Erin M. Samson, MD1, Elaine Moody, PhD2, Lori E. Weeks, PhD2
1Faculty of Medicine, Dalhousie University, Halifax, NS
2Faculty of Nursing, Dalhousie University, Halifax, NSDOI: https://doi.org/10.5770/cgj.27.690
ABSTRACT
Background
Young adults living with disabilities may sometimes end up in long-term care facilities which may not always meet their needs. Our project set out to pilot a supplemental assessment tool, a questionnaire to be used upon admission of younger adults into long-term care. We wanted the opinions of both staff and younger residents on what modifications may be needed in the implementation processes to ensure effectiveness of the tool.
Methods
This project followed a qualitative design, implementing a previously designed supplemental assessment tool with five staff members and seven younger residents of two long-term care homes in Halifax, Nova Scotia. Residents completed the questionnaire with members of staff involved in admissions. Each group participated in follow-up interviews regarding their thoughts on implementation of the tool. Responses were analyzed using the constructs of the Consolidated Framework in Implementation Research following direct content analysis methods.
Results
Feedback from residents and staff suggested that the tool could not be used as a one-size-fits-all solution but that flexibility in the format, content, and structure of the tool would be beneficial to ensure its utility in a variety of settings. Issues raised by staff and residents included, but were not limited to, accessibility of the intervention, the availability of resources, the format of the intervention and topics covered within it, and ensuring that processes for implementation are clearly defined.
Conclusions
Both staff and residents approved of the tool for use in the admissions process and agreed that it would enhance the admissions practices already in place.
KEYWORDS: Nursing home, quality of life, questionnaire, preferences, implementation
The care of younger residents in long term residential settings is an issue that has recently been drawing criticism from disability advocates across Canada and globally.(1,2,3) Critics argue that these settings are focused on the care of older people, and not designed with younger populations in mind; they suggest that long-term care (LTC) does not meet their differing physical, social, and emotional needs.(4,5) While this issue has recently been drawing increased media attention, proponents have recognized the challenges associated with younger people living in long-term care for decades.(6) According to the 2016 census, 240 Nova Scotians between 18 and 60 years old live in nursing homes, 4% of the total number of people in nursing homes in that year.(7,8) On a national level, data from Statistics Canada released in 2022 show that 96,860 adults between the ages of 18 and 64 were living in a collective dwelling (includes health care and related facilities, nursing homes, and residences for seniors) in 2021. This is approximately 11% of the overall number of adults living in these settings in this year.(9) Younger adults in LTC are diverse, with health-care needs including chronic and progressive conditions, as well as injuries that cause long-term disability, such as stroke.(10,11,12) While the context of long-term care settings is not ideal for younger residents, their presence in these settings will likely continue for the foreseeable future because there has been minimal engagement on the part of political leaders to advocate for, or participate in, the search for alternatives.(13) Given this reality, it is important to acknowledge the unique needs of younger residents, and explore possibilities for making LTC settings responsive to their needs. Our research team has explored the role of a supplementary assessment tool for use in long-term care settings when a younger person is being admitted, to evaluate their needs and preferences.
The supplemental assessment tool (see Appendix A) that we explored during this project was designed through research by a student at Dalhousie Medical School, Emma Hazelton-Provo, and her mentor Dr. Lori Weeks,(14) and refined through the use of focus groups comprised of younger people living in LTC.
This qualitative research project used interviews to explore the implementation of the assessment tool in two LTC facilities in NS. We collaborated with two long-term care organizations in Halifax, Nova Scotia: a large private setting and a large non-profit setting, both in urban areas. Both residents and staff members participated in the project. Ethics approval for the project was obtained from the research ethics board at Dalhousie University (2021-5530), and approval for the project was obtained from each of the participating LTC homes.
A contact person at each institution helped with recruitment of participants as COVID restrictions limited the lead researcher’s ability to enter each setting in person. This contact person assisted recruitment by hanging posters asking for interested participants to contact the lead researcher, and by identifying potential eligible candidates who met the inclusion/exclusion criteria and approaching them individually to gauge their interest. Inclusion criteria included: being between the ages of 19 and 65, ability to communicate verbally in English, and agreeing to be audio-recorded for the purposes of the follow-up interviews. Participants also had to be able to provide consent to participate in the project, either individually or through a substitute decision-maker. Audio-recorded verbal informed consent was obtained from each participant.
