Evaluating Implementation and Outcomes of a Person-Centered Care Model for People with Dementia in the Rehabilitation In-Patient Setting: Project Protocol

Abstract

Background:

While Australian guidelines promote person-centered healthcare (PCC) for persons with dementia, healthcare systems, routines, rules, and workplace cultures can pose challenges in the provision of PCC.

Objective:

To present a knowledge translation protocol of the PCC model in a sub-acute rehabilitation hospital.

Methods:

The two-year pre/post/follow-up translation project will include (n = 80) persons with dementia, (n = 80) adult family/carers of patient participants, (n = 60) healthcare staff (medical, nursing, allied health), and (n = 8) PCC staff champions. Champions will complete six half-days’ training in PCC. Medical, nursing, and allied health staff will be provided with PCC learning manuals, complete six hours of online PCC education and attend six face-to-face PCC education sessions. Champions will provide ongoing support to staff in PCC practice. The Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework will be used to evaluate: i) outcomes for prospective patients provided with PCC, compared with a matched sample of retrospective patients (primary outcomes agitation incidence and severity); 2) champion and staff PCC knowledge, confidence, engagement, and practice quality; 3) person, family/carer, champion, and staff satisfaction with PCC; 4) PCC costs and benefits; and 5) organizational structures, systems and policies required to implement and maintain PCC in sub-acute healthcare.

Results:

We will identify if PCC benefits persons with dementia, staff, and healthcare services, and we will generate evidence on the educational and organizational resources required to embed PCC in practice.

Conclusion:

Project findings will inform tailored PCC education applications for dissemination in healthcare and produce evidence-based PCC practice guidelines to improve healthcare for persons with dementia.

Keywords

Delirium dementia health personnel hospitals patient-centered care quality of healthcare

INTRODUCTION

Context of the project

One in five people over 65 years present to hospital with underlying dementia, predisposing them to behavioral and neuropsychiatric symptoms, delirium, and iatrogenic harms [1]. The risk of iatrogenic harms occurring in people living with dementia is 30% higher than in others of the same age [2], being precipitated by busy hospital activities, disrupted daily routines, frequent bed moves, essential care rationing, and excessive stimulation from tactile sources such as intravenous therapy, cardiac monitoring, dressings, casts, and restraints including bed rails [3 –5]. The person’s behavioral responses to these situations can include agitation, confusion, apathy, and reluctance to accept healthcare. These behaviors pose significant problems for the person, their family/carers, and healthcare staff due to their prevalence, severity, burden on performing clinical services, and difficulties in providing treatment [6].

Australian healthcare guidelines promote person-centered care (PCC) as the first course of action in responding to behavioral changes in persons with dementia [7, 8]. While guidelines indicate the requirement to place the person at the center of healthcare [9, 10], staff are challenged in knowing how to achieve this within the constraints of established systems, routines, rules, and workplace cultures [5, 11]. These challenges are compounded when staff have little, if any, education on PCC methods and expect to gain quick resolution of behavioral changes in persons with dementia while using PCC [12, 13]. However, when staff obtain PCC knowledge and skills, particularly in understanding how to reduce the underlying cause/s of behavioral changes and ways of providing therapeutic support to the person, the quality of healthcare improves and the person with dementia has better health outcomes [7, 14]. The PCC model developed by Kitwood and Bredin [15] and Kitwood [16] has proven to be applicable and beneficial for persons living with dementia and staff in different healthcare contexts [17, 18].

Systematic reviews and meta-analyses of the Kitwood [16] PCC model show it to be versatile and cost-effective in improving clinical and psychological outcomes in persons with dementia. Significant reductions in agitation (p = 0.003), and improvements in function (p = 0.05) and well-being (p = 0.002) have been achieved with this PCC model in long-term residential and community aged care contexts internationally [14 , 20]. Positive patient outcomes were achieved in a randomized controlled trial of Kitwood’s [16] PCC model in one acute care hospital in the United Kingdom [21]. Similarly, significant improvements occurred in this project’s pilot study, which was undertaken in one acute Australian hospital [22]. The project’s pilot study outcomes included measurable improvements in care quality (p = 0.01), and reductions in incidence of agitation (p = 0.018), delirium (p = 0.06), and other iatrogenic harms (p = 0.05) in people with dementia. Healthcare staff’s approach in caring for persons with changed behaviors also improved with PCC education and support [23].

