Support services for informal carers: a register-based case–control study of Norwegian care recipients

Authors:
Lisa Victoria Burrell Norwegian University of Science and Technology, Norway

Search for other papers by Lisa Victoria Burrell in
Current site
Google Scholar
Close
,
Tore Wentzel-Larsen Norwegian University of Science and Technology, Norway

Search for other papers by Tore Wentzel-Larsen in
Current site
Google Scholar
Close
, and
Maren Kristine Raknes Sogstad Norwegian University of Science and Technology, Norway

Search for other papers by Maren Kristine Raknes Sogstad in
Current site
Google Scholar
Close
Restricted access
Get eTOC alerts
Rights and permissions Cite this article

This article aims to describe support services for informal carers and identify the characteristics of the care recipient and municipality that are associated with the allocation of these services. Care recipients were selected from the Norwegian Registry for Primary Health Care on 31 December 2019. Cases received care benefits (N = 9,816), respite care in institutions (N = 2,594) or respite care at home (N = 7,346); controls received home-based services only (N = 193,402). Municipal data were retrieved from the Municipality-State-Reporting register. Child and adolescent care recipients most often received support services, but allocation to this age group differed extensively between municipalities. Greater cognitive disability and cohabiting increased the odds of support services.

  • Ambugo, E.A., de Bruin, S.R., Masana, L., MacInnes, J., Mateu, N.C., Hagen, T.P., et al (2021) A cross-European study of informal carers’ needs in the context of caring for older people, and their experiences with professionals working in integrated care settings, International Journal of Integrated Care, 21(3): 2. doi: 10.5334/ijic.5547

    • Search Google Scholar
    • Export Citation
  • Anttonen, A. and Sipilä, J. (2012) Universalism in the British and Scandinavian social policy debates, in A. Anttonen, L. Häikiö and K. Stefánsson (eds) Welfare State, Universalism and Diversity, Cheltenham: Edward Elgar, pp 1642.

    • Search Google Scholar
    • Export Citation
  • Bakken, I.J., Ariansen, A.M.S., Knudsen, G.P., Johansen, K.I. and Vollset, S.E. (2020) The Norwegian Patient Registry and the Norwegian Registry for Primary Health Care: research potential of two nationwide health-care registries, Scandinavian Journal of Public Health, 48(1): 4955. doi: 10.1177/1403494819859737

    • Search Google Scholar
    • Export Citation
  • Beyrer, S., Otnes, B. and Karlsen, H.T. (2018) Kvalitet i IPLOS-Registeret 2017. Gjennomgang av Datakvaliteten på Kommunenes IPLOS-Rapportering [Quality in the IPLOS Register 2017. Review of the Data Quality of Municipalities’ IPLOS Reporting], Oslo: Statistics Norway.

    • Search Google Scholar
    • Export Citation
  • Bigonnesse, C. and Chaudhury, H. (2019) The landscape of ‘aging in place’ in gerontology literature: emergence, theoretical perspectives, and influencing factors, Journal of Housing for the Elderly, 34(3): 23351. doi: 10.1080/02763893.2019.1638875

    • Search Google Scholar
    • Export Citation
  • Bonsang, E. (2009) Does informal care from children to their elderly parents substitute for formal care in Europe?, Journal of Health Economics, 28(1): 14354. doi: 10.1016/j.jhealeco.2008.09.002

    • Search Google Scholar
    • Export Citation
  • Burrell, L.V., Rostad, H.M., Wentzel-Larsen, T., Skinner, S.M. and Sogstad, M.K.R. (2023) The influence of individual and municipality characteristics on allocation of long-term care services: a register-based cross-sectional study, BMC Health Services Research, 23: art 801. doi: 10.1186/s12913-023-09641-y

    • Search Google Scholar
    • Export Citation
  • Burrell, L.V., Rostad, H.M., Wentzel-Larsen, T. and Raknes Sogstad, M.K. (2024a) Allocation of adult day care services to different user groups: a register-based cross-sectional study, Health Services Insights, 17. doi: 10.1177/11786329241231003

    • Search Google Scholar
    • Export Citation
  • Burrell, L.V., Døhl, Ø., Rostoft, S., Berggaard, N., Antonova, I. and Bakken, I.J.L. (2024b) Disability level and use of long-term care services in Norway: a nationwide registry study, Scandinavian Journal of Public Health, early view. doi: 10.1177/14034948241251914

    • Search Google Scholar
    • Export Citation
  • Chappell, N.L. (2008) Respite for Rural and Remote Caregivers, Bristol: Policy Press, pp 5362.

  • Christensen, K. and Wærness, K. (2018) Long-term care services in Norway – a historical sociological perspective, in K. Christensen and D. Pilling (eds) The Routledge Handbook of Social Care Work around the World, London: Routledge, pp 1528.

