Andrews, M., Squire, C., Tamboukou, M. (2013). Doing narrative research. SAGE Publications.
Google Scholar |
Crossref
Axelsson, A. K., Wilder, J. (2014). Frequency of occurrence and child presence in family activities: A quantitative, comparative study of children with profound intellectual and multiple disabilities and children with typical development. International Journal of Developmental Disabilities, 60(1), 13–25.
https://doi.org/10.1179/2047387712Y.0000000008 Google Scholar
Baart, A. (2004). Een theorie van de presentie (A theory of presence) (3rd ed.). Boom uitgevers Amsterdam.
Google Scholar
Benson, P. L., Scales, P. C. (2009). The definition and preliminary measurement of thriving in adolescence. The Journal of Positive Psychology, 4(1), 85–104.
https://doi.org/10.1080/17439760802399240 Google Scholar
Boelsma, F., Caubo-Damen, I., Schippers, A., Dane, M., Abma, T. A. (2017). Rethinking FQoL: The dynamic interplay between individual and family quality of life. Journal of Policy and Practice in Intellectual Disabilities, 14(1), 31–38.
https://doi.org/10.1111/jppi.12224 Google Scholar
Boelsma, F., Schippers, A., Dane, M., Abma, T. (2018). “Special” families and their “normal” daily lives: Family quality of life and the social environment. International Journal of Child, Youth and Family Studies, 9(4), 107–124.
https://doi.org/10.18357/ijcyfs94201818643 Google Scholar
Bostrom, P. K., Broberg, M. (2014). Openness and avoidance—a longitudinal study of fathers of children with intellectual disability. Journal of Intellectual Disability Research, 58(9), 810–821.
https://doi.org/10.1111/jir.12093 Google Scholar
Braun, V. (2013). Successful qualitative research. A practical guide for beginners. Sage Publications Ltd.
Google Scholar
Braun, V. (2017). Collecting qualitative data. A practical guide to textual, media and virtual techniques. Cambridge University Press.
Google Scholar |
Crossref
Braun, V., Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.
https://doi.org/10.1191/1478088706qp063oa Google Scholar
Breitkreuz, R., Wunderli, L., Savage, A., McConnell, D. (2014). Rethinking resilience in families of children with disabilities: A socioecological approach. Community, Work & Family, 17(3), 346–365.
https://doi.org/10.1080/13668803.2014.893228 Google Scholar
Brown, M. M., Brown, G. C., Sharma, S. (2005). Evidence-based to value-based medicine. American Medical Association.
Google Scholar
Creswell, J. W., Creswell, D. (2018). Research design: Qualitative, quantitative & mixed methods approaches (5th ed.). SAGE Publications.
Google Scholar
Dahlberg, K., Dahlberg, H., Nyström, M. (2008). Reflective Lifeworld Research (2nd ed.). Studentlitteratur.
Google Scholar
Delmar, C. (2013). The interplay between autonomy and dignity: Summarizing patients voices. Medicine, Health Care and Philosophy, 16(4), 975–981.
https://doi.org/10.1007/s11019-012-9416-6 Google Scholar
Ettinger, A. K., Ray, K. N., Burke, J. G., Thompson, J., Navratil, J., Chavis, V., Cole, S., Jenks, T., Miller, E. (2021). A community partnered approach for defining child and youth thriving. Academic Pediatrics, 21(1), 53–62.
https://doi.org/10.1016/j.acap.2020.04.011 Google Scholar
Fahner, J. C., Thölking, T. W., Rietjens, J. A. C., van der Heide, A., van Delden, J. J. M., Kars, M. C. (2020). Towards advance care planning in pediatrics: A qualitative study on envisioning the future as parents of a seriously ill child. European Journal of Pediatrics, 179(9), 1461–1468.
https://doi.org/10.1007/s00431-020-03627-2 Google Scholar
Freeman, M. (2003). Identity and difference in narrative inquiry: A commentary on the articles by Erica Burman, Michele Crossley, Ian Parker, and Shelley Sclater. Narrative Inquiry, 13(2), 331–346.
https://doi.org/10.1075/ni.13.2.06fre Google Scholar
Geuze, L., Goossensen, A. (2019). Parents caring for children with normal life span threatening disabilities: A narrative review of literature. Scandinavian Journal of Caring Sciences, 33(2), 279–297.
https://doi.org/10.1111/scs.12643 Google Scholar
Graungaard, A. H. (2007). How do they manage? The development of a theory of resource-creation through a qualitative study of parents of a severely disabled child. PhD thesis. University of Copenhagen.
