Using the Knowledge to Action framework to improve housing and support for people with Multiple Sclerosis

Lee Cubis; Sharyn McDonald; Pamela Dean; Robin Ramme; Kate D’Cruz; Megan Topping; Fiona Fisher; Di Winkler; Jacinta Douglas

doi:10.1071/IB23102

RESEARCH ARTICLE (Open Access)

Next Contents Vol 25(3)

Using the Knowledge to Action framework to improve housing and support for people with Multiple Sclerosis

Lee Cubis

^A ^B ^* , Sharyn McDonald

^A ^C ^D , Pamela Dean ^A , Robin Ramme ^A , Kate D’Cruz

^A ^B , Megan Topping

^A ^B , Fiona Fisher ^E , Di Winkler

^A ^B and Jacinta Douglas

^A ^B

+ Author Affiliations

- Author Affiliations

^A Living with Disability Research Centre, La Trobe University, Melbourne, Vic, Australia.

^B Summer Foundation, Melbourne, Vic, Australia.

^C School of Communication and Creative Arts, Deakin University, Melbourne, Vic, Australia.

^D School of Information and Communication Studies, Charles Sturt University, Wagga Wagga, NSW, Australia.

^E Calvary Health Care Bethlehem, Caulfield South, Vic, Australia.

^* Correspondence to: L.Cubis@latrobe.edu.au

Handling Editor: Sharon Kramer

Brain Impairment 25, IB23102 https://doi.org/10.1071/IB23102

Submitted: 21 September 2023 Accepted: 24 June 2024 Published: 2 August 2024

© 2024 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of the Australasian Society for the Study of Brain Impairment. This is an open access article distributed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND)

Abstract

Background

People with Multiple Sclerosis (MS) have unique housing and support needs that are essential for maintaining independence at home; however, there is limited research to guide the design of community living options for this population. The aim of this study was to examine housing and support needs and preferences of people with MS with the intention to inform the planning of a co-designed intervention based on the study’s findings.

Methods

Using the Knowledge to Action (KTA) framework, quantitative (n = 79) and qualitative (n = 6) data from people with MS were extracted and integrated from projects completed by the research team that explored the housing and support needs and preferences of people with disability. Results were synthesised and presented to a reference group for validation, contextualisation, and adaptation to the Australian context.

Results

High physical support needs were common across participants. People most commonly required home modifications to improve accessibility, such as ramps, equipment such as heating and cooling, and assistive technology. Many people required more than 8 hours per day of paid support. Moving into individualised housing facilitated independence and community reintegration. People reported gaps between what they wanted from support workers and what they received, citing individual and systemic barriers.

Conclusion

People with MS have support needs that require proactive and responsive funding arrangements, housing design and support provision. In line with KTA principles, findings will inform the planning of a co-designed intervention that involves people with lived experience of MS and other stakeholders to influence policy and improve home and living outcomes for this population.

Keywords: disability support, hospital discharge, housing, knowledge to action framework, Multiple Sclerosis, National Disability Insurance Scheme, progressive neurological disorders, specialist disability accommodation.

Introduction

Multiple Sclerosis (MS) is a progressive autoimmune disease affecting 2.8 million people globally (Walton et al. 2020). MS affects the central nervous system, causing physical, cognitive, and psychological symptoms such as fatigue, muscle weakness, balance issues, vision and sensory disturbances, and mobility difficulties (Kister et al. 2013). Cognitive and psychological challenges vary in prevalence and severity (Sá 2008; Benedict and Zivadinov 2011). MS is distinctive for its unpredictable progression. Relapsing-remitting MS (RRMS) involves periods of active disease followed by partial or complete recovery (National Multiple Sclerosis Society 2023). Most people are initially diagnosed with RRMS, but many progress to having secondary progressive MS (SPMS; Lublin et al. 2014). Progressive forms of MS, including primary progressive MS and SPMS, can lead to more severe disability and a greater need for accessible housing and coordinated supports. Unexpected rapid changes in functioning can suddenly increase support needs (Squires et al. 2019), risking extended hospitalisations or admission to residential aged care (RAC), even for those aged under 65 years (Riazi et al. 2012; IPSOS 2020). RAC is unsuitable for people aged under 65 years and is linked to poor physical and psychosocial outcomes (Riazi et al. 2012; Oliver et al. 2020).

Data from 2006 to 2020 suggested that people with MS accounted for 5–17% of adults aged under 65 years in RAC in Australia (Winkler et al. 2006; IPSOS 2020). In 2019, the Australian Government introduced the Young People in RAC Strategy to eliminate RAC as a housing option for those under 65 years of age by 2025, except in exceptional circumstances (Australian Government Department of Social Services 2019). Although RAC admissions for people aged under 65 years are decreasing, 60% of those recorded as leaving RAC have done so because they died (Australian Institute of Health and Welfare 2024). International research calls for improved funding or financial advice for people with MS (Sheppard-Jones et al. 2013; Bo et al. 2018). In Australia, the focus of this study, disability funding is available from state governments and non-government organisations. For instance, the Victorian Aids and Equipment Program offers subsidised aids, equipment, and home and vehicle modifications (Department of Health 2024). However, state support is often criticised for insufficient funding, long waitlists, and limited choices (Assistive Technology for All 2020). The present study focuses on the National Disability Insurance Scheme (NDIS) in the context of Australia’s disability funding landscape.

Introduced in 2013, the NDIS supports Australians aged under 65 years with significant and permanent disability. The NDIS aims to enhance independence, societal integration, and people’s ability to choose individualised supports (NDIA 2016). After a 3-year trial, the NDIS was progressively rolled out nationally until 2020, when it was available nationwide. People who access funding through the NDIS are referred to as ‘participants’, and their budget for a period of time (typically 12 months) is referred to as a ‘plan’. As the plan period approaches completion, the participant attends a meeting with a representative of the National Disability Insurance Agency (NDIA), the agency responsible for administering the NDIS, to discuss their support needs for the coming months or years. This review, combined with reports from allied health professionals, determines the support budget for the next plan period. NDIS funding is separated into three categories: core supports that encompass essential daily needs, including disability support workers; capital costs for assistive technology and home modifications; and capacity-building supports that aim to build individuals’ broader skills and autonomy and can include allied health assessment and intervention.

