Abstracts
Abstract
This paper explores how values for quality of life are being expressed and practiced in residential institutions for people with disabilities in Greenland and how this corresponds with and reflects peqqinneq and its key values of balance, acceptance, and harmony. In this study, peqqinneq encompasses a holistic understanding of what quality of life constitutes for the residents. Data was generated through qualitative interviews with 29 managers and employees and 16 residents from 8 residential institutions and is supplemented with observational data from 7 residential institutions. Our analysis focuses mainly on informants’ perceptions of quality of life, meaningful activities, and social relations, including the role of relatives.
Keywords:
- Disability,
- quality of life,
- Kalaallit health and well-being,
- residential institutions,
- Greenland
Résumé
Cet article explore la manière dont les valeurs de la qualité de vie sont exprimées et mises en pratique dans les institutions résidentielles pour personnes handicapées au Groenland, et comment cela correspond et reflète le peqqinneq et ses valeurs clés d’équilibre, d’acceptation et d’harmonie. Dans cette étude, la peqqinneq englobe une compréhension holistique de ce que constitue la qualité de vie pour les résidents. Les données ont été générées par des entretiens qualitatifs avec 29 directeurs et employés et 16 résidents de 8 institutions résidentielles et sont complétées par des données d’observation de 7 institutions résidentielles. Notre analyse se concentre principalement sur les perceptions qu’ont les informateurs de la qualité de vie, des activités utiles et des relations sociales, y compris le rôle des proches.
Mots-clés :
- Handicaps,
- qualité de vie,
- santé et bien-être des Kalaallit,
- institutions résidentielles,
- Groenland
Appendices
References
- Ahlmark, N., M. Davidsen, C. V. L. Larsen, and P. V. Pedersen. 2019. Sundhedsprofil for socialt udsatte grønlaendere i Danmark. SUSY UDSAT. [Health profile for socially vulnerable Greenlanders in Denmark]. Copenhagen: National Institute of Public Health, University of Southern Denmark.
- Arnfjord, S., A. I. H. Jonsson, and D. Daverkosen. 2020. HOLDNINGER TIL HANDICAP 2020 - En undersøgelse af befolkningens holdninger til personer med handicap i samfundet og på arbejdsmarkedet [Attitudes towards disability 2020 – A study of the population’s attitudes towards individuals with disabilities in society and in the labour market]. Tilioq and Ilisimatusarfik.
- Barker, A. 1990. “The Quality of Life: The Missing Measurement in Health Care.” Journal of the Royal Society of Medicine 83 (8): 539–540.
- BDO (Binder Dijker Otte & Co.). 2014. Evaluering af opgaveoverdragelse på handicapområdet [Evaluation of task delegation on the disability area]. https://tilioq.gl/media/bv4budfl/rapport_handicap_final_da-bdo-2014.pdf.
- Bigby, C., and J. Beadle-Brown. 2018. “Improving Quality of Life Outcomes in Supported Accommodation for People with Intellectual Disability: What Makes a Difference?” Journal of Applied Research in Intellectual Disabilities 31 (2): 182–200.
- Brown, I., and R. I. Brown. 2009. “Choice as an Aspect of Quality of Life for People With Intellectual Disabilities.” Journal of Policy and Practice in Intellectual Disabilities 6 (1): 11–18.
- Christiansen, M., N. C. Steenholdt, I. Olesen, C. Ingemann, and C. V. L. Larsen. 2023. Dukkeprojektet i Grønland – Evaluering af brugen af babysimulatorer i seksualundervisningen i den grønlandske folkeskole [The Doll Project in Greenland - Evaluation of the use of baby simulators in sex education in greenlandic public schools]. Copenhagen: National Institute of Public Health, University of Southern Denmark.
- Conti, A. A. 2018. “Historical Evolution of the Concept of Health in Western Medicine.” Acta Biomed 89 (3): 352–354. https://doi.org/10.23750/abm.v89i3.6739.
- Crocker, M., C. Hutchinson, C. Mpundu-Kaambwa, R. Walker, G. Chen, and J. Ratcliffe. 2021. “Assessing the Relative Importance of Key Quality of Life Dimensions for People with and without a Disability: An Empirical Ranking Comparison Study.” Health and Quality of Life Outcomes 19 (264). https://doi.org/10.1186/s12955-021-01901-x.
