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Perspectives on quality of care for people who experience disability
  1. Joanna K Fadyl,
  2. Kathryn M McPherson,
  3. Nicola M Kayes
  1. Health and Rehabilitation Research Institute, AUT University, New Zealand
  1. Correspondence to Professor Kathryn M McPherson, Health and Rehabilitation Research Institute, AUT University, Private Bag 92006, Auckland 1142, New Zealand; kathryn.mcpherson{at}aut.ac.nz

Abstract

Background and objective Quality of care is considered to be of central importance in healthcare, disability services and rehabilitation. People experiencing disability often access a range of health and social care services; for some, these services are integral parts of daily life. Little research has explored perspectives of disabled people regarding what constitutes good quality care. This qualitative study aimed to explore and synthesise these perspectives to build a better picture of what constitutes good-quality care for disabled people in New Zealand.

Design and participants Qualitative focus groups and interviews were conducted with a range of participants including people with physical, sensory and/or intellectual impairment; informal and formal carers; and health and social care professionals. Data analysis used constant comparison methods as described in Strauss and Corbin (1998) to determine the factors of most importance and how they contributed to quality of care in health and social care services from the perspectives of people who use these services.

Findings Thirty-one participants took part, representing a range of ages and disabilities. Three main themes identified from data analysis were: (1) technical competence of care service and professionals; (2) a ‘human’ approach to service provision; and (3) context-appropriate response to needs.

Conclusions Findings offer a service-user perspective on what makes a difference to quality of care for people experiencing disability. They suggest that to provide context-appropriate care which addresses individual needs, the right mix of technical competence and a ‘human’ approach to care is needed. The mix required for the ‘right’ balance may depend on the type of service.

  • Quality of healthcare
  • qualitative research
  • disability
  • delivery of healthcare
  • quality of care

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Introduction

Quality of care is a concept of central importance in healthcare, disability services and rehabilitation. However, it is often perceived differently by different stakeholders.1 2 Various definitions and measurements of quality of care exist, with the traditional focus being limited to the quality of medical provision.3–5 As a result, it is likely that much of our current conceptual understanding of quality of care is specific to medical care and may not fully address other important areas such as personal care at home, non-medical health-related care, social and vocational services. Patient or client perspectives on the quality of the care they receive are widely accepted as important, as indicated by the widespread use of patient satisfaction measures.2 5 Although this information indicates how closely the services provided align with our measures of patient satisfaction, it still provides only limited information about what service-users perceive contributes most to the quality of the service for them. Indeed, the field of ‘measuring satisfaction’ has received much methodological and conceptual critique.6 7 Clearly fundamental to a good measure of patient satisfaction is that it reflects a clear understanding of what is important to service users themselves in terms of quality of care. Without that, we may be failing to ask the ‘right’ questions. Patient experience surveys that allow a more expanded response than more standardised measures are a method of quality assessment that is becoming more widespread.8 9 However, designing surveys to ensure information collected reflects issues considered important to quality of care from the patients' perspectives is itself complex.10 Although some measures have indeed drawn on qualitative data concerning these perspectives,11 12 further exploration of factors that service users perceive to contribute to good quality is needed.

Lawthers et al,5 in their systematic search of the literature on quality of care for disabled people, identified several key quality issues relating to clinical services provided to this population. These included lack of knowledge by providers about the best treatments, barriers to effective communication between providers and their clients, and safety issues such as risk of accidental injury. They also found that for non-clinical services such as social and vocational services, the literature regarding definitions of quality and appropriateness was less clear, and there was a paucity of literature looking broadly at the quality of non-clinical care for people experiencing disability.

As highlighted in the Lawthers et al5 review, people who experience disability often access a range of health and social care services, and for some, these services are integral parts of daily life. While it is important to understand how all service-users perceive quality of care, this is particularly vital for those who are regular service-users. This group of people by very definition have a need for and reliance on these services, and as such, their quality, or lack of it, has potential for a much broader impact. Indeed, a recent White Paper Task Force on Chronic Care Education in the USA13 highlighted a real need for better education on a quality care in chronic and disabling conditions, particularly with more people surviving such conditions for much longer.