Significance of the project

Current evidence [24] and feedback from the project’s pilot study participants [23] indicate that while staff education in PCC is essential, it is insufficient to improve care quality without organizational support. Clinician education needs to be supplemented by the clinicians working alongside those who can model PCC and provision of regular feedback and advice to clinicians on ways to improve their practice. This type of peer support ensures that clinicians have the required cues, motivation, and opportunity to deliver PCC [6, 18]. The evidence arising from the project’s pilot study includes details of service operations required to adopt, implement, and maintain the Kitwood [16] model of PCC, and how to engage the healthcare team to adopt the approach within the structural limitations of a busy hospital environment [23]. This knowledge translation project of Kitwood’s [16] PCC model is informed by that evidence. The sub-acute in-patient rehabilitation hospital is an ideal setting to undertake this project, given the longer length of stay that is likely for patients with dementia [1] and thus, greater opportunity to track and evaluate both PCC implementation and outcomes at the individual and site-levels.

Project aims

This project aims to: 1) Implement Kitwood’s [16] PCC model in the sub-acute in-patient rehabilitation hospital, in collaboration with stakeholders (consumers, medical, allied health and nursing teams, and service managers); and 2) Evaluate outcomes of this PCC model for patients with dementia, for clinical staff and the hospital according to the RE-AIM (reach, effectiveness, adoption, implementation, maintenance, and dissemination) evaluation framework [25].

Research questions

The study has four research questions:

Research Question 1 (effectiveness): What is the effect of the Kitwood [16] PCC model for patients with dementia on: agitation incidence and severity (primary outcome); and on delirium incidence, psychotropic medicine use, incidents (e.g., falls), length of stay, discharge destination, and readmission within 30 days (secondary outcomes)?

Research Question 2 (reach, adoption, and implementation): To what extent do the PCC champions and clinical staff engage with PCC education, gain confidence with and knowledge of PCC, and apply this knowledge in practice in their interaction with patients; and how do patients with dementia, family/carers, ward managers, champions, and clinical staff experience PCC in practice?

Research Question 3 (costs and benefits): What are the costs and benefits to the healthcare service with implementing PCC?

Research Question 4 (maintenance and dissemination): What organizational structures, systems and policies are required to disseminate, implement, and maintain PCC in healthcare services?

MATERIALS AND METHODS

The study protocol adheres to the Standards for Reporting Implementation Studies (StaRI) Statement [26] (Supplementary Table 1).

Project design

A two-year pre/post/follow-up evaluation of PCC outcomes will be conducted for a prospective group of patients with dementia, compared with retrospective patients (comparison group), and evaluation of PCC implementation and outcomes for clinical staff and the sub-acute, in-patient rehabilitation hospital (Fig. 1).

Setting and participants

Fig. 1

Project timeline.

The project will take place in a 35 bed sub-acute, aged care rehabilitation in-patient hospital located in Sydney, Australia. Prior to the COVID pandemic, each year on average the hospital admitted 465 people aged 60+ years, of whom approximately 155 (30%) had dementia. During the COVID pandemic thus far (2020–2022), individuals testing positive for COVID have not been admitted, reducing the number of people admitted with dementia to 108 on average each year. Four consented participant groups will be included: persons living with dementia admitted to the hospital (patients); adult family/carers of patient participants; clinical staff (medical, nursing, allied health); and PCC staff Champions.

Sample size power calculation

Meta-analyses of PCC trials in long-term and community care [14 , 19] and in the project’s pilot study [22] indicate that a sample size of 126 patents with dementia (63 per group) is required to reduce the incidence (p = 0.036) and detect a clinically meaningful change of 3 (5%) in the mean score of the primary outcome agitation, measured by Cohen-Mansfield Agitation Inventory (CMAI) [27], between prospective and retrospective (comparison) patient groups, with 80% power at two tailed alpha of 0.05 (assuming the standard deviation of an agitation score of 6 and within patient correlation of 0.6). For the year 2019-2020, there were 155 patients with dementia admitted to the project hospital (per individual stay) who met all the inclusion criteria required for project participation. Between 2020–2022, the number of eligible people with dementia admitted annually was 108 on average, owing to hospital COVID regulations. Thus, assuming 15% drop out of 108 potentially eligible patients, 80 patients would need to be recruited for the prospective patient group (July 2022- March 2023), and 80 retrospective de-identified and aggregated comparison patient data will need to be obtained (October 2021 to July 2022). Where COVID-19 regulations impact on prospective patient admissions during the course of the project, adjustments will be made to account for reduced sample size in data analysis.