- Det Etiske Råd. (2016). Hvad er sygdom?[What is illness?]. Background text. Danish Council of Ethics.
- Eggleton, I., S. Robertson, J. Ryan, and R. Kober. 1999. “The Impact of Employment on the Quality of Life of People with an Intellectual Disability.” Journal of Vocational Rehabilitation 13 (2): 95–107.
- Greenland’s Council for Human Rights and Institute for Human Rights – Denmark’s National Human Rights Institution. 2019. Disability - Status in Grønland.
- Hedwig, T. 2009. “The Boundaries of Inclusion for Iñupiat Experiencing Disability in Alaska.” Alaska Journal of Anthropology 7 (1): 123–138.
- Knigge, M. L., and S. G. Jensen. 2008. Forvist til forsorg: Grønlaendere med handicap nedsendt til Danmark [Exiled to welfare: Greenlanders with disabilities sent to Denmark]. Assens: Udvikling.
- Knudsen, P., S. B. Olsen, P. Holm, J. Holst, and B. Perlt. 1989. LEVs forskergruppe om udviklingshaemmedes livskvalitet [LEV’s research group on the quality of life of people with developmental disabilities]. Landsforeningen LEV.
- Kober, R., and R. C. Eggleton. 2005. “The Effect of Different Types of Employment on Quality of Life.” Journal of Intellectual Disability Research 49 (10): 756–760.
- Kuyken, W. 1995. “The World Health Organization Quality Of Life Assessment (WHOQOL): Position Paper From The World Health Organization.” Social Science and Medicine 41 (10): 1403–1409.
- Melbøe, L. 2018. “Cultural Sensitivity and Barriers: Sami People with Disabilities Facing the Welfare System.” Community Development Journal 53 (3): 537–555.
- Melbøe, L., and H. Gjertsen. 2019. “Hate Speech Targeting Sami People with Disabilities. In Disability Hate Speech – Social, Cultural and Political Context, edited by M. Sherry, T. Olsen, J. Vedeler, and J. Eriksen, 1–266. London: Routledge.
- Mifflin, T. M., and M. Bzdell. 2010. “Development of a Physiotherapy Prioritization Tool in the Baffin Region of Nunavut: A Remote, Under-serviced Area in the Canadian Arctic.” The International Electronic Journal of Rural and Remote Health Research, Education, Practice, and Policy 10 (2): 1–15. https://www.rrh.org.au/journal/article/1466.
- Nørtoft, K., B. Jensen, S. Sørensen, I. Olsen, S. Arnfjord, and S. E. Rubin. 2023. Beboerperspektiver på døgntilbud til mennesker med handicap [Resident perspectives on residential facilities for people with disabilities ]. Copenhagen: National Institute of Public Health, University of Southern Denmark .
- Naalakkersuisut. 2020. Personer med vidtgående handicap. Statistisk opgørelse over personer med vidtgående handicap. [People with severe disabilities. Statistical compilation of people with severe disabilities.]. Government of Greenland Statistical report.
- Naalakkersuisut. 2020. INUUNERITTA III. 2020. Naalakkersuisuts strategi for samarbejdet om det gode børneliv 2020-2030 [Naalakkersuisut’s strategy for collaboration on the good childhood 2020-2030].
- Naalakkersuisut. 2022. Redegørelse for Grønlands efterlevelse af FN’s Konvention om Rettigheder for Personer med Handicap [Report on Greenland’s compliance with the UN Convention on the Rights of Persons with Disabilities].
- Naalakkersuisut. 2023. Døgninstitutionernes og Døgntilbuddenes Årsberetning 2022 [The Annual Report 2022 of Residential Institutions]. The Department for Children, Youth, and Families.
- Olesen, I., C. V. L. Larsen, C. B. Ottendahl, S. E. Rubin, P. Bjerregaard, and T. Jensen. 2023. Muligheder og begraensninger for fødselsbetjeningen set i et udviklingsperspektiv – En undersøgelse af familier og fagpersoners syn på adgang til fødesteder i Grønland [Opportunities and limitations in maternity services from a developmental perspective – A study of families’ and professionals’ views on access to birthing facilities in Greenland. Copenhagen: National Institute of Public Health, University of Southern Denmark.
