Unpacking how trust, communication and flow interact to sustain quality relationships between disabled people, family and support workers: a realist qualitative study

Abstract

Purpose

Many disabled people require support workers to complete personal care, daily tasks and participate in life roles. Due to the intimate nature of community disability support in domestic environments, understanding what facilitates positive relationships is paramount. We examined the intricate interplay of context and mechanisms that drive positive relationship outcomes for disabled people, their family members and support workers.

Methods

A realist-informed, participatory methodology involving three participant groups: disabled people, family members, and disability support workers.

Results

Sixteen participants participated in two workshops per group (5 disabled people, 5 family members, and 6 disability support workers). All three participant groups prioritised three key generative mechanism processes involved in positive relationship outcomes: (1) having clear communication, (2) building trust, and (3) developing a sense of flow. We describe how each mechanism manifested in a unique way for each group, and also how the activation of each mechanism was influenced by a dynamic resources/tensions balance specific to each group.

Conclusion

We describe the interaction between three mechanism processes involved in triadic relationships between disabled people, family members, and support workers. Attention is now required to explore strategies to negotiate the resource/tension balance particular to each group.

IMPLICATIONS FOR REHABILITATION

• Clear communication, building trust, and developing flow are crucial mechanisms necessary for positive and sustainable relationships between disabled people, family members, and support workers.

• However, we need to consider the intricate interplay of these mechanisms within triadic relationships between disabled people, family members, and support workers when enacting strategies to support sustainable relationships.

• By understanding the specific ways these mechanisms are activated differently for disabled people, family, and support workers, rehabilitation professionals can better tailor community care processes.

• This will promote greater efficacy of disability support systems and inform more effective, strategic distribution of resources.

Introduction

In Aotearoa New Zealand, 24% of people live with disability, with the prevalence greater in Māori (the indigenous people of Aotearoa New Zealand) (32%) than non-Māori people (68%) [1]. This figure is increasing due to population growth, medical advances, increased survival rates following injury, and ageing populations [2]. Many disabled people need support workers to help them participate in their communities, exercise autonomy, and live fulfilling lives [3,4]. Furthermore, positive community support worker-disabled people relationships can reduce anxiety and the likelihood of disabled people developing secondary health complications [5,6]. Given the high number of disabled people and family impacted, strong and sustainable support worker relationships are necessary to achieve positive experiences for all within the triad.

The disability support worker sector is currently in crisis. The number of support workers is decreasing because they report being undervalued, prone to burnout, and lacking career pathways [7,8]. The disability support worker sector is also complex, involving a range of different job roles, work environments, funding arrangements, and diverse stakeholders. Support workers are often employed to complete wide-ranging tasks, from personal care (grooming, mobilising, domestic tasks) to helping with activities of daily living and supporting disabled people to participate in community roles. Furthermore, support workers often work in changing and dynamic environments, from domestic houses and community locations to residential facilities. As such, having support workers in a domestic environment affects not only the support worker and the disabled person but often family members [9–11]. There are also different funding and employment arrangements for support workers, from being directly employed by a client to working for an agency with various clients. The consequence of these complex influences is that multiple stakeholders, including funders, support worker companies, support workers, disabled people, and families, can have different ideas regarding the intended role, place, and purpose of the support workers [3,6,12].

A growing body of research focuses on unpacking this complexity and understanding factors influencing the quality of community support workers. Topping et al. have worked to develop an integrated understanding of quality support grounded in the lived experience of people with acquired neurological disability, close others (i.e., family, friends, partners), and support workers [3,13–15]. Topping et al. have reported that while disability support worker relationships manifest slightly differently for various stakeholders, broad patterns unpinning success are apparent. For example, they recommend that the autonomy and ability of the disabled person to exercise choice and control be prioritised [14], that the context surrounding each person’s unique circumstances is respected [15], and that the various stakeholders within relationships work constructively together [13]. These patterns have also been reported in other research examining factors that contribute to quality care for disabled people [12,16,17]. Although research is beginning to unpack the complexities surrounding quality support worker relationships, there is still a need to develop a deeper understanding of the mechanisms underpinning what contributes to positive support worker relationships from the various views of different stakeholders.

To address these areas, our study used a realist-informed, participatory methodology [18,19] to understand “what works” for disabled people, family and disability support workers in community settings. The key aim of this study was to establish and engage three participant groups (disabled people, family of disabled people, and disability support workers) and explore what context and mechanism combinations might influence different outcomes for different groups. We also sought to understand whether different groups might highlight specific resources (and identify particular tensions) facilitating (or impeding) sustainable, positive relationships between support workers, disabled people, and family.

Methods

Using a realist-informed, participatory inquiry enabled us to develop an explanatory framework articulating what works, for whom, why, and how [18,20]. Realist inquiry is appropriate for researching disability issues as it prioritises the influence of context and explores underlying mechanisms that can explain how and why specific outcomes might occur in different circumstances [21]. More broadly, realist inquiry provides a heuristic framework to help explain the complexity and can contribute to further cycles of enquiry and ongoing conceptual development [20].

Realist analysis is conducted in reference to “programme theories”, which articulate the ideas and assumptions underpinning how, why, and in what circumstances interventions work [21] (i.e., in this study – how, why, and in what circumstances positive support worker relationships work). The details of these programme theories are expressed as Context-Mechanism-Outcome (CMO) configurations [20]. While distinguishing between what a context is and what a mechanism is can be difficult [22], context is essentially the environmental elements within the background of a complex situations such as support worker relationships [20]. Mechanisms are the underlying processes that operate in certain contexts to generate specific outcomes. Mechanisms are sensitive to variation in context, and are more likely to generate certain outcomes in more conducive contexts. Dalkin et al. [21] have likened the mechanism process to being like a dimmer switch, whereby mechanisms are not turned on and off, but their “activation operates along a continuum similar to the light created by a ‘dimmer switch’, where intensity varies in line with an ever evolving context”(p. 6).