The original assessment tool (see Appendix A) was intended to be used with younger residents admitted during the time the study was taking place; no younger residents were admitted during this time who wished to participate in the study. Anticipating this possibility, the assessment tool was modified (see Appendix B) to a version more easily understood in the context of residents already living in LTC, by changing the wording to reflect past, rather than present, admission. This modified supplemental assessment tool was implemented with existing residents to get their perspectives on how this intervention could potentially have changed their admission experience, and how they think the implementation process could be altered to achieve maximum benefit and generalizability. Staff members responses were also analyzed in terms of how they were physically completed (writing format, etc.). A copy of these responses was provided to the staff members who were involved in care planning at the participating facilities.
Residents participated in two interviews, each lasting approximately one hour. In the first interview, residents answered questions from the supplemental assessment tool, posed by a member of staff habitually involved in the admissions process. This initial administration of the supplemental assessment tool took place at the participating facilities.
In the second interview, six to 10 weeks later, residents answered questions posed by the lead researcher regarding their experience with the supplemental assessment tool. These follow-up interviews took place using the teleconferencing service Zoom, in locations participants found both comfortable and private. Audio-recorded interviews were then transcribed for the purpose of data analysis.
Resident interviews were semi-structured, using questions from the supplemental assessment tool or the open-ended interview guide, with the potential for follow-up questions/clarification as necessary based on participant responses. Follow-up interviews were audio-recorded, while responses from the supplemental assessment tool were recorded in written format by assisting staff members.
Staff members assisted with the implementation of the supplemental assessment tool at the first time point with participating residents, and then participated in follow-up interviews six to 10 weeks later. The follow-up interview was conducted by the lead researcher, over Zoom, and included questions on staff members’ views of the assessment tool and its implementation. These follow-up interviews were audio-recorded. Participating staff members varied in terms of their time/experience in long-term care, as well as in their roles within their respective institutions. Staff members from recreation therapy and social work both participated in the implementation of the project. Timelines for both resident and staff activities are included in Figure 1.
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FIGURE 1 Timeline of research activities | ||
The follow-up interview guides (see Appendices C and D) were different for staff and residents, recognizing each group’s unique perspectives. Interview guides asked about topics including changes that participants think should be made to the implementation of the tool, their thoughts on its utility and practicality, as well as how they think the process of using the tool fits into their current living/working environment. All questions were informed by the Consolidated Framework for Implementation Research (CFIR),(15) and assessed aspects such as intervention characteristics, inner and outer environments, personal characteristics, and the implementation process.
Data were analyzed by the lead researcher. First, responses to the supplemental assessment tool—as recorded by staff—were analyzed to determine if there were any patterns as to how staff interacted with the tool, given its current format. Secondly, responses to the follow-up interviews were deductively coded using the constructs of the CFIR framework as themes (see Figure 1).
Seven residents and five staff members participated in the study. Residents and staff members were both male and female, and ranged in age as well as time in long-term care/job experience. All residents were under age 65, with the youngest resident being in their 30’s. One resident (not included in the above total) completed the consent process and ultimately decided not to participate in the project.
Responses to the follow-up interviews were analyzed using the main constructs of the CFIR framework, and specific sub-constructs as they applied to staff and resident responses. This was achieved using a direct qualitative content analysis approach, using a pre-existing framework as a starting point for theme development.(16) Examples of quotations from participating staff members and residents have been chosen to illustrate each construct (see Figure 2).
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FIGURE 2 Constructs of the CFIR framework and themes elicited in interviews | ||
Participant responses touched on four main themes, below.
Several participants mentioned that the format of residents verbally reporting their answers to staff would not work for those residents who were non-verbal. The complexity of the language used was also questioned.
“Because not everybody can read that paper, they have to have people read it to them, but they still don’t understand it. So basically…make it as easy as possible.” – Resident 1
“It would fit…but it really pertained to those who were verbal.” - Staff 1
Many residents and staff members were satisfied with the breadth of topics covered on the assessment tool and felt that it explored topics which were not incorporated on their own admission assessments.
“Yeah…I don’t know that any of our assessments specifically ask about like technology or about programs in the community that someone may have been attending and want to attend… - Staff 2
There was some concern about how the format of the tool, being a paper assessment, may hinder its implementation.
“I would say it should be put on our electronic system instead of on paper... Writing down is kinda hard…” – Staff 2
The responses from the supplemental assessment tools were analyzed to determine how the format of the tool influenced the manner in which answers were recorded; responses suggested the need for a change in format.
Several staff members went outside of the dedicated space when filling in the tool, suggesting that either the format of the tool should be changed (an electronic version), or the space provided for responses should be expanded.
