Fathers' contributions to the management of their child's long-term medical condition: A narrative review of the literature

Health Expectations

Volumn 15, Issue 2, 2012, Pages 157-175

  Swallow, Veronica ^a,b   Macfadyen, Ann ^a   Santacroce, Sheila J ^c   Lambert, Heather ^d  

^a UNIVERSITY OF MANCHESTER   (United Kingdom)

^b NEWCASTLE UNIVERSITY   (United Kingdom)

^c UNIVERSITY OF NORTH CAROLINA   (United States)

^d NEWCASTLE UPON TYNE HOSPITALS NHS FOUNDATION TRUST   (United Kingdom)

Author keywords

Children; Chronic; Fathers; Long term; Management; Mothers

Indexed keywords

CHILD; CHILD HEALTH CARE; CHRONIC DISEASE; FAMILY; FATHER; FEMALE; HUMAN; LONG TERM CARE; PATERNAL BEHAVIOR; PSYCHOLOGICAL ASPECT; REVIEW;

CHILD; CHILD HEALTH SERVICES; CHRONIC DISEASE; FAMILY; FATHERS; FEMALE; HUMANS; LONG-TERM CARE; PATERNAL BEHAVIOR;

EID: 84861419366     PISSN: 13696513     EISSN: 13697625     Source Type: Journal    
DOI: 10.1111/j.1369-7625.2011.00674.x     Document Type: Article

References (75)

