Objective To describe the development of a patient and family-centred care (PFCC) conceptual framework within a small community Australian Hospital.
Methods A scoping review of scientific and grey literature and community hospital stakeholder discussions were used to identify and design a conceptual framework for PFCC across five core pillars of leadership, engagement, service delivery, learning and environment.
Results 107 publications were identified and 76 were included for data extraction. A draft framework was constructed and modified following consultation with hospital stakeholders across a small Australian Community Hospital. The ‘Caring Together’ framework outlines three core layers: (1) the focus of our care is the experiences of our consumers and staff; (2) concepts of leadership, environment, service delivery, engagement and learning; and (3) the overarching fundamental values of being heard, respected, valued and supported by staff and consumers at all levels in an organisation.
Conclusions The conceptual Caring Together framework structures key PFCC concepts across organisational priority areas within an Australian healthcare setting and can be used to guide implementation of PFCC at other small hospital facilities. Changes to national and state healthcare funding may help facilitate improved hospital facility implementation of PFCC, and ultimately improve consumer healthcare satisfaction and clinical outcomes.
- efficiency, organizational
- health policy
- organisational culture
- performance measures
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Patient, family-centred care (PFCC) is holistic care which acknowledges that patients, families and staff are central to the delivery of better healthcare.1 In an ideal healthcare system, patients and families should be empowered to be an equal and active player in their healthcare via collaborations with healthcare professionals and the healthcare system. The utilisation of various aspects of PFCC have led to improved health economics and more efficient use of healthcare services2 3 and improved quality of healthcare, relationships and consumer and staff experiences for patients with dementia,4–6 cancer,7–9 frail elderly,10 11 cardiac12–15 and diabetes.16 17 Despite emerging literature on the positive effects of PFCC in healthcare, little is known on how to practically embed PFCC broadly across a community hospital setting which covers the care continuum from paediatrics to the frail elderly population within acute and ambulatory care settings.
In Australia, there have been national health reform initiatives acknowledging the importance of PFCC. This includes: (1) the Australian Charter of Healthcare Rights,18 which ensures consumers and providers have a shared understanding of individual’s rights to accessing healthcare; (2) the Australian Safety and Quality Framework for Health Care,19 which highlights consumer centred care as one of the core pillars for safe and high quality care; and (3) mandatory accreditation for all hospitals using the National Safety and Quality Health Standard, which also recognises the collaborative value of consumers and health professionals in the delivery of healthcare.20 Consistent with national reforms, legislation in Queensland related to the Hospital and Health Boards Act 201121 changed governance from a Central Health Service District to Local Hospital & Health Networks in July 2012. This change in legislation ensures local communities and consumers determine their individual healthcare service needs.
Given the emerging literature on the benefits of PFCC in healthcare settings and government legislation and policies to support PFCC, there are limited evidence-based frameworks available to support how PFCC is embedded in small Australian hospitals. Our hospital is a 265-bed facility (Level 4, Clinical Services Capability Framework)22 and provides adult and paediatric services across acute and ambulatory care settings to a socioeconomically disadvantaged population. Current international PFCC institutes, such as Planetree,23 provide an accreditation process; however, costs to access and become PFCC accredited are typically out of reach for community hospital budgets. State frameworks such as the Australian Capital Territory Health’s Consumer Feedback Management Policy,24 New South Wales Health Caring Together: Health Action Plan,25 Western Australia Health Consumer, Carer and Community Engagement Framework,26 and Health Consumers Queensland and The Consumer and Community Engagement Framework,27 all provide general guidance on consumer engagement and feedback but are limited in evidence underpinning their development and implementation. Thus, the aim of this study was to develop an evidence-based conceptual framework that can be used to implement PFCC practices across all aspects of a small community Australian Hospital.
In 2015, an independent staff and consumer survey (n=500) identified that PFCC was a key area for improvement at our small Australian Community Hospital. As a result, a scoping review of scientific and grey literature; and community, staff and consumer engagement processes were used to identify and design a conceptual framework for PFCC within our healthcare setting. The scoping review was undertaken as a quick and accurate method of identifying relevant information sources while ensuring search results are broad enough to capture wider discussion and findings.28 Discussions with stakeholders across our facility were used to complement findings from the literature and ensured concepts proposed in the conceptual framework were recognised, understood and supported for future implementation.
