Perspectives of parents and tutors on a self-management program for parents/guardians of children with long-term and life-limiting conditions: "A life raft we can sail along with"

Journal of Community Psychology

Volumn 36, Issue 7, 2008, Pages 871-884

  Barlow, Julie ^a   Swaby, Laura ^a   Turner, Andrew ^a  

^a Faculty of Engineering and Computing   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 51449087772     PISSN: 00904392     EISSN: 15206629     Source Type: Journal    
DOI: 10.1002/jcop.20258     Document Type: Article

References (35)

1. Bandura, A. (1977). Social learning theory. Englewood Cliffs, NJ: Prentice-Hall.
2. Barlow, J.H., Bancroft, G.V., & Turner, A.P. (2005). Self-management training for people with chronic disease: A shared learning experience. Journal of Health Psychology, 10, 863-872.
3. Barlow, J.H., Cullen-Powell, L.A., & Cheshire, A. (2006). Psychological well-being among mothers of children with cerebral palsy. Early Child Development and Care, 176, 421-428.
4. Barlow, J.H., & Ellard, D.R. (2004). Psycho-educational interventions for children with chronic disease, parents and siblings: An overview of the research evidence base. Child: Health, Care & Development, 30, 637-645.
5. Barlow, J., Harrison, K., & Shaw, K. (1998). The experience of parenting in the context of juvenile chronic arthritis. Clinical Child Psychology and Psychiatry, 3, 445-463.
6. Barlow, J.H., Turner, A.P., & Gilchrist, M. (2006). A randomised controlled trial of the expert patients programme delivered to MI patients who had completed cardiac rehabilitation. Journal of Nutrition, Health & Ageing, 10, 355.
7. Barlow, J.H., Turner, A.P., & Wright, C.C. (2000). A randomised controlled study of the Arthritis Self Management Programme in the UK. Health Education Research, Theory & Practice, 15, 665-680.
8. Barlow, J.H., Williams, B., & Wright, C.C. (1999). Instilling the strength to fight the pain and get on with life': Learning to become an arthritis self-manager through an adult education programme. Health Education Research, 14, 533-544.
9. Barlow, J.H., Wright, C.C., Sheasby, J.E., Turner, A.P., & Hainsworth, J.M. (2002). An overview of self-management approaches for people with chronic conditions. A review. Patient Education & Counselling, 48, 177-187.
10. Berge, J.M., Patterson, J.P., & Rueter, M. (2006). Marital satisfaction and mental health of couples with children with chronic conditions. Families, Systems & Health, 24, 267-285.
11. Boumer, R., & Schweitzer, R. (1990). The impact of chronic childhood illness on family stress: A comparison between autism and cystic fibrosis. Journal of Clinical Psychology, 46, 722-730.
12. Brandtstadter, J., & Renner, G. (1990). Tenacious goal pursuit and flexible goal adjustment: Explication and age-related analysis of assimilative and accommodative strategies of coping. Psychology and Aging, 5, 58-67.
13. Buunk, B. P., Gibbons, F.X., & Visser, A. (2002). The relevance of social comparison processes for prevention and health care. Patient Education and Counseling, 47, 1-3.
14. Case-Smith, J. (2004). Parenting a child with a chronic medical condition. American Journal of Occupational Therapy, 58, 551-560.
15. Cooper, J., & Thompson, J. (2005). Stepping stones to success: An implementation, training and support framework for lay-led self-management programmes. London: NHS.
16. Cronin, A.F. (2004). Mothering a child with hidden impairments. American Journal of Occupational Therapy, 58, 83-92.
17. Department of Health. (2004). National Service Framework for Children, Young People and Maternity Services. London: HMSO.
18. Eiser, C. (1993). Growing up with chronic illness-the impact on children and their families. London: Jessica Kingsley Publishers Limited.
19. Expert Patients Programme, (n.d.). Retrieved January 2, 2007, from www.expertpatients.nhs.uk
20. Fredrickson, B.L. (1998). What good are positive emotions? Review of General Psychology, 2, 300-319.
21. Griffiths, G., Motlib, J., Azad, A., Ramsay, J., Eldridge, S., Khanem, R., et al. (2005). Effectiveness of a lay-led self-management programme for Bangladeshis in the UK with chronic disease: A randomised controlled trial. British Journal of General Practice, 520, 831-837.
22. Kennedy, A., Reeves, D., Bower, P., Lee, V., Middleton, E., & Richardson, G., et al. (2007). The effectiveness and cost effectiveness of a national lay-led self care support programme for patients with long-term conditions: A pragmatic randomised controlled trial. Journal of Epidemiology and Community Health, 61, 254-261.
23. Klausner, E., Snyder C.R., & Cheavens, J. (2000). A hope-based group treatment for depressed older adult outpatients. In G.M. Willimason, D.R. Shaffer, & P.A. Parmelee (Eds.), Physical illness and depression in older adults: A handbook of theory, research and practice (pp. 295-310). New York: Kluwer Academic/Plenum Publishers.
24. Lenton, S., Stallard, P., Lewis, M., & Mastroyannopoulou, K. (2001). Prevalence and morbidity associated with non-malignant, life-threatening conditions in childhood. Child: Care, Health and Development, 27, 389-398.
25. Lorig, K., Sobel, D., Stewart, A., Brown, B., Bandura, A., Ritter, P., et al. (1999). Evidence suggesting that a chronic disease self-management program can improve health status while reducing hospitalization. A randomized trial. Medical Care, 37, 5-14.
26. Most, D.E., Fidler, D.J., Laforce-Booth, C., & Kelly, J. (2006). Stress trajectories in mothers of young children with Down syndrome. Journal of Intellectual Disability Research, 50, 501-514.
27. Munn-Giddings, C., & McVicar, A. (2006). Self-help groups as mutual support: What do carers value? Health and Social Care in the Community, 15, 26-34.
28. Murphy, N.A., Christian, B., Caplin, D.A., & Young, P.C. (2007). The health of caregivers for children with disabilities: Caregiver perspectives. Child: Care, Health & Development, 33, 180-187.
29. National Primary Care Research and Development Centre (NPCRDC). (2006). Executive Summary 38-Disease versus generic chronic disease management: HIV and the role of the voluntary sector: A critical case analysis. Retrieved January 2, 2007, from www.npcrdc.ac.uk Prime Minister's Strategy Unit. (2005). Improving the life chances of disabled people. London: Author.
30. Raina, P., O'Donnell, M., Schwellnus, H., Rosenbaum, P., King, G., Brehaut, J., et al., (2004). Caregiving process and caregiver burden: Conceptual models to guide research and practice. BMC Pediatrics, 4(1), 1-13.
31. Ritchie, J., & Spencer, L. (1994). Qualitative data analysis for applied policy research. In A. Bryman & R. Burgess (Eds.), Analysing qualitative data (pp. 173-194). London: Routledge.
32. Seligman, M.E., Steen, T.A., Park, N., & Peterson, C. (2005). Positive psychology progress: Empirical validation of interventions. American Psychologist, 60, 410-421.
33. Seltzer, M.M., Greenberg, J.S., Floyd, F.J., & Hong, J. (2004). Accommodative coping and well-being of midlife parents of children with mental health problems or developmental disabilities. American Journal of Orthopsychiatry, 74, 187-195.
34. Schwartz, C.E., & Sender, R.M. (1999). Helping others helps oneself: Response shift effects in peer support. Social Science and Medicine, 48, 1563-1575.
35. Skaff, M.M., & Pearlin, L.I. (1992). Caregiving: Role engulfment and the loss of self. The Gerontologist, 32, 656-664.