    • Search Google Scholar
    • Export Citation
  • Dale, B., Folkestad, B., Førland, O., Hellesø, R., Moe, A. and Sogstad, M. (2015) Er Tjenestene Fortsatt «på strekk»?: om Utviklingstrekk i Helse- og Omsorgstjenestene i Kommunene fra 2003 til 2015, Gjøvik: Senter for Omsorgsforskning.

    • Search Google Scholar
    • Export Citation
  • Daly, M. and Lewis, J. (2000) The concept of social care and the analysis of contemporary welfare states, British Journal of Sociology, 51(2): 28198. doi: 10.1111/j.1468-4446.2000.00281.x

    • Search Google Scholar
    • Export Citation
  • Eurocarers (2009) Factsheet: Carers in Europe, Eurocarers, https://eurocarers.org/publications/carers-in-europe/.

  • Folkestad, B. (2017) Registry Data in Nursing and Care Sector, Bergen: Senter for omsorgsforskning.

  • Førland, O. and Folkestad, B. (2016) Hjemmetjenestene i Norge i et Befolknings- og Brukerperspektiv [Home Care Services in Norway in a Population- and User-Perspective], Bergen: Senter for omsorgsforskning.

    • Search Google Scholar
    • Export Citation
  • Glendinning, C., Arksey, H., Tjadens, F., Morée, M., Moran, N. and Nies, H. (2009) Care Provision within Families and Its Socio-economic Impact on Care Providers across the European Union, Social Policy Research Unit, York: The University of York.

    • Search Google Scholar
    • Export Citation
  • Harrison, S.L., Lang, C., Whitehead, C., Crotty, M., Corlis, M., Wesselingh, S. and Inacio, M.C. (2020) Residential respite care use is associated with fewer overall days in residential aged care, Journal of the American Medical Directors Association, 21(5): 6539. doi: 10.1016/j.jamda.2019.08.023

    • Search Google Scholar
    • Export Citation
  • Hoffman, F. and Rodrigues, R. (2010) Informal Carers: Who Takes Care of Them? Policy Brief, Vienna: European Center for Social Welfare Policy and Research.

    • Search Google Scholar
    • Export Citation
  • Holm, S.G., Mathisen, T.A., Saeterstrand, T.M. and Brinchmann, B.S. (2017) Allocation of home care services by municipalities in Norway: a document analysis, BMC Health Services Research, 17: art 10. doi: 10.1186/s12913-016-1965-6

    • Search Google Scholar
    • Export Citation
  • Inacio, M.C., Lang, C., Bray, S.C.E., Visvanathan, R., Whitehead, C., Griffith, E.C., et al (2021) Health status and healthcare trends of individuals accessing Australian aged care programmes over a decade: the Registry of Senior Australians historical cohort, Internal Medicine Journal, 51(5): 71224. doi: 10.1111/imj.14871

    • Search Google Scholar
    • Export Citation
  • Jegermalm, M. and Torgé, C.J. (2023) Three caregiver profiles: who are they, what do they do, and who are their co-carers?, European Journal of Social Work, 26(3): 46679. doi: 10.1080/13691457.2021.2016647

    • Search Google Scholar
    • Export Citation
  • Jessen, J.T. (2014) Kommunale Avlastningstilbud: Fra Tradisjonelle Tjenester Til Fleksible Løsninger?, Oslo: Norsk institutt for forskning om oppvekst, velferd og aldring (NOVA).

    • Search Google Scholar
    • Export Citation
  • Johannessen, A., Engedal, K. and Thorsen, K. (2016) Family carers of people with young-onset dementia: their experiences with the supporter service, Geriatrics (Basel), 1(4): art 28. doi: 10.3390/geriatrics1040028

    • Search Google Scholar
    • Export Citation
  • Joseph Rowntree Foundation (2022) UK Poverty 2022: The Essential Guide to Understanding Poverty in the UK, https://www.jrf.org.uk/uk-poverty-2022-the-essential-guide-to-understanding-poverty-in-the-uk.

    • Search Google Scholar
    • Export Citation
  • Keeley, B. and Clarke, M. (2003) Primary Carers – Identifying and Providing Support to Carers in Primary Care, Milton Keynes: Princess Royal Trust for Carers, https://wels.open.ac.uk/research-project/caren/node/2589.

    • Search Google Scholar
    • Export Citation
  • Lindt, N., van Berkel, J. and Mulder, B.C. (2020) Determinants of overburdening among informal carers: a systematic review, BMC Geriatrics, 20(1): art 304. doi: 10.1186/s12877-020-01708-3

    • Search Google Scholar
    • Export Citation
  • Ministry of Health and Care Services (1998) Rundskriv I-42/98 Retningslinjer for omsorgslønn [Note 1-42/98 guidelines for care benefit], https://www.regjeringen.no/no/dokumenter/i-4298-omsorgslonn/id585868/.