Measurement of the actual components of service that are provided is clearly important, as this is needed to ensure that provision meets agreed quality standards. However, for people for whom ‘care’ services are necessary to function optimally in daily life, quality of care also depends on the ‘experience’ of the service-user. Although specific needs and concerns may vary across people and across different disability populations, it seems appropriate to explore perceptions of quality within a varied group of people with different disabling conditions and find out if there are broad categories of issues that may apply to a range of people.

Methods

Study design

We aimed to address the question of what matters most about quality of care for disabled people. This study was carried out as part of a larger study aiming to derive improved measurement of ‘quality of life’ and ‘quality of care’ for disabled people.14 All centres involved in the larger study utilised a methodology derived by the lead centre of the WHOQOL-DIS group (University of Edinburgh) and approved by the WHOQOL group (Geneva).14 We report here only on the perspectives of New Zealanders regarding quality of care.

In brief, the study design called for a qualitative approach, employing focus groups, which our team complemented with individual interviews if requested. We further drew on a social constructionist perspective.15 This approach was chosen because it was aligned with the current New Zealand Disability Strategy,16 which locates disability as arising from the interactions between the person with impairment and the environment and society in which they live. In this approach, quality of health and social care services are conceptualised as being crucially linked to the experiences and perspectives of the people who use those services. Thus, people's current perspectives on ‘quality of care’ were anticipated to be related to previous experience of, and outcomes associated with, health and social care. In addition, they would be influenced by engagement with other stakeholders involved in those processes such as health professionals, formal carers and family members as well as other service users. To that end, a broad definition of ‘care’ was used, covering many types of services received by participants, such as healthcare, personal care, supported housing and occupational services. In addition, data were collected from informal carers and health and social care professionals as well as people experiencing disability. This study received ethical approval from the New Zealand Health and Disability Ethics Committee.

Participants

Participants experiencing disability owing to a variety of impairments, both congenital and acquired, were purposively sampled17 through local service providers and advocacy networks. Inclusion criteria for people experiencing disability were that they experienced physical or intellectual disability to the point where it affected their daily lives, and they had experienced health and/or social care services in New Zealand. People were excluded from the research if they were unable to provide informed consent or to communicate with a researcher, although people with significant communication difficulties were able to be included with the assistance of professional support people accessed through the recruitment localities. Inclusion criteria for relatives and carers, and health and social care professionals were that they were currently supporting people who meet the inclusion criteria for people experiencing disability. The sampling strategy aimed to get a diverse range of participants in terms of gender, age, ethnicity and type of disabling condition.

Six focus groups were conducted, including groups with (1) physical impairment (mixed ability), (2) intellectual impairment, (3) Parkinson's disease, (4) Multiple Sclerosis, (5) relatives and carers, and (6) health and social care professionals. We aimed to conduct focus groups with small numbers of participants per group (four to six people) to encourage the involvement of all participants in discussion, particularly for the disability groups, as many participants required support to take part. In addition, we also carried out two individual interviews to augment data gathered from focus groups, as this was the preferred option for two Maori participants (the indigenous people of New Zealand).

Procedure

Initially, meetings took place with representatives from local service providers and advocacy networks to introduce the study aims, design and eligibility criteria. These representatives then identified potential participants within their service or network, gave them information about the study and invited them to attend the relevant focus-group session if they were interested in taking part. At the beginning of the focus-group sessions the moderator went through the information sheet again with participants, answering any questions. The format of the focus groups was then discussed, group rules established (eg, ensuring that each member of the group had an opportunity to contribute), and relevant ethical issues raised (eg, highlighting the role that all group members had in keeping comments confidential). Participants were asked if they were happy to continue, and if so they each completed a consent form and a brief demographic questionnaire before the focus-group discussions began.