Our realist inquiry was conducted within a wider co-design, participatory approach [23,24], whereby we actively partnered with participants. This enabled participants to actively shape data analysis and interpretation continuously and constructively across time. The specific methods used involved a writing exercise and two interactive workshops for each participant group (see below). A writing exercise and two workshops allowed participants to reflect critically and share more nuanced information about their experiences [24]. This study received ethical approval from the New Zealand Health and Disability Ethics Committee, reference: (2022 EXP 13063).

Participants

To be eligible for this study, all participants were required to be 18 years or older, able to communicate in English, reside in the Canterbury region, and communicate their ideas autonomously through various mediums, if communication skills were limited. Eligible disabled people were those who self-identified as having a learning, psychological, or physical impairment or disability and receiving care from in-home community disability support workers. Family member of disabled persons were defined as a family member or significant other of a disabled person who received in-home community disability support workers. Inclusion criteria for support workers were to currently work as an in-home community disability support worker, either privately or through an agency.

Recruitment

Recruitment for each participant group was conducted via the research team’s personal networks, contacting local disability organisations and community support worker providers, and via social media channels. Potential participants were directed to contact a research assistant (JJ) via phone or email per the invitation. JJ explained the study protocol, answered any questions, and sent an information sheet to participants. JJ then followed up with potential participants one week after contact to ascertain their interest in participating. Interested participants indicated their consent to participate and were sent a writing exercise template (or offered an option to liaise with the RA to organise a time to record a short oral vignette). Participants were also invited to indicate their availability for workshops via a Doodle Poll.

Data collection

Data was collected via a short writing activity, and two face-to-face workshops for each participant group (See Figure 1). Demographic information was also collected, including personal, health, and employment information, and living situation. The writing activity required participants to contribute two short narratives (written or oral) about critical incidents within their experiences of community support worker relationships: one about a situation that worked well and one about a situation that was not positive. Concepts from this exercise were then presented and used to stimulate discussion in the workshops. Workshops were facilitated by JB, JJ, and RM, all of whom are experienced in qualitative research methods, and RM, who is experienced in realist research approaches. The first round of workshops were conducted in December 2022, during which a flexible interview guide (informed by literature in the field and the written exercise) was used to prompt discussion and encourage participants to tell the stories in their own words. In the second round of workshops, conducted in March 2023, participants were invited to respond, discuss and prioritise factors framed from discussions during the first workshops. Our rationale for keeping the groups separate was to allow (we hoped) participants to freely express honest reflections which they may not have felt comfortable doing in the presence of other groups (e.g., the sometimes delicate area of family members expressing the true impact of having support workers in domestic spaces). All workshops were audio recorded and written notes taken. An independent professional who had signed a confidentiality contract transcribed all audio data from the workshops, from which all identifying information (i.e., names and identifying characteristics) were then removed.

Figure 1.

Overview of data collection and analysis process.

Data analysis

The entire team read and re-read transcripts from the first round of workshops to gain a sense of the whole. Second, inductive line-by-line coding was conducted independently by two team members (JB, who used NVivo Version 1.0, and JJ, who used Microsoft Word). The data were then deductively categorised into the tentative CMO configurations using the following headings: (a) contextual factors, (b) mechanisms, and (d) outcomes specific to each participant group. Third, the entire research team met and used manual diagramming to compare and debate each tentative CMO configuration, including how each participant group expressed each CMO. This resulted in a total of eight initial draft CMO configurations (see Table 1). These draft CMO configurations, and how they applied to each participant group, provided the framework we presented for discussion at the second round of workshops.

Table 1.

Overview of data refinement.

Eight initial draft CMO configurations	Final three CMO configurations
Communication: Participants felt able to share and access information and experiences.	CMO#1: Communication:
Flexibility and Scope: Participants felt able to discuss, negotiate and understand everyone’s particular needs and responsibilities.
Expertise, Skill and Training: Having knowledge and ability to carry out physical and personal care, solve problems and handle equipment safely and smoothly.
Trust: Being certain of support, care, ease and safety	CMO#2: The Trust Factor.
Rapport and Relationship: Getting on well together.
Responsibility and Accountability: Having access to a known hierarchy and clarity on who is responsible for ensuring the care is completed or not
A Job Well Done: Care able to be completed satisfactorily with the resources and knowledge required so everyone can get there on with their day.	CMO#3: A sense of sustained flow.
Holistic Approach and Contextual Knowledge: Having consistent, workable expectations where everyone’s individual needs and context are known.

In the three second-round workshops, analysis began during each workshop, when researchers presented the eight draft CMO configurations. Participants were invited to discuss and debate which were deemed a priority and necessary for positive support worker relationships to flourish. We deliberately embraced an iterative, dialogue-based analysis approach to challenge conventional power inequalities in research and to build relational resilience [25,26]. Although a research team member kept track of time and ensured each draft CMO configuration received attention, the group dialogue was practised through respectful interaction, e.g., listening, sharing, and acknowledging others’ points of view. Iteration was practised by applying our dialogue’s outcome, being open to adjustments based on ongoing reciprocal feedback, and valuing different perspectives. This practice of dialogue and iteration enabled us to co-create collective knowledge [25], and refine and consolidate the eight draft CMO configurations identified from our analysis in Workshop One into the top three CMO configurations specific to each participant group. Following the second workshop, the research team met several times to synthesise the three final CMO configurations, which incorporated each group’s priority CMO configurations. The research team then created three matrices, which enabled us to articulate clearly how each CMO configuration manifested for each participant group, including the particular resources and tensions applied to each group (see Tables 2–4). Importantly, during our iterative analysis, we interpreted that while the final three CMO configuration were interrelated and had considerable overlap in terms of content, we felt confident that each CMO configuration still had distinct properties that warranted their separation.

