an exploratory descriptive case study on care coordination a consumer perspective

An Exploratory Descriptive Case Study on Care Coordination: A Consumer Perspective.

• MLA style: "An Exploratory Descriptive Case Study on Care Coordination: A Consumer Perspective.." The Free Library . 2020 Jannetti Publications, Inc. 07 Apr. 2024 https://www.thefreelibrary.com/An+Exploratory+Descriptive+Case+Study+on+Care+Coordination%3a+A...-a0639761044
• Chicago style: The Free Library . S.v. An Exploratory Descriptive Case Study on Care Coordination: A Consumer Perspective.." Retrieved Apr 07 2024 from https://www.thefreelibrary.com/An+Exploratory+Descriptive+Case+Study+on+Care+Coordination%3a+A...-a0639761044
• APA style: An Exploratory Descriptive Case Study on Care Coordination: A Consumer Perspective.. (n.d.) >The Free Library. (2014). Retrieved Apr 07 2024 from https://www.thefreelibrary.com/An+Exploratory+Descriptive+Case+Study+on+Care+Coordination%3a+A...-a0639761044

Terms of use | Privacy policy | Copyright © 2024 Farlex, Inc. | Feedback | For webmasters |

Today marks the 177th Commencement Ceremonies at Emory University! After the activities at the Quandrangle, the Nell Hodgson Woodruff School of Nursing will host a Degree Candidate Recognition Ceremony at 11 a.m. at the Emory Student Center. All events will be streamed live.

Beth Ann Swan

Dr. Beth Ann Swan is Professor, Clinical Track, Associate Dean for Education, the Charles P. and Peggy Evans Endowed Distinguished Professor in Simulation and Innovation at the Nell Hodgson Woodruff School of Nursing, and Co-Director of the Woodruff Health Sciences Center Interprofessional Education and Clinical Practice Office at Emory University. Currently, she is participating in the INACSL’s Research Fellowship. She previously served as Dean of the Jefferson College of Nursing, Thomas Jefferson University. Dr. Swan is a fellow of the American Academy of Nursing, past president of the American Academy of Ambulatory Care Nursing (AAACN), and a Robert Wood Johnson Executive Nurse Fellow. She is nationally and internationally known for her research in health care and nursing. She was an early leader in exploring the impact of changing health care delivery models on outcomes of care. Throughout her career, Dr. Swan has been an advocate for engaging consumers in their health care, promoting quality care coordination and safe care transitions, and creating innovative evidence-based practices to improve care.

As the principal investigator on extramural funded grants, Dr. Swan has provided leadership and mentorship on ground-breaking projects impacting both nursing practice and interprofessional education. With her entrepreneurial mindset and belief in consumer-centered care and engagement, her latest research is focused on leveraging technology and big data to optimize cross setting communications to improve care coordination and transitions of care. She is also working in the simulation and virtual reality space building an interprofessional collaborative education model that leverages virtual reality in support of achieving interprofessional and social determinants of health competencies during transitions of care. Dr. Swan is leading the Atlanta Region Community Health Workforce Advancement (ARCHWAy) Program, a HRSA funded project to expand the public health workforce by training new and existing community health workers.

Dr. Swan was a member of the Veterans Health Administration Choice Act Blue Ribbon Panel and was a member of the Josiah Macy Jr. Foundation Planning Committee for Preparing Registered Nurses for New Roles in Primary Care. Her numerous publications cover a wide range of topics focused on primary and ambulatory care, innovations for education and practice, and health care policy. Dr. Swan developed the major contribution to care coordination and transition management, the national curriculum known as CCTM. She is the co-editor of  Care Coordination and Transition Management Core Curriculum  now in its 2nd Edition, co-edited the book  Perspectives in Ambulatory Care Nursing , and co-edited the book Integrating a Social Determinants of Health Framework into Nursing Education. Dr. Swan is the author of the November 2012 Health Affairs' Narrative Matters Feature,  A Nurse Learns Firsthand That You May Fend For Yourself After A Hospital Stay .

Areas of Expertise

Publications.

Peer-Reviewed Publications:

Swan, B.A. & Giordano, N. (in press). Addressing nursing students’ understanding of health equity and social determinants of health: An innovative teaching-learning strategy. Nursing Education Perspectives.

Swan, B.A. & Giordano, N. (2023). A cross-sectional analysis of a novel virtual reality tool for hotspotting. Clinical Simulation in Nursing, 80 , 31-34. doi.org/10.1016/j.ecns.2023.04.002

Regis, K., Phan, Q., Cadoret, A., Parker, N., & Swan, B.A . (2023). Gaining insight into member demographics and perceptions of diversity, equity, and inclusion initiatives in a professional organization. Nursing Economic$, 41 (2), 96-103.

Phan, Q., Geller, D., Broughton, A., Swan, B.A. , & Wells, J. (2023). Evaluating a low-cost disaster preparedness simulation for prelicensure nursing students. Disaster Medicine and Public Health Preparedness , 17(e343). doi.org/10.1017/dmp.2022.280

Giordano, N., Swan B.A. , Johnson, T., Cimiotti, J., Muirhead, L., Wallace, M. & Mascaro, J. (2023). Scalable and sustainable approaches to address the wellbeing of healthcare personnel. Journal of Advanced Nursing,79 (2), e12-e15. http://doi.org/10.1111/jan.15505 . Published online November 25, 2022.

Swan, B.A. (2021). Assessing the knowledge and attitudes of registered nurses about artificial intelligence in nursing and healthcare. Nursing Economic$ , 39 (3), 139-143.

Phan, Q., Johnson, N., Hillman, J., Geller, D., Kimble, L., & Swan, B.A. (2020). Assessing baccalaureate nursing students’ knowledge and attitudes of social determinants of health after a health equity simulation. International Journal of Nursing Education Scholarship, 17(1). Published online December 17, 2020.

Fenwick, K. & Swan, B.A. (2020). Managing dyspnea in individuals with idiopathic pulmonary fibrosis. Journal of Hospice and Palliative Nursing, 22 (6), 447-455.

Haas, S., Swan, B.A., & Jessie, A. (2020). The impact of the coronavirus pandemic on the global nursing workforce. Nursing Economic$, 38 (5), 231-237.

Swan, B.A ., Haas, S., & Jessie, A. (2020). An exploratory descriptive study on care coordination: A consumer perspective. Nursing Economic$, 38 (5), 244-251.

Swan, B.A. , Hilden, P., West, N., Chan, G., Shaffer, K., Berg, J., Dickow, M. & Jones, D. (2020). Redesigning nursing education to build healthier communities: An innovative cross sector collaboration.  Nursing Education Perspectives, 41 (5), 301-303.

2019, First Place Award for Outstanding Poster Presentation Faculty Development Conference, American Association of Colleges of Nursing

2018, TEDMED Research Scholar2017, President’s Above and Beyond Award, American Academy of Ambulatory Care Nursing

2016, Chairman’s Excellence Award, Board of Trustees, Thomas Jefferson University

2015, Distinguished Fellowship, National Academies of Practice & Distinguished Scholar and Fellow, Nursing Academy

Emory Nursing

• Academics & Admissions
• Student Experience
• About Emory Nursing
• Job Opportunities
• Faculty & Staff

Find us on Social

• Research article
• Open access
• Published: 10 November 2016

Care planning for consumers on community treatment orders: an integrative literature review

• Suzanne Dawson   ORCID: orcid.org/0000-0002-7357-625X 1 ,
• Sharon Lawn 2 ,
• Alan Simpson 3 &
• Eimear Muir-Cochrane 1  

BMC Psychiatry volume  16 , Article number:  394 ( 2016 ) Cite this article

4967 Accesses

9 Citations

9 Altmetric

Metrics details

Case management is the established model for care provision in mental health and is delivered within current care philosophies of person-centred and recovery-oriented care. The fact that people with a mental illness may be forced to receive care and treatment in the community poses challenges for clinicians aiming to engage in approaches that promote shared decision-making and self-determination. This review sought to gain an in-depth understanding of stakeholders’ perspectives and experiences of care planning for consumers’ on CTOs.

An integrative review method allowed for inclusion of a broad range of studies from diverse empirical sources. Systematic searches were conducted across six databases. Following appraisal, findings from included papers were coded into groups and presented against a framework of case management.

Forty-eight papers were included in the review. Empirical studies came from seven countries, with the majority reporting on qualitative methods. Many similarities were reported across studies. Positive gains from CTOs were usually associated with the nature of support received, highlighting the importance of the therapeutic relationship in care planning. Key gaps in care planning included a lack of connection between CTO, treatment and consumer goals and lack of implementation of focussed interventions.

Conclusions

Current case management processes could be better utilised for consumers on CTOs, with exploration of how this could be achieved warranted. Workers need to be sensitive to the ‘control and care’ dynamic in the care planning relationship, with person-centred approaches requiring core and advanced practitioner and communication skills, including empathy and trust.

Peer Review reports

The concept that people should have a stronger voice in decisions about their health and care has been a policy goal in health for at least 20 years [ 1 ] with increased consumer involvement linked to improved care experiences and better clinical and economic outcomes [ 2 ]. In mental health care, case management is the established model for care provision and aims to integrate care and support across a broad range of services for individuals presenting with complex needs [ 3 ]. As there is no single definition of case management, for the purposes of this review, case management and care planning are explored utilising Ross et al.’s [ 4 ] framework of case-management with core components including: case-finding; assessment; care planning; care co-ordination and case closure.

Case finding in this review refers to consumers on a CTO. The care planning process, informed by ongoing assessment, should be personalised to the individual, address the range of issues that may impact upon their health and wellbeing and be co-produced with the person and relevant others involved in their care [ 4 ]. Care-coordination, ‘the essence of case management’ , requires case managers to collaboratively facilitate the above processes with the care plan the ‘live’ document recording this process [ 4 ]. Case managers working with consumers on CTOs have the additional role of managing the CTO requirements, which may include informing the consumer and family about CTO processes, participating in tribunal hearings, initiating recall to hospital and managing discharge from the CTO [ 5 – 7 ].

Central to case management in mental health is the therapeutic relationship, with positive associations found between ‘perceived patient involvement, satisfaction and empowerment’ [ 8 , 9 ]. A recent systematic review examining barriers and facilitators to consumer involvement in care planning in mental health found consumer involvement was dependant on consumer capacity, the relational quality between consumers and health professionals and the organisational context, with the relational aspects of care planning most valued by consumers and their carers [ 8 ]. However despite benefits and policy support of increased consumer involvement, there has been limited progress towards fully involving people in their own health and care [ 1 ].

In mental health care a further challenge for clinicians is that forced care sits within service frameworks promoting recovery-oriented and person-centred care. The World Health Organisation state that ‘[p]ersons with mental health disorders should be provided with health care which is the least restrictive’ and that ‘maintaining legal instruments and infrastructures…to support community based mental health care’ is central to the implementation of this principle (p.8) [ 10 ]. Thus legal frameworks have been created to ensure individuals with a mental illness, whom are considered to pose a risk to themselves or others receive care and treatment through the use of CTOs [ 11 ]. Though CTOs typically last between 6 and 12 months, in reality many consumers will be on orders for extended periods [ 12 ] with rates of usage increasing in Australia [ 13 ].

Clearly challenges exist for mental health clinicians engaging consumers on such orders in ways that promote self-determination and empowerment. The issue of care planning with consumers on CTOs is complex, with CTO legislation, service delivery models and resource availability all impacting upon implementation [ 14 ]. Significant concerns regarding the effectiveness and ethics of CTOs also exist with a recent review examining CTO effectiveness finding no differences in social functioning, quality of life or service use for individuals on CTOs compared to those receiving standard voluntary care [ 15 ]. Advocates for CTOs cite clinical improvement and being the ‘least restrictive’ treatment option as benefits [ 16 , 17 ], whilst advocates against CTOs, often ex- service users, consider forced treatment a major barrier to collaborative, person-centred care [ 18 ]. Further ethical concerns have been raised about current legislation for compulsory treatment in Australia where there is a lack of consideration of the individuals’ decision-making capacity [ 11 ].

In summary, though case management has been used in practice for several decades, there remains a lack of conceptual clarity of what personalised care planning is [ 19 ] and lack of evidence regarding its effectiveness [ 4 , 20 ]. In mental health care, compulsory care further challenges concepts of personalised care planning. Over the past 20 years there has been significant debate in the literature about the purpose, value and stakeholder experience of CTOs. This review explores the impact of CTOs on case management. The intention is to add to the current evidence base with the aim of improving the process and experience of case management for all stakeholders, and specifically the experiences and outcomes for those consumers who find themselves on such orders. The integrative review method was the chosen methodology as it allowed for the inclusion of a broad range of studies from diverse empirical sources which was considered important in addressing this complex issue [ 21 ].