1. Ray LD. Parenting and childhood chronicity: making visible the invisible work. Journal of Pediatric Nursing, 2002; 17: 424-438.
2. Robinson KE, Gerhardt CA, Vannatta K, Noll RB. Parent and family factors associated with child adjustment to pediatric cancer. Journal of Pediatric Psychology, 2007; 32: 400-410.
3. Knafl K, Breitmayer B, Gallo A, Zoeller L. Family response to childhood chronic illness: description of management styles. Journal of Pediatric Nursing: Nursing Care of Children and Families, 1996; 11: 315-326.
4. Hatton D, Canan C, Thorne S, Hughes A. Parents' perceptions of caring for an infant or toddler with diabetes. Journal of Advanced Nursing, 1995; 22: 569-577.
5. Canam C. Common adaptive tasks facing parents of children with chronic conditions. Journal of Advanced Nursing, 1993; 18: 46-53.
6. Wallander JL, Varni JW, Babani L, Banis HT, Wilcox KT. Family resources as resistance factors for psychological maladjustment in chronically Ill and handicapped children. Journal of Pediatric Psychology, 1989; 14: 157-173.
7. Swallow V, Lambert H, Clarke C, Campbell S, Jacoby A. Childhood chronic-kidney-disease: a longitudinal-qualitative study of families learning to share management early in the trajectory. Patient Education and Counseling, 2008; 73: 354-362.
8. Schilling LS, Grey M, Knafl KA. The concept of self-management of type 1 diabetes in children and adolescents: an evolutionary concept analysis [Review] [84 refs]. Journal of Advanced Nursing, 2002; 37: 87-99.
9. Swallow V, Clarke C, Campbell S, Lambert H. Nurses as family learning brokers: shared management in childhood chronic kidney disease. Journal of Nursing and Healthcare of Chronic Illness, 2009; 1: 49-59.
10. Kieckhefer G, Trahms CM. Supporting development of children with chronic conditions: from compliance towards shared management. Pediatric Nursing, 2000; 26: 354-363.
11. Jokinen P. The family life-path theory: a tool for nurses working in partnership with families. J Child Health Care, 2004; 8: 124-133.
12. Eiser C, Havermans T. Mothers and fathers coping with chronic childhood-disease. Psychology & Health, 1992; 7: 249-257.
13. Santacroce SJ. Parental uncertainty and posttraumatic stress in serious childhood illness. Journal of Nursing Scholarship, 2003; 35: 45-51.
14. Sleigh G. Mothers' voice: a qualitative study on feeding children with cerebral palsy. Child: Care, Health and Development, 2005; 31: 373-383, doi:
15. Swallow VM, Jacoby A. Mothers' coping in chronic childhood illness: the effect of presymptomatic diagnosis of vesicoureteric reflux. Journal of Advanced Nursing, 2001; 33: 69-78.
16. Sullivan-Bolyai S, Deatrick J, Gruppuso P, Tamborlane W, Grey M. Constant vigilance: mothers' work parenting young children with type 1 diabetes. Journal of Pediatric Nursing: Nursing Care of Children and Families., 2003; 18: 21-29.
17. Katz S, Krulik T. Fathers of children with chronic illness: do they differ from fathers of healthy children?Journal of Family Nursing, 1999; 5: 292-315.
18. Phares V, Lopez E, Fields S, Kamboukos D, Duhig AM. Are fathers involved in pediatric psychology research and treatment?Journal of Pediatric Psychology, 2005; 30: 631-643.
19. Tiedje L, Darling-Fisher C. Promoting father friendly healthcare. The American Journal of Maternal Child Nursing, 2003; 28: 350-359.
20. Knafl K, Zoeller L. Childhood chronic illness: a comparison of mothers' and fathers' experiences. Journal of Family Nursing, 2000; 6: 287-302.
21. Sterken DJ. Uncertainty and coping in fathers of children with cancer. Journal of Pediatric Oncology Nursing, 1996; 13: 81-88.
22. Chesler MA, Parry C. Gender roles and/or styles in crisis: an integrative analysis of the experiences of fathers of children with cancer. Qualitative Health Research, 2001; 11: 363-384.
23. Arockiasamy V, Holsti L, Albersheim S. Fathers' experiences in the neonatal intensive care unit: a search for control. Pediatrics, 2008; 121: 215-222.
24. Chaney J, Mullins L, Frank RG et al. Transactional patterns of child, mother, and father adjustment in insulin-dependent diabetes mellitus: a prospective study. Journal of Pediatric Psychology, 1997; 22: 229-244.
25. Gavin L, Wysocki T. Associations of paternal involvement in disease management with maternal and family outcomes in families with children with chronic illnesses. Journal of Pediatric Psychology, 2006; 31: 481-489.
26. Costigan C, Cox M. Fathers' participation in family research: is there a self-selection bias?Journal of family psychology, 2001; 15: 706-720.
27. O'Brien M. Shared Caring: Bringing Fathers into the Frame. London: Equal Opportunities Commission, 2005.
28. Yeung W. Fathers: an overlooked resource for children's school success. In: Conley D, Albright K (eds) After the Bell: Solutions Outside the School. London: Routledge, 2004: 145-169.
29. Lower-Basch E. Opportunity at Work: Improving Job Quality. Washington, DC: Ter for Law and Social Policy, 2007.
30. Beers W. When the community cares. Health Progress, 2000; 81: 43-45.
31. DWP. Flexible Working. London: Department of Work and Pensions, 2007.
32. Fatherhood-Institute. The Difference a Dad Makes. Abergevenny: The Fatherhood Institute, 2007.
33. Corporate-Voices. Flexible Work Strategies: Attitudes and Experiences. Washington, DC: Corporate Voices for Working Families, 2008.
34. Pelchat D, Lefebvre H, Levert M-J. Gender differences and similarities in the experience of parenting a child with a health problem: current state of knowledge. J Child Health Care, 2007; 11: 112-131.
35. McNeill T. Fathers' experience of parenting a child with juvenile rheumatoid arthritis. Qualitative Health Research, 2004; 14: 526-545.
36. Reeves E, Timmons S, Dampier S. Parents' experiences of negotiating care for their technology dependent child. Journal of Child Health Care, 2006; 10: 228-239.
37. EHRC. Working Better: Fathers, Family and Work Contemporary Perspectives. London: Equality and Human Rights Commission, 2009.
38. Yeh C. Gender differences of paternal distress in children with cancer. Journal of Advanced Nursing, 2002; 38: 598-606.
39. Burgess A. Fathers and public services. In: Stanley K (ed.) Daddy Dearest: Active Fatherhood and Public Policy. London: Institute of Public Policy Research, 2005: 57-74.