Table 2.

How communication CMO configuration manifested for each participant group.

CMO#1 Communication	Contexts	Resources	Mechanisms	Outcomes	Tensions
Everyone’s on the same page: The foundation on which everything else is built	If there is space and opportunity for discussion and negotiation	A mix of SW company support, provision of trained SW workforce, and respect for boundaries	This prompts space for clear and open (i.e., good) communication, (turned up and down in response to tension/resource balance).	Participants feel expectations and boundaries of each role are understood	When people read/interpret “the page” a little differently
Disabled person	There is space and opportunity for me to comfortably discuss my personal care, boundaries, expectations.	Having a SW company who can provide me with competent/able SWs practical and admin support, and matching SWs to my needs.	Having SWs with who I feel comfortable discussing what care is required and outlining my boundaries.	I feel in control of care that’s required, I feel reciprocal respect, that SWs knows the boundaries and that I have flexibility within limits (e.g., different food or bedtime).	When I feel my SW and I have different boundaries, or when my boundaries are crossed (e.g., SWs being over-involved in personal life, or over-sharing).
Family members	There is space and opportunity for me to discuss boundaries, expectations of domestic space and our family life.	Having a reliable, responsive and accessible SW company. Having access to competent/able SWs who can “read the room”.	Having SWs who can understand the wider context, who take our wider family in account. Having a SW who understands that their “workplace” is our home.	I feel the boundaries of our domestic space of our lives are understood, and that that our home environment is respected	I’m frustrated when the “big stuff” is shared between SW and my loved one. I’m concerned when my loved one’s care aren’t done properly; or if I see no rapport between DP and SW.
Support workers	There is space and opportunity for me to discuss required tasks, responsibilities, and expectations.	Having a reliable SW company which provides me with practical, professional and admin support. Having the provision of clear job information (required tasks etc). Being able to express, discuss and learn from my experiences at work.	Having clear communication of the care, boundaries, and expectations required of my job.	Feel able to know my client and have clarity of expectations. I feel I have everything I need to do my job. I feel helpful, supported, and valued.	It feels dangerous and sets an unhelpful precedent when I’m asked to (or another SW has already) cross the boundaries.

Table 3.

How trust CMO configuration manifested for each participant group.

CMO#2 The Trust Factor	Contexts	Resources	Mechanisms	Outcomes	Tensions
That I (or my loved one) am/is in safe hands…	If there’s an availability of a reliable and competent workforce	A mix of SW company support, provision of trained workforce, equipment and respite funding	This prompts increased feeling of sustainable, reciprocal sense of trust (turned up and down in response to tension/resource balance).	Participants felt increased safety, freedom and flexibility	Having limited access to good, component SWs and or company support.
Disabled person	I feel I have access to SWs who can complete my care and tasks in a competent, confidential manner.	I have access to funding, a SW company who knows my needs, and an adequate supply of competent SWs.	I have familiar SWs (and a SW company) who I can trust, who know my care and can complete them in a competent safe manner.	I feel my routine, privacy and confidentiality is respected. I feel my care and tasks are completed safely. I feel I can have flexibility with my routine.	If I feel my SWs can’t complete my care safely and competently. If I can’t access/find any familiar (or any competent) SWs.
Family members	I feel I have access to SWs who can complete my loved one’s tasks in a competent, confidential manner.	I have a SW company who knows my loved one’s needs and can provide professionally trained SWs. We have access to appropriate funding to cover respite care to enable my time out.	My loved one has a familiar, comfortable and trusted relationship with a competent SW. That there is a trail of accountability where the responsibility is shared and I’m not expected to be the “default” option.	I feel reduced stress and guilt – trust knowing my loved ones’ personal, emotional and domestic needs being met. I can trust SWs (if my loved one can’t recall/recount things). I can have authentic respite and maintain identity.	If my loved one has undertrained, unfamiliar or lack of SWs, I feel guilty because my loved one risks being neglected or receiving unsafe care. If I can’t have guilt free respite care.
Support workers	I have access to appropriate training and equipment, access to agency support to do my job and consistent clients.	My client has adequate funding for me to complete my job safely and on time. That I have access to appropriate training and equipment and to company support.	I feel valued that my client is able to trust me. I have a validated sense of altruism.	I feel rewarded knowing client appreciates that someone (me) is looking out for their interests. I feel more open to different tasks; to having more flexibility in routine.	If my client has had poor experiences with SWs in the past (e.g., unsafe care resulting in health problem), or overstepped a boundaries, then trust was often compromised and could be hard to get back.

Table 4.

How flow CMO configuration manifested for each participant group.