Two researchers conducted each focus group. One researcher experienced in facilitating group discussions with diverse groups (KM with a nursing and psychology background or NK a health psychologist) moderated the focus group, while a second researcher (NK or JF) took notes about the session to aid future analysis. Where required, support people attended the focus groups to assist with communication. For the discussion looking at perspectives on quality of care, the focus groups and interviews were relatively unstructured, as different participants had different ways of talking about experiences. The moderator kept the discussion on the topic of quality of care, and prompted participants to think about all the different types of services they receive and what contributed to good or bad experiences. Views of all members of the group were actively sought by asking each individual for their contribution on each topic. For individual interviews, the same questioning protocol was used. All focus groups and interviews were audio-taped and transcribed verbatim. All transcriptions were assigned ID codes and had identifying information removed. Data were stored in separate locked cabinets to consent forms and accessed only by the researchers involved in the project.

Analysis

Focus groups and interviews were analysed using rigorous methods outlined in Strauss and Corbin.18 First, transcripts were coded line by line into thematic codes, and codes were then grouped into categories. Following this, each identified category was checked against all the data looking for statements that supported, qualified and challenged it, to further refine the categorisation (constant comparison). Comparisons were also made between the different groups of participants to identify similarities and differences between perspectives about what was important to quality care. Qualifiers and inter-relationships between categories were identified, and a comprehensive model was proposed to illustrate themes. This model was then refined to show the essential themes in the data and how they relate to each other.

Initial analysis procedures were conducted by JF with a parallel analysis of a small number of transcripts then conducted by KM and NK to ensure rigour and consistency of interpretation. At each stage of analysis, JF, KM and NK met to challenge the interpretation and the emerging themes, and ensure that all analyses was well supported by the data and reflected in the transcripts. The final model was further validated by checking that it suitably and comprehensively represented the original material from focus groups and interviews with participants.

Results

Twenty-nine participants took part in the six focus groups, representing a range of ages and disabilities. Diagnoses of people participating in the mixed impairments groups included cerebral palsy, Williams syndrome and Down syndrome. Some participants had multiple diagnoses. Health and social care professionals were from different areas and different levels of services involved in care and support for people experiencing disability. This included service managers, care givers and people with specialised roles (transportation, massage therapy). The demographic details of each focus group are listed in table 1. In addition, we had two participants take part in an individual interview rather than a focus group. These participants were one male (aged 52) and one female (age 38), both of New Zealand Maori ethnicity. One had a physical impairment and the other a sensory impairment. Participant experiences of healthcare ranged from General Practitioner through to specialist and hospital care. Social care experiences related to housing, occupational, personal care and special equipment services.

Table 1

Demographic information focus groups

Analysis brought up three areas of importance in quality of care from the perspective of people experiencing disability. All themes were supported by each of the different groups of participants (people experiencing disability, carers and relatives, health and social care professionals), although sometimes the particular aspects discussed by different groups differed. The themes and subthemes are listed here and described in more detail below, and their relationships are illustrated in figure 1.

Figure 1

Key quality of care themes.

  1. Technical competence of services and care professionals:

    • feeling of safety;

    • professionals' level of education;

    • professionals' willingness to acquire new skills and information;

    • provision of information/resources to aid informed choice;

    • coordination of and communication between services.

  2. A ‘human’ approach to services provision:

    • being treated as a person;

    • involvement in own care;

    • being listened to and taken seriously.

  3. Context-appropriate response to needs:

    • prioritising basic needs;

    • effort to understand needs of person in their particular context;

    • services adaptable to individual;

    • willingness to learn from patient/client;

    • cultural sensitivity and appropriateness;

    • involvement of family or care giver where appropriate.

Technical competence of services and care professionals

How I see is that at the end of the day the quality of care and the quality of life the clients get is almost totally dependent on the quality of staff you are able to employ. (Professionals group)

Competence in the context of quality of care from the perspective of the people experiencing disability, their carers, and relatives referred primarily to the specialist knowledge and ability for carrying out caring roles. What counted as technical competence depended on the professional role. For example, for a medical specialist, this tended to refer to their level of technical knowledge about the condition and how to treat. For a home care worker, it may be their ability to carry out domestic and manual handling tasks competently and efficiently. This theme also encompassed the level of education of professionals, and the feeling of safety from the perspective of the person receiving care, which fits in with widely held perspectives of professional competence.