To gain an in-depth understanding of consumers’ , carers’ and mental health workers’ perspectives and experiences of care coordination and care planning for consumers on CTOs in community mental health settings.

Search strategy

The search strategy, utilised for conducting Systematic Reviews, aimed to find published, peer reviewed literature relevant to the phenomena of interest [ 22 ]. An initial search with relevant keywords was conducted, followed by an extensive search from 2000 onwards with relevant keywords and index terms. Databases searched included: CINAHL; PubMed; Medline; Scopus; PsychINFO and ProQuest (see Additional file 1 ). Reference lists of papers meeting inclusion criteria were checked for additional papers and searches were registered with the databases, allowing for inclusion of papers published during data analysis. Studies of qualitative and quantitative design and opinion papers from any country were sought. Literature published from 2000 onwards was considered for inclusion to reflect current mental health care practice and mental health legislation pertaining to CTOs. Non-English papers and studies with forensic patient participants were excluded.

Description of studies

A detailed search across selected databases identified 7459 papers. After removing duplicates, 4283 were examined against the objectives of the review and inclusion criteria by reading titles and abstracts. Eighty-two papers were retrieved for full review with a further 7 papers identified from reference lists and data base alerts. Forty-one papers did not meet the inclusion criteria and were excluded. A total of forty-eight papers were included in this review. Of the included papers, 24 reported on qualitative research, 15 on quantitative research, four used mixed-methods and five were opinion papers (see Fig.  1 ).

Flow chart of literature search strategy

There has been a significant increase in publication of papers on this topic in recent years with 25 of the included papers published since 2013. Empirical studies came from seven countries: New Zealand [ 6 ]; UK & Scotland [ 9 ]; Australia [ 6 ]; Norway [ 3 ]; USA [ 4 ]; Canada [ 3 ] and Israel [ 1 ]. Often several papers reported on data from the same study. The highest number was seven papers reporting on a large qualitative study conducted in New Zealand. In this instance, although these papers all had a different focus, findings were considered conjointly when there was congruence across papers.

Studies reported on a variety of objectives though the majority explored the experience of CTOs from different stakeholder perspectives including consumers, carers and mental health professionals from varied backgrounds. Fewer studies included views of lawyers, advocates and members of mental health tribunals. More recently authors have reported on more nuanced issues related to care planning, though the majority of papers referenced the current policy environment of recovery-oriented care. Three studies aimed to interview key stakeholders involved in care planning. Gjesfjeld and Kennedy [ 23 ] interviewed consumers and their nominated mental health worker, and a large New Zealand study aimed to interview consumers, their case workers, psychiatrists and carers. Brophy and McDermott [ 24 ] explored the perspectives of people on CTOs, their carers’ , case managers and doctors, to inform best practice for individuals on CTOs. No study specifically explored the care planning relationship. With the exception of two studies that aimed to interview participants on two occasions [ 24 , 25 ] to ascertain if participant views changed with time, all other studies collected data at one point in time.

Quality of evidence

JBI appraisal tools relevant to study design were used, with key criteria selected from each of the tools [ 22 ]. Studies utilising mixed-methods were appraised against qualitative criteria as results relevant to the phenomena of interest were drawn from qualitative data. Overall qualitative studies were of good to excellent quality with good methodology and representation of participant voices. Common gaps were lack of stated philosophical perspective and lack of information about the researchers and their influence on the research.

Of the quantitative papers, only one paper reported on a randomised control trial [ 26 ]. This study has drawn much debate, though the authors’ clearly identify various limitations themselves, such as the inability for clinicians to persist with initial randomisation at subsequent stages of clinical decision-making. Also, given the participant group, it was not possible for participants to be blinded to treatment allocation or allocation concealed from the allocator. The remaining fourteen papers were descriptive or correlational case studies. In most studies the sampling would not be considered robust, with people volunteering to participate and no randomisation. Furthermore, measures used were not always validated, though this was considered appropriate given opinions were being sought.

All included opinion papers were written by individuals considered experts in the field of research regarding CTOs. No papers were excluded following appraisal.

Availability of data and materials

The data supporting the conclusions of this article are included within the article (and in Additional file 2 ).

Data synthesis

Data was extracted from the included papers and coded into categories using NVivo 10. These findings are presented against a framework of case management developed from Ross et al. [ 4 ] and includes: case-finding; assessment and care planning; care-co-ordination; case closure; benefits of case management and broader issues that support effective case management (see Fig.  2 ). The qualitative research and opinion papers, provided rich descriptive data, and form the main part of the synthesis, with data from the quantitative papers used to augment the findings.

Framework for findings related to case management for consumers on CTOs

Core components of case management

Case- finding, reasons for use (positively and negatively framed).

This review includes individuals who are on a CTO and receiving case management from community mental health services. The reported reasons for consumers being placed on a CTO, from qualitative studies, included risk to self and/or others [ 27 , 28 ], poor insight, lack of compliance with treatment (predominantly medication) [ 27 , 29 ], ensuring treatment [ 28 – 30 ] facilitating discharge from inpatient services and hospital avoidance [ 29 ]. Quantitative studies reporting on workers perspectives of factors governing decision-making of CTO use found the most reported factors to be: ensuring contact with workers; protecting consumers’ from consequences of relapse; promoting medication adherence and providing authority to treat [ 31 – 34 ]. These clinical factors driving CTO use have remained consistent over the past decade, and across continents [ 31 , 34 ].

Consumer suitability

Several studies highlighted the lack of usefulness of CTOs to those clients whereby coercion experienced from being on the CTO cancelled out any gains [ 35 , 36 ] with clinicians reporting consumers most likely to benefit from a CTO being those with a level of insight into their mental health problems, and therefore more likely to collaborate with services [ 36 , 37 ]. Consumers needed to accept the validity of a treatment order for CTOs to be a viable treatment option [ 37 , 38 ] with Mullen et al. [ 39 ] suggesting that if good therapeutic relationships were not achieved within a reasonable period of time they should be discharged from the CTO to voluntary care.

Assessment and care planning

Findings that relate to assessment and care planning are combined as in practice they co-occur, with ongoing assessment informing care planning. Key findings presented include consumer goals, CTO goals, development of the care plan and recommendations to improve assessment and care planning.

The care plan provides the framework for and documentation of the processes of assessment and care planning, though interestingly most studies did not directly reference the care plan. Of those that did, findings indicated consumers on CTOs had little knowledge about their care plan and what was in it with care plans often out of date and focussed on medication [ 25 , 40 , 41 ]. As the care plan is the means for recording the collaborative care planning process, Owens and Brophy [ 40 ] suggested that out dated care plans indicated that such conversations between clinicians and consumers may not be occurring regularly.

Consumer goals

Care plans should address consumer goals in the broader areas of social connection, community engagement and employment [ 5 ]. In practice however there was a lack of evidence of supporting consumers in these areas [ 42 ]. Instead, care plans were reported to be ‘formal records of deficits, professionally assessed needs, and allocated services’ (p.517) [ 25 ]. Reasons for CTOs were typically referred to as conditions, implying lack of consumer choice, and rarely linked to consumers’ recovery goals. In fact there was little reference to consumers’ goals, with consumers and carers expressing disappointment at the overly medical focus of the CTO and related care package [ 25 , 29 ]. Only one study referenced links between CTO and consumer goals (in this case medication compliance linked with regaining a driver’s licence) [ 43 ]. Brophy et al. highlight the benefit of incorporating a more holistic perspective into the CTO process as ‘offer[ing] a valuable balance against the tendency to “over-medicalise” assessments of mental health problems and risk assessment’ (p.161) [ 44 ]. The same author highlights the diversity of consumers on CTOs as well as diversity in CTO goals or purposes and states that guidelines have tended to presume homogeneity amongst CTO recipients [ 24 ].

For the majority of participants in the included studies the primary purpose of the CTO was medication compliance, which then became the focus of interactions between workers and consumers [ 36 , 45 ]. Workers and family members often linked the need for medication compliance with poor insight and increased risk of harm (to self or others) [ 46 ]. Interestingly, perceptions of risk differed amongst participant groups, with consumers and carers concerns focussed on the distress stemming from mental illness and subsequent social and interpersonal difficulties, and workers focussed on actual harm and potential risk [ 47 ]. Findings indicated that workers had variable thresholds for risk [ 39 ] with a worker in one study questioning what should be considered ‘normal’ , ‘at risk’ or ‘dangerous’ behaviour when informing the need for a CTO [ 45 ]. Other reasons or conditions for CTOs included the requirement to stay in specified accommodation [ 6 , 43 ] and maintain contact with the mental health team [ 29 , 48 ]. Consumer reports of CTO purpose varied with some unclear as to why they were on a CTO or what was being asked of them by services [ 23 , 27 ], some perceiving they were on orders as a result of diagnosis or previous episodes, and reports of consumers and their mental health workers offering different requirements [ 23 , 43 , 49 ].

Whilst Banks et al. [ 48 ] warn that broadening CTO goals would be ‘ethically unsound’ , clarifying the purpose of the CTO and linking CTO goals with consumers’ individual recovery goals was considered necessary and achievable within care planning processes [ 5 , 24 ]. Mental health workers’ stated CTO goals and conditions should complement care and treatment goals set out in the care plan [ 30 ], though workers also expressed scepticism and concern that CTOs could undermine the process of developing consumer led goals [ 50 ]. Given these challenges, Brophy and McDermott [ 24 ] recommend mental health professionals’ working with consumers on CTOs have advanced clinical and interpersonal skills.

Developing the care plan

When exploring findings to support collaborative care planning, it was found consumers often reported little or no opportunity to input into decisions related to the implementation of the CTO [ 25 , 45 , 48 , 51 , 52 ], though reported benefits (for example increased trust) from ‘being heard’ by clinicians, even when their views differed [ 48 ]. Increased input into decision-making was reported by some consumers at later stages of the CTO process, including reviews, as well as other care planning decisions (such as preferences for support options during crisis) [ 48 , 53 ]. One study reported on the lack of impact of advance directives as a means for increased consumer participation, with consumers reporting that their statements were ignored [ 25 ]. Clinicians reported varying levels of consumer involvement in the CTO process, with some stating it was ‘little or none’ , others that it was increased [ 51 ] and some reporting attempts to offer consumers choice and participation in decision-making [ 45 ]. To add to the complexity workers themselves were found to have inconsistent understandings about CTOs [ 23 , 29 ].

Assessment of carer needs and input into care planning varied widely, with some carers choosing to “take a step back” and others reporting “being excluded from decision-making” (p. 1880) [ 29 ]. Some carers reported their involvement in care planning as infrequent, which was seen as contradictory given the high level of care they provided [ 42 ]. Others reported having an increased voice subsequent to the CTO process and feeling that their caring role was more recognised [ 36 ]. Interestingly, some carers reported increased involvement at the initiation of the CTO with less communication from mental health services over time, which was the opposite to reported consumer experiences of increased involvement with time [ 48 , 54 ]. Issues related to confidentiality were cited as barriers to carers receiving information about their relative [ 28 ]. Overall, as consumer participation was reported to be low, increased involvement was recommended at all stages of the CTO process to enhance consumer empowerment [ 48 ]. Authors of a recent study found ‘CTOs were more successful when they were a carefully planned intervention [inclusive of the consumer and their family], rather than where they were made almost as a matter of course’ (p.91) [ 36 ]. Mfoafo-M’Carthy and Williams [ 5 ] went further and suggested mandated treatment could be discussed and presented as an intervention option under an advanced directive with individuals during a period of improved capacity. This approach however was on the proviso that the CTO was part of a more holistic care plan and approach. Currently, the provision of services to address consumers’ broader needs is not a statutory requirement of the CTO, and is dependent on the individual case manager [ 51 ], though Brophy et al. [ 44 ] suggest efforts should be made by case managers to address broader identified needs to meet consumer goals and redress the negative experience consumers often have of being on a CTO [ 43 ].