CMO#3 Sense of sustained flow:	Contexts	Resources	Mechanisms	Outcomes	Tensions
We can have consistent, workable expectations	There is agreed understanding regarding roles, relationships, and job-environment expectations	A mix of company support, trained SW workforce, appropriate funding and equipment	The ability to develop a positive sense of “flow”. (turned up and down via tension/resource balance).	Leading to consistent, workable expectations; people felt respected, trusted, and known.	No synergy, inflexible SW who can’t read domestic context company support
Disabled person	When my personal and domestic needs are known, respected, and completed in a safe manner.	I have access to trained, consistent and flexible SWs who are not stuck on preconceived ideas.	I don’t have to be so over-vigilant; it allows me to focus and pour energy to flow into other aspects of my life.	My needs are met in ways that recognise my whole self, supports my life roles, and offers flexibility as my life needs change.	If there is a lack of understanding of roles, relationships and job-environment expectations. If I have inconsistent, inflexible SWs.
Family members	When my loved one’s needs are met, and the domestic context is respected.	When my loved one can access consistent SWs who can take the overall family and domestic context into account. My loved one’s SW company who takes responsibility and accountability.	Having sustained levels of trust that SW are addressing the holistic needs of my loved one’s needs. Knowing SWs are responsive to our household context. That can “read the room”.	Reduced guilt and worry, saves energy. Being able to completely switch off, relax, focus on other family/things	Having SWs who can’t complete the tasks (untrained or incompetent), or not responsive to household context “read the room”
Support workers	When I understand my role, my expectations and I feel valued (by client) and supported (by company).	When I have access to appropriate resources e.g., equipment, supplies). When I feel supported by routine and policy of company. When there is communication between SWs (e.g., shared care plan on an App so all SWs know what’s going on.)	That I can access all of the resources, support knowledge and equipment to complete my responsibilities. That I’m attending to the holistic “overall” needs of my client, not just ticking a task list.	I feel satisfied, significant, accomplished in my work. That I’m done my job well. That my client is satisfied. That client is safe, happy.	If I feel restricted by rules, policy, e.g., slack communication process between SWs). When I’m expected to provide the same care between different clients (expectations), but unequal funding (ACC v MoH).

Research team reflexivity

Research team reflexivity (i.e., considering and acknowledging the values, skills, and experience that every researcher brings to a research study) was enacted through reflecting on the individual and collective influences of the researcher team during regular team discussions. Our team were a mixture of lived experienced and clinical researchers, and included both Māori (JB) and non-Māori (JJ, RM). JB brings eighteen years of extensive experience in requiring the assistance of support workers in his daily life due to having a complete high-level spinal cord injury [5]. Regular team meetings were scheduled to enable the team to discuss and acknowledge JB’s lived expertise (and the nuanced perspective he could provide) and, most importantly, ensure data reflected the participant’s experiences.

Results

Sixteen participants participated in workshops (5 disabled people, 5 family members and 6 disability support workers) held between Dec 2022 and March 2023. A majority of participants were female (n = 14, 88%) and had been working with or as support workers for five years or more (n = 13, 82%). All participants identified as non-Māori. A majority of support workers worked for a support worker company as opposed to being a private sole trader (n = 4, 67%). Likewise, slightly more disabled people received support workers from a company as opposed to employing a private sole trader (n = 3, 60%) (See Table 5).

Table 5.

Participant demographic characteristics.

	Disabled people (n = 5)	Family members (n = 5)	Support workers (n = 6)
Age
25–34	1	0	2
35–44	0	0	4
45–54	1	1	0
55–64	1	2	0
65+	2	2	0
Sex
Male	2	0	1
Female	4	5	5
Health Condition
Cerebral palsy	3	–	–
Multiple Sclerosis	1	–	–
Stroke	1	–	–
Years with/as a SWa
<2	0	0	0
2–3	1	0	0
3–4	0	1	0
3–5	0	0	0
5+	4	4	5
Type of support
Company support	3	5	4
Private support	2	0	1
Both	0	0	1
Relationship type
Parent	–	2	0
Partner	–	3	0
SW for DPb	–	3	5
Live with DP	–	2	0
Have family as SW	1	–	–

^a Support Worker.

^b Disabled People.

From the initial eight draft CMO configurations generated from the first round of workshops, three final CMO configurations were prioritised in the second round (see Table 1). These final three CMO configurations articulate how all three groups prioritised positive relationships resulting from three key generative mechanism processes: (1) having clear communication, (2) building trust, and (3) developing a sense of flow. Although our final three CMO configurations were interrelated and shared various content with one another, each were deemed to represent distinct concepts. In our findings below, we describe how each mechanism process of communication, trust, and flow requires well-resourced contexts to generate positive outcomes. These contexts were influenced by a balance of resources and tensions specific to each group, and this balance ultimately impacted whether (or not) contexts could facilitate the mechanism processes required to generate positive outcomes. Pseudonyms were used for all participants. In the quotes below, the participant group is denoted using the letters DP (Disabled Person), F (Family), or SWC (Support Worker for company), or SWP (Support Worker private). The source of data is denoted using either W1 (Workshop 1) or W2 (Workshop).

CMO#1: Communication: Everyone’s on the same page about what needs to happen, when and where.

In this CMO configuration, clear and open communication was foundational to a positive relationship. We found that open communication was much more likely to be activated and enhanced in a context of space and opportunity for each participant group to discuss the topics important to them. If certain resources (e.g., a reliable support worker company, a trained support worker workforce, and transparent job instructions) were introduced to this context, this prompted the exercising of clear and open communication (a mechanism), which resulted in participants feeling the specific expectations and boundaries of their role were understood by others (outcomes) (see Table 2).

All participant groups agreed that relationships prioritising clear and open communication were vital: Communication is key (Sam, DP, W2); I think this kind of goes on top of everything, communication. I think it all kind of starts and ends there (Grace, SWC, W2); and, You know you’ve made a connection if you can communicate some things that you’re sharing and not going into a big long explanation or whatever (Marie, W, W2).

However, each participant group experienced elements of the communication CMO differently. For example, being able to access well-resourced spaces for communication enabled disabled people to discuss and prioritise their care requirements, boundaries, and expectations. This allowed disabled people to feel a sense of control and exercise autonomy, whereby they were not constrained to a rigorous and predetermined schedule. For instance, feeling comfortable discussing flexibility with personal care and routine, or requesting a different food or bedtime, as one disabled participant said:

When I, when I employ my staff, I say to them, “If you can be flexible,” like, you know, “I’ll guarantee you a certain number of hours a week, but if you can be flexible within that, whether I go to bed at ten o’clock or nine o’clock some nights” (Sandy, DP, W2).