NDIA data from 2023 revealed that 10,337 of the 610,502 NDIS participants had a primary disability of MS, 74% of whom were female (NDIS 2023a). NDIS participants with MS reported greater proportions of low (30%) or medium (58%) functioning when compared with participants without MS (24% and 46%, respectively). In 2021, 77% of participants with MS had a plan period of 12 months, 14% had a plan period of 19–25 months, and 5% had a plan period of less than 12 months (NDIS 2021a). This was similar to other NDIS participants but differed from those with Motor Neurone Disease, a progressive neurological disorder often characterised by rapid functional decline over a short period, where 38% had shorter plans (NDIS 2021a). More people with MS had goals related to choice and control (25%) and where they live (33%) than those without MS (18% each; NDIS 2021a). Lechner-Scott et al. (2021) found that funding in NDIS plans for people with MS increased with higher disability levels, and allocated funds varied significantly even when people had similar levels of impairment. However, the authors did not address the needs and preferences of people with MS or service gaps arising from unexpected changes in needs. Given the unique and fluctuating needs of people with MS, a policy submission by MS Australia (Australia’s peak body representing people with MS) highlighted the need for NDIA staff and their contractors, such as planners, local area coordinators, and others who influence funding decisions, to have expertise in progressive neurological disorders (Graham and Greenland 2022).

For a small percentage of NDIS participants with very high support needs, funding is provided for housing known as Specialist Disability Accommodation (SDA). SDA is funded through the capital supports budget and incorporates accessible features to help people live more independently and to allow disability supports to be delivered efficiently (NDIS 2022a). At the end of quarter four in 2022, 441 people with MS had funding for SDA, accounting for 2% of NDIS participants with this funding (NDIS 2022b). The proportion of people with MS with SDA funding (4.27%) is slightly higher than those without MS (3.17%). Additionally, the NDIS can provide funding for Supported Independent Living (SIL) for people with high support needs who require paid support at home all of the time (NDIS 2021b). In the year ending 30 June 2023, 4% of NDIS participants with MS received SIL funding (NDIS 2023a). As of September 2023, 6634 people with MS had funding for assistive technology, and 2257 had funding for home modifications (NDIS 2023b). In 2023, the NDIS Review (Australian Government 2023) identified deficiencies in accessible and affordable housing across Australia, contributing to poor housing outcomes for people with disability. The introduction of the National Construction Code in 2022 significantly advanced efforts to create universally accessible homes. By mandating specific standards and prioritising ‘liveable housing design’; these regulations aim to improve housing options for people with disability in Australia (Australian Building Codes Board 2022).

While the functional impairments of MS are well established (see, for example, Kister et al. 2013), limited research specifically addresses the housing and support needs and preferences of people with MS in Australia who experience functional impairment and wish to remain living in the community. Existing literature on support needs often focuses on healthcare settings (e.g. Golla et al. 2012; Liković and Buljevac 2023) and palliative care (Leclerc-Loiselle and Legault 2018) rather than home-based disability supports. A needs analysis of Australians with MS identified equipment needs such as heating and cooling, mobility aids, continence aids, hoists, and specialised beds, and support needs including personal care, mobility, meal preparation, and domestic duties (McCabe et al. 2012). These needs increased with MS progression and symptom severity, with cost being the greatest barrier to obtaining the required supports. Although this analysis provided valuable insights, it was conducted before the NDIS and did not ask participants about their housing needs and preferences.

An American study (Bishop et al. 2015) found that most home modifications for people with MS focused on the bathroom, including the installation of grab rails, modified toilets and showers, the addition of hand-held showers, widened doorways, and broad-scale remodelling for better accessibility. Additional housing modifications included stair lifts, hard flooring, adjustments to cabinets, installation of lever handles, and heating and cooling. Finances emerged as a barrier to completing optimal modifications. Although this study provided important insights into housing modifications and equipment used by people with MS, people were not asked about their preferred housing and support model. Further, the funding and support landscape differs substantially from other countries, meaning that international research is not generalisable to the Australian context (Carey et al. 2018). At present, there are relatively few studies that focus on factors that affect people with MS living in Australia. However, two studies address climatic considerations in Australia (Summers et al. 2012; Verikios et al. 2013), both emphasising the importance of air conditioning for people with MS suffering heat intolerance, a well-established feature of the disease (Flensner et al. 2011).

Although international studies exist on functional impairments, equipment, and home modifications for people with MS (e.g. Bishop et al. 2013; Bishop et al. 2015), there is a dearth of literature identifying the housing and support needs and preferences for people with MS in Australia. Further, no known studies exist that translate into policy or practice change. The aim of this study was to examine housing and support needs and preferences of people with MS to inform the planning of a co-designed intervention based on this study’s findings. Accordingly, the Knowledge to Action (KTA) framework (Graham et al. 2006) was applied to analyse existing data to lay the foundation for a co-designed intervention.

Methods

This study was guided by the KTA framework, which was developed to implement evidence-based practices by bridging the gap between knowledge and practice (Graham et al. 2006; Graham and Tetroe 2010). The KTA framework consists of a Knowledge Creation component and an Action Cycle to facilitate knowledge transfer into action. Although various implementation models exist in healthcare research (Powell et al. 2019), the KTA framework was chosen for its roots in planned action theories and its systems perspective (Graham and Tetroe 2010). This approach was deemed appropriate given the complex interplay of health, housing, and disability sectors in supporting people with disability in Australia, emphasising local context and culture as key mechanisms in applying knowledge (Graham and Tetroe 2010; Carey et al. 2018).

In applying the KTA framework (Graham et al. 2006), we began with the Action Cycle, identifying problems and knowledge gaps, and simultaneously initiated the Knowledge Creation component, focusing on knowledge inquiry. To understand the housing and support needs of people with MS, we extracted de-identified MS-specific data from individual projects that had involved people with MS. Given the KTA framework does not prescribe specific methodologies at each sub-phase, we used principles of secondary data analysis (Doolan and Froelicher 2009; Johnston 2014) and integrated data relevant to our research questions. Secondary data analysis can be useful when the current study’s research questions are consistent with the original study’s variables (Doolan and Froelicher 2009; Johnston 2014). In their methodological review of the use of secondary data, Doolan and Froelicher (2009) asserted the importance of well-articulated research questions and evaluation of the appropriateness of the original sample, design, and measures. Hence, we developed clear research questions: ‘What are the housing and support needs and preferences of people with MS in Australia?’ and ‘What barriers and opportunities exist to meet these needs?’. Each dataset was evaluated with the original primary investigator for its relevance and methodological strengths and limitations.

Data from four independent sources were selected, resulting in the creation of MS-specific datasets labelled A through D (Table 1). The chief investigator oversaw a reference group and three primary research studies (Datasets B, C and D) along with their respective research teams. Dataset A comprised de-identified aggregate administrative data that were provided to the research team. Members of the research team independently analysed the results during the knowledge inquiry sub-phase to contribute toward a collective evidence base in preparation for knowledge synthesis. This process was instrumental in the Action Cycle: assess barriers phase. The following sections outline the description and purpose of the reference group, as well as the four datasets.