Patients with dementia (n = 80) (prospective group)

Eligibility: Persons 60+ years of age; documented diagnosis of dementia and a Montreal Cognitive Assessment (MoCA) score of <20 [28, 29]; stable co-morbidities; not on an end-of-life pathway; and able/proxy able to provide informed consent in English.

Non-eligibility: No documented cognitive impairment; presence of an active delirium at time of recruitment; unstable or poorly controlled co-morbidities that would likely confound patient outcomes (e.g., end-stage cardiovascular or renal disease, psychotic illness); and unable, or proxy unable/unwilling, to provide informed consent in English.

Retrospective (comparison) patient group (n = 80)

Eligibility: The comparison group will be comprised of data obtained on persons 60+ years of age meeting all the patient eligibility criteria and no non-eligibility criteria (as stated above), who were in-patients of the hospital from October 2021 –July 2022 (9 months), and who provided written consent to their de-identified health data being used for secondary purposes. Retrospective patient covariates will be matched with prospective patient covariates for cognition, function and mood scores recorded in patient files.

Family member/carer of people (patient) with dementia (n = 80)

Eligibility: Adult close family/carer of a ‘consented’ prospective patient with dementia and who provides regular support to the person, i.e., at least once per week; and provision of informed consent in English.

Non-eligibility: Under 18 years of age; family member/carer of ‘non-consented’ prospective patient with dementia; inability to communicate in English.

Healthcare staff (n = 60)

Eligibility: All available nurses, allied health staff (psychology, physiotherapy, occupational therapy, speech pathology, social work, dietetics, podiatry, pharmacy), medical staff; permanent full- or part-time employed in the participating ward; and provision of informed consent.

Non-eligibility: Non-clinical staff; casual/agency staff; non-consent.

PCC staff champions (n = 8)

Eligibility: Senior nurses, allied health, and medical staff attached to in-patient treatment teams; permanent full- or part-time employment; knowledge and skills in dementia care; leadership capability and authority; and provision of informed consent.

Non-eligibility: Junior and non-clinical staff; agency staff; non-consent.

Participant recruitment and consent

Participant recruitment and consent procedures will adhere to approved health services and university ethical procedures (University of New South Wales: 2021/ETH00755; Australian Health Services REGIS: 23 Jul 2021/ETH00755, 11 Nov 2021/ETH11258, SSA approval 02092021). Two research assistants (RAs) employed on the project will recruit, consent, and obtain site and participant data. The RAs have been trained in procedures required to recruit and obtain informed consent from persons with dementia (patients) and family/carers and will be given on-site support and supervision by the lead investigator. Nominated hospital personnel not associated with the project (e.g., resident medical officer (RMO)/registrar, psychologist) will review clinical files to screen patients admitted to the hospital for study inclusion and exclusion criteria and administer the MoCA [28] where required, to determine eligibility. Based on available information, the RMO/registrar/psychologist will make in-person or telephone contact with the patient’s legally appointed ‘person responsible’ to obtain verbal permission to continue patient screening by the RA. The RA will assess the patient’s ability to give informed consent by explaining in simple terms what the project aims to achieve and asking a few very simple questions to confirm their understanding. Once the RA determines that the patient has capacity, the RA will obtain their written consent. Where the RA determines that the patient is unable to give informed consent, their person responsible (as defined by law) will be asked to provide written consent on their behalf.

The project advertisement will be made available to family members/carers of recruited patients, inviting them to consider participation. Family/carers (may include the person responsible) with an interest in joining the project will be asked to make direct contact with a RA, the lead project investigator, or the project manager, in person or via telephone or email. Written consent will be obtained using the family/carer PISCF. Healthcare staff will be recruited using the same procedure as for family/carers, with written consent obtained using the staff PISCF.

All participants will be provided with a copy of their written consent form, advised on how to withdraw from the project if they so choose, and issued with the withdrawal of consent form. Unique identifiers will be allocated to all consented participants.

