Hello Kerre

These might be relevant:

Carnevale, F. A., Alexander, E., Davis, M., Rennick, J., & Troini, R. (2006). Daily living with distress and enrichment: the moral experience of families with ventilator-assisted children at home. Pediatrics, 117(1), e48-e60.

http://peds.stanford.edu/Rotations/blue_team/documents/CarnevaleCSHCNParentalPerspective.pdf

Khamis, V. (2007). Psychological distress among parents of children with mental retardation in the United Arab Emirates. Social Science & Medicine, 64(4), 850-857.

http://www.ncbi.nlm.nih.gov/pubmed/17129651

I have the pdf copy if you need it.

This paper compares health professionals' and the parents' perspectives - of premature infants rather than those with a disability:

Streiner, D. L., Saigal, S., Burrows, E., Stoskopf, B., & Rosenbaum, P. (2001). Attitudes of parents and health care professionals toward active treatment of extremely premature infants. Pediatrics, 108(1), 152-157. 

http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.317.9978&rep=rep1&type=pdf

Risdal, D., & Singer, G. H. (2004). Marital adjustment in parents of children with disabilities: A historical review and meta-analysis. Research and Practice for Persons with severe disabilities, 29(2), 95-103.

https://www.researchgate.net/publication/250169513_Marital_Adjustment_in_Parents_of_Children_with_Disabilities_A_Historical_Review_and_Meta-Analysis

Gray, D. E. (2002). ‘Everybody just freezes. Everybody is just embarrassed’: Felt and enacted stigma among parents of children with high functioning autism. Sociology of Health & Illness, 24(6), 734-749.

http://onlinelibrary.wiley.com/doi/10.1111/1467-9566.00316/full

Olsson, M. B., & Hwang, C. P. (2002). Sense of coherence in parents of children with different developmental disabilities. Journal of Intellectual Disability Research, 46(7), 548-559.

https://www.researchgate.net/publication/11103690_Sense_of_coherence_in_parents_of_children_developmental_disabilities

Best wishes with your research

Mary

Article Marital Adjustment in Parents of Children with Disabilities:...

Article Sense of coherence in parents of children developmental disabilities

Thank you so much Mary.   These look really good.

Kind Regards,

Kerre

If you look at our article in Disability and Society - Munford et al you may find some interesting ideas.

Kerre - I also have a chapter in a new book on medical resilience and some of these chapters will have reference for your work - it should be published soon. It is by Springer and it will be listed here on Researchgate when it is published.

Thanks so much for your responses Robyn.  Could you please give me the date, volume or edition of Disability and Society as I have not been able to locate the article. Kind Regards,

Kere

Thanks Kere - here are references for that and another article and a chapter - they all may have some useful material for you. Not quite on the topic but the theoretical frameworks in working with disability and with families may be of use.

Robyn

2013

“Assessment of families”.  Munford, R. & Sanders, J.  In Holosko, M, Dulmus, C. &

Sowers, K. (Eds.) Social Work Practice with Individuals and Families: Evidence Informed Assessments and Interventions. USA, John Wiley and Sons Inc.

2008

“Looking inside the bag of tools- Creating research encounters with parents with an intellectual disability”. Munford, R., Sanders J., Mirfin-Veitch, B. & Condor, J. Disability and Society, 23 (4): 337-348.  

 “Ethics and research: Searching for ethical practice in research”. Munford, R., Sanders J., Mirfin-Veitch, B. & Condor, J.  Ethics and Social Welfare, (20) 1: 50-66.

Thank you so much for these Robyn.

Kind Regards,

Kerre

Hello Kerre,

I have some work published about the effects of having a child with disabilities.

Look for the parent`s needs in my research.

Feel free to ask any questions or more information.

Best regards

https://www.jpsmjournal.com/article/S0885-3924(09)00525-9/pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2820356/

Thank you Beatrice for this interesting article. It is a very confronting scenario that needs appropriate attention.

Kind regards,

Kerre