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Published in: BMC Public Health 1/2021

Open Access 01-12-2021 | Fatigue | Research article

“Like filling a lottery ticket with quite high stakes”: a qualitative study exploring mothers’ needs and perceptions of state-provided financial support for a child with a long-term illness in Finland

Authors: Anna Paajanen, Kristi Sidney Annerstedt, Salla Atkins

Published in: BMC Public Health | Issue 1/2021

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Abstract

Background

A child’s long-term illness or disability is always a serious matter that impacts the whole family. Costs related to an illness can substantially affect a family’s financial situation. To date, there is little research on how parents experience available support for financial assistance. Surveys in Finland have found that families of children with long-term illnesses and disabilities could experience financial struggle and perceive the state provided financial support system as too complex. This article aimed to explore how caregivers of children with long-term illnesses perceived their financial situation, need for financial support and experienced its provision by the state in the Helsinki greater region.

Methods

Convenience sampling was used. Participants were contacted through peer-support groups on Facebook. Eleven mothers of children with varying long-term illnesses and disabilities residing in the Helsinki greater region were interviewed using in-depth interviews. Recordings of the interviews were transcribed and analysed using framework analysis. An analytical framework was built to label the dataset, which was then charted. Lastly, themes were formed through descriptive analysis.

Results

The main findings showed how the burden of caring for a child with a long-term illness or disability causes fatigue, which affects a family’s financial situation holistically. This affected both employment and financial management, but also receiving information about and applying for the state provided allowances. Mental resources were further depleted by seeking information and applying for allowances. This contributed to a vicious cycle between parental fatigue and financial struggle. Participants found the allocation of funds inequitable across the country. Finally, participants thought the allowance was insufficient in compensating for time spent caring for their child’s illness and did not consider their mental strain.

Conclusions

Even in a welfare state such as Finland, caregivers of children with long-term illnesses are at risk of poverty and struggle with the organization of state provided financial support. Policies should be designed to ensure equity across the country and consider how the parental fatigue should be addressed. The study has implications for achieving sustainable development goals on wellbeing and reducing poverty.
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Footnotes
1
United Nation’s convention for disabled people defines a person with a disability as those “who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others” ([3] , p. 14)
 
2
Long term illness is defined as a health condition that requires monitoring by a health professional and lasts at least 6 months [4]. Many long-term illnesses lead to disabilities [5], but it should be noted that many conditions fit under both definitions
 
