Concepts of health in long-term home care: An empirical-ethical exploration

Abstract

Background

Concepts of health have been widely discussed in the philosophy and ethics of medicine. Parallel to these theoretical debates, numerous empirical research projects have focused on subjective concepts of health and shown their significance for individuals and society at various levels. Only a few studies have so far investigated the concepts of health of non-professionals and professionals involved in long-term home care and discussed these empirical perspectives regarding moral responsibilities.

Objectives

To identify the subjective concepts of the health of non-professionals (care recipients, informal caregivers) and professionals (registered nurses) involved in long-term home care and to discuss them against the background of existing normative guidelines addressing non-professionals and professionals’ responsibilities and rights concerning health.

Research design

A qualitative design was chosen to explore subjective concepts of health. Data were collected by semi-structured interviews; content analysis was applied according to Mayring.

Participants and research context

Twenty-eight interviews were conducted with non-professionals and professionals in long-term home care arrangements in Northern Germany.

Ethical considerations

Ethics approval was obtained from the Institutional Review Board at the University Medicine Greifswald (BB123/16).

Findings

Non-professionals and professionals consider health as a capability that enables them to participate in social activities and live their own lives according to their preferences. The former regard health particularly as a feeling and an attitude, the latter as the absence of disease with a focus on mental and emotional well-being. Both groups highlight the unsurpassable value of health and the personal responsibility for it.

Discussion

Normative guidelines applicable to practice in long-term home care discuss responsibilities and rights unevenly and raise several problems regarding non-professionals and professionals’ subjective concepts of health.

Conclusion

Individuals’ concepts of health are relevant for the subsequent interpretation of rights and responsibilities and should, thus, be reflected upon to address health-related needs effectively.

Keywords

Care-givers care-recipients home care concepts of health qualitative study normative analysis

Get full access to this article

View all access options for this article.

References

Callahan

. The WHO definition of ‘health’. Stud Hastings Cent 1973; 1: 77–88.

Kaldjian

. Concepts of health, ethics, and communication in shared decision making. Commun Med 2017; 14(1): 83–95.

Boggatz

. Quality of life in old age – a concept analysis. Int J Older People Nurs 2016; 11(1): 55–69.

Hessmann

Dreier

Brandes

, et al. Unterschiede in der Selbst- und Fremdbeurteilung gesundheitsbezogener Lebensqualität bei Patienten mit leichter kognitiver Beeinträchtigung und Demenz vom Alzheimer-Typ [Differences between self- and proxy-assessment of health-related quality of life in patients with mild cognitive impairment and Alzheimer’s disease]. Psychiatr Prax 2018; 45: 78–86.

Haesler

Bauer

Fetherstonhaugh

. Sexuality, sexual health and older people: a systematic review of research on the knowledge and attitudes of health professionals. Nurse Educ Today 2016; 40: 57–71.

German Federal Statistical Office. Pflegestatistik 2015. Pflege im Rahmen der Pflegeversicherung Deutschlandergebnisse [Nursing Statistics 2015. Nursing in the context of the Geman statutory nursing insurance], https://www.destatis.de/DE/Publikationen/Thematisch/Gesundheit/Pflege/PflegeDeutschlandergebnisse5224001159004.pdf?__blob=publicationFile (2017, accessed 13 February 2018).

Hajek

Konig

. Informal caregiving and subjective well-being: evidence of a population-based longitudinal study of older adults in Germany. J Am Med Dir Assoc 2016; 17(4): 300–305.

Ereshefsky

. Defining ‘health’ and ‘disease’. Stud Hist Philos Sci C 2009; 40: 221–227.

Boorse

. Health as a theoretical concept. Philos Sci 1977; 44: 542–573.

10.

Boorse

. A rebuttal on health. In Humber

Almeder

(eds) What is disease? Totowa, NJ: Humana Press, 1997, pp. 3–134.

11.

Boorse

. A second rebuttal on health. J Med Philos 2014; 39(6): 683–724.

12.

Nordenfelt

. The concepts of health and illness revisited. Med Health Care Philos 2007; 10(1): 5–10.

13.

Nordenfelt

. Understanding the concept of health, http://www.fil.lu.se/hommageawlodek/site/papper/NordenfeltLennart.pdf (2007, accessed 5 February 2019).

14.

Nordenfelt

. The opposition between naturalistic and holistic theories of health and disease. In Carel

Cooper

(eds) Health, illness and disease: philosophical essays. London; New York: Routledge, 2013, pp. 23–36.

15.

Venkatapuram

. Health, vital goals, and central human capabilities. Bioethics 2013; 27(5): 271–279.

16.

Kovács

. The concept of health and disease. Med Health Care Philos 1998; 1: 31–39.

17.

Tengland

. A two-dimensional theory of health. Theor Med Bioeth 2007; 28: 257–284.

18.

Huber

Knottnerus

Green

, et al.

How should we define health?

BMJ 2011; 343: d4163.

19.

Flick

Fischer

Neuber

, et al. Health in the context of growing old: social representations of health. J Health Psychol 2003; 8(5): 539–556.

20.

Piko

Bak

. Children’s perceptions of health and illness: images and lay concepts in preadolescence. Health Educ Res 2006; 21(5): 643–653.

21.

Faltermaier

Bengel

. Subjektive Konzepte und Vorstellungen von Gesundheit [Subjective concepts and ideas of health]. Z Gesundheitspsychol 2000; 8: 133–136.

22.