In contrast to disabled people’s perspectives, family emphasised that well-resourced spaces for communication enabled support workers to understand that their “workplace” is a home. For family, clear communication supported a sense of predictability and safety, of not being a unit on a datasheet, and that their place in the triadic group was respected and valued. For example, one family participant said:

It’s the whole thing, too, about an invasion of privacy. You know, a good carer obviously knows that it’s your home and they don’t pick up things and move them, or do all that kind of stuff, so I, I think that, yeah, a good carer is respectful of their workplace being your home. And there can be challenges with that. You know, do they, do you have them load the dishwasher when you know that they don’t do it like you do? And, you know? It’s a constant sort of thing every day, many times a day (Marie, W, W1).

For support workers, a well-resourced space for communication allowed them to understand the specific job requirements, and whether or not they had everything needed to complete their tasks and responsibilities. Having a transparent understanding of their role and responsibilities enabled support workers to feel both supported and valued. Understanding their role also helped support workers “know” their client, in which case communication was often expressed via subtle physical and verbal cues, “you know, lots of nodding, you know, lots of, you know, those kinds of gestures of agreement” (Grace, SWC, W2). For support workers, clear communication enabled them to know their clients and have clear expectations. They could then use their knowledge and experience to solve problems flexibly and support clients’ needs, goals, and safety.

Interestingly, each participant group highlighted very similar resources conducive to good communication. Mutually beneficial resources for each participant group included having a reliable support worker company, having access to an abundant, trained support worker workforce, and having a collective understanding of transparent job instructions. However, each group used and valued the resources in slightly different ways. As an example, all groups highlighted that having a reliable support worker company was vital. For disabled people, this resource was valued because they could provide practical and administrative support and match support workers to their needs, thereby enabling greater communication by providing a paper trail of job requirements and support workers who knew personal care. For family, support worker companies were a valued resource when they had met and knew all three people in any potential triadic relationship. They appreciated when companies matched a support worker to their loved one based on personality, for example:

The agency I was saying, you know, has responsibility too, say, “This is the staff we have, and this is the client, and I know both of them because I’ve met both of them” (Marie, W, W2).

All participant groups noted aspects of inevitable tensions which could inhibit positive communication. Such instances were most likely to occur when other people were perceived to have read or interpreted “the page” a little differently. A key example was having people having different boundary limits or if boundaries were crossed, e.g., disclosing personal information. For example, disabled people found it difficult if support workers became over-involved in their affairs or support workers were felt to be “oversharing”. This was, of course, a delicate balance as participants realised that sharing biographical information was inevitable:

I think it’s important that there’s always a boundary, but, you know, you’re seeing them quite regularly, you’re gonna build up a personal thing, and to be honest, I think it’s a bit strange if you don’t (Evan, DP, W2).

However, while acknowledging some biographical details will be shared, the family expressed frustration when some of the “big stuff” was constantly shared,

There’s a boundary for over sharing, … I don’t wanna hear my husband telling me about someone’s marriage problems, someone’s, you know, their child’s in trouble with the law (Marie, W, W2).

For support workers, tensions could arise if they were asked to do something outside the pre-agreed expectations or if another support worker had already passed a boundary. Both instances could create tension due to the ramifications depending on which boundary was crossed, and it might set an uncomfortable precedent.

In sum, clear and open communication between support workers, disabled people, and family helped all stakeholders understand the expectations and boundaries required of each role. If the team had clear and open communication about what needed to happen, when, and where, this enabled the expectations and boundaries required of each role to be known and discussed. In instances where clear and open communication was present, this increased the likelihood that all parties felt reciprocal respect and could trust that their needs would be met, which we now describe below.

CMO#2: “The Trust Factor”: that I (or my loved one) am/are in safe hands

Because the work undertaken by support workers is often intimate and takes place in people’s homes, participants emphasised that building trust is vital for the success of ongoing, sustainable relationships. We found that having a supply of funded, reliable, competent support workers (context) could promote increased feelings of sustainable, reciprocal trust through the development of familiarity and relationship over time (mechanisms), which enabled each participant group to feel increased safety, freedom and flexibility (outcomes) (see Table 3).

Although each group emphasised trust as a crucial element necessary for positive support worker relationships, trust manifested differently for each group. For example, while all three groups valued the same resources (e.g., having enough funding to cover the care required, having a support worker company that has a clear understanding of a person’s care, and having an adequate supply of competent support workers), each group had a particular idea of what “good” trust was and the specific outcomes it afforded them.

For disabled people, “good” trust was knowing their support workers were capable, competent, and diligent in their attention to the details of an individual’s personal care requirements. This was of paramount importance, as successfully carrying out many personal care activities is fundamental to maintaining a person’s health (for example, knowing how to assess skin integrity so as not to get a pressure sore). Furthermore, disabled people can often have particular routines, so they need to be able to trust their support workers can assist in ensuring things are in a specific place for access and safety:

They know what needs done and how it’s done… I’m very particular, well, I have to be, so everything has to be where I want it, so they know the clock radio goes somewhere, my phone goes somewhere else, my toileting stuff. Everything’s all around and got a monkey bar and a (?) pole and things, so they know where everything goes (Kelly, DP, W1)

In addition, “good” trust for disabled people was knowing that various aspects of their lives (often established in the communication/expectations phase) would be kept private and confidential, such as finances and security. For disabled people, having support workers they could trust to assist in managing issues such as health, privacy, and routine ultimately contributed to greater feelings of safety, freedom and flexibility. Disabled people deemed all these factors essential to a positive support worker relationship: It’s trust, mutual trust and empathy. If you’ve got those two, you’re a long way down the track (Sarah, DP, W1).

