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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

REFERENCES Informing

REFERENCES Informing Families Consultation and Research Report McCormack, B in: Noonan-Walsh, P. & Gash, H. (2004) Lives and Times: Practice, Policy and People with Disabilities. Rathdown, Ireland. Miller, S & Mangan, C. (1983) Interacting Effects of Information and Coping Style in Adapting to Gynecologic Stress: Should the doctor tell all? Journal of Personality and Social Psychology, 45(1), 223-236. Mitchell, W. & Sloper, P. (2000) User-Friendly Information for Parents with Disabled Children; A Guide to Good Practice. York Publishing Services, York. Moran, G., Pederson, D.R., Pettit, P. & Krupka, A. (1992) Maternal sensitivity and infant-mother attachment in a developmentally delayed sample. Infant Behaviour and Development, 15, 427-442. Morris, J. (2001) Impairment and Disability: Constructing an Ethics of Care that promotes Human Rights. Hypatia 16(4) Fall: 1-16 Mulrooney, M. & Harrold, M. (2004). Parents’ voices. In Noonan Walsh, P, and Gash, H. (Eds), Lives and Times: Practice, Policy and People with Disabilities. Wicklow: Rathdown Press. Narayanasamy, A. (2003) Transcultural care. Transcultural nursing: how do nurses respond to cultural needs? British Journal of Nursing, 12(3), 185-94. Nash, R. (1995) Breaking it gently. New Generation, 14(4), 9. Oliver, M. (1993) Societal Responses to Long Term Disability. In: Whiteneck, G. and Charlifue, S., (Eds.) Aging with Spinal Cord Injury,pp. 251-262. New York: Demos Publications Ormond, K.E., Mills, P.L., Lester, L.A. & Ross, L.F. (2003) Effect of family history on disclosure patterns of cystic fibrosis carrier status. American Journal of Medical Genetics Part C: Seminars in medical genetics, 2003; 119C(1):70-77. Parents Future Planning Group (2000) What do I Do Now? Department of Health and Children, Health Promotion Unit, Dublin. Pearson, D., Simms, K., Ainsworth, C. & Hill, S. (1999) Disclosing special needs to parents. Have we got it right yet? Child Care, Health and Development, 25(1), 3. Pelchat, D. (2004) A Holistic Intervention Programme for Families with a Child with a Disability. Journal of Advanced Nursing, 48(2), 124-131 Phipps, L.L. & Cuthill, J.D. (2002) Breaking bad news: a clinician’s view of the literature. Ann R. Coll. Physicians Surg. Can, 35(5),287-293. Phua, V., Reid, S.M., Walstab, J.E. & Reddihough, D.S. (2005). Inpatient care of children with cerebral palsy as perceived by their parents. Journal of Paediatrics and Child Health, 41, 432. Pianta, R.C., Marvin, R.S., Britner, P.A. & Borowitz, K.C. (1996) Mothers resolution of their child’s diagnosis: organised patterns of care giving representations. Infant Mental Health Journal, 17, 239-256. Pickering, D & Payne, H (2004) Using focus groups to evaluate parental satisfaction of services for the pre-school disabled child. A.P.C.P. Journal, March 2004; 15-20 Price, J., McNeilly, P. & Surgenor, J. (2006) Breaking bad news to parents: the children’s nurse’s role. International Journal of Palliative Nursing, 12(3), 115-20. Quine, L. & Pahl, J. (1987) First diagnosis of severe handicap: a study of parental reaction. Developmental Medicine & Child Neurology, 29(2), 232-42. Quine, L. & Rutter, D.R. (1994) First diagnosis of severe mental and physical disability: a study of doctor-parent communication. Journal of Child Psychology and Psychiatry, 35(7), 1273-87. Redmond, B. (2000) The Needs of Carers of Fragile Babies and Young Children with Severe Developmental Disability. The Centre for the Study of Developmental Disabilities and Department of Social Policy and Social Work University College Dublin, Dublin. Review Group on Mental Handicap Services. (1990). Needs and Abilities. The Stationery Office, Dublin. Reynolds-Whyte, S. and Ingstad, B. (eds) (1995) Disability and culture: an overview. In: Disability and Culture (Ingstad, B. and Reynolds- Whyte, S. eds). Berkeley: University of California Press, 3–32. Right From The Start Working Group. (2003) Right From The Start, Template – Good Practice in Sharing the News. London: SCOPE. Sawyer, S.M. & Glazner, J.A. (2004) What follows newborn screening? An evaluation of a residential education program for parents of infants with newly diagnosed cystic fibrosis. Paediatrics, 114(2), 411-416. Shakespeare, T. (2006) Disability Right and Wrongs, Routledge. Sharp, M.C., Strauss, R.P. & Lorch, S.C. (1992) Communicating medical bad news: Parents’ experiences and preferences. Journal of Paediatrics, 121, 539-46. Sim, J. (1998) Collecting and analysing qualitative data: Issues raised by the focus group. The Journal of Advanced Nursing, Vol 28(2), pp. 345-352 163