Some staff members wrote abbreviated responses (incomplete sentences, abbreviated words) when filling in the tool, suggesting it may have been difficult to write responses as they were spoken. Some abbreviations were difficult to interpret, and some staff members ultimately chose to type responses when there were concerns regarding legibility. If responses were not legible, it would be difficult to use them to make relevant changes to care plans. A different format (e.g., electronic) would be helpful in fully capturing resident responses and facilitating legibility.
Given the breadth of the topics covered on the assessment, and the overlap with existing admissions processes, it was suggested that the tool may need to be shortened to keep it efficient.
“Well, some of the information…maybe felt a little bit repetitive because the answers kind of came up in answering another portion of the questionnaire.”- Staff 4
Regarding the outer setting, one main theme emerged.
The majority of residents felt that staff were well-informed about their preferences. One resident felt that due to the similarity in age, there were no issues connecting to staff.
“…a lot of the staff are pretty much the same age of the younger people here, you know, so they kind of stay in touch quite well.” – Resident 2
Regarding the inner setting, two main themes emerged.
Most participants, both staff members and residents, felt that they were living and working in an environment that was open to change.
“…we incorporate a lot of change on a regular basis, so we’re pretty used to it, and I think mostly people embrace change especially if it’s part of making life better for our residents.” – Staff 4
There were concerns about the limitations imposed by resources, particularly during the pandemic, including the time and personnel it would take to implement this assessment.
“I think if we had more resources, it would make it a lot easier…it’s a bit of a challenge adding more upfront paperwork for people given the current complement of folks that we have.” – Staff 4
Regarding the characteristics of individuals involved in the implementation of the intervention, two main themes emerged.
Overall, most participants felt that people would be open to participating in an assessment like this one, and that it would present a valuable opportunity for communication. A staff member expressed the idea that the utility of the assessment may be impacted by resident communication styles.
“[The questions] were very open-ended, and the resident I had was not really an open end[ed] answering person. So… it would just depend on the person.” – Staff 3
Most participants had a positive attitude towards the assessment and felt that it would set a good foundation for communication. One resident felt that an assessment would not change the fact that it takes time to get to know people.
“I think that once they get in here, with or without an assessment, the people that are here presently the staff has had time to work with them, and them to work with the staff as well.” – Resident 2
Regarding the process of implementing the intervention, two main themes emerged.
Many staff members expressed the idea that, while the tool incorporated aspects of many different disciplines within health care, the process of implementation should be designated to a particular professional/role to generate consistency.
“And sometimes it’s also information that’s really appropriate for the whole care team to have and social work maybe more specifically, so there might even be portions of it that could be divided up and be engaged with by different disciplines...” – Staff 4
One of the main concerns raised by staff members during this project was to have clearly defined processes for what to do with the information collected using the tool.
“…some of the things that came up … were very personal and very difficult times that they shared… and so wanting to be sure that when you’re opening a door, what the purpose or benefit is to the person; are you able to provide the support that they might need going forward as a result of you engaging in the questionnaire with them.” – Staff 4
Overall, staff and residents appreciated the opportunity to discuss the needs and preferences of younger residents and approved of the tool for use in the admission process. Responses suggested that the tool would enhance the admissions processes already in place, but that flexibility in the format, content, and structure of the tool would be beneficial to support the success of implementation and ensure that the tool is accessible. Some of the recommendations from staff and residents on modifications to the implementation process include changing the format of the tool to electronic, avoiding the use of abbreviations when filling out resident responses, ensuring there are processes in place to be able to respond to resident concerns as they are expressed, ensuring accessible language on the tool, and tailoring the tool to individual settings to ensure minimal redundancy in admissions processes.
New research supports what many critics have known for years: younger people in LTC represent a distinct population from other LTC residents, with different health issues, support systems, and ultimately care needs.(17,18) This emphasizes the need for further research into this population, such as how to best support their needs and preferences, and demonstrates why an assessment tool like the one piloted in this project has the potential to be useful to younger people living in LTC and those that care for them.
There has been previous research in developing tools to assess the quality of life and experiences of older adults living in LTC;(19,20,21,22) and there has been research examining the quality of life of younger residents living in long-term care,(23,24) as well as looking at how quality of life differs between older and younger residents of long-term care.(11) This project has a particular focus on younger residents in long-term care, and on developing an assessment tool specifically for use in this population with a focus on improving their quality of life; a literature search using key phrases such as “young* residents”, “long term care”, “quality of life”, and “assessment OR tool OR survey OR intervention OR instrument” has found no other comparable assessment, either previously developed or in development. Thus, this tool represents a novel development in the care of younger people in LTC facilities, as discussed in the article detailing its development,(14) and this project an initial exploration into how to optimize this tool for practical use with younger residents in a wider variety of long-term care settings.