    • Search Google Scholar
    • Export Citation
  • Ministry of Health and Care Services (2010) Prop. 91 L (2010–2011): Proposisjon til Stortinget (forslag til lovvedtak): Lov om kommunale helse- og omsorgstjenester m.m. (helse- og omsorgstjenesteloven) [Proposition 91 L (2010-2011): Proposition to Parliament (proposal for legislation): The Health- and Care Services Act], https://www.regjeringen.no/no/dokumenter/prop-91-l-20102011/id638731/.

    • Search Google Scholar
    • Export Citation
  • Ministry of Health and Care Services (2015) Omsorg 2020. Regjeringens Plan for Omsorgsfeltet 2015–2020 [Care 2020. The Government’s Plan for Care Services 2015–2020], https://www.regjeringen.no/en/historical-archive/solbergs-government/andre-dokumenter/hod/2015/care-plan-20202/id2410456/.

    • Search Google Scholar
    • Export Citation
  • Ministry of Health and Care Services (2019) Helhet og Sammenheng: Utvikling og Variasjon i Bruk av Helseog Omsorgstjenester Blant Pasienter med Behov for Helhetlige Tjenester [Wholeness and Coherence: Development and Variation in Use of Health and Care Services Among Patients with a Need for Holistic Care Services].

    • Search Google Scholar
    • Export Citation
  • Ministry of Health and Care Services (2023) Meld. St. 24 (2022–2023). Fellesskap og meistring: Bu trygt heime [Parliamentary Notice No. 24 (2022–2023). Community and mastery: live safe at home], https://www.regjeringen.no/no/dokumenter/meld.-st.-24-20222023/id2984417/.

    • Search Google Scholar
    • Export Citation
  • Moholt, J.M., Friborg, O., Blix, B.H. and Henriksen, N. (2020) Factors affecting the use of home-based services and out-of-home respite care services: a survey of family caregivers for older persons with dementia in Northern Norway, Dementia, 19(5): 171231. doi: 10.1177/1471301218804981

    • Search Google Scholar
    • Export Citation
  • Norwegian Government (2022) Frie inntekter 2022 [Unrestricted revenues 2022], www.regjeringen.no/no/tema/kommuner-og-regioner/kommunedata/frie-inntekter/frie-inntekter-2022/id2876390/#/.

    • Search Google Scholar
    • Export Citation
  • Pedersen, S., Halvorsen, C., Vinter, C. and Kjelsaas, I. (2023) Kunnskapsoppsummering om Pårørende i Norge [Evidence Synthesis of Informal Carers in Norway], Oslo: Menon Economics, https://www.menon.no/wp-content/uploads/2023-35-Kunnskapsoppsummering-om-parorende-i-Norge.pdf.

    • Search Google Scholar
    • Export Citation
  • Rodger, D., Neill, M.O. and Nugent, L. (2015) Informal carers’ experiences of caring for older adults at home: a phenomenological study, British Journal of Community Nursing, 20(6): 2805. doi: 10.12968/bjcn.2015.20.6.280

    • Search Google Scholar
    • Export Citation
  • Romøren, T.I., Torjesen, D.O. and Landmark, B. (2011) Promoting coordination in Norwegian health care, International Journal of Integrated Care, 11(5): 12734.

    • Search Google Scholar
    • Export Citation
  • Serrano-Aguilar, P.G., Lopez-Bastida, J. and Yanes-Lopez, V. (2006) Impact on health-related quality of life and perceived burden of informal caregivers of individuals with Alzheimer’s disease, Neuroepidemiology, 27(3): 13642. doi: 10.1159/000095760

    • Search Google Scholar
    • Export Citation
  • Shi, J., Chan, K., Ferretti, L. and McCallion, P. (2018) Caregiving load and respite service use: a comparison between older caregivers and younger caregivers, Journal of Gerontological Social Work, 61(1): 3144. doi: 10.1080/01634372.2017.1391364

    • Search Google Scholar
    • Export Citation
  • Skinner, M.S. and Sogstad, M. (2022) Social and gender differences in informal caregiving for sick, disabled, or elderly persons: a cross-sectional study, SAGE Open Nursing, 8. doi: 10.1177/23779608221130585

    • Search Google Scholar
    • Export Citation
  • Skinner, M.S., Lorentzen, H., Tingvold, L., Sortland, O., Andfossen, N.B. and Jegermalm, M. (2021) Volunteers and informal caregivers’ contributions and collaboration with formal caregivers in Norwegian long-term care, Journal of Aging & Social Policy, 33(6): 64772. doi: 10.1080/08959420.2020.1745988

    • Search Google Scholar
    • Export Citation
  • Snijders, T.A.B. and Bosker, R.J. (2012) Multilevel Analysis: An Introduction to Basic and Advanced Multilevel Modeling, Los Angeles, CA: Sage.

