SCIE research briefing 18: Being a father to a child with disabilities: issues and what helps
Reference list
Click here for a full alphabetical list of the references.
(1)Pawson R., Boaz A., Grayson L., Long A., Barnes C. (2003). Types and Quality of Knowledge in Social Care. Knowledge Review 3. Social Care Institute for Excellence (SCIE). [Accessed 18 October 2005] This document analyses and defines the different types of knowledge and information which may inform social care research and practice
(2)Carpenter B. (2002). Inside the portrait of a family: the importance of fatherhood. Early Child Development and Care, 172 (2), 195-202.
This article reviews and extends the debate on the redefinition of fatherhood. Full text available
(3)Pelchat D., Ricard N., Bouchard J.M., Perreault M., Saucier J.F., Berthiaume M. et al. (1999). Adaptation of parents in relation to their 6-month-old infant's type of disability. Child: Care, Health and Development, 25 (5), 377-397.
This Canadian study measured the different levels of stress among parents of infants with different disabilities. Abstract available
(4)Esdaile S.A., Greenwood K.A. (2003). A comparison of mothers' and fathers' experience of parenting stress and attributions for parent-child interaction outcomes. Occupational Therapy International, 10 (2), 115-126.
This US study explores differences in parenting stress between mothers and fathers of disabled children. Abstract available
(5)Saloviita T, Italinna M, Leinonen E (2003). Explaining the parental stress of fathers and mothers caring for a child with intellectual disability: A Double ABCX model. Journal of Intellectual Disability Research, 47 (4-5), 300-312.
This Finnish study examines the factors which contribute to stress in parents of children with an intellectual disability. Abstract available:
(6)Roach M.A., Orsmond G.I., Barratt M.S. (1999). Mothers and fathers of children with Down syndrome: Parental stress and involvement in childcare. American Journal on Mental Retardation, 104 (5), 422-436.
This US study compares parental stress in socio-economically matched samples of mothers and fathers of children with Down syndrome and parents of typically developing children. Abstract available
(7)Veisson M. (1999). Depression symptoms and emotional states in parents of disabled and non-disabled children. Social Behavior and Personality, 27 (1), 87-97.
This article is a survey from Estonia comparing the depressive symptoms and emotional states of parents of disabled children and non-disabled children. Full text available
(8)Sloper P. (1999). Models of service support for parents of disabled children. What do we know? What do we need to know? Child: Care, Health and Development, 25 (2), 85-99.
This paper reviews the findings about parental stress and coping strategies, and identifies a number of important characteristics of effective service models. Abstract available
(9)Beresford B., Sloper P., Baldwin S., Newman T. (1996). What Works in Services for Families with a Disabled Child(PDF). Barnardos. [Accessed 18 October 2005]
This report discusses effective practice for families with disabled children up to the age of 16.
(10)West S. ( 2000). Just a shadow: a review of support for fathers of children with disabilities. Birmingham, Handsel Trust.
This book reports the findings of interviews with four fathers of children with disabilities.
(11)Pelchat D., Lefebvre H., Perreault M. (2003). Differences and similarities between mothers' and fathers' experiences of parenting a child with a disability. Journal of Child Health Care, 7 (4), 231-247.
This Canadian study uses focus groups to identify the differences and similarities in the experiences of parents of children with a disability. Abstract available
(12)Rendall A. (1997). Fatherhood and learning disabilities: a personal account of reaction and resolution. Journal of Learning Disabilities, 1 (2), 77-83.
This article describes the findings of a survey of fathers of children with disabilities, as well as the author's personal experience.
(13)Sullivan A. (2002). Gender differences in coping strategies of parents of children with Down syndrome. Down Syndrome: Research & Practice, 8 (2), 67-73.
This UK examines the reactions of fathers compared to mothers following the birth of a child with Down syndrome. Abstract available
(14)Knafl K., Zoeller L. (2000). Childhood chronic illness: a comparison of mothers' and fathers' experiences. Journal of Family Nursing, 6 (3), 287-302.
This US study explores how mothers and fathers of a child with a chronic illness view their experience and its impact on family life.
(15)Fidalgo Z., Pimentel J.S. (2004). Mother, child and father-child interactions with Down syndrome (DS) children: A comparative study. Journal of Intellectual Disability Research, 48 (4-5), 326.
This Portuguese study examines differences between fathers and mothers in how they interact with their disabled children.
(16)Katz S. (2002). Gender differences in adapting to a child's chronic illness: a causal model. Journal of Pediatric Nursing, 17 (4), 257-269.
This Israeli study examines differences between mothers and fathers' response to their child's chronic illness. Abstract available
(17)Hastings R.P. (2003). Child behaviour problems and partner mental health as correlates of stress in mothers and fathers of children of autism. Journal of Intellectual Disability Research, 47 (4-5), 231-237.
This UK study examines the relationship between maternal and paternal psychological well-being and being the parent of a disabled child. Abstract available
(18) Pelchat D., Bisson J., Ricard N., Perreault M., Bouchard J.-M. (1999). The longitudinal effects of an early family intervention program on the adaptation of families of children with a disability. International Journal of Nursing Studies, 36 (6), 465-477
(19)Peck B., Lillibridge J. (2003). Rural fathers' experiences of loss in day-to-day life with chronically ill children. Australian Journal of Advanced Nursing, 21 (1), 21-27.
This is an Australian study of the experiences of rural fathers in relation to their disabled children.