Project intervention

PCC model

The previously piloted Kitwood [16] PCC model [22] has been adapted for implementation in the sub-acute in-patient rehabilitation hospital. The Enriched Model of Dementia (EMD) [30] and the Socio-Psychological Theory of Personhood in Dementia (SPTPD) [15] are the cornerstones of this PCC model. The EMD [30] recognizes that neurological impairment, past and present health issues, personality, psychology, and the social environment interact in the person’s experience and expression of dementia. The SPTPD [15] posits that a person living with dementia is a person in the fullest sense, in that they have agency (can make things happen in the world), are sentient (have a sense of who they are, i.e., personhood), are sensate (able to feel and express emotions), and have the need for and the capacity to have relationships. When these human qualities and needs are not supported in healthcare contexts, personhood is at risk of being lost. The SPTPD [15] proposes that behavioral changes most often arise in the person living with dementia from feelings of ill-being (e.g., sadness, agitation, frustration, anger), which can occur when personhood is not appropriately supported by staff. The Kitwood [16] PCC model, thereby, promotes support of personhood (identity, beliefs, values, self-respect, dignity), enabling autonomy in things that matter to the person (choice and decision-making), striving for well-being and fostering positive relationships.

System-level support of the PCC model

The requirements for successful adoption of the Kitwood [16] PCC model (Box 1) [21 , 31] will occur for this project.

Box 1. Requirements for successful adoption of the

Kitwood PCC Model:

•Executive and managerial staff’s investment in person-centered organizational systems (e.g., adequate staff numbers and skill mix).

•Support to family/carers so that they can be partners in care.

•Maintenance of bed allocation for patients during their hospital stay.

•Staff stability and consistent allocation of staff to patients.

•Staff education, training, and ongoing point of care support to staff in PCC practice.

•PCC Champions to support and guide staff in PCC.

The PCC program will be guided by the VIPS framework [32, 33] which provides indicators of organization-wide PCC practices. These are encapsulated by the following: V: valuing and respecting the person with dementia and those who care for them; I: treating people with dementia as sentient and sensate individuals with unique needs; P: considering the service from the perspective of the person with dementia and validating the person’s subjective experience; and S: creating a positive social and psychological environment in which the person with dementia can experience well-being through positive relationships.

Preparing the groundwork for PCC model implementation

In acknowledgement of the PCC model implementation success factors [34], the project team has consulted extensively with a range of experts in designing and developing the project’s methodology. An Expert Advisory Group (EAG) consisting of 12 consultants to the project includes executive and senior hospital managers, medical, allied health and nursing staff, a person living with dementia and current and former family carers, health policy advisors, dementia researchers, and healthcare educators. The EAG will meet four times each year of the project to provide guidance and advice to the project team. A ten-member project Steering Committee (SC) will provide oversight of the project at the sub-acute in-patient hospital. The SC is comprised of the managers of service operations and quality and safety, ward managers, directors of clinical streams (nursing, allied health and medical), a clinical nurse educator, a dementia nurse consultant, project team members, and hospital liaison personnel. These stakeholders have collaborated to plan the project and will contribute fully to its execution and evaluation through project governance agreements and bi-monthly meetings until the project’s conclusion.

Identifying PCC requirements at the system-level

An audit of the hospital culture [35] and systems operations [36] will be undertaken prior to the PCC champion training, and staff education and support program. The audit will identify any organizational and environmental issues that are considered barriers to the implementation of PCC. These issues will be discussed with the project’s SC and PCC champions to seek agreement on strategies and systems required to support the PCC model. The project team will work with senior and middle managerial staff to identify suitable PCC implementation strategies, to purposefully design the PCC education, training, and support program to meet the hospital’s needs and to plan for consistent staffing, pending COVID-19 regulations.

PCC training and education

A train-the-trainer model will be employed to train PCC staff champions and to educate and support clinical staff in applying the Kitwood [16] PCC model, as follows.