Care co-ordination

Care co-ordination ‘involves continual communication with [consumers], their carers, and the various professionals and services…fundamental to care co-ordination is the … case manager’ (p.6) [ 4 ]. Case managers can have a significant impact on consumers, who can experience the support as either positive or negative with the potential to ‘either assist or obstruct recovery’ [ 45 , 55 ]. Owens and Brophy [ 40 ] for example, found workers were not making sufficient efforts to manage the risk of recall to hospital or the distress experienced by consumers subsequent to this. Establishing good therapeutic relationships and family involvement are necessary to good care coordination [ 24 ]. The main findings under the theme of care-coordination relate to the therapeutic relationship and impact of coercion on this.

Impact of coercion on the therapeutic relationship

Dilemmas and challenges for workers.

Various findings were reported regarding the impact of the CTO on the relationship between the case manager and consumer. Mullen at al. described it as an ‘apparent paradox that good therapeutic relations seemed to be required for a CTO to be effective’ and considered collaborative relationships integral to the success of a CTO (p. 542) [ 39 ]. Workers in this study spoke of needing to establish relationships based on trust and encouragement, aware that ‘rehabilitation’ could not be forced [ 39 ]. In the same study, highlighting the coercive aspect of CTOs, workers admitted to using threat of return to hospital if consumers were non-compliant with orders [ 7 ]. Brophy and McDermott viewed this dilemma as a daily compromise faced by case managers ‘between acting paternalistically, in what might be understood as the client’s best interests, and a competing requirement to respond to their expressed wishes’ (p. 158) [ 56 ]. Studies show workers are aware of the dilemma of wanting to support a person’s ‘right to self-determination while obtaining the benefits…possible with treatment adherence’ (p. 520) [ 6 ]. Lawn et al. [ 45 ] framed this as a moral dilemma experienced by staff, and found some staff more attuned to the impact of CTOs on consumers and the therapeutic relationship, and others less so. Moral interpretations were found to be made by workers and consumers regarding various issues encountered in the care planning space [ 45 ]. This included workers seeing consumers as ‘wilfully’ stopping medication and consumers reporting the need to overcome a ‘vice’ in order to be discharged from a CTO. These negative framings impacted upon both the care planning relationship (for example workers ‘punishing’ the consumer for not taking medication) and the consumers’ sense of self. Consumers learnt that to be ‘perceived as morally worthy’ , they had to ‘say the right thing’ [ 45 ]. To address this, Lawn et al. highlight the importance of worker empathy in engaging consumers on CTOs and the need for workers to consider ‘the relationship between what is done and how it is done’ (p. 15) [ 45 ]. Interestingly in another study, those workers who viewed CTOs as primarily coercive also reported discomfort in working with consumers on CTOs [ 50 ].

Workers recognised the importance of developing a therapeutic alliance with consumers, and reported on the stress that resulted from working in conditions that at times involved ‘hostility’ , ‘manipulation’ and ‘deceit’ [ 6 ], with one case manager describing their role as sometimes more aligned to correctional services than clinical treatment [ 50 ]. To redress the balance of power, workers have a responsibility to empower consumers by providing clear information about CTO processes and facilitating as much choice and involvement as possible in decision-making at all stages [ 35 , 41 , 48 ]. Workers acknowledged the ‘legal recognition’ of care that came with CTOs placing a greater responsibility on them to effectively engage consumers [ 36 ] as well as the challenges of effective engagement and the intensive nature of support required of person-centred care [ 48 ]. Brophy and McDermott [ 24 ] considered continuity of care important in providing quality care with this client group and suggested psychiatrists take a more central role as they were typically a more stable team member. In other studies however consumers reported more strained relationships with treating doctors, preferring to engage with case managers [ 35 ].

Relational quality

Consumer reports of the impact of the CTO on the relationship with their worker were varied, with some reporting no differences and others remaining angry towards workers [ 6 ]. Consumers reporting positive relationships with workers also appeared to have an overall positive experience of being on a CTO, and associated positive outcomes including improved mental health, support, relationships and occupational gains [ 27 , 43 , 55 ]. Relational aspects mentioned by consumers who reported positive rapport included workers who expressed concern, were helpful, supportive, didn’t view them as patients and with whom they met regularly [ 23 , 35 ]. Lawn et al. [ 45 ] exploring the nuances of the therapeutic relationship between consumers and mental health workers, highlighted the complexity of developing trust within this dynamic. Interestingly, the authors found that whilst mental health workers had the expectation that consumers should trust and engage with them, as they had ‘good intentions’ and were ‘there to help’ , consumers experienced that they were not trusted themselves by mental health professionals. Steun et al. [ 57 ] also discussed the importance of developing reciprocal trusting relationships, with consumers reporting worker availability and support with everyday problems (such as housing, finances and social isolation) enhancing such relationships and positively impacting upon their experience of the ‘restrictive interventions’ of CTOs.

Negative impacts on consumers

Whilst some consumers reported a ‘blurred distinction between formal and informal coercion’ with treatment pressure a usual experience of mental health care (p.6) [ 43 ], others on CTOs experienced contact with mental health services to be more intrusive and coercive than the same contact had been experienced prior to the CTO [ 53 , 58 , 59 ]. The use of persuasion was found to be more common for those on CTOs and resulted in significantly higher levels of perceived coercion. Issues that negatively impacted upon establishing trusting relationships included lack of information from workers [ 48 ] and lack of involvement in decision-making, regularly reported as a lack of information and influence on medication [ 43 , 53 ]. Consumers’ feelings of distrust towards workers was linked to the distress that resulted from the impact of CTOs on their liberty and rights, with interpersonal problems, including relationships with workers, linked to a sense of unhappiness [ 60 ]. Banks et al. [ 48 ] suggest the issue of choice is further complicated by the fact that consumers often retrospectively viewed restrictions in choice positively. Whilst studies reported increased acceptance of CTOs by consumers over time, often related to positive gains [ 6 , 36 , 55 ], even those considered to be ‘generally favourable about the CTO’ still identified negative aspects including feeling restricted, stigmatised, untrusted by mental health workers and a lack of control [ 7 , 61 ]. Three quantitative studies explored consumers’ perceptions of coercion. Though overall consumers on CTOs reported experiencing greater coercion then voluntary consumers and less satisfaction with care [ 58 , 60 ], some consumers found that over time service pressure could be helpful [ 26 ]. McKenna et al. state that a small level of coercion may have a positive impact on therapeutic outcome, though warn that ‘the correct amount of coercion is titrated and then sustained’ (p.155) [ 58 ].

Mixed consumer experience

Of those papers reporting on consumer experience of CTOs in general, the majority reported mixed experiences, with a similar number of findings referencing positive or negative experiences. This variation highlights the complexity and individual response consumers have to being on a CTO. One paper comparing views of consumers from different ethnic backgrounds (Maori and Non-Maori) found few differences [ 62 ]. Dawson et al. [ 63 ] described some consumers as ‘volunteers for compulsion’ , though acknowledged that even those ‘voluntary’ consumers often had a complicated relationship to the CTO with variation in experiences over time. CTOs were seen as favourable to most consumers over hospital stays and often seemed to account for their positive view [ 28 ]. Reported benefits included increased support, a sense of security, improved access to services and hospital avoidance [ 6 , 29 , 48 , 53 , 54 ] with some consumers viewing CTOs ‘as a transitional step from a chaotic to a more stable life’ (p.366) [ 35 ]. One study found no association for consumers between being on a CTO and recovery beliefs [ 64 ], however negative impacts for consumers on CTOs were significant and included, ‘side-effects of enforced medication…an enduring sense of stigma; restrictions on place of residence …limited social and work opportunities; the feeling that others made key decisions about their lives; and not getting better, merely existing’ (p.822) [ 28 ]. Consumers likened their experience of treatment by others to that of a child or criminal [ 23 , 29 ], with some referring to their own home as an institution in the community [ 53 ].

Impact of support type and frequency

Reported support type and frequency varied. Some consumers reported frequent (daily) contact and support with an emotional focus, practical tasks and social engagement, with this type of support related to positive care experiences [ 49 ]. Others reported less frequent contact and dissatisfaction when the focus was primarily on medication [ 51 ]. Given the high level of needs typical to consumers on CTOs, it was surprising that there was little evidence of use of specialised interventions [ 24 ]. Though consumers on CTOs were often unemployed and living in difficult conditions, only a minority were receiving assertive care or input from psychosocial supports [ 40 ]. Brophy et al. [ 24 ] stressed the need for workers to provide psychological, social and occupational interventions and avoid over-focussing on medication. Other interventions proposed to reduce the coercive impact of CTOs and promote consumer participation included the use of advanced directives, shared decision-making and increased access to independent advocates [ 25 , 50 ].

Limited linking with broader services

Though consumers on CTOs typically have complex needs that require linking with various services there was minimal reference to this in the included studies. Light et al. found GPs had a key role with consumers on CTOs as they addressed the persons’ broader health needs, provided mandated psychiatric treatment (depot administration) and ‘enhanced patient care by… building strong therapeutic relationships and ‘normalising’ treatment’ (p.487) [ 65 ]. Interestingly the authors found minimal reference to GPs in CTO literature and policy. Conversely, references to engaging with families were made in the majority of studies, with family members often study participants. Family members were aware of potential dilemmas and tensions that came with CTO use including differing opinions between them and their relative [ 42 , 54 ], though often reported positive benefits of CTOs, such as increased stability for their relatives and increased connection with services and support for them and their family member [ 6 , 7 , 48 ]. Whilst the CTO gave carers evidence that their relatives illness was being taken seriously by services, they remained the primary caregiver with the major responsibility for care. Family members requested increased inclusion from services as they were the frontline support when the system failed to adequately address their relatives’ needs [ 42 ]. Clarity around who to contact, and how to request an emergency review, reassured carers [ 36 ].

Case closure- discharge from CTO

An individual’s autonomy and rights are impacted upon by a CTO, and the aim should be that the person resumes personal control and does not require the CTO [ 44 ], with workers having a responsibility to support consumers towards discharge from treatment orders [ 39 ]. The findings indicated significant confusion around when a consumer should be discharged from a CTO.

Lack of definite criteria for discharge

The majority of qualitative studies did not directly explore discharge. Workers had difficulty identifying optimal indicators for discharging consumers from orders, with differing opinions reported in the multidisciplinary team and factors other than current presentation impacting upon the decision (e.g. the consumers risk profile and workers previous experience of discharge) [ 7 ]. Factors that facilitated discharge included sustained compliance, clinical improvement, reduced risk, greater stability and insight, taking responsibility for treatment and engaging with the treating team [ 7 , 31 , 33 , 34 , 39 ]. Brophy and Ring [ 51 ] found medication compliance and improved insight were linked by workers and the primary basis for discharge, though interestingly, Rugkasa et al. [ 26 ], reporting on quantitative data, found no changes in consumer insight and attitudes to treatment (including adherence to medication) between consumers on CTOs and consumers not on CTOs. Dawson et al. state the lack of ‘definite criterion of success in compulsory community care’ results in ‘the dilemma of discharge’ and queried if long term use of CTOs resulting in hospital avoidance should be considered ‘a successful or an unnecessary (and therefore overly coercive) form of intervention’ (p.250) [ 63 ].

Impact on consumers

Lack of clarity regarding discharge impacted on consumers who reported discharge as difficult to obtain [ 35 ]. Additionally, lack of certainty about the duration of CTOs was experienced negatively by consumers [ 43 , 66 ] with some reporting becoming dependant on the mental health system subsequent to being on orders for prolonged periods [ 61 ]. Consumers reported reasons for compliance with CTOs included avoiding hospital, to prevent another CTO, fear of relapse, family pressure and seeking to gain greater stability [ 6 , 28 , 36 , 67 ]. Based on the lack of clarity regarding discharge, workers need to be more transparent with consumers regarding processes and conditions of discharge [ 7 ].

Benefits of case management

Service utilisation.

Case management aims to reduce the need for service contacts, particularly hospital utilisation [ 4 ]. Dawson et al. [ 63 ] reviewed studies claiming CTOs reduced the need for hospilitisation however found they had not sufficiently accounted for changes in mental health services, introduction of more effective medications or interventions received in the community. For the purpose of this review, given consumers on CTOs are forced to receive treatment, the data was explored regarding CTO impact on facilitating service access according to individual need.

CTO impact on service access and referrals

In summary, studies often stated CTOs facilitated access to mental health professionals and services, with easy access reported as benefits of CTOs by consumers and their carers [ 49 ] [ 41 ]. Increased access to accommodation services was also reported, with accommodation staff reporting that they felt more supported by mental health workers when CTOs were in place [ 39 ]. Conversely, some consumers reported that the negative impact of being on a CTO would mean that they would avoid seeking help in the future [ 55 ]. In other papers, the small numbers of consumers receiving assertive and intensive psychosocial support as well as limited resources in rural areas was highlighted, indicating CTOs do not always enhance access to needed services and supports [ 7 , 40 ]. It was often unclear in the studies if this was a consequence of lack of infra-structure and resources or poor referral and linking.