Informing Families Consultation and Research Report REFERENCES Sloper, P. & Turner, S. (1993) Determinants of parental satisfaction with disclosure of disability. Developmental Medicine and Child Neurology, 35, 816-825. Sloper, P., Jones, L., Triggs, S., Howarth, J., & Barton, K. (2003) Multi-agency care coordination and key worker services for disabled children. Journal of Integrated Care, 11, 9-15. South Western Area Health Board & Rush, D. (2003) Final Report of Early Services Kildare & West Wicklow study. The Performance Partnership, Galway. Speedwell, L. (2003) Informing parents of visually impaired children: who should do it and when? Child: Care, Health and Development, 29(3), 219-24. U.N. Convention on Human Rights of Persons with Disabilities (2006) United Nations General Assembly Resolution, UN Doc. A/61/611 Union of the Physically Impaired Against Segregation (1976) Fundamental Principles of Disability, Disability Alliance. Vaughan, B.E. & Bost, K.K. (1999) Attachment and temperament: redundant, independent, or interacting influences on interpersonal adaptation and personality development? In: Handbook of Attachment (eds. J. Cassidy & P.Shaver), pp.198-225. Guildford Press, New York. Walls, M. & Swinburne, J. (2006) Report to Oireachtas Committee on Education & Science by National Federation of Voluntary Bodies. National Federation of Voluntary Bodies: Galway. Western Health Board & Brothers of Charity, Galway Services (2003) Review of Early Childhood Services Brothers of Charity, Galway Services. Western Health Board, Galway. Williams, A. & Essex, C. (2004) ‘Developmental delay or failure to arrive?’ Developmental Medicine & Child Neurology, 46: 502 Williams, P.D., Williams, A.R., Graff, J.C., Hanson, S., Stanton, A., Hafeman, C. et al (2002) Interrelationships among variables affecting well siblings and mothers in families of children with a chronic illness or disability. Journal of Behavioural Medicine, 25, 411-424. Worden , W. (1991) Grief Counselling and Grief Therapy. Springer Publishing Co. New York. Zambian State (2007) Zambia Initial report to the African Commission on the Charter 2006 www.african-union.org DL 25/3/07 Additional references regarding ante-natal diagnosis Lalor, J (2007) Recasting Hope. A longitudinal study of women’s experience of carrying a baby with a fetal anomaly up to and beyond the birth. Unpublished PhD thesis, University of Dublin, Trinity College Dublin. Lalor, J., Devane, D. & Mc Parland, P. (2007) Ultrasound screening for fetal abnormality in Ireland: A national survey. Irish Journal Medical Science, In Press (Sept edition) Lalor, J., Devane, D. & Begley, C. (2007) Unexpected diagnosis of fetal abnormality: Women's encounters with caregivers. Birth, 34, (1), p80 - 88. Lalor, J. & Devane, D. (2007) Information, knowledge and expectations of the routine ultrasound scan, Midwifery, 23, 2007, p13 - 22. Lalor, J., Devane, D. & Mc Parland, P. (2006) Ultrasound screening in Ireland: How effective is the service? Irish Medical Journal, 99, (9), p264-266. Lalor, J. & Begley, C. (2006) Fetal anomaly screening: what do women want to know? Journal of Advanced Nursing, 55, (1), p11 - 19. Lalor, JG, Begley, C. (2005) Reconstructing the Future: Women's adjustment to the diagnosis of fetal abnormality. 27th Triennial Congress of the International Confederation of Midwives, Brisbane Australia, 25-28th July, 2005. [on CD]. Lalor, J., Begley, C & Galavan, E. (2006) Comparison of perinatal grief between women that continue or terminate the pregnancy after second trimester diagnosis of fetal anomaly. 8th Annual research conference of the School of Nursing and Midwifery, TCD. “Transforming Healthcare through Research, Education and Technology”, Dublin, Nov, 2006. [Abstract] Lalor, JG, Devane, D, Mc Parland, P. (2006) Ultrasound screening in Ireland: What’s happening? Irish Perinatal Society Meeting , Dublin , 13th May. 2006. www.ips.ie 164

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