Role and training of PCC staff champions: The PCC champions will include senior hospital staff from medicine, allied health and nursing, taking a leadership role in guiding and supporting their colleagues in PCC practices. Champions will be trained in PCC approaches to focus on: 1) understanding and internalizing person-centered principles; 2)^, applying these principles in typical situations (e.g. patient agitation, resisting treatment, delirium); 3) collaborating with key stakeholders to facilitate and support staff adoption and maintenance of PCC; 4) empathetic communication skills; and 5) therapeutic healthcare practices in the presence of changed behavior in patients. Champions will be supported in planning, facilitating and role modelling PCC with reference to the strategies provided in their training program, including: concept checking; goal-directed activities; bespoke (5-min) mini-tutorials at shift handover, care/case conference, ward rounds and staff meetings; reinforcement of PCC in staff orientation and refresher programs; and collaborating with patients and family/carers in developing holistic care and therapy plans that place emphasis on well-being factors. The hospital will be reimbursed for backfill staffing to free up champions for training and provision of staff support. Champions will be awarded 12 Continuous Professional Development (CPD) points for their role.

Staff education and support in PCC: The staff PCC education and support program is being developed by a PhD student. The education and support program has been reviewed by the PCC champions, the SC and the EAG members, and has been piloted with 20 hospital staff. The program is comprised of 12 separate online modules covering the theoretical and practical applications of PCC, complemented by face-to-face education sessions on topics requested by staff. The program is guided by the VIPS framework indicators [32, 33] of a PCC healthcare service and includes a hard-copy education manual covering Kitwood’s [16] PCC foundations and the VIPS [32] indicators, with supporting references. Each online module takes approximately 30 min to complete and employs a range of adult learning activities including: synopses of research evidence to reinforce PCC foundations and VIPS indicators; video clips of PCC and non-PCC approaches to healthcare; problem-solving and reflection activities using real-life case studies; concept checking activities including quizzes on concepts presented; and discussion boards for sharing ideas among participants. Participating staff can gain access to the online modules via entry of their unique Study ID and can complete the modules at any time over the 9-month prospective patient data collection period. Ward managers and clinical stream directors have agreed to set aside time during working hours for staff to undertake the on-line PCC education program and/or to participate in face-to-face education sessions. Staff participants will be awarded one CPD point for each hour of education completed. The PhD student will monitor staff engagement with the PCC education and calculate education dose according to staff commencement and completion rates.

Clinical staff support in PCC practice by PCC champions: PCC champions will role model PCC and assist staff in daily practice to:

Develop greater PCC confidence and skills;

Engage in meaningful communication and positive relationships with patients and their family/carers;

Create a dementia friendly environment and reduce stressors for the patient;

Provide healthcare that is familiar, understandable and meaningful for the patient;

Arrange healthcare schedules that are congruent with the patient’s usual routines and preferences; and

Support the patient’s well-being through the provision of meaningful activities and empathetic support.

Project evaluation

Data collection

The project RAs will obtain demographic, clinical, treatment, and care data for prospective patients and demographic data for family/carers, with support as required by the lead investigator. The RAs will obtain patient data by reviewing their electronic medical record (EMR) files and hard-copy files, clarify file records with senior healthcare staff, hold conversations with patients and observe their healthcare delivery for two hours each week throughout their stay. Prospective patient and family/carer data will be recorded and stored securely at the project site in hard copy. Patient and family/carer interview data will be undertaken on-site in a private meeting room prior to discharge, or by telephone following discharge, and will be audio-recorded and transcribed verbatim. De-identified retrospective patient demographic, clinical, and treatment data similar to that obtained for prospective patients will be obtained by the RAs via the health service electronic medical record (EMR) system and review of hard copy files, supervised by the hospital medical records manager. Clarification of retrospective file records will occur in discussion with senior healthcare staff. The PhD student will facilitate staff self-report online questionnaire data via Qualtrics, and collection of staff hard-copy questionnaire data where this is the preferred method. Staff interview data will be obtained from an online platform TEAMS or by telephone and will be audio-recorded and transcribed verbatim. All data obtained will be de-identified by allocation of unique study codes and entered into a dedicated and secure online project folder using the platform Research Electronic Data Capture (REDCap) [37]. REDCap is a secure, web-based software platform hosted and managed by the project’s lead university, providing: 1) an interface for validated data capture; 2) audit trails for tracking data manipulation; 3) automated export procedures for seamless data downloads to common statistical packages; and 4) procedures for data integration and interoperability with external sources [37, 38].