Health outcomes

Case management has been shown to have a positive impact on health outcomes, though it is acknowledged that measuring such outcomes is complex. Health outcomes include: ‘quality of life, independence, functionality and general well-being’ (p. 13) [ 4 ]. For this theme, data relating to consumer, worker and family perspectives on the usefulness of CTOs in enhancing the above domains for the consumer was explored.

Balancing costs and gains for the consumer

Consumer perspective.

Consumer perspectives on the usefulness of CTOs varied. Some consumers considered CTOs to be a barrier to their recovery and negatively impacting on their sense of self-worth, self-direction and relations to others in the broader community [ 49 , 53 , 61 ]. Being on a CTO was experienced as humiliating, embarrassing and more stigmatising than having a diagnosis of mental illness [ 41 , 51 , 53 ]. Others reported improved self-worth and a sense of empowerment linked to functional gains, improved relationships and success in finding employment [ 7 , 55 ]. Interestingly, when positive gains were reported, there was a lack of consistency regarding what facilitated improvements, with some reporting medication adherence and others increased support as primary facilitators [ 23 ]. Furthermore, some family members reported that gains such as employment were a result of the individuals own efforts rather than service support [ 25 ].

Worker and family perspective

Though some workers reported observing positive gains including, risk reduction, relapse detection, hospital prevention and housing stability, they challenged whether being on a CTO enhanced social inclusion, reporting a lack of gain in meaningful occupation and no positive changes in stigma or discrimination [ 30 ]. Workers were generally reluctant to attribute positive changes to the CTO alone [ 29 , 51 ]. Similarly, family members thought increased and regular engagement with workers, rather than the powers of the CTO, was what resulted in improved compliance [ 54 ]. Furthermore though family members often reported improvements in their relatives social and occupational functioning, they were critical when the focus of care was symptom amelioration with medication, with one family member describing such care resulting in their child being ‘simply “contained” at home rather than hospital’ (p.1880) [ 29 ]. Positive impacts for family members included improved family relations, a sense of relief, increased safety [ 54 ] and feeling empowered and supported when actively involved in the CTO process [ 42 ].

Broader issues that support effective case management

Various broader issues impact upon the effectiveness of case management and consumer outcomes. These include resources, manageable caseloads, effective linking with stakeholders from different service sectors and continuity of care [ 4 ]. These broader service issues were referred to in several of the included papers. Limited resources and service availability were reported to impact on decisions around CTO use as well as result in increased use of CTOs to facilitate early discharge from inpatient services [ 31 , 37 , 48 ] and access to limited inpatient beds [ 29 , 31 ]. Psychiatrists reported high caseloads, insufficient time available to spend with consumers and reduced service options in rural areas [ 7 ].

Few studies reported on links with a broad range of stakeholders. Light et al. [ 65 ], exploring links with primary care, found a lack of integration between primary care and mental health services, though reported some instances where systems were established to enhance shared care between GPs and mental health services. Gibbs et al. [ 28 ] reported a lack of linking of mental health teams with supported accommodation services. Even within mental health services, workers referred to a ‘silo-mentality’ with poor communication and poor linking between inpatient and outpatient services negatively impacting upon consumers [ 31 , 37 , 40 ]. Lack of continuity of care was also found to lead to increased tensions for workers, for example when workers were required to adhere to CTO conditions put in place by others [ 48 , 67 ].

The studies included in this review provide rich data that relates to consumers, carers and mental health workers perspectives and experiences of care coordination and care planning for consumers on CTOs in community mental health care settings across a range of countries. Many of the issues also relate more broadly to those individuals whom have a mental illness and may present with complex needs. Models of case management differ in terms of staffing, caseload number, contact frequency, length and availability of service and treatment options and responsibilities [ 68 ]. Understanding the various issues that impact upon the implementation of CTOs, including service delivery models and resources is important in order to inform best practice [ 24 ].

A key finding of this review was the lack of connection between CTO goals (which are service driven) and recovery goals (which are consumer driven), with minimal reference made to care plans documenting the care planning process. Furthermore given the lack of consumer input and knowledge of care plans, it was difficult to substantiate consumer involvement [ 40 ]. Several papers identified the need to link CTO goals to treatment and consumer goals [ 5 , 24 , 30 ]. Such linking would promote collaborative care planning, facilitate care that is person-centred (and not overly focussed on service goals of medication compliance) and promote service responsibility and support with the consumers’ broader goals, including discharge from orders. Even linking CTO purpose to treatment goals would enhance worker accountability.

Lack of clarity of the purpose of CTOs further complicates linking CTO and consumer goals. Kisely and O’Reilly question if the purpose of the CTO is to ‘reduce revolving-door admissions, provide a less restrictive alternative to involuntary admission, prevent violence by people with severe mental illness, or increase stability and promote recovery’ (p.415) [ 69 ]. The CTO purpose will impact upon both the focus of interventions and expected outcomes including ‘hospital use, perceived coercion, violent acts and quality of life’ (p.415) [ 69 ]. This is important given the lack of clarity regarding discharge from orders. CTO processes of assessment, review and discharge from orders are incorporated into the case management role. In Australia, mental health tribunal reviews are conducted 12 monthly. In addition to these formal reviews, care coordinators are required to regularly review an individual’s care (typically 3 monthly). This multidisciplinary review process provides regular opportunities to review changes against both CTO and individual recovery goals, ensure required supports are in place, prompt consideration of discharge and ensure consumers are not left languishing on CTOs. There was little evidence of regular reviews and early discharge from CTOs in the included studies and only three studies that recruited all key stakeholders involved in the care planning relationship. Further exploration of how case management can better incorporate and manage issues related to CTOs is warranted.

A core component of care planning is identifying and implementing relevant evidence based interventions [ 4 ], yet none of the included studies specifically examined the usefulness of focussed interventions. Studies exploring the use of crisis planning and advanced directives identified in the search specifically excluded individuals on CTOs [ 70 , 71 ]. Increased stakeholder participation (of workers, consumers and carers) during mental health tribunals was recommended to enhance decision-making related to CTOs [ 24 ], with a particular focus on promoting consumer participation in early stages of CTO implementation [ 48 ]. Shared decision-making (SDM) is a core concept in care-planning and builds on person centeredness by promoting mutual expertise and determining the individuals ‘preferred role in the decision-making process’ [ 19 ]. In mental health care, SDM is often referred to in the context of supporting consumers’ to make informed decisions related to medication [ 72 , 73 ]. A recent randomised trial of a patient decision aid for individuals with PTSD, reported increased consumer knowledge of their condition and reduced conflict regarding treatment choice [ 74 ]. Recent studies aiming to enhance medication compliance of consumers with mental health problems have explored the use of peer workers [ 75 ], motivational interviewing [ 76 ] and treatment adherence therapy [ 77 ] with results indicating some success. Given consumer dissatisfaction with their level of involvement in care planning, decisions related to the CTO process, and over focus on medication, focussed interventions to enhance decision-making and medication compliance for consumers’ on CTOs are important areas to further explore.

Various recommendations for practice were made in the included studies. Mfoafa-M’Carthy and Shera considered ‘CTOs should be a voluntary contractually based community treatment option of last resort’ (p.76) [ 68 ] and suggested providing less coercive support options for people with serious mental illness, including intensive case management and use of advanced directives to increase collaborative care planning. Brophy and McDermott [ 24 ] took a more pragmatic approach, and acknowledging CTOs were part of current mental health care, sought key stakeholders perspectives on how to “do CTOs well”. Identified principles of good practice included: taking a human rights perspective (being aware of peoples’ right to self-determination); being transparent regarding CTO goals and purposes and linking these to treatment goals; providing quality services (including continuity of care and evidence-based interventions); facilitating involvement of consumers and their carers’ in the CTO process and development and use of direct practice skills (including linking with support staff and development of advanced interpersonal skills) [ 24 ]. Similarly, Lehssier et al. [ 19 ] emphasised the need for case managers to have advanced practitioner skills, such as SDM and motivational interviewing.

Stuen et al. [ 43 ] found an assertive engagement approach with psychosocial interventions was as beneficial as the CTO in engaging ‘reluctant consumers’ in treatment. Similarly, Churchill et al. [ 78 ] conducted a comprehensive review of research of experiences of CTO use internationally and recommended exploring the ‘potential therapeutic gains [that] might be better delivered by enhancing the quality and assertiveness of community treatment for high risk patients’ through, for example, ACT’. Core elements of ACT include ‘assertive engagement, small caseloads [and] focus on supporting broad life domains’ (p.11) [ 43 ]. Whilst this approach has clear benefits in engaging consumers around their identified goals, referral to services that are able to provide psychosocial support is more widely available and should be considered more often than was evident in the studies [ 24 ]. In addition to linking with broader services, the recovery literature recommends a focus on linking consumers with their personal and community resources to support everyday connections and reduce dependence on health services [ 79 ]. There was little reference of such linking in the included studies other than with consumers’ families, and a few reports of links with GPs and accommodation services [ 39 , 65 ].

Most papers made reference to the coercive nature of CTOs and potential impact on the therapeutic relationship, which is key to effective case management. Some authors whom have published extensively on involuntary psychiatric treatment have backgrounds in socio-legal research and/or social work. Brophy and McDermott for example used critical social work theory to explore best practice with individuals on CTOs, and highlighted the role this theory has in ‘encourag[ing] social workers to be mindful of the imbalance of power that is inherent in all social work practice’ (p.74) [ 24 ]. In clinical practice, case managers have varied professional backgrounds and may be less sensitive to some of the issues of care and control inherent in the care relationship, as these issues may not be addressed in undergraduate training. Lawn et al. highlight the potential for the relationship between mental health workers and consumers to ‘either assist or obstruct recovery’ (p.14) [ 45 ]. Key components of the therapeutic relationship in the context of forced treatment included empathic skills and trusting relationships [ 45 ]. Consumers who trust health services and workers have better clinical outcomes and report increased positive care experiences [ 80 ]. Trusting relationships are considered ‘a prerequisite to the negotiation of reciprocal agreements [which], in turn, lead to patient-centred care’ (p.886) [ 81 ]. ‘[Worker] characteristics that have been shown to encourage patient trust [include] ability (also termed competence), benevolence, integrity, respect, and honesty’ (p.7) [ 80 ]. The role these relational factors have in facilitating therapeutic alliance has a longstanding and robust evidence base, however Davidson and Chan [ 82 ] warn that it should not be assumed that such skills are already being practiced, and that empathy skills should be developed and maintained with targeted training, reflection and supervision [ 45 , 82 ].

Limitations

Appraisal and data extraction was conducted by only one author, though opinion was sought from a 2nd reviewer to clarify studies for inclusion. A limitation of qualitative studies is a lack of generalisability to broader contexts, though the integrative review method of synthesising data from different studies conducted in different locations helps address this. Quantitative studies were not reported in detail, with the decision made to utilise these data to augment the more in-depth qualitative findings in order to best answer the research question.

The effectiveness of case management will be influenced by various factors, including the quality of relationship established between consumers and workers and the type of support offered to consumers. These factors are interrelated and dependent on good assessment of needs, as well as resources available in the community (inclusive of housing, financial security, substance abuse programs and supports to facilitate social connections) [ 38 , 68 ]. As Davidson [ 83 ] points out, ‘personal choice plays a very limited role, … when the person has very limited, if any, choices to begin with’ (p.366) [ 83 ]. CTO legislation, service delivery models and resource availability all impact upon the implementation of CTOs and need to be considered when exploring best practices [ 24 ] {Brophy, 2013 #807; }. Changes at the level of clinical practice however can still positively impact on consumers’ experiences of CTOs. The conflicting processes of reciprocity, which involves mutual trust, and authority in current mental health practice needs to be recognised [ 81 ] with person-centred approaches requiring core practitioner and communication skills including empathy, trust and hope [ 19 ]. Workers should aim to engage in the care planning process in ways that enhance consumer experience (increased consumer involvement and addressing identified consumer needs) whilst being sensitive to the ‘control and care’ dynamic of the relationship.