This assessment tool presents a challenge as well as an opportunity, to recognize that not all of the activities/changes elicited in implementing the assessment can be accommodated in every facility, but to consider the assessment as a tool for gathering data to support future changes and opportunities for improving care.
Limitations of the research project include using a single coder to analyze the participants’ transcribed interviews, a small sample size, and administration of the tool with residents currently admitted to long-term care. The single coder used the constructs of the CFIR framework to complete their coding, with sub-themes emerging from participant responses. They did not have any special training before completing this project; given these facts, it is unclear if results would be replicable if completed by another coder. This also introduces the opportunity for bias in the interpretation of participant responses. In terms of sample size, the number of residents and staff participants was limited by the size of the organizations in question, with only a relatively small proportion of each of these populations meeting the inclusion criteria for participation in the project; thus, it is unclear if saturation was achieved in the interview responses. Completing the assessment tool within a larger organization or with a larger number of organizations would provide a clearer sense of whether there are still more sub-themes to be elicited.
The implementation process needs to be refined based on the needs of each facility and its residents, and well-defined processes should be in place before implementation to ensure that the information collected using the assessment tool can be utilized in a way that is effective and efficient.
Next steps for this project may include designing and piloting an electronic version of the tool, in addition to considering a longer-term pilot project, using the tool only with newly admitted residents across a larger variety of settings.
This project could not have been completed without the assistance of participating staff members and residents at the long-term care homes involved. I thank them for their contribution of time and insight, as well as their efforts to help me organize this project during their own difficulties with the COVID-19 pandemic.
We have read and understood the Canadian Geriatrics Journal’s policy on disclosing conflicts of interest and declare that we have none.
Dalhousie Research in Medicine Studentship Grant $5,000.
1. Priest L. Nursing homes no answer for the young. The Globe and Mail [Internet]. 2004 Dec 18 [cited 2020 Jan 1]. Available from: https://www.theglobeandmail.com/news/national/nursing-homes-no-answer-for-the-young/article1008752/
2. Goffin P. Thousands of under-65 adults with physical disabilities are being forced into Ontario nursing homes: ministry data. The Star [Internet]. 2017 jul 9 [cited 2020 Jan 1]. Available from: https://www.thestar.com/news/gta/2017/07/09/thousands-of-under-65-adults-with-physical-disabilities-are-being-forced-into-ontario-nursing-homes-ministry-data.html
3. Assouad M. Nursing homes across Nova Scotia caring for younger residents. Globalnews.ca [Internet]. 2015 Feb 26 [cited 2020 Jan 1]. Available from: https://globalnews.ca/news/1852528/nursing-homes-across-nova-scotia-caring-for-younger-residents/
4. Page J. Quebec man living with multiple sclerosis demands better care for younger adults. CBC News [Internet]. 2016 Nov 9 [cited 2022 Nov 21]. Available from: https://www.cbc.ca/news/canada/montreal/quebec-man-living-with-multiple-sclerosis-demands-better-care-for-younger-adults-1.3844478
5. Burgess S. Nursing home life a struggle for young developmentally disabled people. CBC News [Internet]. 2014 Apr 9 [cited 2022 Jun 16]. Available from: https://www.cbc.ca/news/canada/ottawa/nursing-home-life-a-struggle-for-young-developmentally-disabled-people-1.2602552
6. Gutman GM. Younger Adults in Long-Term Care Facilities: a Review of the Literature Concerning Their Characteristics and Environmental Design, Staffing and Programming Needs. Burnaby, BC; Simon Fraser University; 1989.