For family, feelings of “good” trust were directly related to having adequately funded, capable support workers who could assist with their loved one’s personal, emotional and domestic needs. For example, as one participant whose loved one has no short-term memory highlighted:

… trust is a huge thing cos my partner has no short-term memory, so he can’t remember the person who’s actually come to support him; that’s a tough one, leaving the house and your partner can’t regurgitate what’s actually happened to them during the course of a day, so having trust in that person who’s supporting him, they’re not just leaving him to flounder on his own (Helen, W, W1).

Secondly, “good” trust for family was knowing there was a support worker company and support workers to provide backup support. This backup support ensured a trail of accountability and that the responsibility was, at the least, shared between everyone – disabled people, family, support workers and the support worker company. Family did not want to be the “default” option; who were expected to always be “on call”. As one family participant said:

You don’t feel like your partner’s caregiver 24/7, so having the ability to actually step out the front door and know that your partner’s completely supported (Helen, W, W1).

If the family felt genuine trust and empathy towards support workers, then the family could have genuine, relatively “guilt-free” time out. This opportunity for time out supported their own identity and wellbeing. For example, one family participant mentioned how having trust enabled them to feel entitled to be a person that’s independent and separate from his life and his situation (Josephine, W, W1).

For support workers, “good” trust was having people trust in them. Of primary concern, support workers required the resources (e.g., having enough allocated time and funding to complete the job safely and having appropriate training and equipment to do the job) to complete their work well. This was foundational for establishing trust. Access to company support was another resource required by support workers: we need a lot more support around like, you ring the office, and you’re not on hold, you know? (Alice, SWC, W1). Support workers also required the support of other support workers who are there to continue the work, as one participant said:

[Having] a network environment, knowing that there is going to be someone there to take over from you, or you know, there’s, I guess, sometimes I think I can’t take a sick day because what’s gonna happen if I’m not at work? So those work pressures (Alice, SWC, W1).

Once support workers felt well-resourced, they then valued having a client who could trust that somebody was looking out for their best interests (Grace, SWC, W2). This strongly validated the sense of altruism often held by those in a support worker role. Support workers also valued having the trust of family, as one support worker said: That there’s that trust there that they can leave their family member with us (Wendy, SWC, W1). Furthermore, in the context of high trust, support workers felt more comfortable participating in proactive talks. As one support worker said: you’re able to have those open conversations about, okay, we’ve got this goal, how do we get there or you know, rather than being really closed off and just being there to do what you need to do (Wendy, SWC, W2). Support workers were also keenly aware that if clients had had poor experiences with support workers in the past, then trust was often compromised and could be hard to regain.

All participants also reported several tensions that could compromise trust. This was particularly so for family, who, without high levels of trust in support workers, felt a great sense of responsibility, also closely connected to feelings of guilt. The family reported that they held a great deal of responsibility regarding the wellbeing of their loved ones. If their loved one’s health or welfare was compromised (for example, due to new or untrained support workers), the family felt the guilt personally; they should have been there supervising, and it wouldn’t have happened if they were there. This can create a great deal of chronic pressure and stress, as one family participant articulated:

It doesn’t take much. I mean, he’s had toenails ripped off recently and stuff. Just the way they’re handling him. And I feel so guilty because if I’d done it, it wouldn’t have happened. I know that for certain. But yeah. As you say, good carers are worth their weight in gold; they really are (Josephine, W, W1).

Second, this sense of guilt was a significant barrier which stopped family members from taking respite time or trips away. This was a complex area for the family, who talked at length about the mixed feelings of guilt and worry inherent in having any time out. The family felt guilt for both being away in the first place and then guilt for worrying that their loved one might receive inadequate care. Trust was an essential factor if genuine time away was to be rejuvenating. To do so without trust was to spend the whole time worried. As one participant said:

I went away this weekend, just with my daughter-in-law and her friend, just overnight, you know, just, and I enjoyed it It was lovely, but I carry this guilt with me going, because I know he’s there lying, or whatever (Trudy, W, W2).

CMO#3: “A sense of sustained flow”: A space where people feel “known”; people can progress towards consistent, workable expectations and a job well done.

Sustainable, positive relationships were more likely to develop and be maintained if all stakeholders felt “known” and valued so that tasks and relationships were experienced in a flowing, easeful, holistic way. We found that the mechanism of flow was much more likely to occur in a context where there was an agreed understanding regarding roles, relationships, and job-environment expectations through clear communication and trust. Several key resources made this context more conducive to flow, including having support worker company support, a trained support worker workforce, appropriate funding, and access to the right equipment and supplies. A well-resourced context prompted the development of a positive sense of “flow” specific to each group, enabling ongoing negotiation of workable expectations. In this case, all groups felt the “job was well done” when people felt respected, contributing to consistent, workable expectations and the success of ongoing, sustainable relationships (outcome) (see Table 4). This CMO was the product of communication and trust but also facilitated the development of both. Having a high sense of flow reduced repetition. It allowed for energy to flow into other aspects of life and expression, uplifting a sense of autonomy for each group, and was reflective of healthy boundaries.

Each participant group experience the journey of “flow” in their own way. While all disabled people valued consistent and capable support workers, some disabled people highlighted their preference for flexible support workers who could be trained, suggesting they were not stuck on preconceived ideas: I can easily train them to do what I want them to do. And, in actual fact, I find that better because then they haven’t got these preconceived ideas (Sandy, DP, W2). Whether disabled people preferred to train support workers without prior experience or work with trained support workers, all agreed that having support workers who completed their care capably, consistently, and safely enabled a sense of sustainable flow to develop. As one participant said:

Once they’ve been there a while, there is a natural rhythm to it; they know what needs to be done, when and how, and that’s why if you can keep someone good, you do (Sarah, DP, W1).