(Education) does not happen. It's such a shame. Because they'll spend the next twenty, thirty years assembling a little bit of information … I mean its bad enough that they don't know anything about the treatment (for MS), but they have great difficulty in just handling the situation (having a patient with MS). And that's a problem with their education. (MS group)

Belief, you've got to believe in the person with whom you are dealing with … trust, that's the word. (Parkinson's group)

When you go to things like physio you're, you know, they're basically asking you to do all the things that you can't do: stand on one leg, lean over and pick that up … if they are going to do something they need to make me feel safe and you know it's about being supported so if they're going to make me bend over sideways then they need to kind of hang on to me and do it with me. (MS group)

The theme ‘technical competence’ also included whether the professional was willing to acquire new skills or new information to help meet the patient's needs. Also, whether they were able to provide information and resources to allow the patient or client to make informed choices, even if it involved options outside the area of that professional's particular expertise.

My GP I've got now, I can't speak highly enough about him really because the first thing he said to me when I went to him was ‘You are the first person with MS in my practice. I've got no knowledge of it, but we can grow with this together. I'll learn as much as is needed to manage your care if you're happy with that. I'm happy to learn with you.' So I feel really fortunate with him, and he's got quite an open mind to complementary medicines and stuff. (MS group)

Finally, good coordination of services and good communication between service providers and between professionals and patients/clients was a major contributor to the overall perception of competence of services and professionals.

To have all the, the MRIs and the tests organised in one go rather than having to wait for the results of one … going on to the list for the next one and then, it was another 3 months. (MS group)

I think good quality care is about all the parts working harmoniously with each other. (Disabled person interview 1)

A ‘human’ approach to service provision

Feeling that I'm actually a person rather than just a number or just a case. (MS group)

The ‘human approach’ theme included being treated as a person rather than a case; professionals involving the person in their own care; and the person feeling they were being listened to and taken seriously. Participants expressed that good-quality care across the whole range of services involving person-to-person interaction must include an element of being treated as a person.

It's as if that they are seeing you as a whole person, not just writing down something about you while you are talking. They can see your body language when they look at you. (Parkinson's group)

One group of young people that have come that were (previously) in another organisation, and they said they found the greatest thing there was getting up in the morning and staff actually talking to them. Not get up, get dressed, and we'll see you at lunchtime. (Carers/relatives group)

Participants expressed that a key contributor to the feeling that one was being treated as a person was being listened to and taken seriously. Some participants described a feeling of being almost disregarded by some health professionals who either did not listen to them or did not take their situation or concerns seriously.

KM: ‘What about you [participant name], is there something you wish people understood a wee bit better?’ P: ‘Listening’ KM: ‘Listening, the importance of listening’ P: ‘Because none of the staff listens to me, that's why. (Intellectual disability group)

That GP I'd had for 12 years actually thought I was losing, you know, I was going a bit mad, because I presented with all these different symptoms, and he just thought it was all a bit too dramatic, and then when the final diagnosis came I actually moved. (MS group)

They (care provider) phoned me up one day and said look, we can do your, they used to call it tandem care then, we can do your tandem care Monday to Friday, but can you manage on the weekend? (MS group)

It was felt by many participants that genuinely involving the patient/client in decision-making improved quality of care:

Well yeah, I mean it's about you isn't it? It's about your life, you know, it's about what's important to you, and you know I mean it's a process, I mean for some people you know there is a feeling of loss of power. (Disabled person interview 1)

A ‘human approach’ in quality of care referred to the understanding and acknowledgement by the professional of the human needs in the person they were treating or caring for. This acknowledgement was important whether or not the particular professional was the right person to address those needs—referral was regarded as an aspect of a ‘human’ approach, too.

