2,378
Views
1
CrossRef citations to date
0
Altmetric
Research Article

Support needs of families with a child with profound intellectual and multiple disabilities

ORCID Icon, ORCID Icon, ORCID Icon & ORCID Icon
Received 31 Jul 2022, Accepted 11 Jan 2023, Published online: 01 Feb 2023

References

  • Alsem, M. W., Ausems, F., Verhoef, M., Jongmans, M. J., Meily-Visser, J. M. A. and Ketelaar, M. 2017. Information seeking by parents of children with physical disabilities: An exploratory qualitative study. Research in Developmental Disabilities, 60, 125–134.
  • Burton-Smith, R., McVilly, K. R., Yazbeck, M., Parmenter, T. R. and Tsutsui, T. 2009. Service and support needs of Australian carers supporting a family member with disability at home. Journal of Intellectual & Developmental Disability, 34, 239–247.
  • Correia, R. A. and Seabra-Santos, M. J. 2021. “I would like to have a normal brother but I’m happy with the brother that I have”: A pilot study about intellectual disabilities and family quality of life from the perspective of siblings. Journal of Family Issues, 43, 3148–3167.
  • Davis, K. and Gavidia-Payne, S. 2009. The impact of child, family, and professional support characteristics on the quality of life in families of young children with disabilities. Journal of Intellectual & Developmental Disability, 34, 153–162.
  • Davys, D., Mitchell, D. and Martin, R. 2017. Fathers of people with intellectual disability: A review of the literature. Journal of Intellectual Disabilities : JOID, 21, 175–196.
  • De Boer, A. A. and Munde, V. S. 2015. Parental attitudes toward the inclusion of children with profound intellectual and multiple disabilities in general primary education in the Netherlands. The Journal of Special Education, 49, 179–187.
  • Dermaut, V., Schiettecat, T., Vandevelde, S. and Roets, G. 2020. Citizenship, disability rights and the changing relationship between formal and informal caregivers: It takes three to tango. Disability & Society, 35, 280–302.
  • Gauthier-Boudreault, C., Gallagher, F. and Couture, M. 2017. Specific needs of families of young adults with profound intellectual disability during and after transition to adulthood: What are we missing? Research in Developmental Disabilities, 66, 16–26.
  • Hart, K. M. and Neil, N. 2021. Down syndrome caregivers’ support needs: A mixed-method participatory approach. Journal of Intellectual Disability Research, 65, 60–76.
  • Hiebert-Murphy, D., Trute, B. and Wright, A. 2011. Parents’ definition of effective child disability support services: Implications for implementing family-centered practice. Journal of Family Social Work, 14, 144–158.
  • Jansen, S. L. G., Van der Putten, A. A. J. and Vlaskamp, C. 2013. What parents find important in the support of a child with profound intellectual and multiple disabilities. Child: Care, Health and Development, 39, 432–441.
  • Kruithof, K., Olsman, E., Nieuwenhuijse, A. and Willems, D. 2022. “I hope I’ll outlive him”: A qualitative study of parents’ concerns about being outlived by their child with profound intellectual and multiple disabilities. Journal of Intellectual & Developmental Disability, 47, 107–117.
  • Kyzar, K. B., Turnbull, A. P., Summers, J. A. and Gómez, V. A. 2012. The relationship of family support to family outcomes: A synthesis of key findings from research on severe disability. Research and Practice for Persons with Severe Disabilities, 37, 31–44.
  • Lahaije, S. T. A., Luijkx, J., Waninge, A. and Van der Putten, A. A. J. in press. Well-being of Families With a Child With Profound Intellectual and Multiple Disabilities. Research and Practice for Persons with Severe Disabilities.
  • Luijkx, J., Van der Putten, A. A. J. and Vlaskamp, C. 2017. Time use of parents raising children with severe or profound intellectual and multiple disabilities. Child: Care, Health and Development, 43, 518–526.
  • Luitwieler, N., Luijkx, J., Salavati, M., Van der Schans, C. P., Van der Putten, A. A. J. and Waninge, A. 2021. Variables related to the quality of life of families that have a child with severe to profound intellectual disabilities: A systematic review. Heliyon, 7, e07372.
  • Nakken, H. and Vlaskamp, C. 2007. A need for a taxonomy for profound intellectual and multiple disabilities. Journal of Policy and Practice in Intellectual Disabilities, 4, 83–87.
  • Nugroho, W. S. 2018. Role of state and welfare state: From commons, Keynes to Esping-andersen. JurnalEkonomi&Studi Pembangunan, 19, 101–115.
  • Oldenkamp, M., Bültmann, U., Wittek, R. P., Stolk, R. P., Hagedoorn, M. and Smidt, N. 2018. Combining informal care and paid work: The use of work arrangements by working adult‐child caregivers in the Netherlands. Health & Social Care in the Community, 26, e122–e131.
  • Palisano, R., Rosenbaum, P., Walter, S., Russell, D., Wood, E. and Galuppi, B. 1997. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Developmental medicine and Child Neurology, 39, 214–223.
