Safety and health challenges affecting the informal caregivers of children

References

• Anderson, R., B. Mikuliç, G. Vermeylen, M. Lyly-Yrjanainen, and V. Zigante. 2009. “Second European Quality of Life Survey – Overview.” European Foundation for the Improvement of Living and Working Conditions, Luxembourg: Office for Official Publications of the European Communities. ISBN 978-92-897-0847-0.
   Google Scholar
• Baby, M., P. Glue, and D. Carlyle. 2014. “‘Violence Is Not Part of Our Job’: A Thematic Analysis of Psychiatric Mental Health Nurses’ Experiences of Patient Assaults from A New Zealand Perspective.” Issues in Mental Health Nursing 35 (9): 647–655. doi:10.3109/01612840.2014.892552.
   PubMed Web of Science ®Google Scholar
• Berglund, E., P. Lytsy, and R. Westerling. 2015. “Health and Wellbeing in Informal Caregivers and Non-caregivers: A Comparative Cross-sectional Study of the Swedish A General Population.” Health and Quality of Life Outcomes 13 (109): 1–11. doi:10.1186/s12955-015-0309-2.
   PubMedGoogle Scholar
• Brehaut, J. C., D. E. Kohen, R. E. Garner, A. R. Miller, L. M. Lach, A. F. Klassen, and P. L. Rosenbaum. 2009. “Health among Caregivers of Children with Health Problems: Findings from a Canadian Population-Based Study.” American Journal of Public Health 99 (7): 1254–1262. doi:10.2105/AJPH.2007.129817.
   PubMed Web of Science ®Google Scholar
• Cachia, R. L., A. Anderson, and D. W. Moore. 2016. “Mindfulness, Stress and Well-Being in Parents of Children with Autism Spectrum Disorder: A Systematic Review.” Journal of Child and Family Studies 25 (1): 1–14. doi:10.1007/s10826-015-0193-8.
   Web of Science ®Google Scholar
• Caicedo, C. 2014. “Families with Special Needs Children: Family Health, Functioning, and Care Burden.” Journal of the American Psychiatric Nurses Association 20 (6): 398–407. doi:10.1177/1078390314561326.
   PubMed Web of Science ®Google Scholar
• Carayon, and Smith. 2000. “Work Organization and Ergonomics.” Applied Ergonomics 31 (6): 649–662. doi:10.1016/S0003-6870(00)00040-5.
   PubMed Web of Science ®Google Scholar
• Carayon, P. 2006. “Human Factors of Complex Sociotechnical Systems.” Applied Ergonomics 37 (4): 525–535. doi:10.1016/j.apergo.2006.04.011.
   PubMed Web of Science ®Google Scholar
• Carayon, P. 2009. “The Balance Theory and the Work System Model … Twenty Years Later.” International Journal of Human-computer Interaction 25 (5): 313–327. doi:10.1080/10447310902864928.
   Web of Science ®Google Scholar
• Care Alliance Ireland. 2008. Health and Wellbeing of Family Carers in Ireland: Results of a Survey of Recipients of the Carer’s Allowance. Dublin: Care Alliance Ireland. http://www.carealliance.ie/userfiles/file/CareAllianceIrelandHealthandWellbeingofFamilyCarersNov2008.pdf
   Google Scholar
• Care Alliance Ireland. 2010. Family Caring in Ireland. Dublin. http://www.carealliance.ie/userfiles/file/Family Caring in IrelandAugust2010.pdf
   Google Scholar
• Central Association of Carers in Finland. 2018. “Carers Finland.” https://omaishoitajat.fi/carers-finland/
   Google Scholar
• Collins, A., N. Hennessy-Anderson, S. Hosking, J. Hynson, C. Remedios, and K. Thomas. 2016. “Lived Experiences of Parents Caring for A Child with A Life-limiting Condition in Australia: A Qualitative Study.” Palliative Medicine 30 (10): 950–959. doi:10.1177/0269216316634245.
   PubMed Web of Science ®Google Scholar
• Dul, J., R. Bruder, P. Buckle, P. Carayon, P. Falzon, W. Marras, J. Wilson et al. 2012. “A Strategy for Human Factors/ergonomics: Developing the Discipline and Profession.” Ergonomics 55 (4): 377–395. doi:10.1080/00140139.2012.661087.
   PubMed Web of Science ®Google Scholar
• Emerson, E. 2003. “Mothers of Children and Adolescents with Intellectual Disability: Social and Economic Situation, Mental Health Status, and the Self-assessed Social and Psychological Impact of the Child’s Difficultie.” Journal of Intellectual Disability Research 47 (4): 385–399. doi:10.1046/j.1365-2788.2003.00498.x.