(Diagnosis by a specialist) was very clinical, it was all very kind of matter of fact … he said to me oh there is an MS society I think but you probably don't want to go there, so he didn't do any referral, and I, my point is the fact that he, he was very good at his job, and he probably needed to because he diagnoses people with such varied and terrible conditions that he can't go there emotionally, but if he couldn't go there emotionally he should have sent me somewhere where I could get the help that I needed. If I'd come here (MS Society) straight away and found the kind of support that I needed and been given all the options and all the information that would help me prepare for what was going to happen, then that would have been completely different. (MS group)

Context-appropriate response to needs

For me it's about people being free to be in the context that they, that they are in, so whether you are a young disabled person or a Maori disabled person that in that context you're in, we support you in being that. (Disabled person interview 2)

The theme ‘context-appropriate response to needs’ focused on the notion that quality of care for someone with a disability is much more than just knowing how to treat an illness or provide a social service. For these participants, it was about being conscious of who the person is within their cultural, family, social and occupational context, and being aware of their needs with consideration of this context. This theme included professionals prioritising needs; making an effort to understand the needs of the person in their particular context; services being flexible and adapting to the individual; willingness to learn from the patient or client (knowledge sharing); cultural sensitivity and appropriateness; and the involvement of the family or care giver where appropriate.

Needs taking priority formed the basis of this theme. Participants raised the issue that if basic needs were not met, other things could not follow, and this was vital to quality of care, such that it affected the basic quality of life for the person.

I think it really comes down to doing the basics really well and then build from those. But if the basics aren't done well, and she isn't changed, you know well then what's a lot of other stuff doesn't really matter. (Carer/relative group)

(Of experience with personal carers) the church will come first, their family will come second, and that could be aunty Mildred who's on an atoll in the middle of the Pacific somewhere, and then I will always be third. I said to them I've got to be number one when that person's in my house. (MS group)

For those who had carers providing personal care at home, the perceived quality was greatly affected by whether that person could be relied on to meet their needs. This could be affected by factors such as the carer not understanding a person's reliance on them to have basic needs met, and putting other responsibilities ahead of their responsibility to provide that care.

It's such a big deal isn't it if they don't turn up, you know they've got, you know the same thing, I've been interviewing people and thought to myself, but she has young children, you know, if a young child is sick, she won't come that leaves us you know we can't function without someone. (MS group)

This impact of competing responsibilities on quality of care was also seen at an organisational level, with participants detailing experiences where good quality of care had not been provided because of organisational structure, lack of funding or staff having competing responsibilities.

Apart from doing quick checks, her food was put there, it just stayed there, nothing happened. And I realised after a while that nothing was happening, one day I went across to feed her. Sometime, but always they, IHC [intellectual disability support] member obviously came, you know a staff member person came and fed her, but they were never there when the food was there of course. But you know it's not the nurse's job to feed the people these days. (Carer/relative group)

And now my consultant has gone, working just in the private sector, and it's taken over a year to get me referred to somebody else, so I haven't got a consultant at the moment. (MS group)

A key part of being able to respond to needs was being aware of the needs of the particular individual. Participants discussed the importance of knowledge about the person's particular context for understanding their needs and priorities.

You have to think about what you're doing at the same time, it's not that it innately happens … each individual has to be addressed as that individual. (Professionals group)

Each has their own unique way of communicating, and so it takes quite a long time to build up that understanding to be able to interpret some gestures, some expressions, some kind of body movement or a mood or whatever as to what that actually means. (Carer/relatives group)

The ability to be flexible and adapt services to meet the needs of the individual was highlighted as important in care provision. It was suggested that not only should services be changing as the environment and context changes, but good-quality services should also be able to be adapted so they can meet the needs of different individuals.

When I was on steroids and lost my hair, she came with all these lists of things that I should be doing or trying out, which made me feel that she really you know I was a person to her, but also the um exercise that she gives me the weights and everything, she understands the balance problem. So she will get the movement that I need but she will do it in a different way to perhaps the way she'd do it with somebody else. (MS group)

The willingness to learn about needs from the patient or client themselves, or sharing of knowledge to ascertain what works for a particular individual was seen as very valuable in quality of care, and in some situations this was more important than technical competence.