Table 1

Project evaluation

Research Question 1. What is the effect of PCC for patients with dementia?
Construct assessed	Timeline	Validated measures	Other data
Participants
Effectiveness	Baseline (on entry to project)	MoCA (cognition) score [28]	Demographics
Patients with dementia	T1 (day 1–7)	FIM (function) score [41]	Comorbidities number &type
(Prospective group)	T2 (day 8–15)	HADS (psychological) score [42]	Secondary outcomes:
Patients with dementia	T3 (day 16- day of discharge)	Primary outcomes:	CAM (delirium) total number of episodes &type [43]
(Retrospective, de-identified group)	Post-discharge	CMAI (agitation) total number of episodes &mean severity score [27]	Incidents (e.g., falls, injuries) number &type
	Baseline (on entry to project)	MoCA (cognition) score [28]	Psychotropic medicines number &type
	T1 (day 1–7)	FIM (function) score [41]	Length of stay
	T2 (day 8–15)	HADS (psychological) score [42]	Discharge destination Hospital return within 30 days &reasons
	T3 (day 16- day of discharge)	Primary outcomes	Demographics
Post-discharge	CMAI (agitation) total number of episodes &mean severity score [27]	Comorbidities number &type
			Secondary outcomes
			CAM (delirium) total number of episodes &type [43]
			Incidents (e.g., falls, injuries) number &type
			Psychotropic medicines number &type
			Length of stay
			Discharge destination
			Hospital return within 30 days &reasons
Research Question 2. How is PCC practiced and experienced by people living with dementia,
family/ carers, PCC staff champions, and medical, nursing, and allied health staff and
their managers?
Construct assessed	Timeline	Validated measures	Other data
Participants
Implementation, adoption (learning)	Pre / Post PCC program	P-CAT (PCC knowledge, attitudes, practices) score [44]	Champion role fidelity -Focus groups
Staff &Champions	T1 (day 1–7)	SCIDS (PCC confidence) score [45]	Register - completion of education sessions
Staff &Patients	T2 (day 8–15)	QUIS (quality of interactions and care observations) [46]	PCC education program satisfaction questionnaires
Reach, acceptability (reaction)	T3 (day 16- day of discharge)	PCQ (ward climate) [35]	Individual semi-structured interviews, or focus groups.
Staff, Champions, and team managers	Post PCC program	POPAC (care and systems) [36]	Face to face or telephone semi-structured, evaluation interviews
Acceptability	Follow-Up (post-discharge)		Ward characteristics (patient/staff ratios, skill mix, manager/staff schedules, staff/manager turnover, patient freedoms, visitor access, physical space)
Persons with dementia &Family/carers	Pre / mid-point / post champion facilitated PCC program
Implementation, maintenance
Hospital systems &services
Research Question 3. What are the costs and benefits to the healthcare service with PCC, compared with usual healthcare?
Construct assessed	Timeline	Validated measures	Other data
Participants
PCC costs	Follow-up	CMAI (agitation) [27] total number of episodes, mean severity score &associated treatment/care costs	Champion training, staff education and support costs (staff time)
Hospital Education program		CAM (delirium) [43] total number of episodes &assoc. treatment/care costs	Incidents- number &associated treatment/ care costs
PCC costs & benefits			Length of stay cost
Hospital services
Research Question 4. What organizational structures, systems and policies
are required to disseminate, implement and maintain PCC in healthcare systems?
Construct assessed	Timeline	Validated measures	Other data
Participants
Maintenance, dissemination & scalability	Follow-up		Project implementation and outcome review
Steering Committee			Audit- healthcare plans
Hospital executive and managers			Workshop discussion - program success factors &policy recommendations
Expert Advisory Group

Evaluation methods

The project data to be obtained are described in Table 1. Details are included on how the PCC model knowledge translation success factors [39] will be applied in answering the project’s four research questions according to the RE-AIM framework [25] and the Kirkpatrick Evaluation Model [40] indicators for evaluating the applicability of the PCC staff education program.