Table 1.Study and participant characteristics.

Dataset	Study name	Date of data collection	Method of analysis	n	Demographics	Focus
Dataset	Study name	Date of data collection	Method of analysis	n	Gender: Female (F) and male (M); and age range (years)	Focus
A	Housing Hub	2020–23	Quantitative	n = 71	F: n = 49	Housing and supports
					M: n = 18
					Unknown: n = 4
					Age range: 18–74
B	Hospital Discharge Trajectory	2015–20	Quantitative	n = 7	F: n = 6	Housing and supports
					M: n = 1
					Age range: 48–62
C	Study on paid supports	2020–21	Qualitative	n = 5	F: n = 4	Supports
					M: n = 1
					Unknown: n = 4
					Age range: 40–67
D	Longitudinal case study	2019–21	Qualitative and quantitative	n = 1	F: n = 1	Housing and supports
D	Longitudinal case study	2019–21	Qualitative and quantitative	n = 1	Age: 50+	Housing and supports

Reference group

A reference group consisting of people with MS (n = 2), family members (n = 2), and professionals with research or clinical MS experience (n = 4) was established. Members, aged over 18 years and from three Australian states, had significant MS experience through lived experience or their occupations involving knowledge of home and living options for people with MS. They were selected via an Expression of Interest from a database of interested individuals. Online meetings were held quarterly over a year. Members guided the research, validated results, and provided guidance on the relevance of international findings to Australia. Documentation was provided in advance of meetings, and individual feedback was summarised to maintain confidentiality. Members highlighted additional information sources, identified NDIA knowledge gaps and NDIS process barriers, confirmed literature gaps, clarified interpretations, and provided feedback on consolidated results.

Data extraction

Data from participants with MS were largely extracted from recent projects completed by the research team that explored the needs and preferences of people with disability in the domains of housing, hospital discharge outcomes, and paid support. An additional dataset, Dataset A, comprised de-identified administrative data from an online housing platform for people with disability.

Quantitative data extraction

Dataset A: Housing Hub data

The Housing Hub is an online platform that connects people with disability with housing providers on the basis of their needs and preferences. The platform provides a selective listing of available accessible properties, many of which are SDA properties, to rent or buy in all states and territories in Australia. As part of service delivery, the Housing Hub gives people with disability the option to create a profile on which they outline their housing needs and preferences (e.g. location preference, access needs, preference for who they live with). The Housing Hub allows platform users to search anonymously or optionally disclose personal information to build a profile. As part of building a profile, individuals indicate their agreement to the privacy policy, which states that information may be used to conduct research. When creating a profile, people can complete or skip items. Therefore, the sample sizes in reported items range from 16 to 69, reflecting the number of people who chose to provide information about a given item. The sample size of each variable is reported in Table 2. De-identified administrative data, which anonymise personal details, are routinely published to provide up-to-date insights into characteristics, needs, and preferences of housing seekers who use the platform (e.g. Rothman et al. 2022). For this study, de-identified, aggregate administrative data for people self-identified as having MS (n = 71) were provided to the research team for further analysis. Demographic characteristics, desired housing features, and support needs were tabulated.

Table 2.Participant demographics and preferred housing characteristics (n = 71).

Characteristic	n	n (%)
Age range (years)	68
18–24		1 (1.5%)
25–34		2 (2.9%)
35–44		11 (16%)
45–54		18 (26%)
55–64		25 (37%)
65–74		11 (16%)
Unknown		3
Gender	69
Male		18 (26%)
Female		49 (71%)
Unknown		4
NDIS participant	65
No		3 (4.6%)
Yes		62 (95%)
Unknown		6
Bedrooms	50
1		11 (22%)
2		26 (52%)
3		8 (16%)
4		4 (8.0%)
5		1 (2.0%)
Unknown		21
Bathrooms	45
1		17 (38%)
2		25 (56%)
3		3 (6.7%)
Unknown		26
Preferred occupancy	51
By myself		31 (61%)
Share house (with people with a disability)		11 (22%)
With a partner or family		9 (18%)
Unknown		20
Preferred state	47
NSW		11 (23%)
Qld		10 (21%)
SA		3 (6.4%)
Vic		18 (38%)
WA		5 (11%)
Unknown		24

Dataset B: hospital discharge trajectory data

A database tracking hospital discharge outcomes for people with acquired disability and complex needs was examined for data on people with MS (Human ethics reference HREC/48732/MonH-2018-158294). This database is part of a large multi-site research project being conducted by Summer Foundation and La Trobe University on evaluating the hospital discharge trajectory (HDT) for people with disability and complex needs. Data in this study are provided in a de-identified format from participating hospitals. One of the lead researchers of this study identified, extracted, and tabulated the relevant MS-specific data. Of the total database (n = 428), seven people with MS were identified. Variables relevant to this project included demographic and disability characteristics, reason for hospitalisation and housing, and equipment and support needs prior to and post hospital discharge. Given the small sample of people with MS in this database, information for each person with MS was reported descriptively by case.

Qualitative data extraction

Dataset C: study on paid supports

Five people with MS were identified from a broader qualitative study on factors that influence paid supports (Human ethics reference HEC20253; see Topping et al. 2022 for details and methodology). Paid supports refers to assistance with daily and domestic living provided by disability support workers. Participants were interviewed in depth about their experiences and perspectives on paid support between November 2020 and June 2021. Open-ended interviews focused on support arrangements, quality support, support relationships, and building support teams (see Topping et al. 2022 for the interview schedule). Interviews were audio-recorded and transcribed verbatim. The original study used constructivist grounded theory (Charmaz 2006) to analyse data and develop a quality support model. Due to the open-ended nature of the interviews, two original researchers, including the chief investigator, extracted data relevant to the current study’s objectives. It is important to note that the findings might not provide a fully comprehensive perspective specifically tailored to the current research question. The researchers coded the data and identified patterns to develop themes and subthemes relating to support needs and preferences using thematic analysis (Braun and Clarke 2006). Quotes support the findings, and participant names are replaced with pseudonyms.