Abbreviations

Community treatment order

Foot C, Gilburt H, Dunn P, Jabbal J, Seale B, Goodrich J, et al. People in control of their own health and care: the state of involvement. The Kings Fund. 2014. https://www.kingsfund.org.uk/sites/files/kf/field/field_publication_file/people-in-control-of-their-own-healthand-care-the-state-of-involvement-november-2014.pdf . Accessed 20 Nov 2015.

Google Scholar  

Hibbard J, Gilburt H. Supporting people to manage their health: an introduction to patient activation. The Kings Fund. 2014. http://www.kingsfund.org.uk/publications/supporting-people-manage-their-health . Accessed 20 Nov 2015.

Goodwin N, Lawton-Smith S. Integrating care for people with mental illness: the Care Programme Approach in England and its implications for long-term conditions management. Int J Integr Care. 2010;10:1–10. doi: 10.5334/ijic.516 .

Ross S, Curry N, Goodwin N. Case management: what it is and how it can best be implemented. The Kings Fund. 2011. http://www.kingsfund.org.uk/sites/files/kf/Case-Management-paper-The-Kings-Fund-Paper-November-2011_0.pdf . Accessed 20 Nov 2015.

Mfoafo-M’Carthy M, Williams CC. Coercion and community treatment orders (CTOs): one step forward, two steps back? Can J of Community Ment Health. 2010;29(1):69–80. doi: 10.7870/cjcmh-2010-0006 .

Article   Google Scholar  

O’Reilly RL, Keegan DL, Corring D, Shrikhande S, Natarajan D. A qualitative analysis of the use of community treatment orders in Saskatchewan. Int J Law Psychiatr. 2006;29(6):516–24. doi: 10.1016/j.ijlp.2006.06.001 .

Gibbs A, Dawson J, Mullen R. Community treatment orders for people with serious mental illness: A New Zealand study. Bri J Soc Work. 2006;36(7):1085–100. doi: 10.1093/bjsw/bch392 .

Bee P, Brooks H, Fraser C, Lovell K. Professional perspectives on service user and carer involvement in mental health care planning: a qualitative study. Int J Nurs Studies. 2015;52(12):1834–45. doi: 10.1016/j.ijnurstu.2015.07.008 .

Tambuyzer E, Van Audenhove C. Is perceived patient involvement in mental health care associated with satisfaction and empowerment? Health Expect. 2015;18(4):516–26. doi: 10.1111/hex.12052 .

Article   PubMed   Google Scholar  

World Health Organization. Mental Health Care Law. Geneva: Ten Basic Principles; 1996. http://www.who.int/mental_health/media/en/75.pdf . Accessed 12 Jan 2016.

Arya D. Compulsory treatment and patient responsibility. Australas Psychiatry. 2012;20(6):472–7. doi: 10.1177/1039856212460284 .

Lawton-Smith S, Dawson J, Burns T. Community treatment orders are not a good thing. Br J Psychiatry. 2008;193(2):96–100. doi: 10.1192/bjp.bp.107.049072 .

Light E, Kerridge I, Ryan C, Robertson M. Community treatment orders in Australia: rates and patterns of use. Australas Psychiatry. 2012;20(6):478–82. doi: 10.1177/1039856212466159 .

Brophy L, Hodges C, Halloran K, Grigg M, Swift M. Impact of care coordination on Australia’s mental health service delivery system. Aust Health Rev. 2014;38(4):396–400. doi: 10.1071/AH13181 .

Kisely S, Hall K. An updated meta-analysis of randomized controlled evidence for the effectiveness of community treatment orders. Canadian J Psychiatry. 2014;59(10):561–4.

Atkinson JM, Garner HC. Least restrictive alternative - advance statements and the new mental health legislation. Psychiatr Bull. 2002;26(7):246–7. doi: 10.1192/pb.26.7.246 .

Mustafa FA. Why clinicians still use community treatment orders. Acta Psychiatr Scand. 2015;132(4):309–10. doi: 10.1111/acps.12463 .

Article   CAS   PubMed   Google Scholar  

Russo J, Wallcraft J. Resisting variables - service user/survivor perspectives on researching coercion. Coercive Treat Psychiatry: Clinical Leg Ethical Aspects. 2011;13:213–34. doi: 10.1002/9780470978573 .

Lhussier M, Eaton S, Forster N, Thomas M, Roberts S, Carr SM. Care planning for long-term conditions - a concept mapping. Health Expect. 2015;18(5):605–24. doi: 10.1111/hex .

Smith L, Newton R. Systematic review of case management. Aust N Z J Psychiatry. 2007;41(1):2–9. doi: 10.1080/00048670601039831 .

Whittemore R, Knafl K. The integrative review: updated methodology. J Adv Nurs. 2005;52(5):546–53. doi: 10.1111/j.1365-2648.2005.03621.x .

Joanna Briggs Institute. Reviewers’ Manual. The Joanna Briggs Institute. 2014. http://joannabriggs.org/assets/docs/sumari/reviewersmanual-2014.pdf . Accessed 4 Dec 2015.

Gjesfjeld C, Kennedy M. Outpatient commitment on the ground: listening to consumers and providers. Advances Soc Work. 2011;12(2):152–63.

Brophy L, McDermott F. Using social work theory and values to investigate the implementation of community treatment orders. Aust Soc Work. 2013;66(1):72–85. doi: 10.1080/0312407X.2011.651727 .

Ridley J, Hunter S. Subjective experiences of compulsory treatment from a qualitative study of early implementation of the Mental Health (Care & Treatment) (Scotland) Act 2003. Health Soc Care Community. 2013;21(5):509–18. doi: 10.1111/hsc.12041 .

Rugkasa J, Molodynski A, Yeeles K, Montes M, Visser C, Burns T. Community treatment orders: clinical and social outcomes, and a subgroup analysis from the OCTET RCT. Acta Psychiatr Scand. 2015;131(5):321–9. doi: 10.1111/acps.12373 .

Schwartz K, O’Brian A, Morel V, Armstrong M, Fleming C, Moore P. Community treatment orders: the service user speaks - exploring the lived experience of community treatment orders. Int J Psychos Rehab. 2010;15:39–50.

Gibbs A, Dawson J, Forsyth H, Mullen R, Tonu Tanga TO. Maori experience of community treatment orders in Otago, New Zealand. Aust NZ J Psychiatry. 2004;38(10):830–5. doi: 10.1111/j.1440-1614.2004.01468.x .

Canvin K, Rugkasa J, Sinclair J, Burns T. Patient, psychiatrist and family carer experiences of community treatment orders: qualitative study. Soc Psychiatry Psychiatr Epidemiol. 2014;49(12):1873–82. doi: 10.1007/s00127-014-0906-0 .

Taylor JA, Lawton-Smith S, Bullmore H. Supervised community treatment: does it facilitate social inclusion? A perspective from approved mental health professionals (AMHPs). Ment Health Soc Inclusion. 2013;17(1):43–8. doi: 10.1108/20428301311305304 .

DeRidder R, Molodynski A, Manning C, McCusker P. Rugka°sa J. Community treatment orders in the UK 5 years on: a repeat national survey of psychiatrists. B J Psych Bull. 2016;40(3):119–23. doi: 10.1192/pb.bp.115.050773 .

Coyle D, Macpherson R, Foy C, Molodynski A, Biju M, Hayes J. Compulsion in the community: mental health professionals’ views and experiences of CTOs. Psychiatrist. 2013;37(10):315–21. doi: 10.1192/pb.bp.112.038703 .

Manning C, Molodynski A, Rugkasa J, Dawson J, Burns T. Community treatment orders in England and Wales: national survey of clinicians’ views and use. Psychiatrist. 2011;35(9):328–33. doi: 10.1192/pb.bp.110.032631 .

Romans S, Dawson J, Mullen R, Gibbs A. How mental health clinicians view community treatment orders: A national New Zealand survey. Aust NZ J Psychiatry. 2004;38(10):836–41.

Gibbs A, Dawson J, Ansley C, Müllen R. How patients in New Zealand view community treatment orders. J Ment Health. 2005;14(4):357–68. doi: 10.1080/09638230500229541 .

Stroud J, Banks L, Doughty K. Community treatment orders: learning from experiences of service users, practitioners and nearest relatives. J Ment Health. 2015;24(2):88–92. doi: 10.3109/09638237.2014.998809 .

Christy A, Petrila J. Involuntary outpatient commitment in Florida: case information and provider experience and opinions. Int J Forensic Ment Health. 2009;8(2):122–30. doi: 10.1080/14999010903199340 .

O’Reilly R, Dawson J, Burns T. Best practices in the use of involuntary outpatient treatment. Psych Serv. 2012;63(5):421–3. doi: 10.1176/appi.ps.20120p421 .

Mullen R, Dawson J, Gibbs A. Dilemmas for clinicians in use of Community Treatment Orders. Int J Law Psych. 2006;29(6):535–50. doi: 10.1016/j.ijlp.2006.09.002 .

Owens N, Brophy L. Revocation of Community Treatment Orders in a mental health service network. Australas Psychiatry. 2013;21(1):46–50. doi: 10.1177/1039856212470504 .

Light EM, Robertson MD, Boyce P, Carney T, Rosen A, Cleary M, et al. The lived experience of involuntary community treatment: a qualitative study of mental health consumers and carers. Australas Psychiatry. 2014;22(4):345–51. doi: 10.1177/1039856214540759 .

Ridley J, Hunter S, Rosengard A. Partners in care?: views and experiences of carers from a cohort study of the early implementation of the Mental Health (Care & Treatment) (Scotland) Act 2003. Health Soc Care Community. 2010;18(5):474–82. doi: 10.1111/j.1365-2524.2010.00920.x .

Stuen HK, Rugkåsa J, Landheim A, Wynn R. Increased influence and collaboration: a qualitative study of patients’ experiences of community treatment orders within an assertive community treatment setting. BMC Health Serv Res. 2015. doi: 10.1186/s12913-015-1083-x .

PubMed   PubMed Central   Google Scholar  

Brophy L, Campbell J, Healy B. Dilemmas in the case manager’s role: implementing involuntary treatment in the community. Psychiatry Psychol Law. 2003;10(1):154–63. doi: 10.1375/pplt.2003.10.1.154 .

Lawn S, Delaney T, Pulvirenti M, Smith A, McMillan J. A qualitative study examining the presence and consequences of moral framings in patients’ and mental health workers’ experiences of community treatment orders. BMC Psychiatry. 2015;6(15):275. doi: 10.1186/s12888-015-0653-0 .

Dawson J, Mullen R. Insight and use of community treatment orders. J Ment Health. 2008;17(3):269–80. doi: 10.1080/09638230802052187 .

Light E, Robertson M, Boyce P, Carney T, Rosen A, Cleary M, et al. The many faces of risk: a qualitative study of risk in outpatient involuntary treatment. Psychiatr Serv. 2015;66(6):649–52. doi: 10.1176/appi.ps.201400109 .

Banks LC, Stroud J, Doughty K. Community treatment orders: exploring the paradox of personalisation under compulsion. Health Soc Care Community. 2016;24(6):e181–90. doi: 10.1111/hsc.12268 .

Stensrud B, Hoyer G, Granerud A, Landheim AS. “Life on hold”: A qualitative study of patient experiences with outpatient commitment in two Norwegian counties. Issues Ment Health Nurs. 2015;36(3):209–16. doi: 10.3109/01612840.2014.955933 .

Article   PubMed   PubMed Central   Google Scholar  

Sullivan WP, Carpenter J, Floyd DF. Walking a tightrope: case management services and outpatient commitment. J Soc Work Disabil Rehabil. 2014;13(4):350–63. doi: 10.1080/1536710X.2014.961116 .

Brophy L, Ring D. The efficacy of involuntary treatment in the community: consumer and service provider perspectives. Soc Work Ment Health. 2004;2:157–74. doi: 10.1300/J200v02n02_10 .

Fahy GM, Javaid S, Best J. Supervised community treatment: patient perspectives in two Merseyside mental health teams. Ment Health Rev J. 2013;18(3):157–64. doi: 10.1108/MHRJ-11-2012-0030 .

Riley H, Hoyer G, Lorem GF. ‘When coercion moves into your home’-a qualitative study of patient experiences with outpatient commitment in Norway. Health Soc Care Community. 2014;22(5):506–14. doi: 10.1111/hsc.12107 .

Mullen R, Gibbs A, Dawson J. Family perspective on community treatment orders: a New Zealand study. Int J Soc Psychiatry. 2006;52(5):469–78.