Data analysis

Research Question 1 (effectiveness): The quantitative data obtained with validated measures identified in Table 1 will be analyzed by the project’s statistician using Stata [47] and interpreted in discussion with team members. Changes in the primary outcome agitation incidence and severity [27] and the secondary outcomes delirium incidence [43], patient incidents, psychotropic medicines and length of stay, discharge destination and unplanned hospital readmission within 30 days, will be compared for the retrospective and prospective patient groups using mixed model repeated measures approach. Adjustments will be made for patient baseline co-variates - cognition [28], function [41], and mood [42]. Mixed effect logistic regression model will be used for binary outcomes including the presence of delirium [43]. Mixed effect Poisson regression will be used for the count outcomes, including total number of agitation episodes [27] and total number of delirium episodes [43] during the hospital stay. Mean scores of agitation severity over time between groups will be compared. Generalized linear modelling will be used to compare the difference in length of stay between the retrospective patient group and the prospective patient group, adjusting for COVID-19 influenced changes in discharge policy. Logistic regression will be used to model the difference in primary and secondary outcomes for patients with a short stay (1–3 weeks) versus a longer-stay (4+ weeks) for the retrospective patient group versus the prospective patient group.

Research Question 2 (reach, adoption, implementation, and maintenance): Mean scores of positive and negative healthcare interactions and care quality [46], the care culture [35], and care systems [36] will be examined descriptively before, during and following the champion-facilitated PCC education program (Fig. 1). The PhD student will analyze staff questionnaire data, examining mean changes to follow-up in staff’s PCC knowledge, skills, and practice [44] and staff’s confidence with PCC practice [45]. Qualitative data derived from patient, family/carer, and staff interviews will be analyzed inductively using the technique described by Braun and Clarke [48]. The data will be reviewed thoroughly to develop a coding framework, from which themes will be developed, supported by participant quotes/statements. Data saturation will be reached when no new information is obtained from subsequent interviews [48]. Deductive analysis will be used for open ended questions in the champion training and staff education evaluation survey, with reference to the VIPS framework [32] which has guided survey questions [49]. Members of the research team will independently analyze these data using the following process: text-familiarization, data-categorization according to the a priori PCC principles (as per VIPS), interpretation of data and allocation of data codes, and identifying core concepts to derive key themes for each question. The data will be managed and organized in Microsoft Word and tabulated, and team members will discuss, compare, and document their independent and shared findings through an iterative process. Any discrepancies in findings will be discussed until consensus is achieved on the final codes that emerge from the data [48, 49].

Research question 3 (costs and benefits): Analysis of the costs and benefits of the PCC program will be undertaken by a consultant health economist. Data on the cost to deliver the PCC program with respect to staff time taken, and additional healthcare costs associated with incidence of agitation, delirium and patient incidents, and length of hospital stay will be calculated, based upon AR-DRG costs from the National Hospital Cost Data Collection [50]. The mean costs and mean health outcomes for the prospective patient group will be compared with the comparison patient group (retrospective data), and results will be plotted on a cost-effectiveness plane. Bootstrapping will be used to estimate a distribution around healthcare costs and health outcomes [51].

Research question 4 (dissemination, maintenance, and scalability): Implementation Science methods [25, 39] will be applied to interpret project outcomes in workshops with stakeholders, including the EAG, SC, PCC champions, and project participant volunteers. These data will be inductively analyzed using Braun and Clarke’s techniques [48]. We will aim to achieve stakeholder consensus on requisite systems, policies and practices required to incorporate the Kitwood [16] PCC model in the sub-acute rehabilitation hospital for patients with / without dementia, and to make recommendations on scalability and roll-out of the model across health services generally.

DISCUSSION

While the Kitwood [16] PCC model has been recommended for patients with dementia in the in-patient rehabilitation hospital [52, 53], only one qualitative study has thus far evaluated PCC implementation procedures and outcomes in this setting [54]. Robust evaluation of PCC implementation in rehabilitation for patients with dementia is therefore needed [55]. Evaluation of the Kitwood [16] PCC model in the acute, residential, and community health care settings suggests that health service executives and managers need to invest in PCC education and practice support for all clinical staff, support managerial training in PCC leadership and address organizational systems and cultures that favor systems operations over PCC principles [14 , 56]. This knowledge translation project provides an opportunity to identify the resources required to secure these forms of support for PCC across all clinical streams in the sub-acute in-patent rehabilitation hospital, and to determine the type and level of support that is achievable over the longer term.