After all I don't know how [another person]'s body works for [that person], but I know how my body works for me, what's best for me. (Physical disabilities group)

I've really appreciated receiving what I felt was really good care from someone with a true attitude that they wanted to help me, and they actually really cared about the outcome of that care, and then the details didn't matter so much. I could inform them along the way if they were doing something that wasn't quite appropriate or whatever, but it was really that attitude. (MS group)

Also related to individual needs was the importance of family and care-giver involvement and cultural sensitivity and appropriateness. Family and care-giver involvement came up as particularly important in the context of long-term care services.

I think it for me it's getting involved with making where she lives her home, and that family are welcome to go in and to be with her in her home and interact with the other residents and to get to know them. (Carer/relative group)

When you are dealing with client from particular cultures you need to be aware of what is important for them and like at some kind of family that's important where the family role has to be given in to account when you are making any decisions affecting the clients' lives. (Professionals group)

Cultural sensitivity and appropriateness in the data tended to relate particularly to Maori, the indigenous people of New Zealand, as New Zealand's bi-cultural status is embedded in legislation. However, findings could relate to other cultures as well, particularly in the context of allowing appropriate cultural practices to occur alongside standard care provision.

I didn't want the hospice workers to lose what they knew already, what they did to support families anyway was fine, and what Maori might do was bring another layer onto that and how they responded would be important, but they (hospice workers) didn't have to create a culture for us (Maori) because we do that. (Disabled person interview 2)

Relationships between the three main themes

As indicated in figure 1, there were important relationships and tensions between the three themes we propose here. In particular, participants expressed a feeling that the right mix of ‘human’ approach and technical competence was different for different types of services. For example, in short-term diagnostic services, technical competence was of critical importance, and the ‘human’ aspect, while still important, was not considered as vital to quality of care as it would be for other services such as daily care in the home. Conversely, for long-term services, particularly those which people relied on to conduct their everyday lives, the human aspect of care was essential, to the point where the care recipient may choose a less technically competent person if they felt that person really cared about them and was willing to learn. Finally, the combination of appropriate level of technical competence and a human approach to care was seen as integral to providing context-appropriate care.

Discussion

Importance of being treated as a person

This research indicates a clear message from disabled people in New Zealand that while it is important to have specific competence for a caring role, treating the care recipient as a human being is key to the ability to provide context-appropriate care that responds to needs. While existing models of quality of care for disabled people (eg, as proposed by Lawthers and colleagues5) highlight the importance of making care relevant to the values and needs of the person, our research suggests an important step towards achieving this may be the right mix of technical competence and human approach to care—that is that the human approach to care may allow technically competent care to be more individualised and appropriate to the person. This research also indicates that for long-term services, which are often vital to assist the everyday functioning of disabled people, a focus on being treated as human in the interaction may sometimes be more important to the care recipient than proficiency in the more technical aspects of the job—which it was felt can be negotiated if the service provider has the right attitude. This supports, but also extends, Donabedian's notion that good-quality care is made up of a technical and an interpersonal component,19 by suggesting that having the right balance may be as crucial to the quality as ensuring that both components are addressed. Indeed, it is also likely that these sentiments would be shared by people who are not disabled.

Our findings demonstrating a human approach to care is important can be seen to align with findings from studies that have investigated the relationships between doctors and patients. For example, Heszen-Klemens et al20 found that patients' memory of doctors' instructions and subsequent compliance tended to be better when the doctor was friendlier towards the patient and allowed the patient to act as a partner in the interaction. Other studies, such as Thom21 have found that a doctor demonstrating both caring and competency, explaining things to the patient and listening to the patient, are associated with how much trust the patient has in that doctor. Furthermore, a qualitative study by Slade et al published in 2009 found that people with chronic low back pain participating in an exercise programme stated that being listened to and told things in a way they could understand were influential in terms of how comfortable they felt engaging with the programme. Similar to our study, Slade et al found there was a tension between wanting expert information about their condition and wanting professionals to understand their individual experiences and knowledge of their own bodies.22 This supports our suggestion that finding the right balance between the ‘human’ approach to care and technical knowledge and competence could be important in terms of how people view the quality of a particular service.

