Development of a family caregiver needs-assessment scale for end-of-life care for senility at home (FADE)

English version

Autoři: Midori Saito ^aff001; Etsuko Tadaka ^aff002; Azusa Arimoto ^aff002
Působiště autorů: Kanagawa Ward Medical Association Visiting Nursing Station, Yokohama, Kanagawa, Japan ^aff001; Department of Community Health Nursing, Graduate School of Medicine, Yokohama City University, Yokohama, Kanagawa, Japan ^aff002
Vyšlo v časopise: PLoS ONE 14(9)
Kategorie: Research Article
prolekare.web.journal.doi_sk: https://doi.org/10.1371/journal.pone.0222235

Souhrn

Aim

This study aimed to develop a “family caregiver needs-assessment scale for end-of-life care for senility at home” (FADE) and examine its reliability and validity.

Method

A draft item pool was developed based on a literature review, and simplified to 30 items in four domains. Next, the item pool was reviewed by four visiting nurses and four researchers and refined to 15 items. A cross-sectional study was then conducted using a self-reported questionnaire. Questionnaires were sent to 2703 visiting nurses. The survey questions included participants’ basic demographic information, the importance of each item according to a modified scale, basic demographics for cases of death by senility at home, satisfaction with each item of the modified scale in an example case, and assessment of the case using the Japanese version of the Support Team Assessment Schedule (STAS-J). Internal consistency was assessed using Cronbach’s alpha. Construct validity was confirmed using confirmatory factor analysis, and correlation between the new scale and the STAS-J was used to assess criterion-related validity.

Results

In total, 461 visiting nurses provided valid responses. The exploratory and confirmatory factor analyses identified 12 items from two factors: “Needs for adaptation to senility bereavement” and “Needs for essential skills in supporting a dignified death by senility.” The final model showed appropriate index values: standardized root mean residual = 0.057, Tucker–Lewis index = 0.920, Akaike information criterion = 191.6, and Bayesian information criterion = 298.2. Cronbach’s alpha for the entire scale was 0.908, and was above 0.840 for each factor. The correlation coefficient between STAS-J and the entire scale was 0.259–0.427 (p<0.001).

Conclusions

The FADE scale showed acceptable internal consistency and concurrent validity. The scale can help clarify issues and desires that present themselves at home related to adaptation to senility bereavement and essential skills in supporting a dignified death by senility. Addressing these issues and desires is expected to reduce caregivers’ anxiety and burden, and means the older adults under their care may be respected and enabled to live with dignity and peace.

Klíčová slova:

Physical sciences – Research and analysis methods – People and places – Population groupings – Professions – Mathematics – Medicine and health sciences – Health care – Health care facilities – Health care providers – Nurses – Medical personnel – Statistics – Mathematical and statistical techniques – Statistical methods – Age groups – Mental health and psychiatry – Geriatrics – Elderly – Mood disorders – Depression – Factor analysis – Palliative care – Long-term care – Nursing homes – Geriatric psychiatry – Geriatric depression

Zdroje

1. Ministry of Health, Labour and Welfare, the White Paper on Annual Health, Labour and Welfare 2012 (2012) [cited 24 February 2019] https://www.mhlw.go.jp/wp/hakusyo/kousei/12/dl/1-06.pdf

2. United Nations, Department of Economic and Social Affairs, World Population Prospects: The 2017 Revision [cited 11 March 2019] https://www.un.org/development/desa/publications/world-population-prospects-the-2017-revision.html.

3. Petrini M, Cirulli F, D’Amore A, Masella R, Venerosi A, Carè A. Health issues and informal caregiving in Europe and Italy. Ann Ist Super Sanità. 2019:55(1): 41–50 doi: 10.4415/ANN_19_01_08 30968835

4. Riedel M, Kraus M. Informal care provision in Europe: regulation and profile of providers. ENEPRI Research Report n. 96. 2011.

5. Ewing G, Grande G. Development of a Carer Support Needs Assessment Tool (CSNAT) for end-of-life care practice at home: a qualitative study. Palliat Med. 2012;27(3): 244–256. doi: 10.1177/0269216312440607 22450160

6. Karlsson C, Berggren I. Dignified end-of-life care in the patients’ own homes. Nurs Ethics. 2011;18(3): 374–385. doi: 10.1177/0969733011398100 21558113

7. World Health Organization, ICD-11 for Mortality and Morbidity Statistics (2018) [cited 24 February 2019], https://icd.who.int/browse11/l-m/en

8. Ministry of Health, Labour and Welfare, Demographics survey statistics (2018) [cited 31 July 2019] https://www.mhlw.go.jp/toukei/saikin/hw/jinkou/geppo/nengai18/index.html

9. Ministry of Health, Labour and Welfare, Construction of Regional Comprehensive Care System (2015)[cited 24 February 2019] https://www.mhlw.go.jp/stf/shingi2/0000086278.html

10. Ministry of Health, Labour and Welfare, Medical fee revision in (2016) [cited 28 January 2019] https://www.mhlw.go.jp/file/06-Seisakujouhou-12400000…/0000115980.pdf

