Next of kin's quality of life before and after implementation of a knowledge-based palliative care intervention in nursing homes

Christina Bökberg, Lina Behm, Gerd Ahlström, Christina Bökberg, Lina Behm, Gerd Ahlström

Abstract

Purpose: The purpose of this study was to evaluate whether an educational palliative care intervention improved the quality of life for next of kin to older persons in nursing homes.

Methods: Altogether, 90 next of kin in the intervention group and 105 next of kin in the control group were included. Data were collected using the WHOQOL-BREF questionnaire, answered before and 3 months after the intervention was completed. Descriptive and comparative analyses were performed.

Results: This study found a statistically significant increase in the Physical health subscale in the intervention group but not in the control group. In contrast, the General health score decreased in the control group but not in the implementation group. Furthermore, we found an increase in the item able to perform activities of daily living in the intervention group and a decrease in the item energy and fatigue in the control group.

Conclusion: The results indicated small statistical changes regarding next of kins' QoL in favour of the intervention. Lessons learned from the study for future research are to include next of kin as participants at meetings about next of kin and to include more meetings about the theme next of kin. Both approaches would bring a stronger focus on the family-centred care aspect of the intervention into the education component, which this study indicates the need for.

Trial registry: Trial registration NCT02708498. Date of registration 26 February 2016.

Keywords: End-of life; Family member; Long-term care; Older persons; Significant others; Staff education.

Conflict of interest statement

The authors declare that they have no conflict of interest.

Figures

Fig. 1
Fig. 1
Flow chart showing the inclusion procedure for the study participants