Literature
1.
go back to reference World Health Organisation & The World bank. The world report on disability. In: Disability and Society. Geneva: Author; 2011. World Health Organisation & The World bank. The world report on disability. In: Disability and Society. Geneva: Author; 2011.
2.
go back to reference Roser M, Ritchie H. Burden of disease; 2018. Roser M, Ritchie H. Burden of disease; 2018.
3.
go back to reference United Nations. The UN convention on the rights of persons with disabilities. 2006. United Nations. The UN convention on the rights of persons with disabilities. 2006.
4.
go back to reference Statistics Finland. Käsitteet: Pitkäaikainen sairaus [Concepts: long term illness]. Statistics Finland. Käsitteet: Pitkäaikainen sairaus [Concepts: long term illness].
5.
go back to reference World Health Organisation. Chronic diseases and health promotion. 2019. World Health Organisation. Chronic diseases and health promotion. 2019.
6.
go back to reference Inclusion Europe. Poverty and intellectual disability in Europe. Brussels: Author; 2006. Inclusion Europe. Poverty and intellectual disability in Europe. Brussels: Author; 2006.
7.
go back to reference Langerman C, Worrall E. Ordinary lives: disabled children and their families. A guide for donors and funders. London: New Philanthropy Capital; 2005. Langerman C, Worrall E. Ordinary lives: disabled children and their families. A guide for donors and funders. London: New Philanthropy Capital; 2005.
8.
go back to reference Hovén E, von Essen L, Lindahl NA. A longitudinal assessment of work situation, sick leave, and household income of mothers and fathers of children with cancer in Sweden. Acta Oncol (Madr). 2013;52(6):1076–85.CrossRef Hovén E, von Essen L, Lindahl NA. A longitudinal assessment of work situation, sick leave, and household income of mothers and fathers of children with cancer in Sweden. Acta Oncol (Madr). 2013;52(6):1076–85.CrossRef
9.
go back to reference World Health Organisation. WHO guide to identifying the economic consequences of disease and injury. Geneva: Author; 2009. World Health Organisation. WHO guide to identifying the economic consequences of disease and injury. Geneva: Author; 2009.
10.
go back to reference Cohn R, Goodenough B, Foreman T, Suneson J. Hidden financial costs in treatment for childhood cancer: an Australian study of lifestyle implications for families absorbing out-of-pocket expenses. J Pediatr Hematol Oncol. 2003;25(11):854–63.CrossRef Cohn R, Goodenough B, Foreman T, Suneson J. Hidden financial costs in treatment for childhood cancer: an Australian study of lifestyle implications for families absorbing out-of-pocket expenses. J Pediatr Hematol Oncol. 2003;25(11):854–63.CrossRef
11.
go back to reference Engle PL, Black MM. The effect of poverty on child development and educational outcomes. Ann N Y Acad Sci. 2008;1136:243–56.CrossRef Engle PL, Black MM. The effect of poverty on child development and educational outcomes. Ann N Y Acad Sci. 2008;1136:243–56.CrossRef
12.
go back to reference United Nations Children’s Fund. A world free from child poverty. New York: Author; 2017. United Nations Children’s Fund. A world free from child poverty. New York: Author; 2017.
13.
go back to reference Department for International Development. Disability, poverty and development. London: DFID; 2000. Department for International Development. Disability, poverty and development. London: DFID; 2000.
14.
go back to reference Lee H, Andrew M, Gebremariam A, Lumeng JC, Lee JM. Longitudinal associations between poverty and obesity from birth through adolescence. Am J Public Health. 2014;104(5):70–6.CrossRef Lee H, Andrew M, Gebremariam A, Lumeng JC, Lee JM. Longitudinal associations between poverty and obesity from birth through adolescence. Am J Public Health. 2014;104(5):70–6.CrossRef
15.
go back to reference National Institute of Child Health and Human Development Early Child Care Research Network. Duration and Developmental Timing of Poverty and Children’s Cognitive and Social Development From Birth Through Third Grade. Child Dev. 2005;76:795–810.CrossRef National Institute of Child Health and Human Development Early Child Care Research Network. Duration and Developmental Timing of Poverty and Children’s Cognitive and Social Development From Birth Through Third Grade. Child Dev. 2005;76:795–810.CrossRef
16.
go back to reference Laatikainne T, Mäki P. Lasten sairastavuus ja lääkkeiden käyttö [Children’s illnesses and medicine usage]. In: Kaikkonen R, Hakulinen-viitanen T, Markkula J, Ovaskainen M, Virtanen S, Laatikainen T, editors. Lasten ja lapsi- perheiden terveys- ja hyvinvointierot. Tampere: Terveyden ja hyvinvoinnin laitos; 2012. Laatikainne T, Mäki P. Lasten sairastavuus ja lääkkeiden käyttö [Children’s illnesses and medicine usage]. In: Kaikkonen R, Hakulinen-viitanen T, Markkula J, Ovaskainen M, Virtanen S, Laatikainen T, editors. Lasten ja lapsi- perheiden terveys- ja hyvinvointierot. Tampere: Terveyden ja hyvinvoinnin laitos; 2012.