Mixed method data extraction

Dataset D: longitudinal case study – the importance of home

This single-participant case study tracked the experience and outcomes of a female with MS participating in a longitudinal mixed method project investigating the lived experience, community integration, and support outcomes of people with disability moving into SDA funded by the NDIA (Human Ethics reference HEC18441). Dataset D offers a rich, personalised perspective whereby reflections of the progressive nature of a person’s MS have influenced their housing journey across multiple points in time, documenting barriers and ideals. Data were derived from qualitative interviews and the Community Integration Questionnaire-Revised (CIQ-R, Callaway et al. 2016). The CIQ-R has a total of 18 items across four subscales: Home Integration, Social Integration, Productivity and Electronic Social Networking. Preliminary findings from the source study have been published (Douglas et al. 2023, 2024). The chief investigator isolated this single case study and performed the statistical analysis. The qualitative data analysis was consistent with Dataset C, resulting in the development of themes and subthemes within an instrumental case study context (Stake et al. 2000).

Integration and synthesis

In line with the KTA knowledge synthesis subphase (Graham and Tetroe 2010), data from the four datasets were integrated and synthesised to address research questions about housing and supports for people with MS in Australia. One author (L. C.) organised data in an Excel spreadsheet by data type, original research question, and findings relevant to this study. The research team reviewed and categorised findings into housing and support needs and preferences. Further analysis added subcategories for home modifications, assistive technology, and support barriers. For accessibility, findings were summarised in a Microsoft PowerPoint document for the reference group. Feedback from the reference group was incorporated into the final results. The reference group guided the adaptation of findings to the Australian context and identified barriers to knowledge use over two sessions, in line with the KTA Action Cycle.

Results

Quantitative results

Dataset A

Participants

As depicted in Table 2, administrative data were summarised for 71 people with MS, the majority of whom were female (69%). Based on reported age ranges, participant age spanned 18–24 to 65–74 years, with the majority aged 45–54 (26%) or 55–64 (37%) years.

Housing needs and preferences

As seen in Table 2, of those who responded, participants listed their preferences as living alone (61%), in shared housing with others with disability (22%), or with a partner or family (18%). Most people required more than one bedroom, with the majority (52%) requiring two bedrooms and two bathrooms (56%). Participants could select primary reasons for moving from a list of nine set options. Based on responses from 24 participants, the most common choices were: current housing being unsuitable for their needs (n = 14), wanting to be more independent in the home (n = 9), and being unable to get the necessary support in their current home (n = 7). See Table 3 for all available options with response frequency. The majority of people (89%) were seeking a rental property in the same state as they currently lived. Although 95% had an NDIS plan, only 40% had SDA funding. Regarding funded occupancy, 37% were funded for shared (i.e. two or more residents) housing arrangements. Fifteen per cent of those who reported a preference for sole occupancy were instead funded to share with one (10%) or two (5%) other residents. Regarding support needs (Table 4), 42% of respondents reported needing support for organisation and staying safe. In terms of hours of support per day, 22% of respondents reported requiring less than 2 h of support per day, 19% required over 2 h per day, 17% required over 5 h per day, and 40% required over 8 h per day. For new home preferences, the most frequently endorsed housing and property features from a preset list of 28 (Table 5) were cooling, wheelchair accessibility, accessible features, broadband internet, and heating. Other disability-related considerations included ceiling hoists, lifts in buildings, and automated doors.

Table 3.Reasons for moving.

Response option	n	Proportion (%)
My current housing is not suitable for my needs	14	58
Would like to be more independent in my home	9	38
I cannot get the support I need in my current home	7	29
To live closer to family and friends	5	21
Lack of privacy, would like my own space	4	17
Location that enables me to be more active and connected in the local community	4	17
I am not happy with the support provided where I live	3	12
Live in a familiar location where I know my way around and know people	2	8
A place to spend time with my children	1	4

Note: response was options and participants could select multiple options, resulting in total responses being higher than respondent n.

Table 4.Participant support needs.

Characteristic	n	n = 71 (%)
Mobilisation	27
Manual wheelchair		12 (44%)
Power wheelchair		7 (26%)
Walk with assistance		6 (22%)
Walk without assistance		1 (3.7%)
Walking aid		1 (3.7%)
Unknown		44
Needs support organising and staying safe	30
Yes		30 (100%)
Unknown		41
Support hours per day	63
0		1 (1.6%)
Less than 2 h		14 (22%)
Over 2 h		12 (19%)
Over 5 h		11 (17%)
Over 8 h		25 (40%)
Unknown		8
Funded occupancy	41
1 resident		26 (63%)
2 residents		8 (20%)
3 residents		5 (12%)
4 residents		1 (2.4%)
5 residents		1 (2.4%)
Unknown		30

Table 5.Housing features and property type selected by housing seekers.

Housing feature	n (%)^A
Cooling	52 (73.24%)
Wheelchair accessible	49 (69.01%)
Accessible features	44 (61.97%)
Heating	44 (61.97%)
Outdoor area	43 (60.56%)
Built-in wardrobes	39 (54.93%)
Broadband internet available	38 (53.52%)
Ensuite	37 (52.11%)
Pets allowed	35 (49.3%)
Dishwasher	33 (46.48%)
Parking	30 (42.25%)
Ceiling hoist	26 (36.62%)
Lift in building	20 (28.17%)
Automated doors	19 (26.76%)
Fire sprinklers	16 (22.54%)
Intercom	16 (22.54%)
Solar hot water	12 (16.90%)
Solar panels	12 (16.90%)
Study	12 (16.90%)
Pay TV access	10 (14.08%)
Rumpus room	7 (9.86%)
Furnished home	4 (5.63%)
Gym	4 (5.63%)
Ducted vacuum system	3 (4.23%)
Indoor smoking allowed	2 (2.82%)
Indoor spa	2 (2.82%)
Alarm system	1 (1.41%)
Outdoor space required for service dog	1 (1.41%)

^A Ratio using n = 71 as the denominator.

Dataset B

A total of seven participants, six of whom were female, had HDT data extracted for this study (Table 6). Ages ranged from 48 to 62 years, with a median age of 57.5 years. Duration of hospital stay varied widely, ranging from 38 to 228 days. More than half had a physical or psychological comorbidity, and all were NDIS participants on discharge. Geographically, five people were from regional areas and two from a metropolitan region. At discharge, care needs had increased such that five participants now required a combination of paid and unpaid support, with hours of care needed ranging from 17.5 h to 217 h per week post discharge. Two participants were discharged to a private residence (house), two to a private residence with family (house), one to SDA (unit), while the discharge destination for the remaining two participants was not recorded by the hospital and was therefore not provided in the HDT data. Four participants required physical and cognitive support, ranging from minimal to total assistance. Allied health needs included nursing, occupational therapy and physiotherapy. Six people required equipment for discharge. For four people, loan equipment was made available on discharge, one of whom used NDIS funding to access this. Two people required home modifications including bathroom modifications and an access ramp. As shown in Table 6, answers were not provided for some participants on certain measures. Therefore, the support needs post discharge may be higher than indicated by this HDT data.