7. Hannebohm SC. Fighting to keep young adults with disabilities out of nursing homes. The Coast [Internet]. 2019 Apr 25 [cited 2020 Jan 1]. Available from: https://www.thecoast.ca/halifax/fighting-to-keep-young-adults-with-disabilities-out-of-nursing-homes/Content?oid=21533550
8. Statistics Canada [Internet]. Type of Collective Dwelling (16), Age (20) and Sex (3) for the Population in Collective Dwellings of Canada, Provinces and Territories. 2016 [cited 2022 Dec 12]. Available from: https://www12.statcan.gc.ca/census-recensement/2016/dp-pd/dt-td/Rp-eng.cfm?TABID=2&LANG=E&A=R&APATH=3&DETAIL=0&DIM=0&FL=A&FREE=0&GC=12&GL=-1&GID=1234495&GK=1&GRP=0&O=D&PID=109537&PRID=0&PTYPE=109445&S=0&SHOWALL=0&SUB=0&Temporal=2016&THEME=116&VID=0&VNAMEE
9. Statistics Canada [Internet]. Type of collective dwelling, age and gender for the population in collective dwellings: Canada, provinces and territories. Persons living in collective dwellings, 2021 census. 2022 Apr 17 [cited 2022 Dec 12]. Available from: https://www150.statcan.gc.ca/t1/tbl1/en/cv.action?pid=9810004501
10. Jervis LL. An imperfect refuge: life in an “old folk’s home” for younger residents with psychiatric disorders. Soc Sci Med. 2002;54(1):79–91. PubMed
11. Watt A, Konnert C. Quality of life in the nursing home: perspectives of younger and older residents. Can J Aging. 2007;26(4):403–10.
12. Fries BE, Wodchis WP, Blaum C, Buttar A, Drabek J, Morris JN. A national study showed that diagnoses varied by age group in nursing home residents under age 65. J Clin Epidemiol. 2005 Feb 1;58(2):198–205. PubMed
13. Ray C. After a decade, N.S. disability rights advocate finally allowed to move out of nursing home. CBC News [Internet]. 2022 Nov 3 [cited 2022 Nov 24]. Available from: https://www.cbc.ca/news/canada/nova-scotia/disability-rights-vicky-levack-independent-living-apartment-1.6639119
14. Hazelton-Provo EJ, Weeks LE. Developing a supplemental assessment tool for younger residents in long-term care. Can Geriatr J. 2021 Sept;24(3):170. PubMed PMC
15. 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. Implement Sci. 2009 Dec;4(1):1–15.
16. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005 Nov;15(9):1277–88. PubMed
17. Ne’eman A, Stein M, Grabowski DC. Nursing home residents younger than age sixty-five are unique and would benefit from targeted policy making. Health Aff. 2022 Oct 1;41(10):1449–59.
18. Shieu BM, Toles M, Hoben M, Schwartz TA, Beeber AS, Anderson RA. A cross-sectional, correlational study comparing individual characteristics of younger and older nursing home residents using Western Canadian Resident Assessment Instrument–Minimum Data Set (RAI-MDS) 2.0. J Am Med Dir Assoc [Internet]. 2022 Nov;23(11):1878–1882.e3. Available from: https://doi.org/10.1016/j.jamda.2022.07.027
19. Gerritsen DL, Steverink N, Frijters DHM, Hirdes JP, Ooms ME, Ribbe MW. A revised Index for Social Engagement for long-term care. J Gerontol Nurs. 2008;34(4):40–48. PubMed
20. Inter RAI. Long-term Care Facilities [Internet]. [cited 2023 Sep 10]. Available from: https://catalog.interrai.org/category/long-term-care-facilities
21. Iris M, DeBacker NA, Benner R, Hammerman J, Ridings J. Creating a quality of life assessment measure for residents in long term care. J Am Med Dir Assoc [Internet]. 2012 June;13(5):438–47. Available from: http://dx.doi.org/10.1016/j.jamda.2011.08.011
22. Kane RA, Kling KC, Bershadsky B, Kane RL, Giles K, Degenholtz HB, et al. Quality of life measures for nursing home residents. J Gerontol Ser A. 2003 Mar 1;58(3):M240–M248.
23. Quinn HD, Zeeman H, Kendall E. A place to call my own: young people with complex disabilities living in long-term care. J Prev Interv Community [Internet]. 2016 Aug;44(4):258–71. Available from: http://dx.doi.org/10.1080/10852352.2016.1197722
24. Shieu BM, Almusajin JA, Dictus C, Beeber AS, Anderson RA. Younger nursing home residents: a scoping review of their lived experiences, needs, and quality of life. J Am Med Dir Assoc [Internet]. 2021 Nov;22(11):2296–312. Available from: https://doi.org/10.1016/j.jamda.2021.06.016
Reflect on your experiences transitioning into long-term care…
Correspondence to: Erin M. Samson, MD, Faculty of Medicine, Dalhousie University, 5849 University Ave., Halifax, NS B3H 4R2, E-mail: er265405@dal.ca
COPYRIGHT
This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial No-Derivative license (https://creativecommons.org/licenses/by-nc-nd/4.0/), which permits unrestricted non-commercial use and distribution, provided the original work is properly cited.
Canadian Geriatrics Journal, Vol. 27, No. 1, MARCH 2024