11. Ministry of Health, Labour and Welfare, Demographics survey statistics (2016) [cited 12 March 2019] https://www.mhlw.go.jp/toukei/saikin/hw/jinkou/kakutei17/index.html

12. Ministry of Health, Labour and Welfare, Survey on end-of-life medical care (2010) [cited 24 February 2019] https://www.mhlw.go.jp/shingi/2008/10/dl/s1027-12e.pdf

13. Visser G, Klinkenberg M, Broese V, Groenou M, Willems D, Knipscheer C, et al. The end of life: informal care for dying older people and its relationship to place of death. Palliat Med.2004: 18(5). 468–77 doi: 10.1191/0269216304pm888oa 15332425

14. Lynn J. Perspectives on care at the close of life. Serving patients who may die soon and their families: the role of hospice and other services. JAMA. 2001; 285(7): 925–32 doi: 10.1001/jama.285.7.925 11180736

15. Swinkels JC, Broese van Groenou MI, de Boer A, Tilburg TGV. Male and female partner-caregivers’ burden: Does it get worse over time? The Gerontologist. 2018 Oct 12. doi: 10.1093/geront/gny132 [Epub ahead of print]. 30321338

16. Murray S, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ. 2005; 330 (7498): 1007–11. doi: 10.1136/bmj.330.7498.1007 15860828

17. Aoun S, Grande G, Howting D, Deas K, Toye C, Stajduhar K, et al. The impact of the carer support needs assessment tool (CSNAT) in community palliative care using a stepped wedge cluster trial. PLoS One. 2015;10(4): e0123012. doi: 10.1371/journal.pone.0123012 25849348

18. Aoun S, Deas K, Toye C, Ewing G, Grande G, Stajduhar K. Supporting family caregivers to identify their own needs in end-of-life care: Qualitative findings from a stepped wedge cluster trial. Palliat Med. 2015; 29(6): 508–17 doi: 10.1177/0269216314566061 25645667

19. Perry L, Middleton S. An investigation of family carers’ needs following stroke survivors’ discharge from acute hospital care in Australia. Disabil Rehabil. 2011; 33(19–2):1890–1900

20. Matsumoto K, Takai K, Kirino M, Nakajima K. Measurement of care-related needs of family members caring for demented elderly patients at home. The Journal of Academy of Health Science. 2005; 8(3): 154–164

21. Zarit S, Reever K, Bach-Peterson J. Relatives of the impaired elderly: Correlates of feelings of burden. Gerontologist. 1980; 20(6): 649–655 doi: 10.1093/geront/20.6.649 7203086

22. Marwit S, Meuser T. Development of a short form inventory to assess grief in caregivers of dementia patients. Death Stud. 2005; 29(3): 191–205 doi: 10.1080/07481180590916335 15816111

23. Weitzner M, Jacobsen P, Wagner H. The Caregiver Quality of Life Index-Cancer (CQOLC) scale: development and validation of an instrument to measure quality of life of the family caregiver of patients with cancer. Quality of life Research. 1999; 8(1–2): 55–63 10457738

24. Ito E, Tadaka E. Development of a Japanese Version of the Short-Form FAMCARE Scale for family caregivers of terminal cancer patients at home in Japan. Nippon Ronen Igakkai Zasshi. 2018; 55: 81–89. doi: 10.3143/geriatrics.55.81 29503372

25. Miyashita M, Matoba K, Sasahara T, Kizawa Y, Maruguchi M, Abe M et al. Reliability and validity of the Japanese version of the Support Team Assessment Schedule (STAS-J). Palliat Support Care. 2004; 2(4): 379–385 16594400

26. Higginson I, McCarthy M. Validity of the support team assessment schedule: do staff’s ratings reflect those made by patients or their families?. Palliat Med. 1993; 7(3): 219–28 doi: 10.1177/026921639300700309 7505183

27. Hospice foundation, STAS-J scoring manual third edition (2007) [cited 24 February 2019] https://www.hospat.org/stas-j.html

28. Hu L, Bentler P. Cut off criteria for fit indices in covariance structure analysis: conventional criteria versus new alternatives. Structural Equation Modeling, 1999; 6: 1–55.

29. Japanese Nursing Association, Visit Nursing Actual Survey Report of 2014 [cited 24 February 2019] https://www.nurse.or.jp/home/publication/pdf/2015/homonjittai-2014.pdf

30. Stahl ST, Emanuel J, Albert SM, Dew MA, Schulz R, Robbins-Welty G, et al. Design and rationale for a technology-based healthy lifestyle intervention in older adults grieving the loss of a spouse. Contemp Clin Trials Commun. 2017; 8: 99–105. doi: 10.1016/j.conctc.2017.09.002 29170758

31. Albert R. End-of-life care: Managing common symptoms. Am Fam Physician. 2017 Mar 15;95 (6):356–361. 28318209

32. Shimmura K, Tadaka E. Development of an interprofessional collaboration competency scale for children with medical complexity. BMJ Open. 2018;8(6): e019415. doi: 10.1136/bmjopen-2017-019415 29950458

33. Ministry of Health, Labour and Welfare. About remuneration, standard of visiting nursing (2017) [cited 15 March 2019] https://www.mhlw.go.jp/file/05-Shingikai-12601000…/0000184013.pdf.