Table 6.Hospital discharge trajectory data for people with MS.

	Demographics (gender; age; relationship status; location)	Carer status	Comorbidities	Hospital experience (reason for admission; time spent in hospital)	Discharge support needs^A	Discharge destination	Support required	Loan equipment required
1	Female 57 Married Metro	Pre-admission: Live-in carer; Not co-dependent	No comorbidities specified	Influenza, relapse in MS symptoms 82 days	Physical: None specified	Not specified	Not specified	No
1	Female 57 Married Metro	Post-admission: Not specified	No comorbidities specified	Influenza, relapse in MS symptoms 82 days	Cognitive: None specified	Not specified	Not specified	No
2	Female 48 Single Regional	Pre-admission: Informal unpaid caregiver (brother)	Morbid obesity, hypertension, depression, chronic bilateral lower leg oedema	Septic shock and multiple organ failure 199 days	Physical: Eating ^E Grooming ^D Bathing ^B Dressing ^B ^– ^D Toileting ^B Transfers ^B Locomotion ^B Stairs ^B	Private residence (house)	Care Equipment Home modifications Allied health: OT, Nursing Support coordination	Yes NDIS funded = no
		Post-admission: Combination of paid/unpaid support (82.5 h)			Cognitive: Comprehension ^H Expression ^H Social interaction ^F Problem solving ^G Memory ^G
		Post-admission: Combination of paid/unpaid support (82.5 h)
3	Female 55 Married Regional	Pre-admission: Informal unpaid caregiver (husband)	Not stated	Fall on background of MS 40 days	Physical: Eating ^F Grooming ^F Bathing ^D Dressing ^C ^– ^E Toileting ^B ^– ^G Transfers ^E Locomotion ^C Stairs ^B	Private residence with family (house)	Care Equipment Allied health: OT, Nursing, Physiotherapy Support coordination	Yes NDIS funded = no
		Post-admission: Combination of paid and unpaid carer (husband) (17.5 h)			Cognitive: Comprehension ^F Expression ^H Social interaction ^H Problem solving ^D Memory ^D

4	Female 61 Married Metro	Pre-admission: Informal unpaid caregiver Post-admission: Combination of paid and unpaid support	Mental health problem	Functional decline 228 days	Physical: None specified	Private residence (house)	Care Equipment	Yes NDIS funded = yes
4	Female 61 Married Metro		Mental health problem	Functional decline 228 days	Cognitive: None specified	Private residence (house)	Support coordination	Yes NDIS funded = yes
5	Female 57 Married Regional	Pre-admission: No caregiver needed	Cardiac disease, renal failure	Facial droop and blurred speech 52 days	Physical: None specified	Private residence with family (house)	Care Equipment	Yes NDIS funded = no
		Post-admission: Combination of paid/unpaid support (husband and daughter) (17.5 h)			Cognitive: None specified		Allied health: OT, Nursing, Physiotherapy
					Cognitive: None specified		Support coordination
6	Male 60 Single Regional	Pre-admission: Formal paid care	Not stated	Not stated 38 days	Physical: Eating ^E Grooming ^E Bathing ^C Dressing ^C Toileting ^B Transfers ^B Locomotion ^F Stairs ^B	SDA (apartment)	Care Equipment Allied health: Nursing Support coordination	No
		Post-admission: Formal paid care, at times from multiple care staff simultaneously (217 h)			Cognitive: Comprehension ^F Expression ^F Social interaction ^H Problem solving ^C Memory ^C

7	Female 62 Defacto Regional	Pre-admission: Informal unpaid caregiver (partner)	Hypertension	Exacerbation of symptoms of MS 98 days	Physical: Eating ^H Grooming ^F Bathing ^C Dressing ^B ^, ^C Toileting ^B ^– ^H Transfers ^B Locomotion ^B Stairs ^B	Not answered	Care Equipment Home modifications	No
7	Female 62 Defacto Regional	Post-admission: Not stated	Hypertension	Exacerbation of symptoms of MS 98 days	Cognitive: Comprehension ^H Expression ^H Social interaction ^H Problem solving ^H Memory ^H	Not answered	Care Equipment Home modifications	No

^A Support requirements based on the Functional Independence Measure (FIM).

^B Total assistance.

^C Maximal assistance.

^D Moderate assistance.

^E Minimal assistance.

^F Supervision.

^G Modified independence.

^H Complete independence.

Qualitative results

Dataset C

Themes were identified relating to people’s needs and preferences, and barriers to quality support. The overarching theme relating to needs and preferences was ‘choice and control’ and included subthemes such as ‘leading my supports’, ‘treating me like a person’, ‘knowing me and tailoring supports’, and ‘listening to me’. Another key theme focused on support workers’ ‘skills and attributes’, encompassing subthemes ‘prior experience’, ‘personality over qualifications’, ‘wanting to do the role’, and ‘willingness to learn’. The final major theme relating to needs and preferences centred on the ‘support relationship’, covering subthemes of ‘rapport and boundaries’ and ‘communicating honestly and openly’. ‘Barriers to quality support’ was the only overarching theme identified relating to barriers. Within this theme, subthemes included ‘building a quality support team’, ‘doing the role for the wrong reasons’, ‘support workers knowing best’, ‘lack of quality training available’ and ‘issues with choice and control’.

Needs and preferences

People with MS reported a strong preference for ‘choice and control’ in their support provision, emphasising the need for support workers willing to learn about them and their fluctuating needs. Participants reported wanting to ‘lead my supports’, describing increased stress and lack of choice when agencies provided staff. They preferred to choose, hire, fire, and instruct workers. Participants stressed the importance of being ‘treated like a person’, with respect and warmth, fostering a professional yet personal relationship. Due to the variable nature of MS, participants valued workers who could ‘know me and tailor supports to my needs’, provide individualised care, be perceptive to immediate needs, and adapt accordingly. They highlighted the importance of ‘listening to me’, avoiding assumptions, and respecting them as the experts in their care.

I’ve got a variable condition that changes from day to day so they need to pick up on … you know, whether or not I’m strong enough to actually do something or that I kind of can do something… (Kelly, Person with MS)

In terms of support worker ‘skills and attributes’, participants preferred support workers who are honest, reliable and punctual; have a good work ethic; have attention to detail; and can take initiative. Due to the high support needs experienced by some participants, they expressed a preference for people who have ‘prior experience’ with providing personal care either professionally or as a carer for a relative. People emphasised the importance of ‘personality over qualifications’. Compatibility and attitudes towards disability were deemed essential, and participants felt that although practical competencies can be taught, personality cannot be. Participants wanted their support workers to be doing the job because ‘they want to’, and convey a ‘willingness to learn’ about them, their support needs, and the variability of their disability. Participants described the ideal ‘relationship’ as being one where there is ‘rapport and maintenance of boundaries’. This unique relationship that encompasses elements of friendship and professionalism worked when both sides ‘communicate honestly and openly’.