Debates about the place of empathy and compassion in healthcare (eg, see von Dietze and Orb23 and MacLeod and McPherson23 24) highlight the need to consider carefully how a human approach is actualised. However, we would argue that the ‘human’ approach as described here differs from both empathy and compassion. Participants described a ‘human’ approach not as necessarily seeking to develop understanding or appreciation for what the experience is like, but simply acknowledging them as a person with experiences and emotions, and acting on that basis.

Strengths and limitations of this study

The population sampled for this study was heterogeneous in terms of age, ethnicity, type of disabling condition, severity of disability and types of care services accessed. This is a strength of the research in that it provided a diverse sample, providing rich data for analysis. A limitation of the study, however, was that the sample came from one geographical area only (Auckland, New Zealand). It is acknowledged that the relative importance of specific aspects of quality of care may be different in other places. For example, there are a number of factors which may be specific to this location which may have influenced our findings. First, Auckland is an urban location. Those receiving services in rural communities may offer a different perspective of quality of care not already captured in this research. Second, cultural perspectives in New Zealand may differ from those in other countries, potentially affecting perspectives of what is perceived to be important in quality of care. Finally, there may be a tendency for people to focus more on and report the things that are bothering them at a given time (eg, perhaps the things they are not getting), which may be influenced by the quality of care they are currently receiving. Given this, it is important to test the findings in other countries and geographical areas. Indeed, future publications from the other collaborating countries in the WHOQOL-DIS are likely to augment these discussions and our understanding.

A difficulty inherent in focus-group design is the potential for more vocal participants to dominate discussion. The focus-group moderators for this study managed this by asking each person in the group for their view on each discussion topic that arose. While it is a strength of our study that we included people with significant communication difficulties, this posed an extra challenge to the research design. As much as possible, these participants were encouraged to participate through support people and allowing additional time. However, the presence of support people could have further complicated another issue inherent with focus groups—that of ensuring people feel safe to express their views. Although all present in the group agreed that discussion was confidential, it is possible some individuals may have been deterred from giving their view because of the presence of other people.

Practice implications

The findings of this research have applications that should arguably impact on practice and lead to improved quality of care. First, the findings suggest that care professionals may benefit from training based around finding the right balance of ‘human approach’ and ‘technical competence’ for their particular area of practice. The findings of this research suggest specific practices that contribute to human approach and technical competence. In general, the more involved in a person's daily life the services were, the more weight the ‘human approach’ factor appeared to have, and the more technically specialised the service, the more weight ‘technical competence’ had. Bearing in mind, also, that it was still important to the participants in this research that the ‘human approach’ was present, even in very technically specialised services, just as ‘technical competence’ was still important in services that were involved in their daily lives. One way to approach developing this training could be to involve service-users in identifying what the right balance might be for particular services. Second, the themes and subthemes in the findings of this research propose specific factors that constitute the practices that service-users consider to be crucial to good-quality care. This illustration of good-quality care and the discussion of how it extends existing notions in quality of care could inform service improvements.

Conclusions

The findings of this research offer a service-user perspective on what makes a difference to quality of care for people experiencing disability. These findings suggest an additional layer to existing models of care, in that to provide context-appropriate care that addresses individual needs, the right mix of technical competence and a human approach to care is needed. There is also a strong suggestion that in some situations the human aspect may be of greater importance to the experienced quality of care than technical skill. We propose that an evaluation of what the right mix is for a particular service (in consultation with service-users) may help in planning how to train staff and deliver high-quality care and support for disabled people.

Acknowledgments

Thanks are extended to the participants for contributing their time and sharing their experiences with the research team; and to R Billington, K Diesfield, W Taylor and P Patston for their support and comments on the draft manuscript.

References

Footnotes

  • Funding AUT University funded the research.

  • Competing interests None.

  • Patient consent Obtained.

  • Ethics approval Ethics approval was provided by the New Zealand Health and Disability Regional Ethics committee.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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