to contribute to changing and improving how other fathers might cope with a child with a life-limiting illness. The results are discussed particularly in relation to gender issues. Various implications for clinical practice and service provision are considered. Suggestions are also made for future research.
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 (2nd 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.