Mfoafo-M’Carthy M. Community treatment orders and the experiences of ethnic minority individuals diagnosed with serious mental illness in the Canadian mental health system. Int J Equity Health. 2014;13(1):69. doi: 10.1186/s12939-014-0069-3 .

Brophy L, McDermott F. What’s driving involuntary treatment in the community? The social, policy, legal and ethical context. Australas Psychiatry. 2003;11(1):S84–8.

Stuen HK, Rugkasa J, Landheim A, Wynn R. Increased influence and collaboration: a qualitative study of patients’ experiences of community treatment orders within an assertive community treatment setting. BMC Health Serv Res. 2015;15(1):409. doi: 10.1046/j.1038-5282.2003.02020.x .

McKenna B, Simpson A, Coverdale J. Outpatient commitment and coercion in New Zealand: a matched comparison study. Int J Law Psychiatry. 2006;29:145–58. doi: 10.1016/j.ijlp.2004.07.004 .

Newton-Howes G, Banks D. The subjective experience of community treatment orders: patients’ views and clinical correlations. Int J Soc Psychiatry. 2014;60(5):474–81. doi: 10.1177/0020764013498870 .

Newton-Howes G. A factor analysis of patients’ views of compulsory community treatment orders: the factors associated with detention. Psychiatry Psychol Law. 2013;20(4):519–26. doi: 10.1080/13218719.2012.715827 .

Gibbs A. Coping with compulsion: women’s views of being on a community treatment order. Aust Soc Work. 2010;63(2):223–33.

Newton-Howes G, Lacey CJ, Banks D. Community treatment orders: the experiences of non-Maori and Maori within mainstream and Maori mental health services. Soc Psychiatry Psychiatr Epidemiol. 2014;49(2):267–73. doi: 10.1007/s00127-013-0734-7 .

Dawson J, Romans S, Gibbs A, Ratter N. Ambivalence about community treatment orders. Int J Law Psychiatry. 2003;26(3):243–55. doi: 10.1016/S0160-2527(03)00035-9 .

Patterson T, Mullen R, Gale C, Gray A. Compulsory community treatment and patients’ perception of recovery in schizophrenia. Australas Psychiatry. 2011;19(5):431–3. doi: 10.1080/10398562.2011.603330 .

Light E, Kerridge I, Robertson M, Boyce P, Carney T, Rosen A, et al. Involuntary psychiatric treatment in the community: general practitioners and the implementation of community treatment orders. Aust Fam Physician. 2015;44(7):485–9.

PubMed   Google Scholar  

Rolfe T, Sheehan B, Davidson R. Are consumers on community treatment orders informed of their legal and human rights? A West Australian study. Int J Ment Health Nurs. 2008;17(1):36–43. doi: 10.1111/j.1447-0349.2007.00509.x .

Greenberg D, Mazar J, Brom D, Barel Y. Involuntary Outpatient Commitment: a naturalistic study of its use and a consumer survey at one community mental health center in Israel. Med Law. 2005;24:95–110.

Mfoafo-M’Carthy M, Shera W. Beyond community treatment orders: empowering clients to achieve community integration. Int J Ment Health. 2012;41(4):62–81.

Kisely S, O’Reilly R. Reappraising community treatment orders - can there be consensus? Med J Aust. 2015;202(8):415–7. doi: 10.5694/mja14.00663 .

Borschmann R, Trevillion K, Henderson R, Rose D, Szmukler G, Moran P. Advance statements for borderline personality disorder: a qualitative study of future crisis treatment preferences. Psychiatr Serv. 2014;65(6):802–7. doi: 10.1176/appi.ps.201300303 .

Thornicroft G, Farrelly S, Szmukler G, Birchwood M, Waheed W, Flach C, et al. Clinical outcomes of Joint Crisis Plans to reduce compulsory treatment for people with psychosis: a randomised controlled trial. Lancet. 2013;381(9878):1634–41. doi: 10.1016/S0140-6736(13)60105-1 .

Drake RE, Deegan PE, Rapp C. The promise of shared decision making in mental health. Psychiatr Rehabil J. 2010;34(1):7–13. doi: 10.2975/34.1.2010.7.13 .

Deegan PE, Drake RE. Shared decision making and medication management in the recovery process. Psychiatr Serv. 2006;57(11):1636–9. doi: 10.1176/appi.ps.57.11.1636 .

Watts BV, Schnurr PP, Zayed M, Young-Xu Y, Stender P, Llewellyn-Thomas H. A randomized controlled clinical trial of a patient decision aid for posttraumatic stress disorder. Psychiatr Serv. 2015;66(2):149–54. doi: 10.1176/appi.ps.201400062 .

Thornicroft G, Slade M. New trends in assessing the outcomes of mental health interventions. World Psychiatry. 2014;13(2):118–24. doi: 10.1002/wps.20114 .

Barkhof E, Meijer CJ, De Sonneville LMJ, Linszen DH, De Haan L. The effect of motivational interviewing on medication adherence and hospitalization rates in nonadherent patients with multi-episode schizophrenia. Schizophr Bull. 2013;39(6):1242–51. doi: 10.1093/schbul/sbt138 .

Staring ABP, Van Der Gaag M, Koopmans GT, Selten JP, Van Beveren JM, Hengeveld MW, et al. Treatment adherence therapy in people with psychotic disorders: randomised controlled trial. Br J Psychiatry. 2010;197(6):448–55. doi: 10.1192/bjp.bp.110.077289 .

Churchill R, Owen G, Singh S, Hotopf M. International Experiences of Using Community Treatment Orders: London: Department of Health and Institute of Psychiatry of King’s College London. 2007. http://psychrights.org/research/Digest/OutPtCmmtmnt/UKRptonCTO.pdf . Accessed 4 Jan 2015.

Mezzina R. Community mental health care in Trieste and beyond: an “open door-no restraint” system of care for recovery and citizenship. J Nerv Ment Dis. 2014;202(6):440–5. doi: 10.1097/NMD.0000000000000142 .

Meyer SB, Ward PR. Do your patients trust you?: a sociological understanding of the implications of patient mistrust in healthcare professionals. Australas Med J. 2008;1(1). https://doaj.org/article/2cc0c8dd6e0a4049a069cbbdf0740304 .

Slade M, Amering M, Farkas M, Hamilton B, O’Hagan M, Panther G, et al. Uses and abuses of recovery: implementing recovery-oriented practices in mental health systems. World Psychiatry. 2014;13(1):12–20. doi: 10.1002/wps.20084 .

Davidson L, Chan KKS. Common factors: Evidence-based practice and recovery. Psychiatr Serv. 2014;65(5):675–7. doi: 10.1176/appi.ps.201300274 .

Davidson L. Living recovery. Epidemiol Psych Sci. 2012;21(4):365–6. doi: 10.1017/S2045796012000169 .

Article   CAS   Google Scholar  

Download references

Acknowledgements

The authors would like to express appreciation and thanks to Raechel Damarell, Senior Librarian for Medicine, Nursing and Health Sciences, for her invaluable help with developing the search strategy and searching and Dr Adam Gerace, Research Fellow, School of Nursing & Midwifery, for advice regarding appraisal of quantitative studies.

There was no funding. The paper was completed during the first Author’s PhD candidature.

The datasets supporting the conclusions of this article are included within the article (and its Additional files 1 and 2 ).

Authors’ contributions

SD, EMC, SL and AS had input into study design, manuscript review and approval of final manuscript. SD was responsible for study selection (with input from EMC), appraisal, analysis and manuscript writing.

Authors’ information

SD is an Occupational Therapist who has worked in community mental health settings in the UK and Australia for 20 years and is currently doing a PhD on care planning for consumers on CTOs. EMC, SL and AS all have extensive experience in mental health services research, including research into care planning and CTOs.

Competing interests

The authors declare that they have no competing interests.

Consent for publication

Not applicable.

Ethics approval and consent to participate

Author information, authors and affiliations.

School of Nursing & Midwifery, Flinders University, GPO Box 2100, Adelaide, 5001, Australia

Suzanne Dawson & Eimear Muir-Cochrane

School of Medicine, Flinders University, Adelaide, Australia

Sharon Lawn

School of Health Sciences, Nursing, City University London, London, UK

Alan Simpson

You can also search for this author in PubMed   Google Scholar

Corresponding author

Correspondence to Suzanne Dawson .

Additional files

Additional file 1:.

Search strategy. (DOCX 22 kb)

Additional file 2:

Details of included studies. (DOC 142 kb)

Rights and permissions

Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/ ), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated.

Reprints and permissions

About this article

Cite this article.

Dawson, S., Lawn, S., Simpson, A. et al. Care planning for consumers on community treatment orders: an integrative literature review. BMC Psychiatry 16 , 394 (2016). https://doi.org/10.1186/s12888-016-1107-z

Download citation

Received : 18 March 2016

Accepted : 01 November 2016

Published : 10 November 2016

DOI : https://doi.org/10.1186/s12888-016-1107-z

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

• Community Mental Health
• Community Treatment Orders
• Case Management
• Care Planning

BMC Psychiatry

ISSN: 1471-244X

• Submission enquiries: [email protected]
• General enquiries: [email protected]

Qualitative approaches in nursing research. The centrality of caring: a case study

• PMID: 8247705

This chapter has provided a rudimentary example of an exploratory/descriptive case study, utilizing phenomenological methods of data analysis. As discussed in the previous chapter, clearly delineated methods for case studies are not prevalent in the same way that other research methods are. The clear and fundamental design of this case study was purposeful as a demonstration of the utility of the method in day-to-day nursing. The aesthetic quality of the case study method is its simplicity of design. It is critical to note that the simplicity does not decrease the rigor or scientific merit of the process or outcome; in fact, an opposite argument could be made. The reporting style utilized was traditional so that the method could be clearly understood and compared to other research methods.

Publication types

• Case Reports
• HIV Infections / nursing*
• HIV Infections / psychology
• Medical Records*
• Nurse-Patient Relations
• Nursing Methodology Research / methods*
• Terminal Care

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

• Publications
• Account settings

Preview improvements coming to the PMC website in October 2024. Learn More or Try it out now .

• Advanced Search
• Journal List
• v.11(12); 2021

Original research

Reflecting on experiences of care: an exploratory qualitative descriptive study of the perspectives of stroke survivors, families and staff, caroline bulsara.

1 School of Nursing and Midwifery, The University of Notre Dame Australia, Fremantle, Western Australia, Australia

2 Insitute for Health Research, The University of Notre Dame Australia, Fremantle, Western Australia, Australia

Rosemary Saunders

3 School of Nursing and Midwifery, Edith Cowan University, Joondalup, Western Australia, Australia

Laura Emery

Christopher etherton-beer.

4 School of Medicine and Pharmacology, The University of Western Australia, Perth, Western Australia, Australia

5 WA Centre for Health and Ageing, The University of Western Australia, Perth, Western Australia, Australia

Associated Data

bmjopen-2020-047559supp001.pdf

No data are available.

The aim of this study was to identify barriers and enablers from the perspectives of stroke survivors, carers and staff to understand the experiences of care.

The study used a qualitative descriptive methodology and employed semistructured interview technique.

A metropolitan stroke rehabilitation unit in Western Australia providing rehabilitation services for inpatients and outpatients.

Participants

Overall, 10 participants (four staff, four stroke survivors and two primary carers) were interviewed. Transcripts were analysed using thematic analysis.

Experiences of care focused on lack of time, urgency to regain mobility, postshock recovery, uncertainty about the future and the importance of accepting help once home. There was a degree of mismatch between staff experiences of the reality of what can be provided and the experiences and expectations of stroke survivors and families. However, the benefits of a specialised rehabilitation unit were found to contribute to a positive patient experience overall. The specialised unit demonstrated that services must optimise staff time with patients and carers in the poststroke rehabilitation journey to ensure benefits for the long-term well-being for both.

Seeking patient, family and staff experiences of care can provide valuable insights into facilitating better patient, family and staff engagement for preparation for home-based rehabilitation for stroke survivors and their caregivers. Further research with a larger sample across diverse hospital settings would provide even greater insight into strategies to best address the reality of rehabilitation care and readiness of patients when returning home to the community.

Strengths and limitations of this study

• The balance of in-depth opinions between a small sample of hospital staff and stroke survivors and carers provided a more holistic picture of the convergences and contrasts of a patient rehabilitation journey in a single specialised stroke rehabilitation unit.
• This study was a small, exploratory qualitative study but although the sample was small, we did reach saturation.
• The sample represented stroke survivors, family carers and staff from a single specialist rehabilitation hospital. Thus, the findings may not be applicable to those of other general hospital populations providing non-specialised stroke rehabilitation care.