   PubMedGoogle Scholar
• Farrell, G. A., T. Shafiei, and S. P. Chan. 2014. “Patient and Visitor Assault on Nurses and Midwives: An Exploratory Study of Employer ‘Protective’ Factors.” International Journal of Mental Health Nursing 23 (1): 88–96. doi:10.1111/inm.12002.
   PubMed Web of Science ®Google Scholar
• Finlex. 2005. “Laki Omaishoidon Tuesta 937/2005 (Act on Support for Informal Care).” Accessed February 19 2018. http://www.finlex.fi/fi/laki/ajantasa/2005/20050937
   Google Scholar
• Flick, U. 2009. An Introduction to Qualitative Research. 4th ed. London: SAGE Publications.
   Google Scholar
• Gideon, L. 2012. Handbook of Survey Methodology for the Social Sciences. New York: Springer Science+Business Media.
   Google Scholar
• Glendinning, C., F. Tjadens, H. Arksey, M. Moree, N. Moran, and H. Nies. 2009. Care Provision within Families and Its Socio-Economic Impact on Care Providers, York Social Policy Unit. Social Policy Research Unit, University of York. http://eprints.whiterose.ac.uk/73507/
   Google Scholar
• Glendon, A. I., and S. G. Clarke. 2016. Human Safety and Risk Management. A Psychological Perspective. 3rd ed. Boca Raton, FL: CRC Press.
   Google Scholar
• Grady, P. A., M. Gullatte, and L. M. Rosenbaum. 2014. “The 2014 National Nursing Research Roundtable: The Science of Caregiving.” Nursing Outlook 62 (5): 362–365. doi:10.1016/j.outlook.2014.05.007.
   PubMed Web of Science ®Google Scholar
• Hanson, G. C., N. A. Perrin, H. Moss, N. Laharnar, and N. Glass. 2015. “Workplace Violence against Homecare Workers and Its Relationship with Workers Health Outcomes: A Cross-sectional Study.” BMC Public Health 15 (11): 1–13. doi:10.1186/s12889-014-1340-7.
   PubMedGoogle Scholar
• Hendrick, H. W. 2002. “An Overview of Macroergonomics.” In Macroergonomics: Theory, Methods and Applications, edited by H. W. Hendrick and B. M. Kleiner, 1–23. Mahwah, NJ: Lawrence Erlbaum Associates.
   Google Scholar
• Hiel, L., M. A. Beenackers, C. M. Renders, S. J. W. Robroek, A. Burdorf, and S. Croezen. 2015. “Providing Personal Informal Care to Older European Adults: Should We Care about the Caregivers’ Health?” Preventive Medicine 70: 64–68. Elsevier Inc. doi:10.1016/j.ypmed.2014.10.028.
   PubMed Web of Science ®Google Scholar
• Hoffmann, F., and R. Rodrigues. 2010. “Informal Carers: Who Takes Care of Them?” Policy Brief. Vienna: European Centre for Social Welfare Policy and Research. April. http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.627.6793&rep=rep1&type=pdf
   Google Scholar
• Hollnagel, E., D. D. Woods, and N. C. Leveson. 2006. Resilience Engineering: Concepts and Precepts. Aldershot, UK: Ashgate.
   Google Scholar
• Huber, M., R. Rodrigues, F. Hoffmann, K. Gasior, and B. Marin. 2009. “Facts and Figures on Long-Term Care. Europe and North America.” Occasional Reports Series 6. Vienna: European Centre.
   Google Scholar
• International Alliance of Carer Organizations. 2018. “Recognizing Carers.” http://www.internationalcarers.org/carer-facts/
   Google Scholar
• International Labour Organisation (ILO). 2017. “Decent Work and the 2030 Agenda for Sustainable Development.” https://www.ilo.org/global/topics/sdg-2030/lang–en/index.htm
   Google Scholar
• Karwowski, W. 2005. “Ergonomics and Human Factors: The Paradigms for Science, Engineering, Design, Technology and Management of Human- Compatible Systems.” Ergonomics 48 (5): 436–463. doi:10.1080/00140130400029167.
   PubMed Web of Science ®Google Scholar
• Kehusmaa, S., I. Autti-Rämö, H. Helenius, and P. Rissanen. 2013. “Does Informal Care Reduce Public Care Expenditure on Elderly Care? Estimates Based on Finland’s Age Study.” BMC Health Services Research 13 (317). doi:10.1186/1472-6963-13-317.