Frank

. Subjektive Gesundheitsvorstellungen und gesundheitsförderlicher Lebensstil von Herzinfarktpatienten und –patientinnen [Subjective health concepts and health-promoting lifestyle in patients with myocardial infarction]. Z Gesundheitspsychol 2000; 8: 155–167.

23.

Seidlein

A-H

Salloch

Illness and disease: an empirical-ethical viewpoint. BMC Med Ethics 2019; 20(5): 1–10.

24.

Hofmann

. On the triad disease, illness and sickness. J Med Philos 2002; 27(6): 651–673.

25.

Johansson

Weinehall

Emmelin

. ‘It depends on what you mean’: a qualitative study of Swedish health professionals’ views on health and health promotion. BMC Health Serv Res 2009; 9: 191.

26.

Faltermaier

Kühnlein

Subjektive Gesundheitskonzepte im Kontext: Dynamische Konstruktionen von Gesundheit in einer qualitativen Untersuchung von Berufstätigen [Lay concepts of health in context: The dynamic construction of health in a qualitative study of employed adults]. Z Gesundheitspsychol 2010; 8: 137–154.

27.

Moilanen

Pietila

Coffey

, et al. Adolescents’ health choices related rights, duties and responsibilities: an integrative review. Nurs Ethics 2018; 25(4): 418–435.

28.

Venkatapuram

. Health justice: an argument from the capabilities approach. Cambridge: Polity Press, 2011.

29.

Brown

. Moral responsibility for (un)healthy behaviour. J Med Ethics 2013; 39(11): 695–698.

30.

Kada

Hedenik

Griesser

, et al. Subjektive Theorien zu Lebensqualität und Gesundheit im Alter: Eine explorative Studie mit Pflegeheimbewohnern und ihren Pflegekräften [Subjective theories on quality of life and health in old age: An explorative study with nursing home residents and their nursing personnel]. Z Gerontol Geriatr 2018; 51: 628–635.

31.

Flick

. Subjektive Vorstellungen von Gesundheit und Krankheit: Überblick und Einleitung [Subjective ideas of health and illness: overview and introduction]. In: Flick

(ed.) Wann fühlen wir uns gesund? Subjektive Vorstellungen von Gesundheit und Krankheit [When do we feel healthy? Subjective ideas of health and illness] . Weinheim: Juventa, 1998, pp. 7–30.

32.

Mayring

. Qualitative content analysis: theoretical foundation, basic procedures and software solution. https://nbn-resolving.org/urn:nbn:de:0168-ssoar-395173 (2014, accessed 14 February 2018).

33.

Seidlein

A-H

Buchholz

, et al. Relationships and burden: An empirical-ethical investigation of lived experience in home nursing arrangements. Bioethics 2019; 33(4): 448–456.

34.

Brown

RCH

. Resisting moralisation in health promotion. Ethical Theor Moral Pract 2018; 21(4): 997–1011.

35.

Friesen

. Personal responsibility within health policy: unethical and ineffective. J Med Ethics 2018; 44(1): 53–58.

36.

Buyx

. Personal responsibility for health as a rationing criterion: why we don’t like it and why maybe we should. J Med Ethics 2008; 34(12): 871–874.

37.

Resnik

. Genetics and personal responsibility for health. New Genet Soc 2014; 33(2): 113–125.

38.

denHartogh

. Relieving one’s relatives from the burdens of care. Med Health Care Philos 2018; 21(3): 403–410.

39.

European Union. European Charter of the rights and responsibilities of older people in need of long-term care and assistance, https://www.age-platform.eu/sites/default/files/22204_AGE_charte_europeenne_EN_v4.pdf (2010, accessed 25 February 2019).

40.

Skalko

Cherry

. Bioethics and moral agency: on autonomy and moral responsibility. J Med Philos 2016; 41(5): 435–443.

41.

Kidd

Medina

Pohlhaus

Jr . Introduction to the Routledge handbook of epistemic injustice. In: Kidd

Medina

Pohlhaus

Jr (eds) The Routledge handbook of epistemic injustice. New York: Routledge, 2017, p. 1.

42.

Snelling

. Who can blame who for what and how in responsibility for health. Nurs Philos 2015; 16(1): 3–18.

43.

Brown

RCH

Maslen

Savulescu

. Responsibility, prudence and health promotion. J Public Health 2019; 41(3): 561–565.

44.

Savulescu

. Golden opportunity, reasonable risk and personal responsibility for health. J Med Ethics 2018; 44(1): 59–61.

45.

World Medical Association. WMA declaration of Geneva, https://www.wma.net/policies-post/wma-declaration-of-geneva/ (2017, accessed 27 March 2019).

46.

International Council of Nurses. The ICN Code of Ethics for Nurses. http://www.old.icn.ch/who-we-are/code-of-ethics-for-nurses/ (2012, accessed 19 January 2019).

47.

Dobrowolska

Wronska

Fidecki

, et al. Moral obligations of nurses based on the ICN, UK, Irish and polish codes of ethics for nurses. Nurs Ethics 2007; 14(2): 171–180.

48.

Fowler

. Duties to self: the nurse as a person of dignity and worth. Creat Nurs 2018; 24(3): 152–157.

49.

Halasz

. About the right to be ill. Med Health Care Philos 2018; 21: 113–123.

50.

European Network of National Human Rights Institutions. Human rights relevant to long-term care in Europe, http://www.ennhri.org/Human-Rights-relevant-to-Long-term-Care-in-Europe (2016, accessed 25 February 2019).

51.

Muramatsu

Yin

Berbaum

, et al. Promoting seniors’ health with home care aides: a pilot. Gerontologist 2018; 58(4): 779–788.