Barriers

People described difficulties in ‘building a quality support team’ including limited availability of quality staff, the effort involved in finding and training new staff, staff turnover, unreliable agencies, and unreliable workers. Some support workers were described as doing ‘the role for the wrong reasons’ such as being financially motivated and unwilling to provide the level of support required. Problems arose when ‘experienced support workers thought they knew best’ and ignored or argued against the preferences of the person with MS: ‘…When we went to put the sling on she starts grabbing it and says “oh I work in aged care, I know how to do this” and she was told “well that’s not how we do it here” … In some ways it’s good to get someone with no experience because if they’re keen and they’re responsible they will just listen and they learn’ (Lesley, Person with MS).

People felt that there is a ‘lack of quality training available’ and that there is a large gap between what people are trained in and the skills they need to complete the role effectively. People with MS identified the minimal competencies service providers should fund, such as personal care skills including using slings, working with stomas and catheters, providing bowel care, and, importantly, communication. To meet the shortfall, participants used their own funding to provide support workers with on-the-job training: ‘I teach them how to use a lifter and roll someone in bed and how to handle someone in a wheelchair. I teach them really basic stuff and in the end – so, their hours will blow out. So, they’ll do 4 hours instead of 3 hours with me and that’s what they’re charging me. So, I’m paying – or NDIS is paying – for them to be trained. Because they aren’t trained properly wherever they’ve come from’ (Lauren, Person with MS).

While the implementation of the NDIS in Australia is designed to facilitate greater choice and control for individuals with disability, two participants described problems such as providers prioritising participants with larger funding packages, and workers maintaining fixed attitudes from previous funding systems that did not place the person with disability in control of their supports. Three participants described ‘issues with choice and control’ in shared housing models where they did not feel prioritised, could not choose staff, did not feel safe to make complaints, and encountered rules that prohibited choice.

Dataset D

In this mixed method case study, Donna (pseudonym) shares important insights into the challenges of living with MS and the lived experience of moving from shared disability accommodation into individualised SDA (Table 7a–c). Donna is in her 50s and single. At the time of her first interview, Donna had been living with MS for over 20 years. Her story begins with pre-move reflections on her living environment (shared disability accommodation) and describes her post-move experience up to 1 year post-move.

Table 7.(a) Pre-move experience: ‘Difficulties with congregate setting’. (b) Post-move experience: ‘I’m feeling valued’. (c) Experience at 1 year post-move: ‘Being able to be quite independent’.

Theme Subthemes	Donna’s perspective
(a)
History MS Living situation	MS for more than 20 years and required more help as disease progressed in the past 15 years Moved from living alone in own home to shared accommodation
Motivation to move from shared accommodation Changing support needs	‘To be able to live in housing that’s more suitable.’ ‘Now I need fairly full-on care. Again, it’s about getting up and showering and getting ready for work. And then – and going to bed. And meal preparation. Also, where I am [shared accommodation], there’s a – you know, they prepare meals for everybody. They have two choices of – of meal, of any lunch and dinner – but I’m needing more and more care because now I need to be hoisted, I can’t transfer anymore.’
Negative aspects of shared accommodation Shared facilities Congregate living Loss of community and connections Satisfaction	‘What I don’t like about that is …’ ‘I’m – I’m required to share [bathroom, kitchen and living facilities] with somebody not known to me, not of my choice and for six and a half years.’ ‘I also have difficulties with the congregate setting. I didn’t sign up to be bunched – bunched together with other people with disabilities and that can be confronting and depressing day after day.’ ‘So, one of the other biggest disruptive things about moving … is that it’s completely the other side of the city to where I was living. So, loss of community, loss of friends, loss of the regular stuff that you do in one place. For all the connections, like doctors, post office, chemist, all of those kinds of things, get lost over time when you move away.’ ‘Very unsatisfied.’
Reasons for wanting to move	‘A place to spend time on my own.’ ‘Location that enables me to be more active and connected in the local community.’ ‘To live in a familiar location where I know my way around and I know people.’ ‘I would like to be more independent in my home.’ ‘Lack of privacy, I would like my own space.’ ‘I’m not happy with support provided where I live.’ ‘My current living arrangements are not suitable for my needs: it’s about location, it’s about service provision choices … and also the congregate setting.’
(b)
Current support	‘Two carers who come in the morning together, because we need to do hoisting and things – so I have one person for two hours and the other person for three. Then in the evenings, I have somebody come back for two hours. And in between times, I use the concierge service. So that’s what I use in between times. Not just overnight, but all the in between times as well.’
Change in functioning	Physical condition has become progressively worse, which impacts effort required to socialise.
Changes in living Routine Feeling valued Being involved	‘Oh, pretty much everything. Everything’s more individual. I'm not waiting for agreement or permission from people to do things.’ ‘I guess maybe things are a little bit more routine. A lot more predictable in the mornings. So I’m much more comfortable with things in my morning get up routine. It happens at a regular time and with regular people. I only have three people coming in to do personal care. So it’s not overwhelming and I'm not waiting for my turn.’ ‘I’m feeling valued. Rather than just a job or a chore to be done. Which is very much how I felt at [pre-move accommodation]. Because that whole experience makes you feel a bit commoditised. Whereas now I feel like I'm – these people who are helping me get ready, are invested in the fact that I feel ready to go out. And it changes your outlook on facing the day.’ ‘I’m not doing a lot, but I'm certainly being involved in it when others are doing it … all of the meals and everything are of my choice. That's the big change. Whereas before it was the, the regular menu that had two choices per meal so just working within what the limited choices were. Whereas now I shop online, get groceries delivered every – 3 weeks or so. I’ve got fresh salad things when I feel like it and so on.’
(c)
The year in review Being independent Moving has been a good thing Being more myself Less unhappiness	‘I guess continuing to work on settling in and working from my new home.’ ‘And having moved and being able to be quite independent.’ ‘I wouldn’t have been able to had I stayed where I was and then the moving has absolutely on the whole been a good thing.’ ‘it’s certainly helped me be more myself, more like the person I want to be and less drawn into the issues of unhappiness.’
Better living environment Less expensive and time consuming to do things Better amenities Better accommodation and location Opportunities to connect and be the real me	‘I’m so much better off being here than what I was.’ ‘And it’s less expensive and time consuming to go and do the things because I don’t have to pay a $50 taxi fare …’ ‘I just go and get a bus on a bus route where this bus is like every 15 min … And it connects me with two movie theatres, two supermarkets. [Everything is] easier to get to, easier to participate in that regard.’ ‘The accommodation is fairly good. I wouldn’t say it’s perfect. But the location is very good. Again, not perfect, but very good.’ ‘So those things together have meant a significant improvement in my opportunities and ability to connect and to be much more the real me.’
Deterioration in physical condition affects participation and socialising	Physical condition has become progressively worse, which impacts confidence to socialise.
Impact of having carers on expressing preferences and being your true self	‘It’s interesting because when you’ve got the carers, you can’t express all those things. I absorb a lot of the sharp edges because there’s not – there’s not a master/servant thing. … Then sometimes you have to give up being so particular – does it really matter which way this tomato is sliced or chopped. … Yeah, concessions and tolerance. Though sometimes you can’t be your true self. For me it’s about understanding what is important and I would rather have a comfortable and more than tolerable relationship with these people that come into my house daily.’