In this resourced context, “good” flow meant disabled people did not feel so over-vigilant (e.g., they trusted their support workers to assist with maintaining health), enabling disabled people to focus and pour energy into other aspects of their lives (e.g., employment, socialising or hobbies). This enabled disabled people to feel more autonomous and flexible, and their needs were met in a way that recognised their unique circumstances, supporting their life roles.

For family, sustainable positive relationships were facilitated by having competent support workers who could consider the wider family’s overall context and needs. This happened when all groups had a collective understanding and expectations (including the support worker company), and support workers could “read the room”. For example, if the support workers acknowledged and respected that the “workplace” was a home, then family felt their privacy and “space” was respected:

A good carer obviously knows that it’s your home and they don’t pick up things and move them, or a good carer is respectful of their workplace being your home (Marie, W, W1).

In these conditions, family were more likely to focus on themselves, reducing the sense that they must be the default carer and finish what has not been done, enabling them to maintain their role as partners/parents and not a support worker. This outcome was significant. As mentioned, the family reported a great sense of responsibility and guilt associated with maintaining the well-being of a loved one. Sustained levels of trust in the administration and provision of the support worker workforce work were seen as essential. This lifting of responsibility of care from any one person’s shoulders enabled the family to completely switch off, relax, focus on other family members, and pursue their own interests: … being entitled to be a person that’s independent and separate from his life and his situation (Marie, W, W1).

For support workers, “good” flow was about ensuring their job was well done. Support workers appreciated clearly understanding their role and having the resources necessary to complete it. This enabled support workers to feel like they could conduct their role tasks to the best of their ability. In doing so, it was more likely that their effort was appreciated by the client and family, which contributed to being satisfied and feeling significant, confident, and accomplished. For support workers, it means a lot to have a client feeling satisfied – that their client is safe and happy. This desire, articulated by all support worker participants, speaks to their attention to holistic “overall” needs, not just tick task list:

… that, you know, they [client] are comfortable. They have had all their activities of daily living provided, you know, in an adequate way… we know that they are safe and warm and looked after (Wendy, SWC, W1).

All participant groups highlighted tensions and negative actions that could restrict “flow” development. A fundamental tension surrounding “flow” was having a lack of synergy between groups. This could happen, for example, when there were significant power imbalances, characterised by inflexible and unreasonable requests by disabled people or family, or support workers who had little respect for a disabled person’s autonomy. For instance, support workers recalled instances when client requests were unreasonable or lacked flexibility, and disabled people and family shared experiences of having support workers who they felt were patronising, not responsive to household context, or able to “read the room”. A further area of tension is the inequity of funding between some clients who had the same level of need: I think we’re just here to provide the same level of care, but the situation around that isn’t always the same (Wendy, SWC, W2). In these instances, support workers tried to “do a job well” when funded and resourced poorly but with high expectations. Often, support workers would try to mitigate this inequity by concentrating on completing basic needs for all and forestalling problems with knowledge of likely challenges.

Discussion

This study described how particular context, resource, and mechanism combinations can generate positive, sustainable relationships in domestic environments between disabled people, family, and support workers. Our findings support previous research on this topic, which has highlighted the importance of communication, trust, and sustainable flow as key factors involved in positive relationships between disabled people, their family, and support workers [6,27–29]. However, as Topping et al. [29] suggests, further research is required to investigate the intricate interplay between factors that impact on the quality of everyday disability support delivery.

Our research addresses this need by describing novel research that has, for the first time, used realist inquiry to drill down to examine the interplay between certain contexts that support latent, underlying mechanisms [20] which contribute to communication, trust, and flow for disabled people, family members, and the support workers. Using realist inquiry, our three interrelated yet distinct CMO configurations enabled us to propose a tentative “programme theory” to explain ideas and assumptions underpinning how, why, and in what circumstances positive support worker relationships work [21]. Importantly, each participant group required different resources to activate the mechanisms of open communication, building trust, and developing a sense of flow, in response to a dynamic balance between resource provision and tensions. We suggest that research attention is now required to explore potential tools and strategies which support, and target resources necessary to promote mechanisms conducive to positive support worker relationships.

For example, to allow opportunities for discussion and negotiation (i.e., to generate open communication), our findings suggest that we must invest in a combination of supportive support worker company, increased numbers of trained support workers, and promotion of respect for establishing boundaries. The issue of personal boundaries was a key tension identified by all participant groups in our study. Participants highlighted several challenges relating to boundaries. These included distinguishing between work and friendship and ensuring that support workers did not become too familiar with family affairs or over-share personal information – all issues discussed in previous research [3,6,10]. Topping et al. [14] have emphasised the importance of communication to get “the balance right” (p. 6) when establishing boundaries between work and friendship and highlight how negotiating such boundaries can be complex, for example, when efforts to prevent over-familiarisation can also serve as a barrier to building quality relationships [29].

Participants in our study highlighted several resources to support optimal communication outcomes, including having support workers with “soft skills” (i.e., interpersonal skills) and the ability to read between the lines. These interpersonal skills can be challenging to teach but might be partially achieved by matching support workers to clients based on personality and shared interests [6,13,30]. Promoting the resources necessary to generate open communication can also draw on research by Gridley et al. [12], who highlighted that consistent visits between regular support workers and disabled people can improve understanding and respect for personal situations and boundaries. Building this type of continuity has been associated with improving support worker/client relationships, enabling support workers to become more familiar with a person’s unique circumstances, and reducing disabled people’s need to explain support needs and expectations from the beginning [12,13].