(20)Seiffge-Krenke I. (2002). "Come on, say something, Dad!": communication and coping in fathers of diabetic adolescents. Journal of Pediatric Psychology, 27 (5), 439-450.
This German study compares the coping and communication behaviour of fathers in families with either a diabetic or a non-diabetic child. Abstract available
(21)Donald Beasley Institute. (1997). Perilous Passage: New Zealand Fathers Talk about their Children with Disabilities. Dunedin, The Donald Beasley Institute Inc.
This book describes the experiences of fathers of disabled children and offers an insight into their relationships.
(22)Goble L.A. (2004). The impact of a child's chronic illness on fathers. Issues in Comprehensive Pediatric Nursing, 27 (3), 153-162.
This US study examines the experience of fathers of a child with a chronic illness. Abstract available:
(23)Leyser Y., Heinze T. (2001). Perspectives of parents of children who are visually impaired: Implications for the field. RE:view, 33 (1), 37-48.
This US survey examines what parents of visually impaired children find both difficult and helpful. Abstract available
(24)Olsen R., Wates M. (2003). Disabled Parents. Examining Research Assumptions. Research in Practice. [Accessed 18 October 2005]
The aim of this review is to bring together the research literature on disabled parents and to place it within the context of policy and practice.
(25)West A. (1998). The piloting of a group for the fathers of children with Down syndrome. Child: Care Health and Development, 24 (4), 289-294.
This paper describes the piloting of a small group for the fathers of children with Down Syndrome. Abstract available:
(26)Hadadian A., Merbler J. (1995). Fathers of young children with disabilities: how do they want to be involved? Child and Youth Care Forum, 24 (5), 327-338.
This US study looks at father's involvement with their disabled children, as well as their training and resource needs.
(27)Quinn P. (1999). Supporting and encouraging father involvement in families of children who have a disability. Child and Adolescent Social Work Journal, 16 (6), 439-454.
This US study looks at interventions to improve fathers' involvement with their disabled children.
(28)Russell D., Matson J. (1998). Fathers as intervention agents for their children with developmental disabilities. Child & Family Behavior Therapy, 20 (3), 29-49.
This US study examines the effectiveness of parent training for three fathers of developmentally disabled children.
(29)Sofronoff K., Farbotko M. (2002). The effectiveness of parent management training to increase self-efficacy in parents of children with Asperger syndrome. Autism, 6 (3), 271-286.
This Australian study looks at an intervention programme to improve parental self-efficacy in the management of problem behaviours associated with Asperger syndrome. Abstract available
(30)Beresford B. (1995). Expert Opinions: a Survey of Parents Caring for a Severely Disabled Child. Bristol, Policy Press.
This is a survey of parents of disabled children. It focuses on available and recommended services.
(31)Meyer D.J. (1995). Uncommon Fathers: Reflections on Raising a Child with a Disability. Bethesda M.D., Woodbine House.
The nineteen chapters of this U.S. book were written by fathers of children with disabilities. They describe their experiences.
(32)Olsson M.B., Hwang C.P. (2001). Depression in mothers and fathers of children with intellectual disability. Journal of Intellectual Disability Research, 45 (6), 535-543.
This Swedish study compares depression in parents of children with autism and intellectual disabilities with parents of non-disabled children. Abstract available
(33)Kagan C., Lewis S., Heaton P. (1998). Caring to Work: Accounts of working parents of disabled children. Joseph Rowntree Foundation.
This is a report on the needs and experiences of 40 families with disabled children, especially in terms of employment and work.
(34)Ghate D., Shaw C., Hazel N. (2000). Fathers and Family Centres: Engaging Fathers in Preventive Services. Joseph Rowntree Foundation. [Accessed 18 October 2005]
This study examines what helps and hinders fathers' involvement with family centres
(35)Carpenter B., Addenbrooke M., Attfield E., Conway S. (2004). "Celebrating Families": an inclusive model of family-centred training. British Journal of Special Education, 31 (2), 75-80.
This article reports on a week of traning days for all members of families of children with special needs, including fathers, extended family and siblings.
(36)Turbiville V.P., Marquis J.G. (2001). Father participation in early education programs. Topics in Early Childhood Special Education, 21 (4), 223-231.
This US study examines the involvement of 318 fathers of disabled and non-disabled children in early education programmes.
(37)Mitchell W., Sloper P. (2000). User-friendly information for families with disabled children: A guide to good practice. Joseph Rowntree Foundation. [Accessed 18 October 2005]
This is a report on a project investigating the information and service needs of parents of disabled children.
(38)Department of Health (2001). Valuing People. A New Strategy for Learning Disability for the 21st Century. Department of Health. [Accessed 18 October 2005]
This White paper forwards proposals for improved service delivery to children with learning disabilities and their parents, as well as adults with learning disabilities.
(39)Elder J.H., Valcante G., Won D., Zylis R. (2003). Effects of in-home training for culturally diverse fathers of children with autism. Issues in Mental Health Nursing, 24 (3), 273-295.
This US study reports on four fathers from different ethnic groups and the effect of a programme to help their parenting. Abstract available
(40)Elder J.H., Valcante G., Yarandi H., White D., Elder T.H. (2005). Evaluating in-home training for fathers of children with autism using single-subject experimentation and group analysis methods. Nursing Research, 54 (1), 22-32.
This US study evaluates a training program designed to help fathers interact better with their autistic children. Abstract available