References

    1. Hall, S., Petkova, H., Tsouros, A., Constantini, M., & Higginson I. (2011). Palliative care for older people: Better practices. Copenhagen: WHO Regional Office for Europe. Accessed January 30, 2019, from .
    1. Sawatzky R, Porterfield P, Lee J, Dixon D, Lounsbury K, Pesut B, et al. Conceptual foundations of a palliative approach: A knowledge synthesis. BMC Palliative Care. 2016 doi: 10.1186/s12904-016-0076-9.
    1. Connor, S. R., Sepulveda, & Bermedo, M. C. (2014). Global atlas of palliative care at the end of life. In: World Palliative Care Alliance. WHO. Accessed January 30, 2019, from .
    1. Edvardsson D, Fetherstonhaugh D, Nay R. Promoting a continuation of self and normality: Person-centred care as described by people with dementia, their family members and aged care staff. Journal of Clinical Nursing. 2010 doi: 10.1111/j.1365-2702.2009.03143.x.
    1. Wallerstedt B, Behm L, Alftberg Å, Sandgren A, Benzein E, Nilsen P, Alström G. Striking a balance: A qualitative study of next of kin participation in the care of older persons in nursing homes in Sweden. Healthcare. 2018 doi: 10.3390/healthcare6020046.
    1. Smedbäck J, Öhlén J, Årested TK, Alvariza A, Fürst CJ, Håkanson C. Palliative care during the final week of life of older people in nursing homes: A register-based study. Palliative & Supportive Care. 2017 doi: 10.1017/S1478951516000948.
    1. Beck I, Törnquist A, Broström L, Edberg A-K. Having on focusing on doing rather than being—Nurse assistants’ experiences of palliative care in municipal residential care settings. International Journal of Nursing Studies. 2012 doi: 10.1016/j.ijnurstu.2011.10.016.
    1. Andersson M, Ekwall A, Hallberg IR, Edberg A-K. The experience of being next of kin to an older person in the last phase of life. Palliative & Supportive Care. 2010;3:150. doi: 10.1017/S1478951509990666.
    1. Høgsnes L, Melin-Johansson C, Norbergh KG, Danielson E. The existential life situations of spouses of persons with dementia before and after relocating to a nursing home. Aging and Mental Health. 2014 doi: 10.1080/13607863.2013.818100.
    1. Brazil K, Brink P, Kaasalainen S, Kelly ML, McAiney C. Knowledge, and perceived competence among nurses caring for the dying in long-term care homes. International Journal of Palliative Nursing. 2012 doi: 10.12968/ijpn.2012.18.2.77.
    1. Levine S, O’Malley S, Baron A, Ansari A, Deamant C, Frader J, et al. Training the workforce: Description of a longitudinal interdisciplinary education and mentoring program in palliative care. Journal of Pain and Symptom Management. 2017 doi: 10.1016/j.jpainsymman.
    1. Fryer S, Bellamy G, Morgan T, Gott M. ’Sometimes I’ve gone home feeling that my voice hasn´t been heard’, a focus group study exploring the views and experiences of health care assistants when caring for dying residents. BMC Palliative Care. 2016 doi: 10.1186/s12904-016-0150-3.
    1. Goddard C, Stewart F, Thompson G, Hall S. Providing end-of-life care in care homes for older people: A qualitative study on the views of care home staff and community nurses. Gerontology. 2013;32(1):76–95. doi: 10.1177/0733464811405047.
    1. Ahlström G, Nilsen P, Benzein E, Behm L, Wallerstedt B, Persson M, Sandgren A. Implementation of knowledge-based palliative care in nursing homes and pre-post evaluation by cross-over design: A study protocol. BMC Palliative Care. 2018 doi: 10.1186/s12904-018-0308-2.
    1. National Board of Health and Welfare. Vård och omsorg om äldre. Lägesrapport 2018. (Care and service for elderly. Progress report 2018). [in Swedish]. (2018a). Accessed January 30, 2019, from .
    1. SFS 2001:453. (2001). Socialtjänstlag. (The Swedish social and services act). Stockholm: Ministry of Health and Social Affairs.
    1. National Board of Health and Welfare. (2018b). Death cause statistics 2017. [In Swedish: Statistik om dödsorsaker 2017]. Accessed January 30, 2019, from.
    1. Håkanson C, Öhlén J, Morin L, Cohen J. A population-level study of place of death and associated factors in Sweden. Scandinavian Journal of Public Health. 2015;3:150. doi: 10.1177/1403494815595774.
    1. Bökberg C, Behm L, Wallerstedt B, Ahlström G. Evaluation of person-centredness in nursing homes after a palliative care intervention: Pre- and post-test experimental design. BMC Palliative Care. 2019 doi: 10.1186/s12904-019-0431-8.
    1. Regional Co-operative Cancer Centres. (2012). The national care program for palliative care 2012-2014. [In Swedish: Nationellt vårdprogram för palliativ vård 2012–2014]. Stockholm, Sweden.
    1. National Board of Health and Welfare. (2013). The national knowledge support document for good palliative care at the end of life. [In Swedish: Nationellt kunskapsstöd för god palliativ vård i livets slutskede—Vägledning, Rekommendationer och indikatorer—Stöd för styrning och ledning]. Stockholm: Sweden. Accessed January 30, 2019, from
    1. World Health Organization . WHOQOL-BREF. Introduction, administration, scoring and generic version of the assessment. Geneva: WHO; 1996.
    1. World Medical Association . WMA Declaration of Helsinki—Ethical principles for medical research involving human subjects. Fortaleza: WMA General Assembly; 2013.
    1. Matosin N, Frank E, Engel M, Lum JS, Newell KA. Negativity towards negative results: A discussion of the disconnect between scientific worth and scientific culture. Disease Models and Mechanism. 2014;3:150. doi: 10.1242/dmm.015123.
    1. Hall S, Kolliakou A, Petkova H, Froggatt K, Higginson IJ. Interventions for improving palliative care for older people living in nursing care homes (Review) The Cochrane Library. 2011 doi: 10.1002/14651858.CD007132.pub2.
    1. Casarett D, Pickard A, Bailey FA, Ritchie C, Furman C, et al. Do palliative consultations improve patient outcomes? Journal of American Geriatric Society. 2008 doi: 10.1111/j.1532-5415.2007.01610.x.
    1. Gjerberg E, Lillemoen L, Førde R, Pedersen R. End-of-life care communications and shared decision-making in Norwegian nursing homes—Experiences and perspectives of patients and relatives. BMC Geriatrics. 2015 doi: 10.1186/s12877-015-0096-y.
    1. Kaarbø E. End-of-life care in two Norwegian nursing homes: family perceptions. Journal of Clinical Nursing. 2011 doi: 10.1111/j.1365-2702.2009.03171.x.
    1. Thoresen L, Lillemoen L. “I just think that we should be informed” a qualitative study of family involvement in advance care planning in nursing homes. BMC Medical Ethics. 2016 doi: 10.1186/s12910-016-0156-7.
    1. Damschroder LJ, Aron DC, Keith RE, Kirsh SR, Alexander JA, Lowery JC. Fostering implementation of health services research findings into practice: A consolidated framework for advancing implementation science. Implementation Science. 2009 doi: 10.1186/1748-5908-4-50.
    1. Nilsen P. Making sense of implementation theories, models and frameworks. Implementation Science. 2015 doi: 10.1186/s13012-015-0242-0.
    1. Alftberg Å, Ahlström G, Nilsen P, Behm L, Sandgren A, Benzein E, et al. Conversations about death and dying with older people: An ethnographic study in nursing homes. Healthcare. 2018 doi: 10.3390/healthcare6020063.
    1. Weiner BJ. A theory of organizational readiness for change. Implementation Science. 2009 doi: 10.1186/1748-5908-4-67.
    1. Nilsen P, Wallerstedt B, Behm L, Ahlström G. Towards evidence-based palliative care in nursing homes in Sweden: A qualitative study informed by the organizational readiness to change theory. Implementation Science. 2018 doi: 10.1186/s13012-017-0699-0.
    1. Cherry KE, Hawley KS, Jackson EM, Boudreaux EO. Booster sessions enhance the long-term effectiveness of spaced retrieval in older adults with probable Alzheimer’s disease. Behavioral Modification Journal. 2009 doi: 10.1177/0145445509333432.
    1. Metz K, Flöter S, Kröger C, Donath C, Piontek D, Gradel S. Telephone booster sessions for optimizing smoking cessation for patients in rehabilitation centers. Nicotine & Tobacco Research. 2007 doi: 10.1080/14622200701485000.

Source: PubMed

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