- Ottendahl, C. B., P. Bjerregaard, D. L. Svartá, I. K. Sørensen, I. Olesen, M. S. Nielsen, and C. V. L. Larsen. 2021. Mental sundhed og helbred blandt 15-34 årige i Grønland [Mental health and well-being among 15-34 year olds in Greenland]. Copenhagen: National Institute of Public Health, University of Southern Denmark.
- Ottendahl, C. B., C. R. Lynge, C. M. Rasmussen, E. C. Aidt, E. Finne, I. Olsen, and C. V. L. Larsen. 2023. Qeqqata Modellen - Et partnerskab for at fremme sundhed og trivsel blandt børn i Qeqqata Kommunia [The Qeqqata Model - A partnership to promote health and well-being among children in Qeqqata Municipality]. Copenhagen: National Institute of Public Health, University of Southern Denmark.
- Robison, J. 2003. Disability… It’s not in me… It’s out there. A Comparative Ethnography of Environmental Factors Influencing Participation in Three Baffin Island Communities. Kingston, ON, Canada: Queen’s University
- Rubin, S. E., S. Sørensen, E. Jensen, I. Olsen, S. Arnfjord, B. Jensen, and K. Nørtoft. 2023. Generelle vilkår på døgntilbud til mennesker med handicap [General conditions in residential facilities for people with disabilities]. Copenhagen: National Institute of Public Health, University of Southern Denmark.
- Schalock, R. L. 2004. “The Concept of Quality of Life: What We Know and Do Not Know.” Journal of Intellectual Disability Research 48 (3): 203–216.
- Senftleber, N. K., M. Overvad, I. K. Dahl-Petersen, P. Bjerregaard, and M. E. Jørgensen. 2021. “Diet and Physical Activity in Greenland: Genetic Interactions and Associations with Obesity and Diabetes.” Applied Physiology, Nutrition, and Metabolism 46 (8): 849–855. https://doi.org/https://doi.org/10.1139/apnm-2021-0020.
- Silvano, G. 2021. “A Brief History of Western Medicine.” Journal of Traditional Chinese Medical Sciences 8 (1): 10–16. https://doi.org/https://doi.org/10.1016/j.jtcms.2020.06.002.
- Simoes, C., and S. Santos. 2016. “Comparing the Quality of Life of Adults with and without Intellectual Disability.” Journal of Intellectual Disability Research 60 (4): 378–388. https://doi.org/doi:10.1111/jir.12256.
- Statistics Greenland. 2023. Grønland i tal [Greenland in numbers]. https://stat.gl/dialog/main.asp?lang=da&version=2023&sc=GF&colcode=p.
- Steenholdt, N. C. 2022. “Subjective Well-Being and the Importance of Nature in Greenland.” Arctic Anthropology 58 (1): 66–79. https://doi.org/10.3368/aa.58.1.66.
- Steenholdt, N. C., and D. Chimirri. 2018. “Tourism and Quality of Life in Greenland: Exploration through Farm Stays in South Greenlandic Settlements.” The Arctic Yearbook, 123–140.
- Tilioq. 2019. Tilioq Aallaannaqaaq kommune kujallermut angalanermik nalunaarut 2019. Tilioq søsaetter kajakken – rejserapport kommune Kujalleq 2019. [Tilioq launches the kayak – travel report, Kujalleq municipality 2019]. https://tilioq.gl/media/wwphevun/tilioq-rejserapport-2019-endelig.pdf.
- WHO. 2012. Programme on mental health. WHOQOL User Manual. https://iris.who.int/handle/10665/77932.
- Williams, K., P. Jacoby, A. Whitehouse, R. Kim, A. Epstein, N. Murphy, and J. Downs. 2020. “Functioning, Participation, and Quality of Life in Children with Intellectual Disability: An Observational Study.” Developmental Medicine & Child Neurology 63 (1): 89–96. https://doi.org/10.1111/dmcn.14657.
- Wistoft, K. 2012. Trivsel og Selvvaerd. Mental Sundhed i Skolen [Well-being and self-esteem: Mental health in schools ]. København: Hans Reitzels Forlag.