New living environment: Donna was interviewed again 7 months after she had moved into individualised Specialist Disability Accommodation (SDA). She had moved into one of a small number of SDA apartments (e.g. 6–12) peppered throughout a larger private residential development (e.g. 70 apartments) located near accessible public transport and other community amenities. The apartments incorporate accessible design as they are tailored to the needs of people with disability by incorporating appropriate technology and design features. This arrangement includes one additional apartment to be used as a base for 24-h onsite support staff, thus enabling people with high support needs to live in their own apartments, while also being co-located to access on-site support. At that time, Donna described herself as having two sources of income, her Disability Support Pension and what she earns with her self-employed activities.

Donna’s community integration score dropped marginally from pre- to post-move (from 24.33 to 23.67) and had increased beyond both pre- and post-move measures at 1 year (26.33), rising from 0.6 to 1 standard deviation (s.d.) above the normative mean for her age. The change in the home integration score reflected positive change from pre- to post-move (from 5.33 to 6.67). At 1 year the increase (9.33) was consistent with reliable change and a move from 0.9 s.d. less than the normative mean to 0.5 s.d. more than the normative mean for her age. Donna’s pre-move to one-year post-move change was consistent with reliable measured change on the CIQ-R Community Integration and Home Integration subscales. In her pre-move interview, Donna described the ‘negative aspects of shared accommodation’ including her difficulties with ‘congregate living’ and ‘loss of community connections’, which underscored ‘reasons for wanting to move’. Following her move to individualised SDA, Donna commented on ‘feeling valued’, exercising ‘choice’, and ‘being able to be quite independent’. Donna is now experiencing a ‘better living environment’ and experiences ‘less unhappiness’. Overall, Donna’s experience and outcome support the premise that moving away from congregated housing to individualised living arrangements can result in better outcomes for people with disability (Oliver et al. 2020; Douglas et al. 2023), including those who have disability due to progressive disorders.

Integration and synthesis

We amalgamated the qualitative results retrieved from Datasets C (n = 5) and D (n = 1) and quantitative results from Datasets A (n = 71), B (n = 7) and D (n = 1) to synthesise knowledge in line with the KTA framework (Graham and Tetroe 2010). All datasets were integrated with reference group perspectives. Reference group members highlighted a need to examine the design and availability of housing and supports for people with MS, particularly those living in regional areas. They also emphasised the benefits of early planning on diagnosis to reduce the need for major home modifications as the disease advanced. These points contributed to data generated through Datasets A, B, and D, which highlighted the need to further examine preferred living arrangements and the importance of residing in close proximity to familiar communities.

Focusing on the experiences with support work services, Dataset C emphasised the need for improved training. The reference group endorsed the importance of education as an area for improvement; however, they emphasised the need for NDIA staff to be upskilled. Specifically, they noted that NDIA planners require a deeper understanding of the progressive nature of MS. Further, the reference group identified systemic barriers, such as delayed, inconsistent, or inadequate funding. The reference group expressed the belief that increased awareness among NDIA staff about the rapid physical changes that can occur with MS could lead to timely funding allocations. Currently, a person’s physical condition may deteriorate while waiting for funding, rendering the original requested amount insufficient.

The discussion provides an overview of the knowledge generated by this study and directions for future research informed by these findings.

Discussion

Drawing on the Knowledge Creation cycle of the KTA (i.e. knowledge inquiry and synthesis; Graham et al. 2006) and components of the Action Cycle (i.e. problem identification and adaptation to local context), this study synthesised existing literature and local data to identify key housing and support needs and preferences of people with MS living in Australia.

Housing needs and preferences

Consistent with previous studies (Flensner et al. 2011; Summers et al. 2012; Bishop et al. 2013; Çakır andTosun 2022), cooling, wheelchair accessibility, and other accessibility features were frequently cited as necessary. Some also required ceiling hoists, automated doors, and building lifts. Given the variability in how MS affects functional status across individuals and over time, it is unsurprising that there was not a consistent need for each accessibility feature. Broadband internet was commonly preferred, as people with MS reportedly use the internet more than the general population for seeking MS-specific information and connecting to online communities (Synnot et al. 2016; Kantor et al. 2018). Further, internet connectivity supports telehealth services (Chen et al. 2022) and work-from-home arrangements (De Dios Perez et al. 2024). People generally sought housing in their current location, with most preferring to live alone. Maintaining access to the local community and staying close to family and friends were important factors. Dyck (1995) highlighted that people with MS prefer familiar surroundings and proximity to social support networks over relocating. Tabuteau-Harrison et al. (2016) noted the importance of social group memberships in adjusting to living with MS. However, our findings reveal that changing accessibility requirements may make existing housing inadequate, prompting individuals to consider how to maintain their independence.

Maintaining independence at home is a common theme in various studies (Bishop et al. 2013; Roessler et al. 2013; Sheppard-Jones et al. 2013). Donna (Dataset D) experienced improved independence and quality of life when she moved into individualised housing. However, 22% of the Dataset A sample sought shared housing with others with disability, though this is possibly due to funding limitations or the nature of the Housing Hub website, where people may create profiles based on their level of funding or what they perceive as possible versus their broader goals and aspirations. Roessler et al. (2013) found that some participants lacked the confidence to live alone as their condition progressed, affecting their self-efficacy. The Liveable Housing Design Guidelines guide home design that can meet the changing needs of a home’s occupants over their lifetime and is more cost-effective to adapt if unanticipated changes occur (Livable Housing Australia 2017). People with universally designed homes (Çakır andTosun 2022) may not need alternative housing as their functional impairments increase, as their current homes can be better adapted to their needs. It is also possible that some people prefer shared housing with others who have a shared understanding of living with disability. A study with people with cognitive impairment found that some derived satisfaction from living alone while others felt lonely and isolated (Fisher et al. 2021). Future research should survey people with MS to establish their preferences for living alone, with family, or in shared housing with others with disability. Ultimately, decisions about home and living arrangements should be based on the individual’s needs and preferences.