    • Search Google Scholar
    • Export Citation
  • Sogstad, M., Hellesø, R. and Skinner, M.S. (2020) The development of a new care service landscape in Norway, Health Services Insights, 13: 17. doi: 10.1177/1178632920922221

    • Search Google Scholar
    • Export Citation
  • Statistics Norway (2020) Classification of centrality, www.ssb.no/en/klass/klassifikasjoner/128/versjon/1430/koder.

  • Statistics Norway (2022a) Statbank: Care Services, Oslo: Norway Statistics Norway, https://www.ssb.no/en/statbank/table/12209/.

  • Statistics Norway (2022b) Statbank: Municipal Accounts, Oslo: Statistics Norway, https://www.ssb.no/en/statbank/table/12134/.

  • Statistics Norway (2022c) Statbank: Population, Oslo: Statistics Norway, https://www.ssb.no/en/statbank/table/06913/.

  • Strunk, J.A. (2010) Respite care for families of special needs children: a systematic review, Journal of Developmental and Physical Disabilities, 22(6): 61530. doi: 10.1007/s10882-010-9190-4

    • Search Google Scholar
    • Export Citation
  • Triantafillou, J., Naiditch, M., Repkova, K., Stiehr, K., Carretero, S., Emilsson, T., et al (2010) Informal Care in the Long-Term Care System. European Overview Paper, Athens and Vienna: Interlinks.

    • Search Google Scholar
    • Export Citation
  • Vabø, M. (2009) Home care in transition: the complex dynamic of competing drivers of change in Norway, Journal of Health Organization and Management, 23(3): 34658. doi: 10.1108/14777260910966762

    • Search Google Scholar
    • Export Citation
  • Vandepitte, S., Putman, K., Van Den Noortgate, N., Verhaeghe, N. and Annemans, L. (2020) Cost-effectiveness of an in-home respite care program to support informal caregivers of persons with dementia: a model-based analysis, International Journal of Geriatric Psychiatry, 35(6): 6019. doi: 10.1002/gps.5276

    • Search Google Scholar
    • Export Citation
  • Vandepitte, S., Van Den Noortgate, N., Putman, K., Verhaeghe, S., Verdonck, C. and Annemans, L. (2016) Effectiveness of respite care in supporting informal caregivers of persons with dementia: a systematic review, International Journal of Geriatric Psychiatry, 31(12): 127788. doi: 10.1002/gps.4504

    • Search Google Scholar
    • Export Citation
  • Verbakel, E. (2018) How to understand informal caregiving patterns in Europe? The role of formal long-term care provisions and family care norms, Scandinavian Journal of Public Health, 46(4): 43647. doi: 10.1177/1403494817726197

    • Search Google Scholar
    • Export Citation
  • Verbakel, E., Tamlagsronning, S., Winstone, L., Fjaer, E.L. and Eikemo, T.A. (2017) Informal care in Europe: findings from the European Social Survey (2014) special module on the social determinants of health, European Journal of Public Health, 27(suppl_1): 905. doi: 10.1093/eurpub/ckw229

    • Search Google Scholar
    • Export Citation
  • Wondemu, M.Y., Joranger, P., Hermansen, A. and Brekke, I. (2022) Impact of child disability on parental employment and labour income: a quasi-experimental study of parents of children with disabilities in Norway, BMC Public Health, 22(1): 11813. doi: 10.1186/s12889-021-12274-7

    • Search Google Scholar
    • Export Citation
  • World Health Organization (1980) International Classification of Impairments, Disabilities, and Handicaps: A Manual of Classification Relating to the Consequences of Disease, Geneva: WHO.

    • Search Google Scholar
    • Export Citation
  • Yannamani, N., Zia, A. and Khalil, N. (2009) Family carers of people with learning disabilities: common themes across caring, Psychiatry, 8(11): 44144. doi: 10.1016/j.mppsy.2009.07.007

    • Search Google Scholar
    • Export Citation
Lisa Victoria Burrell Norwegian University of Science and Technology, Norway

Search for other papers by Lisa Victoria Burrell in
Current site
Google Scholar
Close
,
Tore Wentzel-Larsen Norwegian University of Science and Technology, Norway

Search for other papers by Tore Wentzel-Larsen in
Current site
Google Scholar
Close
, and
Maren Kristine Raknes Sogstad Norwegian University of Science and Technology, Norway

Search for other papers by Maren Kristine Raknes Sogstad in
Current site
Google Scholar
Close

Content Metrics

May 2022 onwards Past Year Past 30 Days
Abstract Views 673 673 565
Full Text Views 62 62 29
PDF Downloads 53 53 24

Altmetrics

Dimensions