Evaluation of project implementation will produce evidence to support a case for the Kitwood [16] model of PCC across healthcare services through examination of: clinical outcomes (agitation, delirium, incidents, and psychotropic medicines); quality of care interactions; service outcomes (length of stay, unplanned hospital readmissions); favorable healthcare experience indicators; evaluation of staff, manager and consumer implementation, maintenance and satisfaction with the PCC model; costs and benefits of PCC; and review of study processes, outcomes and the transferability of findings through stakeholder evaluation of system, policy and practice requirements. These composite findings will determine organizational capacity and systems required to maintain PCC education and support for staff across all clinical streams, and application of knowledge and skills gained in practice.

Project strengths

The project’s strengths include multi-level evaluation processes inclusive of different stakeholders, providing independent scrutiny of the Kitwood [16] PCC model, knowledge on how to scale this PCC model to new organizations, and build on expertise in designing multi-site implementation and effectiveness evaluation of the PCC model. The project will promote interoperability by using process and outcome data to facilitate consistent and replicable implementation of the organizational structures required to support PCC across different healthcare systems. The project will also contribute to a collaborative community of PCC advocates by participating in stakeholder workshops and collaborating with other participants on scientific and practice-oriented publications and presentations.

Project limitations

The project is confined to one small, city-based sub-acute in-patient rehabilitation hospital, which may not be representative of sub-acute in-patient hospital services provided to people with dementia in regional and rural areas. Because of the limited number of patient admissions who will likely meet all inclusion criteria, there is potential for inadequate recruitment of patients and family/carers. This may occur where COVID-19 regulations impact on patient admission and discharge policies and family visitation policy, hospital staffing, staff mix and staff/patient ratios, and staff’s opportunities to engage with online and face to face PCC education. Because the hospital has only one in-patient ward of 35 beds, it is not possible to allocate patients to either a control group or an intervention group contemporaneously, or in sequence, given the project’s limited 2-year time frame. The inclusion of a retrospective control group is a methodological limitation which will potentially require making adjustment to participant baseline co-variates prior to data analyses. Nevertheless, data obtained for the retrospective patient group will be impacted by the same COVID regulations as for the prospective patient group. Visitors will have limited access, visitors and staff will require COVID screening, COVID and influenza vaccinations and use of masks. For direct patient contact, staff will be required to use personal protective equipment (PPE), including high-density masks, and eye goggles or face shields. While COVID-19 regulations may at times prevent project staff’s access to the hospital and thus, timely data collection, the SC have agreed on a contingency plan to counteract delays to patient access.

Conclusions

The Kitwood [16] PCC model will be implemented and evaluated in the Australian sub-acute, in-patient rehabilitation hospital for patients with dementia, and within the medical, nursing and allied health clinical streams. Participation in the PCC champion role by representatives of the whole healthcare team will facilitate the uptake of PCC across all clinical streams. Data obtained in answering the project’s research questions will identify the challenges and enablers to engaging the healthcare team in online and face to face PCC education, application of PCC knowledge and skills in practice and the essential system-wide changes and learning required to support PCC. Most importantly, this project will identify any additional benefits that might arise with the PCC model for patients with dementia in the sub-acute in-patient rehabilitation healthcare setting, and the strategies and resources required to disseminate effective PCC practices across healthcare services.

Footnotes

ACKNOWLEDGMENTS

An Expert Advisory Group (EAG) comprising dementia advocates, people living with and caring for those with dementia, clinicians, policy makers and NSW Health agencies, has contributed substantially to determining the project aims, the research questions, project methodology and the research translation frameworks. The project steering committee (SC) has established governance arrangements and will provide on-site project oversight.

FUNDING

This research project has been awarded a World Class Dementia Research Grant by the Dementia Centres for Research Collaboration (National Health and Medical Research Council of Australia) Ref. RG180842-E.

CONFLICT OF INTEREST

HB is or has been an advisory board member or consultant to Biogen, Nutricia, Roche and Skin2Neuron. He is a Medical/Clinical Advisory Board member for Montefiore Homes and Cranbrook Care. The other authors have no conflict of interest to report.

DATA AVAILABILITY

Upon study completion, any datasets used and/or analyzed during the current study will be available from the corresponding author (LC) on reasonable request.

The supplementary material is available in the electronic version of this article: .

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