   PubMedGoogle Scholar
• KHO. 2005. “The Decision of Finnish Supreme Court, 21. 1.2005/115KHO:2005:6.” Accessed June 18 2020. https://www.finlex.fi/fi/oikeus/kho/vuosikirjat/2005/200500115
   Google Scholar
• KHO. 2007. “The Decision of Finnish Supreme Court 14. 11.2007/2900KHO:2007:79.” Accessed June 18 2020. https://www.finlex.fi/fi/oikeus/kho/vuosikirjat/2007/200702900
   Google Scholar
• Kim, K., J. Kim, A. Voight, and M. Ji. 2018. “Listening to the Screaming Whisper: A Voice of Mother Caregivers of Children with Autistic Spectrum Disorder (ASD).” International Journal of Qualitative Studies on Health and Well-being 13 (1): 1479585. Taylor & Francis. doi10.1080/17482631.2018.1479585.
   Web of Science ®Google Scholar
• Law, M., S. Finkelman, P. Hurley, P. Rosenbaum, S. King, G. King, and S. Hanna. 2004. “Participation of Children with Physical Disabilities: Relationship with Diagnosis, Physical Function, and Demographic Variables.” Scandinavian Journal of Occupational Therapy 11 (4): 156–162. doi:10.1080/11038120410020755.
   Google Scholar
• Leinonen, A. 2011. “Informal Family Carers and Lack of Personal Time: Descriptions of Being outside the Sphere of Formal Help.” Nordic Social Work Research 1 (2): 91–108. doi:10.1080/2156857X.2011.601142.
   Google Scholar
• Leitner, A., and A. Wroblewski. 2006. “Welfare States and Work–life Balance.” European Societies 8 (2): 295–317. doi:10.1080/14616690600645092.
   Web of Science ®Google Scholar
• Lindholm, M., and M. Keväjärvi. 2017. “Informal Caregivers’ Perceptions of Their Physical Load Issues and Safety.„ In Joy at Work. NES 20-23 August 2017 Conference Proceedings, edited by A.-L. Osvalder, M. Blomé, and H. Bodnar, 346–353.
   Google Scholar
• Martens, C. T. 2018. “Eldercare Policies in Scandinavia between 1993 and 2014: Increased Facilitation of Family Caregiving?” Nordic Journal of Social Research 9: 48–67. doi:10.7577/njsr.2145.
   Google Scholar
• Mestheneos, E., and J. Triantafillou. 2005. Supporting Family Carers of Older People in Europe - the Pan-European Background Report. Empirical Evidence, Policy Trends and Future Perspectives. Munster, Germany: LIT-Verlag.
   Google Scholar
• Ministry of Social Affairs and Health. 2020. “Dependent Care Allowance.” Accessed June 16 2020. https://valtioneuvosto.fi/artikkeli/-/asset_publisher/1271139/kuntainfo-omaishoidon-tuen-hoitopalkkiot-vuonna-2020
   Google Scholar
• Murphy, N. A., B. Christian, D. A. Caplin, and P. C. Young. 2007. “The Health of Caregivers for Children with Disabilities: Caregiver Perspectives.” Child: Care, Health and Development 33 (2): 180–187.
   PubMed Web of Science ®Google Scholar
• Muscara, F., M. C. McCarthy, E. J. Thompson, C. M. Heaney, S. J. C. Hearps, M. Rayner, K. Burke et al. 2017. “Psychosocial, Demographic, and Illness-Related Factors Associated with Acute Traumatic Stress Responses in Parents of Children with a Serious Illness or Injury.” Journal of Traumatic Stress 30 (3): 237–244. doi:10.1002/jts.22193.
   PubMed Web of Science ®Google Scholar
• Official Statistics of Finland (OSF). 2017. Structure of Earnings. Helsinki: Statistics Finland. http://www.stat.fi/til/pra/2017/pra_2017_2018-09-13_tie_001_en.html
   Google Scholar
• Olin, E., and A. Dunér. 2016. “A Matter of Love and Labour? Parents Working as Personal Assistants for Their Adult Disabled Children.” Nordic Social Work Research 6 (1): 38–52. doi:10.1080/2156857X.2015.1099116.
   Google Scholar
• Overgaard, C. 2019. “Rethinking Volunteering as a Form of Unpaid Work.” Nonprofit and Voluntary Sector Quarterly 48 (1): 128–145. doi:10.1177/0899764018809419.
   Web of Science ®Google Scholar
• Raina, P., M. O’Donnel, P. Rosenbaum, J. Brehaut, S. Walter, D. Russell, M. Swinton et al. 2005. “The Health and Well-Being of Caregivers of Children with Cerebral Palsy.” Pediatrics 115 (6): 626–636. doi:10.1542/peds.2004-1689.