Google Scholar
Groot, B. C., Weerman, A., Overbeek, F., Abma, T. A. (2020). Making a difference: Participatory health research with unemployed citizens and policymakers. International Review of Qualitative Research, 13(2), 200–218.
https://doi.org/10.1177/1940844720933227 Google Scholar
Hastings, R. P., Beck, A., Hill, C. (2005). Positive contributions made by children with an intellectual disability in the family: Mothers’ and fathers’ perceptions. Journal of Intellectual Disabilities, 9(2), 155–165.
https://doi.org/9/2/155 Google Scholar
Heilferty, C. M. (2011). Ethical considerations in the study of online illness narratives: A qualitative review. Journal of Advanced Nursing, 67(5), 945–953.
https://doi.org/10.1111/j.1365-2648.2010.05563 Google Scholar
Iles, V. (2014). How good people can offer bad care: Understanding the wider factors in society that encourage non-compassionate care. In Shea, S, Wynyard, R, Lionis, C (Eds.), Providing compassionate healthcare: Challenges in policy and practice (pp. 183–196). Routlegde.
Google Scholar
Jansen, S. (2015). Shared responsibility: A load off your mind: Collaboration with parents in the support of children with profound intellectual and multiple disabilities. University of Groningen.
Google Scholar
Leget, C. (2013). Analyzing dignity: A perspective from the ethics of care. Medicine, Health Care, and Philosophy, 16(4), 945–952.
https://doi.org/10.1007/s11019-012-9427-3 Google Scholar
Luijkx, J. (2016). Family matters: The experiences and opinions of family members of persons with (severe or profound) intellectual disabilities. University of Groningen.
Google Scholar
Luijkx, J., van der Putten, A. A. J., Vlaskamp, C. (2017). Time use of parents raising children with severe or profound intellectual and multiple disabilities. Child: Care, Health and Development, 43(4), 518–526.
https://doi.org/10.1111/cch.12446 Google Scholar
Luijkx, J., van der Putten, A. A. J., Vlaskamp, C. (2019). A valuable burden? The impact of children with profound intellectual and multiple disabilities on family life. Journal of Intellectual & Developmental Disability, 44(2), 184–189.
https://doi.org/10.3109/13668250.2017.1326588 Google Scholar
McConnell, D., Savage, A., Breitkreuz, R. (2014). Resilience in families raising children with disabilities and behavior problems. Research in Developmental Disabilities, 35(4), 833–848.
https://doi.org/10.1016/j.ridd.2014.01.015 Google Scholar
Misak, C. J. (2010). Narrative evidence and evidence-based medicine. Journal of Evaluation in Clinical Practice, 16(2), 392–397.
https://doi.org/10.1111/j.1365-2753.2010.01407 Google Scholar
Muir, K., Strnadová, I. (2014). Whose responsibility? Resilience in families of children with developmental disabilities. Disability & Society, 29(6), 922–937.
https://doi.org/10.1080/09687599.2014.886555 Google Scholar
Nakken, H., Vlaskamp, C. (2007). A need for a taxonomy for profound intellectual and multiple disabilities. Journal of Policy and Practice in Intellectual Disabilities, 4(2), 83–87.
https://doi.org/10.1111/j.1741-1130.2007.00104 Google Scholar
Nieuwenhuijse, A. M., Willems, D. L., van Goudoever, J. B., Echteld, M. A., Olsman, E. (2019). Quality of life of persons with profound intellectual and multiple disabilities: A narrative literature review of concepts, assessment methods and assessors. Journal of Intellectual & Developmental Disability, 44(3), 261–271.
https://doi.org/10.3109/13668250.2017.1388913 Google Scholar
Peer, J. W., Hillman, S. B. (2014). Stress and resilience for parents of children with intellectual and developmental disabilities: A review of key factors and recommendations for practitioners. Journal of Policy and Practice in Intellectual Disabilities, 11(2), 92–98.
https://doi.org/10.1111/jppi.12072 Google Scholar
Riessman, C. K. (2008). Narrative Methods for the Human Sciences. Sage Publications.