Support needs and preferences

Hospital discharge data for seven people (Dataset B) highlighted the high and complex support needs of some people with MS. At least half of the people in Dataset B required high support for eating, dressing, locomotion, and using the bathroom. This included support for physically transferring to the toilet, bladder and bowel management, and having a shower. In research conducted by Cowan et al. (2018), despite people with MS wanting to maintain independence, functional impairments compromised this preference. Participants in Dataset B typically required equipment, a combination of paid and unpaid supports, and allied health supports. Maguire et al. (2023) found those with progressive MS placed greater emphasis on a need for assistive technology and disability supports than those with RRMS, likely due to higher levels of disability experienced by people with progressive forms of MS. Results from a 2009 Australian Bureau of Statistics (ABS) survey support this need, with more than 66% of people with MS requiring ‘assistance with at least one of the ten everyday activities’ and 46% requiring assistance with mobility (Australian Bureau of Statistics (ABS) 2012). Dataset B revealed that most participants were hospitalised due to health or functional decline that resulted in greater support needs. This, in line with the dynamic and often rapidly changing course of MS, highlights the need for a funding scheme and supports that can be proactive and able to respond quickly when a person experiences functional decline. If health and disability support needs can be addressed proactively, hospitalisations may be avoided or shortened.

Systemic barriers

The reference group identified shortcomings in the NDIS funding system, including prolonged processes and wait times, and its focus on current functional status rather than anticipation of increased support needs due to disease progression. If an NDIS participant’s support needs increase, they must apply to the NDIA to review their funding (NDIS 2023c). If accepted, they must attend a meeting with an NDIA representative and provide evidence from an allied health professional. Each step of this process can take several weeks or even months to complete (Cubis et al. 2022; NDIS 2023d), with the entire process often extending to over 162 days. If further disease progression occurs during this time, the process must be repeated, risking an ongoing mismatch between current needs and received funding. There is limited information on international proactive and responsive disability funding schemes for progressive neurological diseases. The Rapid Response Adaptations Programme in Wales provides home adaptations within 15 days following a health professional’s referral, aiding timely hospital discharges (Multiple Sclerosis Society 2014; Welsh Government n.d.), but it does not cover major home modifications or increased nursing and disability support needs.

Planning an intervention

We aim to utilise insights, experience, and expertise gained through the KTA process (Graham et al. 2006; Graham and Tetroe 2010) to inform, design, and implement an intervention. Through a collaborative co-design process, we will engage stakeholders to further interrogate the two synthesised themes: (1) housing occupancy, location, and features, and (2) support needs and systemic barriers. Our objective is to develop an intervention that incorporates input from people with lived experience and has the potential to shape policy to improve home and living outcomes for people with MS.

Limitations

We utilised data from four projects with different aims, applying secondary data analysis (Johnston 2014) principles to isolate MS-specific evidence on housing and support. De-identified data may include individuals participating in multiple studies. Both Datasets A and B had incomplete data across some variables, with a large range of available data (n = 16–69 per variable) in Dataset A. Only six qualitative transcripts were available, potentially limiting the emergence of additional themes related to housing and support needs and preferences. Despite these limitations, this paper aimed to synthesise knowledge from various sources and the published literature using the KTA framework (Graham et al. 2006; Graham and Tetroe 2010). The findings align with and extend previous studies on housing and home modifications (Sheppard-Jones et al. 2013; Bishop et al. 2015). The data did not fully cover assistive technology needs for people with MS. While most research on assistive technology for MS focuses on mobility aids and home modifications (Patten et al. 2012; Bishop et al. 2015), recent advances suggest further research opportunities on reducing the need for human caregivers (DeAngelis et al. 2021; Korchut et al. 2022). Additionally, this study did not extensively address factors beyond built design or disability supports, such as ambivalence towards disability supports (Squires et al. 2019), mood, social isolation (Tabuteau-Harrison et al. 2016), and community amenities, which are crucial for housing and support planning.

Implications

Our synthesis of MS-specific literature, combined with data from Datasets A–D and insights from our reference group, indicates that people with MS require a range of individualised housing models, supports, equipment, and assistive technology to live safely and independently. Sudden changes in functioning (Squires et al. 2019) necessitate quick implementation of increased supports and assistive technology. Therefore, funding allocations should address immediate needs and include contingency plans for unexpected changes. Housing should be designed for future accessibility (e.g. wider doors, level entry), with the responsibility for this potentially lying, in part, with funding and housing bodies and, in part, with allied health professionals educating people on potential future accessibility needs. As NDIA representatives determine a person’s funding, they need a sound understanding of MS (Graham and Greenland 2022).

Further research, guided by the KTA Action Cycle, is warranted on the basis of this study’s findings. People with MS prefer choice and control in their housing and supports, and they seek support workers who treat them with dignity and respect and can provide flexible and responsive services. However, their actual experiences often involve high staff turnover and inadequate training. Additionally, despite preferences for living alone or with family, some are only funded for group home settings. These barriers are likely influenced by local factors such as culture, policy, and training. Consequently, the findings call for further investigation and intervention using the KTA framework.

Future research

The study has revealed key information and identified gaps such as preferences for living alone versus with others and the potential of assistive technology in maintaining independence. Future research should involve a broader reference group, including people with MS, their families, researchers, clinicians, and NDIA staff, to translate this knowledge into action. Following the KTA framework (Graham and Tetroe 2010), future steps include assessing barriers to using this knowledge, co-designing interventions with stakeholders, and implementing, monitoring, and evaluating these interventions for sustained change. Given the KTA framework does not prescribe methodology, future interventions should follow guidance for developing complex healthcare interventions (O’Cathain et al. 2019), ensuring involvement in decision making from people with MS and their close others (i.e. family and friends) throughout the process.

Data availability

The data that support this study cannot be publicly shared due to ethical or privacy reasons and may be shared upon reasonable request to the corresponding author if appropriate.

Conflicts of interest

The authors declare no conflicts of interest.

Declaration of funding

This work was supported by MS Australia (grant number 22-168).

Ethics standard

The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committees on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008.

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