40. Dex S, Ward K. Parental Care and Employment in Early Childhood. Working paper Series No. 57London: Equal Opportunities Commission, 2007.
41. Mokkink L, van der Lee J, Grootenhuis M, Offringa M, Heymans H. Defining chronic diseases and health conditions in childhood (0-18years of age): national consensus in the Netherlands. European Journal of Pediatrics, 2008; 167: 1441-1447.
42. Vessey J. Psychological comorbidity in children with chronic conditions. Pediatric Nursing, 1999; 25: 211-214.
43. Mishel MH. Uncertainty and coping in fathers of children with cancer. Journal of Pediatric Oncology Nursing, 1996; 13: 89-90.
44. Mays N, Pope C, Popay J. Systematically reviewing qualitative and quantitative evidence to inform management and policy-making in the health field. Journal of Health Services Research Policy, 2005; 10: 6-20.
45. Wysocki T, Gavin L. Paternal involvement in the management of pediatric chronic diseases: associations with adherence, quality of life and health status. Journal of Pediatric Psychology, 2006; 31: 501-511.
46. Watson A. Stress and burden of care in families with children commencing renal replacement therapy. Advances in Peritoneal Dialysis, 1997; 13: 300-304.
47. Katz S. When the child's illness is life threatening: impact on the parents. Pediatric Nursing, 2002; 28: 453-463.
48. Katz S. Gender differences in adapting to a child's chronic illness: a causal model. Journal Of Pediatric Nursing, 2002; 17: 257-269.
49. Hovey JK. Differences in parenting needs of fathers of children with chronic conditions related to family income. Journal of Child Health Care, 2006; 10: 43-54.
50. Hovey JK. Fathers parenting chronically ill children: concerns and coping strategies. Issues in Comprehensive Pediatric Nursing, 2005; 28: 83-95.
51. Rodrigues N, Patterson J. Impact of severity of a child's chronic condition on the functioning of two-parent families. Journal of Pediatric Psychology, 2007; 32: 417-426.
52. Weiner L, Vasquez M, Battles H. Brief report: fathering a child living with HIV/AIDS: psychosocial adjustment and parebting stress. Journal of Pediatric Psychology, 2001; 26: 253-258.
53. Neil-Urban S, Jones J. Father-to-father support: fathers of children with cancer share their experience. Journal of Pediatric Oncology Nursing, 2002; 19: 97-103.
54. Brazil K, Krueger P. Patterns of family adaptation to childhood asthma. Journal Of Pediatric Nursing, 2002; 17: 167-173.
55. McGrath P, Chesler M. Fathers' perspectives on the treatment for pediatric hematology: extending the findings. Issues in Comprehensive Pediatric Nursing, 2004; 27: 39-61.
56. Peck B, Lillibridge J. Normalization behaviours of rural fathers living with chronically-ill children: an Australian experience. J Child Health Care, 2005; 9: 31-45.
57. Pelchat D, Lefebvre H, Perreault M. Differences and similarities between mothers' and fathers' experiences of parenting a child with a disability. Journal of Child Health Care, 2003; 7: 231-247.
58. Swallow V. An exploration of mothers' and fathers' views of their identities in chronic-kidney-disease management: parents as students?Journal of Clinical Nursing, 2008; 17: 3177-3186.
59. Clark S, Miles M. Conflicting responses: the experiences of fathers of infants diagnosed with severe congenital heart disease. Journal for Specialists in Paediatric Nursing, 1999; 4: 7-14.
60. Sullivan-Bolyai S, Rosenberg R, Bayard M. Fathers' reflections on parenting young children with type 1 diabetes. MCN, American Journal of Maternal Child Nursing January/February, 2006; 31: 24-31.
61. Douglas JE, Hulson B, Trompeter RS. Psycho-social outcome of parents and young children after renal transplantation. Child Care Health and Development, 1998; 24: 73-83.
62. Pei-Fan Mu. Paternal reactions to a child with epilepsy: uncertainty, coping strategies, and depression. Journal of Advanced Nursing, 2005; 49: 367-376.
63. Goble L. The impact of a child's chronic illness on fathers. Issues in Comprehensive Pediatric Nursing, 2004; 27: 153-162.
64. Barakat L, Alderfer M, Kazak AE. Posttraumatic growth in adolescent survivors of cancer and their mothers and fathers. Journal of Pediatric Psychology, 2006; 31: 413-419.
65. Hovey JK. The needs of fathers parenting children with chronic conditions. Journal of Pediatric Oncology Nursing, 2003; 20: 245-251.
66. Soliday E, Kool E, Lande MB. Family environment, child behavior, and medical indicators in children with kidney disease. Child Psychiatry & Human Development, 2001; 31: 279-295.
67. Worrall-Davies A, Owens D, Holland P, Haigh D. The effect of parental expressed emotion on glycaemic control in children with Type 1 diabetes: parental expressed emotion and glycaemic control in children. Journal of Psychosomatic Research, 2002; 52: 107-113.
68. Dashiff CJ. Self- and dependent-care responsibility of adolescents with IDDM and their parents. Journal of Family Nursing, 2003; 9: 166-183.
69. Wysocki T, Gavin L. Psychometric properties of a new measure of fathers' involvement in the management of pediatric chronic diseases. Journal of Pediatric Psychology, 2004; 29: 231-240.
70. Swallow V, Macfadyen A, Lambert H, Santacroce S, Olley R. Fathers and mothers of children with long term kidney conditions: a qualitative study of their contributions to their child's healthcare (Nephrology and clinical genetics joint session). Archives of Disease in Childhood, 2009; 94: A34-A37.
71. Aldridge M. How do families adjust to having a child with chronic kidney failure? A systematic reviewNephrology Nursing Journal, 2008; 35: 157-162.
72. Lower J. Creating a culture of civility in the workplace: use these 7 challenges to clean up a toxic work environment. American Nurse Today, 2007; 2: 49.
73. Bryden K, Peveler R, Stein A, Neil A, Mayou R, Dunger D. Clinical and psychological course of diabetes from adolescence to young adulthood. Diabetes Care, 2001; 24: 156-1540.
74. Glidden LM, Natcher AL. Coping strategy use, personality, and adjustment of parents rearing children with developmental disabilities. Journal of Intellectual Disability Research, 2009; 53: 998-1013.
75. Swallow V, Lambert H, Santacroce S, Macfadyen A. Fathers and mothers developing skills in managing children's long-term medical condition: how do their qualitative accounts compare?Child: Care Health & Development, in press. DOI: 10.1111/j.1365-2214.2011.01219.x, 6 March 2011.