   PubMed Web of Science ®Google Scholar
• Reiman, A., and S. Väyrynen. 2018. “Holistic Well-being and Sustainable Organisations – A Review and Argumentative Propositions.” International Journal of Sustainable Engineering 11 (5): 321–329. Taylor & Francis.doi10.1080/19397038.2018.1474397.
   Web of Science ®Google Scholar
• Särkikangas, U., and M. Autio. 2017. “Families with Special Needs Children Consuming Social and Health Care Services – Visible and Invisible Activities of Daily Life: Naples Forum on Service 2017/Working Paper.” In Proceedings of the 5th Naples Forum on Service: Service Dominant Logic, Network and Systems Theory and Service Science: Integrating Three Perspectives for a New Service Agenda, edited by G. Evert, M. Cristina, and P. Francesco, 1–17. Sorrento.
   Google Scholar
• Schulte, P., and H. Vainio. 2010. “Well-Being at Work – Overview and Perspective.” Scandinavian Journal of Work, Environment & Health 36 (5): 422–429. doi:10.5271/sjweh.3076.
   PubMed Web of Science ®Google Scholar
• Smith, A. M., and J. G. Grzywacz. 2014. “Health and Well-being in Midlife Parents of Children with Special Health Needs.” Families, Systems and Health 32 (3): 303–312. doi:10.1037/fsh0000049.
   PubMed Web of Science ®Google Scholar
• Smith, M., and P. Carayon-Sainfort. 1989. “A Balance Theory of Job Design for Stress Reduction.” International Journal of Industrial Ergonomics 4 (1): 67–69. doi:10.1016/0169-8141(89)90051-6.
   Google Scholar
• Strauss, A., and J. Corbin. 1998. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. Thousand Oaks CA: SAGE Publications .
   Google Scholar
• Strickland, B. B., P. C. Van Dyck, M. D. Kogan, C. Lauver, S. J. Blumberg, C. D. Bethell, and P. W. Newacheck. 2011. “Assessing and Ensuring A Comprehensive System of Services for Children with Special Health Care Needs: A Public Health Approach.” American Journal of Public Health 101 (2): 224–231. doi:10.2105/AJPH.2009.177915.
   PubMed Web of Science ®Google Scholar
• Thapar, A., M. Cooper, and M. Rutter. 2017. “Neurodevelopmental Disorders.” The Lancet Psychiatry 4 (4): 339–346. doi:10.1016/S2215-0366(16)30376-5.
   PubMed Web of Science ®Google Scholar
• THL. 2020. “Sotkanet.fi Statistics and Indicator Bank, the Finnish Institute for Health and Welfare 2005–2020.” Accessed June 16 2020. https://sotkanet.fi/sotkanet/en/haku
   Google Scholar
• Väyrynen, S., H. Jounila, J. Latva-Ranta, S. Pikkarainen, and K. von Weissenberg. 2016. “HSEQ Assessment Procedure for Supplying Network: A Tool for Promoting Sustainability and Safety Culture in SMEs.” In Ergonomics and Human Factors in Safety Management, edited by P. Arezes and P. V. Rodrigues de Carvalho, 83–108. Boca Raton, FL: CRC, Taylor & Francis Group.
   Google Scholar
• Verbeek, J. H., K. P. Martimo, J. Karppinen, P. P. Kuijer, E. Viikari-Juntura, and E. P. Takala. 2011. “Manual Material Handling Advice and Assistive Devices for Preventing and Treating Back Pain in Workers.” Cochrane Database of Systematic Reviews 15 (6). doi:10.1002/14651858.CD005958.pub3.
   Google Scholar
• Vonneilich, N., D. Lüdecke, and C. Kofahl. 2016. “The Impact of Care on Family and Health-related Quality of Life of Parents with Chronically Ill and Disabled Children.” Disability and Rehabilitation 38 (8): 761–767. doi:10.3109/09638288.2015.1060267.
   PubMed Web of Science ®Google Scholar
• Workers’ Compensation Act. 2015. “Workers’ Compensation Act 459/2015.” Accessed March 2 2018. http://www.finlex.fi/en/laki/kaannokset/2015/en20150459
   Google Scholar
• Yamaoka, Y., N. Tamiya, N. Izumida, A. Kawamura, H. Takahashi, and H. Noguchi. 2016. “The Relationship between Raising a Child with a Disability and the Mental Health of Mothers Compared to Raising a Child without Disability in Japan.” SSM - Population Health, Elsevier 2: 542–548. doi:10.1016/j.ssmph.2016.08.001.
   PubMed Web of Science ®Google Scholar