Introduction

Stroke is a leading cause of death and disability globally with the burden of stroke the greatest on people under 70 years. 1 Almost 35% of Australians who experienced a stroke are left with some resultant disability, 64% need assistance with healthcare, 58% with mobility and 47% with self-care. 2 Thus, there remains an evident need to provide adequate support and services after event to individuals who have had a stroke (stroke survivors) and families impacted by stroke due to the physical, cognitive and psychoemotional consequences that usually require adaption to a more restricted lifestyle with some reduction in activities of daily living. 2

From hospital data collected between 2015 and 2016, there were 37 300 acute care hospitalisations in Australia where stroke was the principal diagnosis, which equates to a rate of 134 patients per 100 000 population acute care hospitalisations. 3 The Acute Stroke Clinical Care Standard devised by the Australian Commission on Safety and Quality in Health Care 4 identifies the pivotal role carers and family members have in the prevention, early recognition, assessment and recovery for stroke survivors. Furthermore, informal carers such as family members and significant others play a substantial role, providing an estimated 1.9 billion hours of unpaid care in Australia. 5

The sudden onset of stroke and subsequent early days in an acute hospital setting can be traumatic for both the stroke survivor and their families. 6 The initial admission and early days following a stroke can have a profound effect when the individual and their family begin to realise the impact of the event which can be frightening, confusing and distressing for all. 6

From a psychological perspective, the shorter term posthospitalisation effects of a stroke have been shown to potentially create a sense of vulnerability for both stroke survivors and families due to impacts on basic activities of daily living. 7 A number of studies indicate that timely recognition of the physical and the psychological impact of stroke can be beneficial for both stroke survivors and their families. 5 8 Vulnerability and uncertainty for the future in turn affect the dignity of the person as they struggle to cope with the discontinuity in body, self and roles both within the family and more widely within the community. 9 Stroke survivors have reported revaluing their role as an ongoing struggle, and discontinuity and uncertainty were characteristic of the adjustment process after stroke. 6 10

Nonetheless, adjustment to living with the effects of a stroke could be facilitated by the introduction of relevant and timely strategies such as early coordinated multidisciplinary care in a specialist stroke unit to encourage timely recovery. 11 The Acute Stroke Clinical Care Standard identifies that a ‘carer of a patient with stroke is given practical training and support to enable them to provide care, support and assistance to a person with stroke’ (p 2). 4 Research has identified the important role multidisciplinary healthcare team such as within a specialist stroke rehabilitation setting play in supporting and encouraging the stroke survivor and their family to adjust both physically and emotionally. 12 Due to the challenges, stroke survivors may feel misunderstood by nurses and other health professionals, and by further understanding their expectations and experiences of care it can contribute to improving their recovery. 9 This is also critical for improving the safety and effectiveness of healthcare delivery and patient-centred care and aligns with partnering with consumers to improve care and patient outcomes. 3 13

Early interventions after stroke for patient and family

Given the suddenness of the onset of stroke, there is a potential for the patient and family to leave the hospital setting before being fully prepared for the continuing rehabilitation process at home. 14 Home-based community care and rehabilitation may allow earlier patient discharge, yet without access to adequate and ongoing support, families are often ill equipped to deal with the challenges of caring for the individual after their stroke. 15 Stroke survivors can have a variety of unmet needs at discharge and once the person has returned home, including mobility and communication, awareness of recovery potential, interaction with healthcare professionals, medicines and emotional well-being as well as need for information and aspects of social participation. 16 17

For the stroke survivor, changes in life plans and quality of life can result in longer term psychological impacts including mood swings and mental health issues, 8 18 19 and found that there was a need for better discharge preparation and a further need for ongoing psychological and social support within the community in understanding readmission after stroke. In addition, a study by Kruithof et al 20 demonstrated beneficial outcomes for both family and the stroke survivor relating to good discharge planning practice.

The aim of this study was to add to the body of knowledge regarding the crucial need for early and specialist team-based intervention. Such early intervention would seek to identify barriers and enablers from the perspectives of both stroke survivors and allied health teams. This in turn would assist in better understanding what is required to best support families and stroke survivors during rehabilitation. It was anticipated the synthesis of findings would identify any key areas that could potentially be addressed to ensure better hospital care and support for stroke survivors and their families when transitioning back home. Furthermore, the study lends weight to the contention that a team-based approach provided by the specialist stroke unit both during the stay and while transitioning back to the community enables the stroke-affected individual to better adjust to life after stroke.

Methodology

This study used a qualitative descriptive (QD) methodology which enables the researcher to stay closer to their data and to the surface of words and events. 21 Interpretation is much less to the fore 22 but instead is an extensive summation of events as the participants have described them to the researcher without interpretation by the researcher of those said events. QD is a suitable methodology in healthcare research as it helps to focus research questions directly on the experiences of participants. 22

Setting and sample

The study was set in a metropolitan stroke rehabilitation unit in Western Australia providing rehabilitation services for inpatients and outpatients. It is a 10-bed unit within a 199-bed community hospital in Western Australia offering rehabilitation and acute services for inpatients and outpatients. The unit is staffed by a multidisciplinary team of medical, nursing and allied health who provide support both during the hospital stay and prior to and after the patient is discharged back into the community. Interventions are centred on the needs of patients and their families with the average length of stay being 22 days. This unit also provides patients and their families with community rehabilitation services outside of the hospital setting that include occupational therapy, physiotherapy and social work. In this context, clients accessing inpatient rehabilitation tend to have severe impairments that preclude early supported discharge to home-based rehabilitation.

Purposive sampling was employed for patient and carer dyads as well as registered nurses and allied health professionals. Purposive sampling is a non-probability sampling technique which selects the sample based on what is known about the target population in concordance with the aim of the research and recruits those who possess the maximum amount of information about the topic. 23 The first group were patients who had sustained a stroke and were subsequently discharged from the stroke rehabilitation unit within the previous 6–12 months from commencement of the study (following ethical approvals) and met the following criteria:

• Absence of comorbidities such as advanced dementia, cancer or other poor life expectancy conditions that would preclude participation.
• Completion of acute stroke care.
• Over 65 years (or >45 years for Aboriginal and Torres Strait Islander people) aligned with the criteria for admission to the rehabilitation unit.
• Be medically stable (ie, not readmitted to acute care or suffering a concurrent illness that would preclude participation in interviews).

In addition, individuals who self-identified as the primary carer (all were spouses) of stroke survivor participants were also invited to participate either in the same interview as the survivor, or in an individual interview. Inclusion criteria were that the person had to be identified as the primary caregiver of the patient and able to communicate in English to a standard that would enable them to fully participate in an in-depth interview with the researcher.

The second group were staff comprising three registered nurses and an occupational therapist who all worked within the specialised community hospital stroke rehabilitation unit and had each been working within the field of specialisation for more than 6 months.

Recruitment procedure

Stroke survivors and carers.

Stroke survivors and carer participants were informed by a research nurse and clinical team member of the study during inpatient care in the rehabilitation unit and provided with a participant information form and consent form. Participants were required to return the consent form by mailing it to the external researcher using the reply-paid envelope and the researcher then followed up with a telephone call to arrange a suitable time and venue for the interview to take place. Of the six participants, five were interviewed in person and the sixth requested to be interviewed by telephone.

Staff within the rehabilitation unit were invited to participate in the study by the clinical nurse specialist staff member during a staff meeting and were asked to complete a consent form if willing to be interviewed by the researcher.

Data collection

Stroke survivor and carer interviews.

The QD methodology employed a semistructured interview technique for all participants with an interview guide ( online supplemental appendix 1 ). A researcher who is not employed by the hospital nor the rehabilitation unit completed the interviews. The interview topic areas for survivors and carers focused on a trajectory from recall of stroke event and subsequent hospitalisation, followed by experiences of the stroke rehabilitation unit and ultimately discharge to return home. The interview guides were informed by an extensive literature review and developed in consultation with the individual research team members who are currently working as clinical staff within the rehabilitation hospital including a specialist clinician and a clinical nurse specialist. Interview schedules were piloted with a clinical nursing staff member who understood and was experienced within the rehabilitation field within the hospital. Former inpatient stroke survivors and carers were invited to discuss their individual hospital experiences in terms of their awareness, knowledge and involvement through nursing staff along with understanding the rehabilitation and recovery trajectories after stroke hospitalisation. Stroke survivors and carers were also invited to discuss the future from a personal perspective in terms of how life and roles may have changed and preparedness to remain within their home after rehabilitation unit stay. The interview content also encompassed thoughts around the available support systems from other friends and family members alongside more structured community services. Interviews lasted for approximately 1 hour.

Supplementary data

Interviews with nurses and allied health team.

Staff working within the stroke rehabilitation unit were interviewed around perceptions of the stroke survivor and nominated carer during their stay within the rehabilitation unit and their perceptions of preparation for discharge to the community. Staff were also asked to provide any possible examples of where a stroke survivor had transitioned well and conversely any who did not transition successfully including their perceptions around the differences between them and how these related to the role of the participant. All staff interviews were conducted by telephone at suitable times for the participating staff members. Interviews lasted for approximately 30 min.

It was believed that this approach would represent the perspectives of stroke survivors, carers and staff across the rehabilitation trajectory and from multiple viewpoints.

Data analysis

QD approach requires the researcher to employ either content or thematic analysis to uncover commonalities across a number of participant interviews rather than focusing on the individual experiences of participants. 23 Qualitative data were analysed using template (framework) thematic analysis and common themes extrapolated initially within participant groups and then cross-comparisons between groups were made. All identifying names and characteristics were removed from the groups. Thematic analysis was undertaken using the QSR NVivo V.11.0 data management software. 24 The thematic template was broadly based on the interview questions and guided by the QD methodological process for data collection and analysis. All themes and subthemes were decided on by two researchers (CB and RS) with consensus agreed on regarding the final coding framework along with the hierarchical structure of themes. It was decided at that point that saturation had been reached with the number of interviews conducted and results addressed the research question.

Patient and public involvement

Patients and carers were involved in the study during the data collection phase by participating in the in-depth interviews.

Ethical considerations

The study used a qualitative approach which sought the personal and in-depth opinions and perceptions of patients and wherever possible their carers alongside those of staff providing care within the specialist stroke rehabilitation unit. As such, great care was taken to adhere to the National Health and Medical Research Council (NHMRC) principles of integrity, justice, beneficence and respect for the participants. First, the interviews were conducted by a highly experienced qualitative researcher who was not employed by the hospital and who has expertise in interviewing persons with cognitive impairment and those in vulnerable populations. The team researchers have extensive knowledge of the study population with one of the coauthors being a geriatrician who specialises in stroke outcomes for the older population. The participants were not contacted directly by the researcher interviewer and were invited to make contact with her if they chose to participate. The participants were stroke survivors and carers who had not recently experienced a severe stroke within the last 2 years of the interview period and were community-dwelling individuals. All participants were provided with a participant information sheet which provided details of counselling contact details and an ethics representative number from the university.

Overarching themes and trajectory of recovery

Only two carers (one female and one male) of four participating stroke survivors agreed to be interviewed with the survivor to provide supporting detail to the survivor’s narrative. Stroke survivor ages ranged from 65 to 84 years. Carer ages were 66 and 86 years.

Overarching themes from the analysis of the interview data from the staff participants centred on staff perceived challenges in rehabilitating stroke survivors to return to the community given the limited available time along with the issues in dealing with families of stroke survivors. Patients and carers highlighted the sudden onset of stroke and the limited adjustment time along with a loss of independence .

Another overarching theme for all three groups was the benefit of providing stroke rehabilitation dedicated facilities along with staff perceptions of the key characteristics of positive and negative readjustments for families of those affected by severe stroke. Figure 1 shows the trajectory of recovery and factors which impact a successful recovery based on this study findings.

Trajectory of recovery after stroke—staff and patient perspectives.

From acceptance to adaptability: steps to success

The themes below highlight the key issues for patients, carers and staff during the rehabilitation phase of the recovery journey. Overarchingly, it was evident that there was a mismatch between staff expressing desire to spend more time with the inpatient stroke survivors and families and the actual lack of available time tending to individual patients. Subsequently, this led to unresolved issues for both families and the stroke survivor participant in terms of acceptance and receptivity to clinical advice. The findings below relate to each of the stages of patient rehabilitation and recovery after stroke and show the subthemes of staff perceived lack of time and resultant lack of future preparedness for the stroke survivor and family. Nonetheless, the process for patients and carers in having the ability to adapt was uncovered in the subthemes of willingness to cooperate with staff alongside the level of acceptance for the stroke survivor and family which could potentially be ameliorated by intervention and support of rehabilitation staff.