Initially, a scientific literature search was undertaken by the lead author. In January 2019, a comprehensive search strategy was developed in consultation with a professional health librarian to identify and review topical publishing in the electronic databases: Cochrane, Medline, Embase, SocIndex, Cummulative Index to Nursing and Allied Health Literature (CINAHL) and AustHealth. References cited in retrieved publications were also scanned for inclusion. Retrieved articles discussed patient care models and associated aspects including value, service delivery, engagement, learning, environment and staff/patient experiences. The following inclusion and exclusion criteria were applied:
Inclusion criteria: model (eg, framework or theory) or key elements of patient-centred care, attitude of health personnel, empathy, hospitals and community.
Exclusion criteria: etters to the editor, editorials, commentaries and non-English language.
Reviewing consisted of a two-step process, review of the title, abstract and keywords, and thereafter review of the full text. A search of the grey literature was also undertaken. This identified resources including relevant topic information produced by government and not-for-profit health organisations.
The scientific literature and comprehensive literature search yielded 107 unique publications. After reviewing titles and abstracts, 85 publications remained. After full-text reviewing, 76 articles were included in this study for contribution towards the conceptual framework for PFCC implementation within our healthcare facility. A majority of the articles included in this study were descriptive studies and included a heterogeneous sample of adult and paediatric clinical populations within healthcare settings worldwide.
The search for relevant grey literature led to the inclusion of Australian government websites, frameworks and guidelines which were relevant to PFCC practices. This includes The Australian Institute for Patient and Family Centred Care,1 Australian Charter of Healthcare Rights,18 The Australian Safety and Quality Framework for Health Care,19 National Safety and Quality Health Service Standards,20 Queensland Hospital and Health Boards Act 2011,21 Metro North Hospital and Health Service Clinical Services Capability Framework Self-Assessment,22 Planetree,23 Australia Capital Territory Health’s Consumer Feedback Standards,24 Caring Together: The Health Action Plan for New South Wales,25 Western Australia Health Consumer, Carer and Community Engagement Framework,26 Consumer and Community Engagement Framework for Health Organisations and Consumers,27 New South Wales Clinical Excellence Commission—Guide to Health Literacy29 and Australian Commission on Safety and Quality in Health Care—Health Literacy30 and One View Health Care PFCC.31
Community, staff and consumer engagement processes
Between October and December 2015, multiple focus groups were held to ascertain what PFCC meant to clinicians (eg, medicine, nursing, allied health), non-clinical staff (eg, administration, service improvement, research), community organisations (eg, general practitioners, local schools) and consumers. Key themes expressed in each focus group were collated and combined with targeted grey literature into a conceptual framework.
The draft conceptual framework was developed by the authors based on a combination of the results of the scoping review and key themes expressed in the community, staff and consumer focus groups. The draft conceptual framework was subsequently presented at facility-level executive and PFCC governance committees for feedback and endorsement. Our facility executive and PFCC governance committees are made up of representatives from: consumers (eg, past patients, health consumer representatives); clinicians and executives across medicine, nursing, allied health, administration, finance and communications. A revised conceptual framework was then adapted and expanded on based on feedback received. Further adaptations were made which aligned with relevant information from our hospital and health service wide key strategic priorities (eg, strategic plan 2014–2018; health services strategy 2015–2020; customer and consumer engagement strategy 2013–2015; clinician engagement strategy 2012–2015) and WHO key components of a well-functioning health system.32
Caring together framework for PFCC
Our ‘Caring Together’ framework (figure 1) outlines three core layers essential in embedding PFCC at our hospital facility. The innermost core reflects the experiences of our consumers and staff, considered the centre and focus of our care. The middle core layer describes four key elements of: leadership, environment, service delivery, engagement and learning. Finally, the outer core outlines the overarching fundamental values of being heard, respected, valued and supported by staff and consumers at all levels of in our organisation. The key elements integral to how we are embedding PFCC are described next.
Changing workplace culture is challenging and that commitment from all levels of leadership within an organisation is required.33 Leadership behaviour has been positively correlated with PFCC in aged care staff (n=3661)34 and reduced stress in staff in the aged care setting.35 Transformational leadership focuses on empowering teams and is based on the premise of mutual appreciation and reciprocal respect to achieve common goals and visions.36–38 This type of leadership style has been associated with better team performance, patient care and staff well-being and satisfaction.39 40 High-level participation from nursing staff in organisational PFCC initiatives is more likely when strengths-based transformational leadership is used within a healthcare facility.41
Examples of transformational leadership under our Caring Together framework include governance changes that incorporate the values of PFCC into our organisation’s vision and code of conduct; and including a dedicated position within our organisational structure focused on transforming workplace culture towards PFCC. Patients, their families and the community are involved in the governance of our organisation. This involves including consumer representatives as equal members in governing committees and establishing a PFCC governing body to operate and meet on a regular basis to support and encourage PFCC initiatives. Leaders within our organisation model PFCC by interacting and engaging with front-line staff, patients and families; and/or consumer representatives. Ideas and feedback are welcomed and actioned via monthly staff forums, communication with our executive director via direct email, and consumer feedback forms located in all clinical areas. In addition, it is mandatory that the recruitment of all senior medical and executive management positions at our facility include at least one consumer representative on interview panels.