17.
go back to reference Tervola J, Mukkila S, Ilmarinen K, Kauppinen S. The distributional effects of out-of-pocket health payments in Finland 2010–2018. Helsinki: THL; 2018. Tervola J, Mukkila S, Ilmarinen K, Kauppinen S. The distributional effects of out-of-pocket health payments in Finland 2010–2018. Helsinki: THL; 2018.
18.
go back to reference Kela. Kelan vammaisetuustilasto [Kela’s disability allowance statistics]. Helsinki: KELA; 2017. Kela. Kelan vammaisetuustilasto [Kela’s disability allowance statistics]. Helsinki: KELA; 2017.
19.
go back to reference Finlex. Laki omaishoidon tuesta 2.12.2005/937 [The law on cargiver allowance]. 2005. Finlex. Laki omaishoidon tuesta 2.12.2005/937 [The law on cargiver allowance]. 2005.
20.
go back to reference Kalliomaa-puha L, Tillman P. Äiti on aina äiti, Lasten omaishoitajien arjen haastet [a mother is always a mother, children’s caregivers everyday challenges]. In: Haataja A, Airio I, Saarikallio-Torp M, Valaste M, editors. Laulu 573 566 perheestä Lapsiperheet ja perhepolitiikka 2000-luvulla. Helsinki: Kela; 2016. p. 322–255. Kalliomaa-puha L, Tillman P. Äiti on aina äiti, Lasten omaishoitajien arjen haastet [a mother is always a mother, children’s caregivers everyday challenges]. In: Haataja A, Airio I, Saarikallio-Torp M, Valaste M, editors. Laulu 573 566 perheestä Lapsiperheet ja perhepolitiikka 2000-luvulla. Helsinki: Kela; 2016. p. 322–255.
21.
go back to reference Hentinen M, Kyngäs H. Vanhempien voimavarat hoitoon ja kasvatukseen: Kyselytutkimus pitkäaikaisesti sairaiden lasten vanhemmille [Parent’s resources for caretaking and upbringing: A survey for parent’s of children with long-term illnesses]. Hoitotiede. 1995;7(1/−95):21. Hentinen M, Kyngäs H. Vanhempien voimavarat hoitoon ja kasvatukseen: Kyselytutkimus pitkäaikaisesti sairaiden lasten vanhemmille [Parent’s resources for caretaking and upbringing: A survey for parent’s of children with long-term illnesses]. Hoitotiede. 1995;7(1/−95):21.
22.
go back to reference Kalliomaa-Puha L, Tillman P, Saarikallio-Torp M. Palvelujen kohtaamattomuus - monikkoperheiden ja lasten omaishoitajien kokemuksia [the services do not meet - experiences of caregivers and families with multiple siblings born at the same time]. In: Tuulio-Henriksson A, Kalliomaa-Puha L, Rauhala P-L, editors. Harkittu, tutkittu, avoin Marketta Rajavaaran juhlakirja. Helsinki: Kela; 2017. p. 91–110. Kalliomaa-Puha L, Tillman P, Saarikallio-Torp M. Palvelujen kohtaamattomuus - monikkoperheiden ja lasten omaishoitajien kokemuksia [the services do not meet - experiences of caregivers and families with multiple siblings born at the same time]. In: Tuulio-Henriksson A, Kalliomaa-Puha L, Rauhala P-L, editors. Harkittu, tutkittu, avoin Marketta Rajavaaran juhlakirja. Helsinki: Kela; 2017. p. 91–110.
23.
go back to reference Elliott R, Timulak L. A handbook of research methods for clinical and Health Psychology (DRAFT). In: Miles J, Gilbert P, editors. A handbook of research methods for clinical and Health Psychology (DRAFT). London: Oxford University Press; 2015. p. 147–60. Elliott R, Timulak L. A handbook of research methods for clinical and Health Psychology (DRAFT). In: Miles J, Gilbert P, editors. A handbook of research methods for clinical and Health Psychology (DRAFT). London: Oxford University Press; 2015. p. 147–60.
24.
go back to reference Jaakola A, Vasa T, Saarto S, Haglund L, Sundström-Alku T. Tilastotietoja Helsingistä 2018 [Statistics from Helsinki 2018]; 2018. Jaakola A, Vasa T, Saarto S, Haglund L, Sundström-Alku T. Tilastotietoja Helsingistä 2018 [Statistics from Helsinki 2018]; 2018.
25.
go back to reference Statistics Finland. Väestörakenne 31.12 [The population structure 31.12]. 2018. Statistics Finland. Väestörakenne 31.12 [The population structure 31.12]. 2018.
26.
go back to reference Ministry of Social Affairs and Health. In: MSAH, editor. Omaishoidon tuen hoitopalkkiot vuonna 2019 [Caregiver allowance sums in year 2019]. Helsinki; 2018. Ministry of Social Affairs and Health. In: MSAH, editor. Omaishoidon tuen hoitopalkkiot vuonna 2019 [Caregiver allowance sums in year 2019]. Helsinki; 2018.
27.
go back to reference Linnosmaa I, Jokinen S, Vilkko A, Noro A, Siljander E. Omaishoidon tuki – Selvitys omaishoidon tuen palkkioista ja palveluista kunnissa vuonna 2012 [A report on the caregiver allowance and services in municipalities in 2012]. Helsinki; 2014. Linnosmaa I, Jokinen S, Vilkko A, Noro A, Siljander E. Omaishoidon tuki – Selvitys omaishoidon tuen palkkioista ja palveluista kunnissa vuonna 2012 [A report on the caregiver allowance and services in municipalities in 2012]. Helsinki; 2014.