Google Scholar
Ripat, J., Woodgate, R. (2011). The intersection of culture, disability and assistive technology. Disability and Rehabilitation: Assistive Technology, 6(2), 87–96.
https://doi.org/10.3109/17483107.2010.507859 Google Scholar
Sandelowski, M. (2000). Whatever happened to qualitative description? Research in Nursing & Health, 23(4), 334–340.
https://doi.org/10.1002/1098-240x(200008)23:43.0.co;2-g
Google Scholar
Scully, J. L. (2014). Disability and vulnerability. On bodies, dependence, and power. In Mackenzie, C., Rogers, W., Dodds, S. (Eds.), Vulnerability: New Essays in Ethics and Feminist Philosophy (pp. 204–221). Oxford University Press.
Google Scholar
Seliner, B., Latal, B., Spirig, R. (2016). When children with profound multiple disabilities are hospitalized: A cross-sectional survey of parental burden of care, quality of life of parents and their hospitalized children, and satisfaction with family-centered care. Journal for Specialists in Pediatric Nursing, 21(3), 147–157.
https://doi.org/10.1111/jspn.12150 Google Scholar
Smith, J., Swallow, V., Coyne, I. (2015). Involving parents in managing their child’s long-term condition-a concept synthesis of family-centered care and partnership-in-care. Journal of Pediatric Nursing, 30(1), 143–159.
https://doi.org/10.1016/j.pedn.2014.10.014 Google Scholar
Tadema, A. C., Vlaskamp, C. (2010). The time and effort in taking care for children with profound intellectual and multiple disabilities: A study on care load and support. British Journal of Learning Disabilities, 38(1), 41–48.
https://doi.org/10.1111/j.1468-3156.2009.00561 Google Scholar
Todres, L., Galvin, K. T., Dahlberg, K. (2014). “Caring for insiderness”: Phenomenologically informed insights that can guide practice. International Journal of Qualitative Studies on Health and Well-Being, 9(1), 21421.
https://doi.org/10.3402/qhw.v9.21421 Google Scholar
Tracy, S. J. (2020). Qualitative Research Methods. Collecting Evidence, Crafting Analysis, Communicating Impact. Wiley Blackwell.
Google Scholar
Tronto, J. C. (1993). Moral boundaries. A political argument for an ethic of care. Routledge.
Google Scholar
United Nations . (2006). Convention on the Rights of Persons with Disabilities (CRPD).
https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html Google Scholar
van der Putten, A., Vlaskamp, C., Luijkx, J., Poppes, P. (2017). Position paper research centre on profound and multiple disabilities. Groningen: University of Groningen, Research Centre PMD.
https://www.rug.nl/gmw/pedagogy-and-educational-sciences/research/researchpmd/mensen-met-zeer-ernstige-verstandelijke-en-meervoudige-beperkingen.pdf Google Scholar
Whiting, M. (2014). Children with disability and complex health needs: The impact on family life. Nursing Children and Young People, 26(3), 26–30.
https://doi.org/10.7748/ncyp2014.04.26.3.26.e388 Google Scholar
Widdershoven, G. A. M., Smits, M. J. (1996). Ethics and narratives. In Josselson, R. (Ed.), Ethics and process in the narrative study of lives (4th ed., pp. 275–287). SAGE.
Google Scholar |
Crossref
Woodgate, R. L., Edwards, M., Ripat, J. (2012). How families of children with complex care needs participate in everyday life. Social Science & Medicine (1982), 75(10), 1912–1920.
https://doi.org/10.1016/j.socscimed.2012.07.037 Google Scholar
Woodgate, R. L., Edwards, M., Ripat, J. D., Borton, B., Rempel, G. (2015). Intense parenting: A qualitative study detailing the experiences of parenting children with complex care needs. BMC Pediatrics, 15, 197.
https://doi.org/10.1186/s12887-015-0514-5 Google Scholar
Zaal-Schuller, I., Willems, D. L., Ewals, F. V. P. M., van Goudoever, J. B., 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.
https://doi.org/10.1016/j.ridd.2016.09.012 Google Scholar
留言 (0)