Engagement is a core pillar in our PFCC Caring Together framework because high-quality patient–practitioner communication can lead to improved healthcare experiences and minimise unnecessary intervention and/or anxiety for patients,42 particularly in the area of cancer care8 and in pharmacy practice.43 Engagement is defined as a complex interplay between practitioner and consumer relationship, which is constantly evolving and mutually contributed towards and based on each other’s actions; and perceptions of each other’s actions.44 Engagement from all staff within our organisation is fundamental to the relationships built with our patients and their family relatives for the effective delivery of our healthcare services and outcomes. The way healthcare staff respond to patients can influence the patient’s perceptions of positive and negative experiences.45 Verbal and non-verbal communication strategies that validate and acknowledge other’s emotions and perspectives are preferred within our PFCC framework, as this leads to more positive benefits to the patient–practitioner relationship in a variety of healthcare settings.46
A communication approach which acknowledges the patients personal journey, their individual personality, preferences, current abilities and ongoing need for support, is recommended to support individualised care and the patient’s sense of autonomy and control with their healthcare journey.10 47 48 Studies in paediatrics,49 adult diabetes,16 internal medicine and primary care50 have also reported similar results in relation to consumer preferences on individualised engagement and a neutral communication style.51 52 In our organisation, mandatory training is provided to all staff to ensure meaningful interactions and professional communication styles.53 Onboarding of new medical staff includes a 1-hour educational session of our PFCC values and principles, which is jointly delivered by hospital staff and consumers. Specific training provided to new staff include: (1) communication, respect, accountability equals safe healthcare training course; (2) probe, alert, challenge, emergency language; and situation, background, assessment, recommendation tools.
Staff engagement is also important under the engagement element of our Caring Together framework. Improved job satisfaction has been shown when staff perceptions of PFCC in their unit is high, compared with other units with less focus on PFCC.54 Improvements in job satisfaction, staff retention, staff well-being and better quality patient care have resulted when leaders empower their staff to act in ways that are fitting and that they are left to trust making their own decisions, particularly in nursing homes.37 Staff also need to be orientated and managed in a PFCC way for a PFCC workplace culture to be possible.37 55 56 Bright et al44 found that engaged practitioners (eg, staff who showed passion, laughter, positive facial expression) improved patient outcomes and patient satisfaction. Conversely, disengaged practitioners impacted on the patient’s confidence (eg, feelings of isolation) and how they delivered services (eg, delay in offering interventions).
Examples of staff engagement under our PFCC Caring Together framework include a committee for planning of staff events; annual staff health and well-being themed programmes; quarterly barbeques to thank staff for their ongoing commitment to the organisation; and staff are kept informed of organisational updates via a monthly staff forum and a ‘Caring Together in Action’ staff newsletter. In our organisation, we celebrate and acknowledge staff under the ‘Shining Star’ and ‘Heart Felt’ categories on a monthly basis. The Shining Star award is peer nominated in recognition of small actions which help the work of others while the Heart Felt award is patient nominated for outstanding service. We also host an annual ‘Caring Together Excellence Awards’, which celebrate staff in varying categories such as ‘values in action’. In addition, systems are in place to support professional development and career advancement such as annual professional development plans for all staff within the organisation. Our staff also have access to local gym and fitness clubs via our ‘Fitness Passport’ programme—a joint initiative between our community and hospital facilities.