Lack of time and urgency to regain mobility

Staff respondents felt that the lack of time to spend with individual patients impacted on the degree of preparation for both the stroke survivor and their family in returning home. This was compounded by an unspoken ‘sense of urgency’ to ‘get the person mobile’ again during their hospitalisation in rehabilitation. During the average stay in the rehabilitation unit, staff also encountered patient and family shock and lack of awareness of the level of impact from the stroke event.

It is described as a catastrophic event. So it really is quite life changing—you know—it involves a lot. I think probably the surprise. I mean…. I think the family get a surprise just how much is involved. (Staff participant)

The dynamics of families were also noted as difficult to deal with in the short space of time within the rehabilitation period, with respondents perceiving that there was a mismatch between the hopes and desires of the stroke survivor and the ability of the family to commit to care in a short time frame.

And if you don’t have the family support which often they don’t because, you know what it’s like? You get some families where the children want them to go in a home and they want to go home to their own personal home. So, you’ve got all those things you have to work through. (Staff participant)

From the stroke survivor and carer perspective, there was some confusion around the initial diagnosis of a severe stroke and a lack of awareness and preparation for potentially what could be a very long-term recovery process.

When we took him to the hospital and they were asking what happened I had already picked it up. I knew….his speech was slurring. But they were still saying that he hadn’t had a stroke. But then it might have been just about to happen. (Family participant)

One stroke survivor respondent spoke about the challenge of processing that they had been diagnosed with severe stroke and subsequent loss of mobility (especially loss of independence). This resultant sense of helplessness impacted heavily on the patient’s ability to accept and adapt:

I was taking a little water tablet, I also needed to go to the toilet. And that was a nuisance to the nurses. And I got into trouble for that because I got out of bed once. I got out of bed because I was in a room by myself. (Stroke survivor participant)

Postshock recovery and uncertainty about the future

The findings also highlighted the challenges of the relatively short inpatient rehabilitation time frame given that most staff felt that families were ‘in shock’; in the early days and yet having to make major decisions about the stroke survivor’s future. The return home also required a period of adjustment both in physical circumstances but also regarding relationships. Staff findings identified an awareness of stroke survivor and family concerns and staff shared that they endeavoured to provide support in whatever ways they could using open communication, reassurance for the stroke survivor and their family as well as providing realism regarding what was possible in terms of a longer term recovery. Nonetheless, the recovery journey was potentially hampered by differences in information and communication expectations between patients, carers and staff and lack of time to process the event.

A very experienced nurse was telling me that we don’t allow time for people to grieve … But also the significant grieving and particularly with some people… I think have worked hard their whole life, and been responsible, and contributing and then for this to happen. (Staff participant)

Staff participants spoke of the characteristics of stroke survivors and carers in terms of adjustment and acceptance. Unwillingness of family members to ‘accept reality’ was noted as a major issue for staff in trying to emphasise to families what the barriers to providing care within the home are likely to be

Some people are not ready to hear what we are telling them. (Staff participant) I think sometimes that’s where there’s—you know—I think sometimes people aren’t ready to hear what we are telling them in terms of the extent of the deficits are. (Staff participant)

Despite the fact that staff participants believed that they did their best to reassure inpatient stroke survivors and respond to queries, family support was also clearly important to the acceptance and adaptability process. A participant acknowledged that his wife was well supported through family meetings with the rehabilitation team.

… if you have any questions then just ask us now. That was good to have the family meeting and then if anybody there had any questions then they could ask and so my daughter, yes she had quite a few concerns and so she was able to ask them. (Family participant)

Returning home and the importance of accepting help

One of the key advantages of the specialised stroke rehabilitation unit was perceived as the multidisciplinary team who supported the stroke survivor while in hospital as well as assessing the person’s living arrangements after returning home. This provided a continuity of care which positively impacted the carer and stroke survivor’s ability to return home.

As part of the care in the unit, staff reported that the stroke survivor and the family were prepared for the transition home through inpatient assessment to determine the stroke survivor needs and home assessment to determine if modifications or aids were needed to support the stroke survivor on return to their home. The ‘wrap around’ services before and after discharge supported the continuity of care model offered by the unit.

I guess you kinda hope you covered all those bases before they go home. That you have put enough services and you have put enough support and that they really do know what they are going to deal with. (Staff participant)

Participating staff highlighted that the key characteristics of a positive recovery were observed to be stroke survivor and family confidence in being able to adjust, realistic expectations of what degree of functionality could be achieved in the future and good family support:

But another gentleman that springs to my mind again. He was only able to get home and continue that rehab because everyone had a ‘can do’ attitude with him. ‘Give it a go’, ‘You’re gonna give it a go’, ‘Let’s see what happens’… do you know what I mean? And that instilled confidence in him as well. (Staff participant)

From a stroke survivor and carer perspective, those interviewed believed that the staff at the specialist rehabilitation unit had facilitated a smooth transition home for the most part. Interestingly, the ability to adjust once home was influenced by the personality and perspective of the patient. The three families who were better equipped emotionally and physically had a primary carer (usually their spouse) to support them. However, sometimes the expectation that participants placed on their children and families was at odds with the reality of the support that significant others were willing and able to provide.

I do get depressed sometimes because I think that I have two sons and daughter here, but our next door neighbours do more for us than them. (Stroke survivor participant)

A participant who had no spouse or partner to provide informal support and care spoke of his frustration with the services and in making himself understood due to speech problems as an outcome of the stroke. Regardless, this participant who lived alone aside from regular visits by his adult son spoke of his resilience and autonomy which he perceived as important in managing his condition. As can be seen in the following quote, the participant who lived alone with visits from his family and neighbours took a sense of pride in his resilience, despite his frustration around speech difficulties.

I am able to look after myself. I’ve been on my own for 30 years. Important to me. I am strong—I used to work on the oil rigs. (Stroke survivor participant)

In terms of accepting help, participating stroke survivors and carers highlighted the fact that they appreciated help from family and neighbours, but this needed to be balanced to avoid too much intrusion into their personal lives.

He’ll [neighbour] pop in every two or three weeks, [and say] ‘everything alright? Is there anything you need?’” They’re not always in and out of the house. They’re not those kinds of neighbours. (Stroke survivor participant)

Summary of main findings and comparison to existing studies

The findings from this study highlight the importance of seeking and understanding stroke survivors, family and staff experiences of care to provide quality care for best patient outcomes and prevent readmission. In this study, there were observable differences in experiences in the stroke unit and this identified the mismatch between the reality of what rehabilitation staff can provide and what is expected of them by both stroke survivors and family. In addition to this, there was a limited time frame during hospitalisation for the necessary acceptance of both stroke survivors and family as to the realities of life for the person affected by severe stroke.

These important findings were triggers for nursing and other staff to improve communication with patients and families. Positive experiences of care in other studies were related to reciprocal communication and information sharing with patients and families. 13

Nurses and health professionals need to understand the complexity in terms of family dynamics and relationships which can be significantly and negatively affected by a sudden illness or traumatic events. 25 26 In this study, it highlighted the issues juxtaposed between staff urgency for the patient to be mobile and ready for discharge, while the stroke survivors and their families were still coming to terms with the shock of the stroke and associated after-effects thereof. Therefore, good interprofessional skills and providing emotional support is another key part of supporting a positive experience and for nursing staff and allied health professionals to better prepare both the stroke survivor and their families in the early rehabilitation days. The early days and the rehabilitation processes were strongly influenced by the stroke survivors and their family members’ ability to adjust and maintain focus and positivity. However, for this to be achieved, healthcare team support and communication is essential. 27

Our findings were in keeping with other studies which indicated that the patient and carers experience two crisis moments following the stroke event. First, the crisis at the time of the stroke and again prior to discharge when the reality of the recovery journey ahead is realised by both the patient and family members. 10 The second potential crisis point also requires the support of rehabilitation staff members as the reality of discharge ‘looms large’. 10

In terms of early rehabilitation of stroke survivors, the multidisciplinary team are a key part of the provision of care of patients after stroke and supporting their families. The study found that staff identified stroke survivors and family confidence in being able to adjust contributed to a positive transition to home. This reinforces the importance of health professionals conducting a comprehensive assessment of family carer concerns and abilities to support the stroke survivor at home; developing a plan in partnership with stroke survivor and family as part of preparation and support for a caregiving role. 28

Strengths and limitations

This study was a small, exploratory qualitative study of the challenges of the recovery during rehabilitation and transition to home from the perspectives of hospital staff, stroke survivors and family carers. Although the sample was small, we did reach saturation for the specific smaller specialised rehabilitation unit. However, the authors recognise that the participant experiences within a small purpose-built stroke rehabilitation unit cannot be generalised to an entire population of survivors of severe stroke. Nonetheless, the balance of opinions between the small specialised rehabilitation team and the patients and carers revealed some core issues around the mismatch of expectations in terms of return to normalcy for patients which were consistent across all interviews. The interviewer is an experienced qualitative researcher and is familiar with interviewing vulnerable populations and those with cognitive impairment. However, the interviewer was not a member of the specialist team nor affiliated with the hospital in any way. This enabled both staff and the patient and carer dyads to be completely free to express forthright opinions confidentially.

Another strength was the inclusion of carers where possible in the study as the carer interviews provided a richer viewpoint regarding the experiences of the patient during the rehabilitation journey. When interviewed together with the stroke survivor, the stories became richer as each participant provided greater detail to the experience of the other.

As the sample represented stroke survivors, family carers and staff from hospital thus may not be applicable to those of other hospital populations such as larger hospital with generalised rehabilitation services. This unit with a coordinated small team of health professionals is specific to providing rehabilitation support for stroke survivors only from inpatient rehabilitation through to return to community and ongoing support once the patient is at home. However, the authors believe that balance of opinions between staff and stroke survivors and carers provided a more holistic picture of their experiences and the rehabilitation journey in a specialised stroke rehabilitation unit.

Implications for clinical practice

The structure of the rehabilitation multidisciplinary team at the unit demonstrated a willingness to work together to prepare the patient for discharge both within the unit and at the person’s home setting. Notwithstanding this ideal, nursing staff participants reported they are under significant pressure to discharge patients once they regain mobility as well as supporting family members and carers, while relying on allied health staff such as occupational therapists and social workers to facilitate their transition home.

As an unforeseen event, stroke can put family members into an unexpected carer role and the findings of this study highlight the importance of staff understanding experiences of care so this can contribute to reflective practice and to ‘frank and open’ discussion about what is or is not possible and to prepare families and the patient about the pace of rehabilitation. Given the benefits for the long-term well-being of both the stroke survivor and family carer, it is essential that services optimise staff time spent with the individual patient and family in the poststroke rehabilitation journey. This would serve to clarify expectations and reassure stroke survivors and families regarding what to expect in the future once they are discharged from hospital and improve care experiences. Future research exploring how discharge planning and processes for stroke survivor, the education and resources provided to family carers impact on experiences of care and the transition to home and the well-being of the family carer could provide valuable insight into identifying resources to support family carers within limited rehabilitation time frames.

Supplementary Material

Acknowledgments.

The authors would like to acknowledge the willingness of patients, carers and staff of the specialised stroke rehabilitation unit who gave generously their time to share their stories and rehabilitation journeys.

Contributors: CB developed the methodology for the study, conducted the data collection, analysed the data and drafted the manuscript. RS analysed the data and contributed significantly to drafting of the manuscript. LE drafted the manuscript and prepared the manuscript for publication. CE-B developed the study concept and contributed to the manuscript. CB is the author responsbile for overall content and accepts full responsibility for the work, had full access to data and controlled decision to publish.

Funding: This work was supported by an internal research grant scheme of the University of Notre Dame Australia (grant number 2016R11116).

Competing interests: None declared.

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

Supplemental material: This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

Data availability statement

Ethics statements, patient consent for publication.

Not required.

Ethics approval

This study involves human participants and was approved by The University of Notre Dame Research Ethics Committee (reference number: 016175F). Participants gave informed consent to participate in the study before taking part. This study received ethical approval (2016-36; 14 December 2016) from both The University of Notre Dame Australia Human Research Ethics Committee (HREC) and the South Metropolitan Health Service HREC in Perth, Western Australia.