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Better care homes for living with dementia?

Health care systems are complex adaptive systems that are resistant to change. Around 423 000 care home places are provided by the private and voluntary sector in England and Wales. When the Nuffield Trust came to consider new organisational forms for healthcare providers, in appraising the “Dalton Review”, attention was drawn to struggling providers, learning from approaches internationally, and learning from other sectors.  And emerging themes appeared to be leadership and management, ownership and governance, policy, legal and regulatory issues, culture and values, infrastructure and assets, and efficiency and costs.

Whilst the Dalton Review was primarily concerning itself with hospitals, I feel that a similar approach can be validly taken to care homes. The regulator of care homes, the Care Quality Commission (CQC), has, traditionally, primarily focused on the quality of social care provision. We need to understand the underlying facilitators and barriers in achieving the best and most appropriate healthcare for patients. From such an understanding, recommendations could then be made for the design of future provision.

We know from the Care Quality Commission’s seminal report “Cracks in the pathway”, published October 2014, striking statistics about poor care:

“In 29% of care homes and 56% of hospitals we found aspects of variable or poor care regarding how a person’s needs were assessed. In 34% of care homes and 42% of hospitals we found aspects of variable or poor care regarding how the care met people’s physical and mental health and emotional and social needs. In 27% of care homes and 56% of hospitals we found aspects of variable or poor care regarding staff’s understanding and knowledge of dementia care.”

Leadership is important for the implementation of nursing practice. However, the empirical knowledge of positive leadership in processes enhancing the person-centred culture of care in nursing homes is limited.  By strengthening the leadership skills of nursing home leaders, it may be possible to achieve and sustain improvements that are essential to promote a better quality of life for the residents.  Under-performing homes should take corrective action to improve clinical leadership, communication processes, teamwork, and timeliness of information transfer before embarking on major quality improvement initiatives. Good leadership plays a key role in developing nurses’ understanding of patients’ needs and values and the acceptance of new innovations to obtain successful change and a positive care culture. A number of recent reports from health and care have converged upon the need to speak out safely about poor care. For example in a document entitled, “Freedom to speak up: An independent review into creating an open and honest reporting culture in the NHS,  the need for strong leadership was identified:

“However, there are encouraging signs that there is a genuine will to make progress, and a growing awareness of the contribution staff can make when encouraged to speak up. For example, the Dalton Review made clear that leaders should listen and respond to the insights of staff and recognise that ideas for improvement are generally found within their own organisations.”

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Relatively little is known about the relationship between organisational culture and quality of long-term care and studies found focus on different aspects of quality of care. Care staff who have attitudes that are more ‘person-centred’ have been shown to have a greater recognition of dementia in residents. Organisational culture relates to the assumptions, values, attitudes, and beliefs that are shared among significant groups within an organisation. In research on culture in general health care, many attempts have been made to elucidate any possible linkages between organisational culture and organisational performance.  A strong, positive culture has been reported to contribute to quality of care. Yet, other studies in general health care report no associations at all. A strong framework of organisational culture that is often applied in healthcare research is the competing values framework. But the report “Transforming care: A national response to Winterbourne View Hospital Department of Health Review: Final Report”, a particularly noteworthy low point in care homes, revealed the following:

“The abuse revealed at Winterbourne View hospital was criminal. Staff whose job was to care for and help people instead routinely mistreated and abused them. Its management allowed a culture of abuse to flourish. Warning signs were not picked up or acted on by health or local authorities, and concerns raised by a whistleblower went unheeded. The fact that it took a television documentary to raise the alarm was itself a mark of failings in the system.”

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From another jurisdiction (Australia),  Dr Lynn Chenoweth, Professor, Aged & Extended Care Nursing, University of Technology Sydney, provides a description of the perfect “perfect storm” (Chenoweth et al., 2014)

In parallel with reduced nurse numbers, changes in health-care policy have seen cost minimization, resource utilization and risk management conflicting with community expectations of health outcomes for older people . Safe, effective health care for persons with age-related conditions, such as dementia, depends upon recruitment and retention of qualified nursing staff. Concerns for qualified nurse sufficiency and stability worldwide occur at a time of decreasing nursing authority, and prevailing dissatisfaction with the pace of change in working conditions produces poor recruitment and greater attrition. Problems in qualified nurse recruitment and retention in Australia are exacerbated in residential aged care facilities (RACFs) by complex care demands, high workloads, poor workplace conditions, lower professional and community status and poor pay parity. Nurse attrition in this sector is associated with under-resourcing and unsupportive management systems. Data comparing the 2007 RACF workforce with 2003 showed total workforce growth from 76 006 to 78 849 full-time equivalent positions to cater to the increased number of residents, but a concomitant fall in qualified nurse numbers of around 3% had a significant impact on workload and job satisfaction.