Service delivery under our PFCC Caring Together framework strives to facilitate the best possible care experiences through shared decision-making processes and integration of care. There is increasing evidence that the inclusion of caregiver/family involvement in healthcare planning, also known as shared decision-making, can minimise adverse events and complications.57–62 Further, caregivers prefer preventative supports over reactionary supports to minimise burnout and other detrimental health outcomes.63 In support of shared decision-making in healthcare,64 studies on adults with cardiac issues have demonstrated that significantly improved self-efficacy and return to preactivity levels occur when patients are allowed to share their story; and share in the development and ownership of their own healthcare management plan.12 13
In our organisation, shared decision-making processes can be a passive or active process for the patient, depending on their preferences. To empower and assist our patients and families to actively participate in their care at our hospital, we have ‘speak up, ask questions’ posters displayed on walls in all clinical areas. For our admitted inpatients, the provision of patient discharge envelopes (known as patient powerpacks) is provided to patients and their families. The patient powerpack lists information which helps prompts our patients and their families to ask specific questions while in hospital and provides a canvass for our staff to place and discuss relevant care information in for appropriate follow-up post discharge.65 66 For caregivers who choose to stay overnight, our organisation has a boarding policy which allows caregivers appropriate access to food and a temporary bed. Finally, the incorporation of a consumer living with dementia to help staff and management codesign our newly opened ‘Gentlemen and Ladies Ageing with Dignity’ unit is another example of how our facility attempts to use shared-decision making processes in major organisational planning.
Integrated healthcare for patients with multiple comorbidities requires flexibility as the needs of consumers change over time and adapting to those needs promotes PFCC.16 67 68 Service access across health and social care sectors is important at our facility, given our low socioeconomic demographics.67 Under PFCC, service partners need to work together to minimise limitations which impact on service access for consumers such as resource (eg, waitlist times) and location (eg, distance to appropriate service) barriers.11 69 Improved health-related outcomes, patient satisfaction and reduced healthcare system costs have been shown when coordination of care for adults and children with chronic disease is managed in a coordinated way.70–73 Integration of care based on our PFCC Caring Together framework highlights that strategies are multifaceted and can include health promotion, care coordination; service partnerships; and multidisciplinary collaboration.58 67 73–77
Specific examples of integrated care at our hospital facility include: partnering with general practices for service access planning (eg, team care arrangements); multiple nurse navigator positions; daily multidisciplinary team meetings to facilitate discharge planning for inpatients; use of telehealth to support access to care when patients are located in rural regions; formal research into healthcare pathways for children with developmental chronic conditions; and involvement in community healthcare alliances comprising local schools, government, non-government and private community agencies.
Continual PFCC education and learning from staff and consumer experiences are essential in improving the design and delivery of healthcare services.78 Increased knowledge in PFCC and acceptance of PFCC patient–practitioner relationships is possible when a 4-day training course on PFCC is provided to a group of allied health professionals.79 At our facility, mandatory orientation for all new staff is provided and includes an informational session on our PFCC Caring Together mission, values and framework. All staff in our organisation are also required to complete annual cultural awareness training. Regular PFCC training is tailored and provided to staff based on consumer and staff feedback via our compliments and complaints management system.
Our facility also recognises that low health literacy in our population influences on how we discuss and provide education, intervention and follow-up care options for patients. Health literacy is defined as a person’s ability to understand information, resources, supports and environments available to them to manage their healthcare. Low health literacy has been attributed with poorer health outcomes, reduced compliance to healthcare plans, increased neonatal morbidity and increased healthcare costs.80 81 Specific strategies to increase health literacy include: training health literacy ‘champions’ throughout the organisation; consumers reviewing patient education resources; using plain language (ie, use of short sentences and an active voice); checking the patient’s understanding using the ‘teach-back’ method; and having patient educational resources which have plenty of white space.82 In Australia, there are practical guides available on the implementation of health literacy friendly facilities, including guidelines by the New South Wales Clinical Excellence Commission29 and Australian Commission on Safety and Quality in Health Care.30
Comfort is embedded to PFCC frameworks worldwide and acknowledged as an important element in PFCC.31 83 Comfort is multifaceted and includes patient’s physical discomfort, perception of control, optimism and resilience; and the personal sense that they are being cared for and valued by healthcare staff.84 Using the ‘Comfort Always Matters’ framework,84 comfort for a consumer is complex and intertwined by the level of family involvement, level of staff engagement/skillset/assistance and physical factors, such as ambience, which impact on the clinical environment. Healthy workplace environments are essential in facilitating PFCC culture as positive correlations exist between healthy patients, staff well-being and healthy workplace environments.85 Strategies to promote PFCC healthcare environments focus on a safe environment and include: avoiding clutter in the hallways, increased lighting, using clear signage for patients and families to navigate the hospital, and dedicated areas for patients to have social interactions.86–89 In our facility, social activity areas have been implemented on adult wards to encourage patients to socially connect and stimulate their minds with magazines, drawings and sudoku puzzles. Each social activity area has brightly coloured decorations—see figure 2.