28.
go back to reference Statistics Finland. Väestö iän ja sukupuolen mukaan 2017–2018 [the population by age and sex 2017–2018]. 2018. Statistics Finland. Väestö iän ja sukupuolen mukaan 2017–2018 [the population by age and sex 2017–2018]. 2018.
29.
go back to reference The National Institute for Health and Welfare. Sosiaali- ja terveyspalvelut Uusimaa. Tiedosta arviointiin tavoitteena paremmat palvelut. Asiantuntija-arvio, syksy 2018 [Social and health services Uusimaa (region)], From knowledge to evaluation with better services as an aim. Expert evaluation, autumn 2. Helsinki: THL; 2018. The National Institute for Health and Welfare. Sosiaali- ja terveyspalvelut Uusimaa. Tiedosta arviointiin tavoitteena paremmat palvelut. Asiantuntija-arvio, syksy 2018 [Social and health services Uusimaa (region)], From knowledge to evaluation with better services as an aim. Expert evaluation, autumn 2. Helsinki: THL; 2018.
30.
go back to reference United Nations Human Rights Office of the High Commissioner. The Convention on the Rights of the Child. 1989. United Nations Human Rights Office of the High Commissioner. The Convention on the Rights of the Child. 1989.
32.
go back to reference Britten N. Qualitative Interviews. Qualitative Research. In: Health Care; 2006. p. 12–20. Britten N. Qualitative Interviews. Qualitative Research. In: Health Care; 2006. p. 12–20.
33.
go back to reference Ritchie J, Spencer L, O’Connor W. Carrying out qualitative analysis. In: Ritchie J, Lewis J, editors. Qualitative research practice: a guide for social science students and researchers. London: SAGE Publications; 2003. p. 219–62. Ritchie J, Spencer L, O’Connor W. Carrying out qualitative analysis. In: Ritchie J, Lewis J, editors. Qualitative research practice: a guide for social science students and researchers. London: SAGE Publications; 2003. p. 219–62.
34.
go back to reference Pähkinänsärkijät - verkosto. Parisuhde, vanhemmuus ja ero erityistä tukea tarvitsevan lapsen perheissä [The relationship, being a parent and divorce in special needs children’s families]. 2018. Pähkinänsärkijät - verkosto. Parisuhde, vanhemmuus ja ero erityistä tukea tarvitsevan lapsen perheissä [The relationship, being a parent and divorce in special needs children’s families]. 2018.
35.
go back to reference Finlex. Sosiaalihuoltolaki [Social welfare law]. 2014. Finlex. Sosiaalihuoltolaki [Social welfare law]. 2014.
36.
go back to reference Marquis SM, Mcgrail K, Hayes M. Mental health of parents of children with a developmental disability in British Columbia, Canada. J Epidemiol Community Health. 2019;74:173–8.CrossRef Marquis SM, Mcgrail K, Hayes M. Mental health of parents of children with a developmental disability in British Columbia, Canada. J Epidemiol Community Health. 2019;74:173–8.CrossRef
37.
go back to reference Tilastokeskus. Sukupuolten tasa-arvo suomessa 2018. Helsinki: Edita Publishing; 2018. Tilastokeskus. Sukupuolten tasa-arvo suomessa 2018. Helsinki: Edita Publishing; 2018.
38.
go back to reference Salmi M, Lammi-Taskula J, Närvi J. Perhevapaat ja työelämän tasa-arvo [parental leaves and equality in working life]. Vol. 24/2009, Ministry of Employment and the Economy. Helsinki: Edita Publishing; 2009. Salmi M, Lammi-Taskula J, Närvi J. Perhevapaat ja työelämän tasa-arvo [parental leaves and equality in working life]. Vol. 24/2009, Ministry of Employment and the Economy. Helsinki: Edita Publishing; 2009.
39.
go back to reference Kela. Äitiysraha [Maternity allowance]. 2019. Kela. Äitiysraha [Maternity allowance]. 2019.
40.
go back to reference Kela. Vanhempainraha [Parental allowance]. 2019. Kela. Vanhempainraha [Parental allowance]. 2019.
41.
go back to reference Kela. Isyysraha [Paternity allowance]. 2019. Kela. Isyysraha [Paternity allowance]. 2019.
42.
go back to reference ILO International Labour Office. Care work and care jobs for the future of decent work. Geneva: ILO; 2018. ILO International Labour Office. Care work and care jobs for the future of decent work. Geneva: ILO; 2018.
43.
go back to reference Tampereen korkeakoulut. Ihmistieteiden eettinen ennakkoarviointi [Ethical pre-evaluation for humanities]. 2019. Tampereen korkeakoulut. Ihmistieteiden eettinen ennakkoarviointi [Ethical pre-evaluation for humanities]. 2019.
Metadata
Title
“Like filling a lottery ticket with quite high stakes”: a qualitative study exploring mothers’ needs and perceptions of state-provided financial support for a child with a long-term illness in Finland
Authors
Anna Paajanen
Kristi Sidney Annerstedt
Salla Atkins
Publication date
01-12-2021
Publisher
BioMed Central
Keyword
Fatigue
Published in
BMC Public Health / Issue 1/2021
Electronic ISSN: 1471-2458
DOI
https://doi.org/10.1186/s12889-020-10015-w

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