In trying to improve the quality of care provided to people with dementia, researchers have primarily looked at establishing a better understanding of care staff attitudes and workplace experiences in the hope that, by developing ways in which these can be changed, practice can be improved. This is clearly a question of specialist staff training, rather than vague concepts of being ‘friendly’. For example, there is also evidence to suggest that positive care staff attitudes, particularly ones focused on ‘person-centredness’, are related to better job satisfaction and that staff who report higher levels of satisfaction provide better care. Negative attitudes towards the person with dementia are regarded as an obstacle to care and can result in staff focusing on the resident’s physical deficits. In addition, continued high levels of staff stress can lead to burnout, which causes more negative attitudes towards the person with dementia

There have been mixed findings from studies evaluating the effectiveness of staff training programs, the majority of which have utilised uncontrolled research methodologies, and have often recruited small samples from only one or two facilities. Training programs that provide staff with both information-based sessions and additional support to help facilitate change appear to be more likely to promote continued improvement in skills. This approach typically includes extended on-the-job training to enhance learning of new skills, through ongoing expert consultation, modelling of appropriate practices, or supervision and feedback by specialists.

Whether termed knowledge “dissemination”, “disseminating innovations”, “knowledge transfer”, “knowledge translation”, or “diffusion of innovation”, the common goal is improved patient care enhancing the patient experience and patient safety. The NHS currently has objectives which includes adding life to years as well as adding, appropriately, years to life. Healthcare knowledge, generated by the scientific community, does not reach its full value until it moves from research to practice. This crucial transition is often fraught with challenges that result in healthcare performance that is less than optimal. Referring to this fundamental problem in healthcare, the Institute of Medicine (2001) stated in its report, “Crossing the Quality Chasm: A New Health System for the 21st Century”, that “between the health care that we have and the care we could have lies not just a gap, but a chasm.” In a review of nine clinical procedures, Balas and Boren (2000) found that it takes an average of 15 years after a landmark trial of a new procedure to reach a use rate of 50%.

But this is all hugely complicated, it turns out. By pointing out that “mastering the generation of good changes is not the same as mastering the use of good changes,” Berwick (2003) highlights the paradox inherent in the diffusion of innovations. Across healthcare disciplines and professions, nationally and internationally, concerns are being raised about the need to improve the transfer of knowledge from the scientist to the clinician.  The use of peer support groups represents an alternative approach to facilitate the development of staff skills that is not dependent upon the continued involvement of external specialists. In this approach, staff members are encouraged to meet regularly in small groups, to support each other in their day-to-day work and in the use of new skills for the management of residents with behaviours which suggest a failure of communication.

There is a paucity of extensive description of registered nurses’ education and their views on competence development in residential care. There is growing evidence that care home residents have unmet health needs, may be admitted to hospital unnecessarily and that their dignity may be affected by poor access to healthcare.  Many studies into educational programs for nursing staff in long term care settings have very small sample sizes, non randomised designs, designs without control groups or a low response rate. There has been much interest in England in promoting training among professionals working with people with dementia. This reflects concerns that people working in social care services providing support for people with dementia are the staff who are least likely to have been offered or to have attended any training.  The Quality Outcomes Framework, used by the National Health Service to ensure that primary care across the UK is systematic and evidence-based, does not address residents’ needs. On the other hand, there is much support for the need for  increased education for long term care staff. In addition to ongoing staff education, long term conditions care homes often turn to continuing education (CE) when faced with compliance issues. Managers can be keen to provide CE because of limited resources, including paying for the education and backfilling positions so that staff can attend.

However, for instance, a goal of the CARES® (Connect with the resident; Assess behavior; Respond appropriately; Evaluate what works; Share with the team) program has to provide a portable, self-paced, interactive training program to help nursing assistants and other nursing home staff acquire knowledge about effective treatment and management of dementia in long-term care settings. CARES® was designed to provide a cost-effective multimedia educational training program to nursing home and assisted living staff to improve dementia care practices.

Finally, Prof Henry Brodaty and colleagues have reported that approximately one in three nursing home staff members felt they did not have enough opportunities at work to discuss the psychological stress of their job. Peer support groups may help to address this unmet need, but so far have received little attention in the literature. Annual turnover of nursing home staff ranges from 40% to 96% in the United States of America. As there is a significant correlation between nurses’ occupational stress, turnover and job satisfaction, a better understanding of nurses’ strain and satisfaction in nursing homes may help in designing interventions or policy development to decrease turnover.

Residential homes are most likely to offer good care when they are firmly rooted in their communities, and where individuals are respected for the persons that they are. An enriching environment, perhaps with meaningful environment, effective design, and a person-centred culture might go a long way to achieve better care homes, and we need to know from research what this involves. But it’s crucial that this research into care, hopefully of high quality as well as good quantity, isn’t left on the shelf for too long, and is applied in service provision as soon as possible.

 

References

Balas EA, Boren SA. Managing clinical knowledge for healthcare improvement. Yearbook Med Inf. 2000:65–70.

Berwick DM. Disseminating innovations in healthcare. JAMA. 2003;289(15):1969–1975.

Chenoweth L, Merlyn T, Jeon YH, Tait F, Duffield C.Attracting and retaining qualified nurses in aged and dementia care: outcomes f rom an Australian study. J Nurs Manag. 2014 Mar;22(2):234-47. doi: 10.1111/jonm.12040. Epub 2013 Mar 7.

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