This article has outlined the development of our Caring Together conceptual framework used to guide how we embed PFCC within our Australian hospital facility. Many studies on PFCC to date have gathered PFCC perspectives from interviews with professional staff and consumers, but lack strong empirical methodological designs to evaluate levels of engagement and PFCC.90 91 Future studies could consider using formal validated outcome measures on evaluating different aspects of PFCC, including the five core pillars outlined in our Caring Together framework. The Primary Health Care Engagement Scale92 and Valuing Patients as Individuals Scale93 are possible scales for consideration as emerging validated outcome measurement tools in levels of engagement and PFCC.
Although our facility endorses and supports PFCC, we acknowledge that in some clinical contexts (eg, intensive care units),94 the implementation of some components of our Caring Together framework (eg, shared decision-making in service delivery) may be more difficult due to the nature of the patient’s biophysical compromise. Nevertheless, the Caring Together framework is intended as a guide only and it is important that individual clinical areas use different aspects of the framework to best promote PFCC in the most safe and efficient way for patients, families and staff. In addressing some of the limitations in implementation within the intensive care unit setting, chaplains and social workers have been identified as valuable resources in the intensive care unit as they are not only able to provide nurses with the relevant supports, but are able to meet the emotional and psychosocial needs of the patients using PFCC communication.95 In addition, introducing an intensive care unit diary for patients and families can increase PFCC and improve teamwork and communication between staff, patients and families.96 This highlights that PFCC within difficult clinical settings, such as the intensive care unit, is in fact possible.
Current models of healthcare funding for Australian public hospitals are predominately based on diagnostic-related groups (DRG).97 It has been suggested that this type of funding model promotes under servicing to lower costed DRGs and over servicing of higher priced DRGs98 to achieve higher reimbursement.99 DRG-based hospital funding does not use comprehensive casemix data (eg, patient-related factors of multiple comorbidities, satisfaction) which are intrinsic to the effective management of health conditions.98 At present, there are no criteria for successful levels of PFCC implementation in current Australian healthcare funding models. The USA and UK are arguably considered the leaders in PFCC and evaluate consumer satisfaction within their relevant healthcare models. Consumer satisfaction, as key performance indicators for the distribution of healthcare funding, has led to increased consumer satisfaction,100 but variable sustained improvements in clinical outcome measures.101 Increased implementation of PFCC practices into Australian hospital facilities are more likely to occur when there are financial rewards and/or components of healthcare funding to motivate hospital facilities to implement PFCC. Future funding allocation models could consider a balance between DRGs, level of consumer and clinician satisfaction, and evidence-based management and innovation. As such, block budgets for hospital and health services across Australia may be an option to help allow sustainable implementation of PFCC. In addition, rigorous cost-effectiveness evaluation plans of PFCC and clinical outcomes should mandatory to support sustainability and future adaptations to proposed funding models in Australian healthcare.102
Limitations in the development of our PFCC Caring Together framework includes the use of a scoping review and completion of site-specific focus groups without defined study protocols, which impacted on our ability to definitively draw conclusions for broader generalisation of our PFCC framework to other Australian hospitals. Nevertheless, the advantage of our novel approach which combines consumer perspectives with available evidence base provides a solid foundation for the development of a PFCC framework that is specific to the needs of our small Australian community hospital. Our study has improved our understanding of PFCC practices and enabled us to identify the multiple influences on PFCC practice implementation within our hospital facility. Our PFCC Caring Together framework outlines five core pillars which have guided how we are embedding PFCC at our hospital facility. PFCC is not an initiative or a project, it is a combination of systems, procedures and behaviours that are rigid enough to provide consistent safe care, but flexible enough to meet the needs of evolving legislation, a changing workforce and diverse patient cohort. The five core pillars describe updated literature across leadership, engagement, service delivery, learning and environment within healthcare settings; and acknowledges that our patients and healthcare colleagues remain the central focus in all our day-to-day activities. The ongoing implementation of PFCC practices in our facility will be guided by future local and international research outcomes; and changes in organisational and Australian government policies.
Contributors LLR and SM conceptualised the study. TF and JO-S planned the study. All authors contributed towards data collection throughout the study. TF and JO-S extracted and reviewed all articles associated with the scoping review. TF drafted the initial manuscript. All authors provided critical intellectual input into the final manuscript.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient and public involvement Health professionals and consumers participated in an online survey and focused groups. Our local PFCC governance committee, which consists of consumers, staff and executives, provided initial feedback and final endorsement of our PFCC ‘Caring Together’ framework. Patients were not invited to participate in the scoping review component of this study due to the technical nature of skills required.
Patient consent for publication Not required.
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement There are no data in this work.