Our findings also suggest that resources needed to bolster contexts promoting the mechanism of trust are essential, particularly for family members. Family members reported trust was critical for several reasons: to know family members will be well looked after physically and emotionally, to know family members could exercise choice and control, and to trust they had backup from companies or other support workers – thereby having genuine opportunities to have time away without worry and guilt. Even though support workers are employed to assist one person, their presence in a family environment ultimately impacts the entire family unit, including spousal identity [9,10], distribution of domestic roles [6], boundaries, privacy, confidentiality, and general routines about the household [11,15,27]. Pullin and McKenzie [27], who interviewed family carers found that participating in long-term care was complex, all-encompassing, and lifelong and involves “the development of complex personal and social processes aimed at keeping the family unit together, protected from intrusions to privacy and sustainable into the future” (p. 1629).

To facilitate greater trust, participants in our study highlighted several resources that can help mitigate such challenges. These included competently trained support workers and adequate funding for sufficient support workers for family members to have respite breaks and company support. Support worker companies were felt to provide an extra layer of resources and a trail of accountability for all participant groups. As mentioned, our participant groups utilised resources, including those which facilitated greater trust, in ways specific to their circumstances. For example, some disabled people preferred support workers who weren’t formally trained as it made it easier for them to instruct them in their particular routines. Such an instance reinforces the need to centre discussions and decision-making about disabled people’s support requirements [29]. Doing so built trust, which was needed to ensure support arrangements are responsive to a disabled person’s expertise, unique circumstances, and requirements [6,13,14].

Our research also suggests that resources are needed for sustained positive support worker relationships to establish a sense of flow over the long term. To achieve this, our study indicates that resources, including support worker companies, should enable long-term working relationships where possible (e.g., not pulling staff out regularly or casualising the workforce). Consistency supports the development of holistic knowledge, trust, and respectful communication. Further resources to strengthen the disability support workforce have been proposed, including improving working conditions (i.e., professional development pathways and fair remuneration) to help attract, retain, and foster competent, quality support workers [29]. Investing resources into contexts which can facilitate greater flow enables disabled people to feel their holistic needs are met and can exercise autonomy to pursue their life roles. When this occurs, the family sense the needs of the overall family unit are considered, and feel free to pursue their life roles without guilt or feeling they are abdicating responsibility. Support workers can feel supported to express their compassion and problem-solving and feel satisfied, significant, and accomplished.

Tensions applicable to all our CMO configurations related to systematic areas, such as the overall availability of capably trained support workers, sector funding, and a lack of infrastructure support to facilitate a sense of security for all involved. Such issues have been raised in the literature. To mitigate such tensions and facilitate the provision of long-term quality support worker/client relationships to flourish, Topping et al. have argued it is essential that quality systems are built at the workforce and sector level [13,29], calling for a renewed focus on personal training to complement broad-skill industry qualifications, establishing supportive peer networks for support workers and for employers to care for their staff while also ensuring support workers are maintaining consistent performance. In a similar vein, Mosko et al. [30], who interviewed disability support workers, people with disability and their families and carers, disability service providers, and training providers about the move to individualised funding in Australia, argue the skills and competencies taught to support workers need to move from task-focused to person-centred care.

Limitations

The findings of this study should be considered within context. Participants were recruited within a specific geographical area of Aotearoa New Zealand, i.e., Canterbury. Furthermore, despite consultation with and recruitment through a Māori-led disability organisation, our methods failed to recruit any participants who identified as Māori [31]. The inclusion of Māori perspectives is essential in future research on this topic. Māori have higher rates of disability than non-Māori (36% v 24%) [1], and can experience greater health inequities and increased barriers accessing healthcare services compared with non-Māori [32,33]. We also endeavoured to ensure our recruitment process was inclusive of a variety of cognitive and communication impairments (see recruitment). However, our recruitment strategy of using personal networks, contacting local disability organisations and community support worker providers excluded people from a range of ages, socioeconomic, and language backgrounds, and was not accessible for people with communication and cognitive disability. Furthermore, our iterative, co-design method could have been improved by bringing our participant groups together for their generative potential. Future research should consider addressing these methodological adjustment.

As mentioned in the results section, a majority of participants had five years’ experience receiving or working as a support worker, and most support workers were employed through a company as opposed to being a sole trader. People with less experience and support workers who are sole traders may report novel concerns not captured in our sample. From a methodological perspective, our analysis provides an “initial theory” and a starting perspective, which now requires further testing and refining. Findings can be used to guide support worker workforce development initiatives/programs in the future, pointing to what should be paid attention to and what might work, in what circumstances. Future work in this area requires partnerships between researchers, those with lived experience, and advocacy.

Conclusion

There is an emerging consensus regarding the key factors that underpin high-quality disability support, yet there remains an urgent need to explore the intricate interplay of context and mechanisms that drive positive outcomes, especially across diverse stakeholder groups such as disabled people, their families, and support workers. A more granular understanding of these dynamics can enhance the efficacy of disability support systems and inform the strategic distribution of resources. Our findings indicate that targeted resources that activate mechanisms of communication, trust, and flow are needed to promote positive, sustainable relationships. Our initial theory framework represents the starting point when considering the dynamic balance of resources and tensions needed to realise successful community disability support worker relationships. While preliminary, we propose the next step is to pay attention to research, strategy, and tools that invest in and strengthen the resources needed to promote long-term positive relationships between disabled people, family, and support workers.

Funding Statement

This work was supported by the Canterbury Medical Research Foundation emerging researcher grant awarded to JB in 2022.

Disclosure statement

No potential conflict of interest was reported by the author(s).