  • Resch, J. A., Mireles, G., Benz, M. R., Grenwelge, C., Peterson, R. and Zhang, D. 2010. Giving parents a voice: A qualitative study of the challenges experienced by parents of children with disabilities. Rehabilitation Psychology, 55, 139–150.
  • Ryan, C. and Quinlan, E. 2018. Whoever shouts the loudest: Listening to parents of children with disabilities. Journal of Applied Research in Intellectual Disabilities, 31, 203–214.
  • Schalock, R. L., Luckasson, R. and Tassé, M. J. 2021. Intellectual disability: Definition, diagnosis, classification, and systems of supports. 12th ed. Washington, DC: American Association on Intellectual and Developmental Disabilities.
  • Shilling, V., Morris, C., Thompson-Coon, J., Ukoumunne, O., Rogers, M. and Logan, S. 2013. Peer support for parents of children with chronic disabling conditions: A systematic review of quantitative and qualitative studies. Developmental medicine and Child Neurology, 55, 602–609.
  • Siklos, S. and Kerns, K. A. 2006. Assessing need for social support in parents of children with autism and Down syndrome. Journal of Autism and Developmental Disorders, 367, 921–933.
  • Stewart, C. and Cash, W. 2018. Interviewing: Principles and Practices. 15th ed. New York: McGraw-Hill Education.
  • Ten Brug, A., Beernink, J. and Luijkx, J. 2020. Een Copiloot geeft een ZEVMB-gezin lucht en ruimte. Een onderzoek naar gezinnen rondom een kind met ZEVMB, die ondersteund worden door een Copiloot [A Co-pilot let’s a PIMD-family breathe.A study about families with a child with PIMD who are supported by a Co-pilot]. Partoer. https://www.rijksoverheid.nl/documenten/rapporten/2020/09/30/een-copiloot-geeft-een-zevmb-gezin-lucht-en-ruimte
  • Thompson, J. R., Bradley, V. J., Buntinx, W. H., Schalock, R. L., Shogren, K. A., Snell, M. E., Wehmeyer, M. L., Borthwick-Duffy, S., Coulter, D. L., Craig, E. M., Gomez, S. C., Lachapelle, Y., Luckasson, R. A., Reeve, A., Spreat, S., Tassé, M. J., Verdugo, M. A. and Yeager, M. H. 2009. Conceptualizing supports and the support needs of people with intellectual disability. Intellectual and Developmental Disabilities, 47, 135–146.
  • Valentine, K., Reynolds, S., Donegan, D., Ghazali, F. W., Khan, D., Lim, E. Q., Mair Nasser, M. N. S., Mc Grane, F., Corcoran, B., Purcell, C., Isweisi, E., Ó Catháin, N., Roche, E. F., Meehan, J., Allen, J. and Molloy, E. 2022. Communicating a neonatal diagnosis of Down syndrome to parents. Archives of Disease in Childhood, 107, 409–411.
  • Van der Putten, A. A. J., Vlaskamp, C., Luijkx, J. and Poppes, P. 2017. Kinderen en volwassenen met zeer ernstige verstandelijke en meervoudige beperkingen: Tijd voor een nieuw perspectief. [Children and adults with profound intellectual and multiple disabilities: Time for a new perspective] [Position paper]. http://www.qolcentre.eu/wp-content/uploads/2018/09/mensen-meerv-bep-pos-pap-van-derputten-2017.pdf
  • van Timmeren, E. A., van der Schans, C. P., van der Putten, A. A. J., Krijnen, W. P., Steenbergen, H. A., van Schrojenstein Lantman-de Valk, H. M. J. and Waninge, A. 2017. Physical health issues in adults with severe or profound intellectual and motor disabilities: A systematic review of cross-sectional studies. Journal of Intellectual Disability Research, 61, 30–49.
  • Vanderkerken, L., Heyvaert, M., Onghena, P. and Maes, B. 2019. The relation between family quality of life and the family-centered approach in families with children with an intellectual disability. Journal of Policy and Practice in Intellectual Disabilities, 16, 296–311.
  • Vilaseca, R., Gràcia, M., Beltran, F. S., Dalmau, M., Alomar, E., Adam-Alcocer, A. L. and Simó-Pinatella, D. 2017. Needs and supports of people with intellectual disability and their families in Catalonia. Journal of Applied Research in Intellectual Disabilities : JARID, 30, 33–46.
  • Wang, M. and Brown, R. 2009. Family quality of life: A framework for policy and social service provisions to support families of children with disabilities. Journal of Family Social Work, 12, 144–167.
  • Wang, P. and Michaels, C. A. 2009. Chinese families of children with severe disabilities: Family needs and available support. Research and Practice for Persons with Severe Disabilities, 34, 21–32.
  • Woodgate, R. L., Edwards, M., Ripat, J. D., Borton, B. and Rempel, G. 2015. Intense parenting: A qualitative study detailing the experiences of parenting children with complex care needs. BMC Pediatrics, 15, 1–15.
  • Zaal-Schuller, I. H., Willems, D. L., Ewals, F. V., Van Goudoever, J. B. and De Vos, M. A. 2016. How parents and physicians experience end-of-life decision-making for children with profound intellectual and multiple disabilities. Research in Developmental Disabilities, 59, 283–293.
  • Zuna, N. I., Turnbull, A. and Summers, J. A. 2009. Family quality of life: Moving from measurement to application. Journal of Policy and Practice in Intellectual Disabilities, 6, 25–31.