Person-centered Care Model Research Articles

The need to consider 'temporality'in person-centred care of people with motor neurone disease.

The overall aim of this paper is to provide practical insight into the way that professionals caring for a person with motor neurone disease (MND) can recognise, respect and respond to that person's temporality; that is, the person that they have been, that they are nowand that they will be in the future. MND is an umbrella term for a group of four rare, devastating neurodegenerative terminal diseases of middle/later life. Previously, we have acknowledged the importance of different time periods in the trajectory of MND as an illness, for example, during the diagnosis stage through to end of life and decision-making at that time. Living with MND can cause anxiety at all stages of the disease trajectory especially as it can be difficult for people living with MND to communicate their desires and concerns to professionals and carers. It is important that professionals continue to provide holistic care throughout the illness trajectory and the aim of this paper is to explore past research about caring for someone with MND in relation to the concept of person-centred care. The paper is based on the concatenated exploration of the findings of a hermeneutic phenomenological project. Thus, this discursive paper links elements/studies which have been published previously to develop a model of person-centred care for people with MND which recognises and respects their temporality. We suggest MND has a significant impact on a person's lifeworld. The proposed person-centred care model focuses on understanding (interpreting) a person in a wider temporal frame and beyond the context of their illness. The expected collaborative outcomes are that: a person is acknowledged as more than a 'patient with MND'and that a professional is providing person-centred care based on individuality of the person, through a temporal lens. This requires a collaborative approach between the person, othersand professionals. Such person-centred care, focused on individuality, may prevent a person experiencing life in crisis and suffering towards the end of life.

1154-P: Racially and Ethnically Inclusive Recruitment Strategies from the CoYoT1 to California (CTC) Study

Background: The prevalence of type 1 diabetes (T1D) is increasing within racially and ethnically marginalized populations, highlighting the need for effective recruitment strategies that not only address healthcare disparities but also rebuild trust in medical research. Recently, the CoYoT1 to California (CTC) study evaluated a person-centered care model designed to support racially and ethnically diverse young adults (YA) who receive care at a hospital-based pediatric T1D clinic. In addition to treatment effectiveness, the study examined the success of recruitment strategies. Methods: Potential YA participants were approached in-person or remotely (by phone, email, or text). Those with clinic appointments during study recruitment were approached in-person, with recruiters focusing on cultural humility to connect with families; the concept and process of research was introduced, and families were allowed to ask questions as needed. Remote recruitment utilized multiple pre- and post-appointment messages with basic descriptions of the study or follow-up details as needed. Categorical data were compared using chi-squared tests. Results: The study approached 338 potential participants and recruited 68 (20%). Reflecting successful recruitment of diverse YA, study participants were representative of the clinic population in terms of racial and gender identities, and identified as Latinx (29, 43%) more often than those who declined (100, 37%; P=0.40). Recruitment strategy was significantly associated with participation, as most participants were recruited in-person (40, 59%), while most who declined did so remotely (200, 74%; P<0.0001). Conclusion: In-person recruitment is more effective for enrolling diverse YA and their families, as it allows recruiters to build rapport, and empowers families with information and choice. Internal and external barriers may prevent diverse YA from attending clinic appointments in-person, ultimately impacting research equity. Disclosure F.Gonzalez: None. M.W.Reid: None. E.Salcedo-rodriguez: None. J.Flores garcia: None. S.Hiyari: None. A.Torres sanchez: None. E.Pyatak: Research Support; Abbott Diabetes. D.Fox: None. J.Raymond: None. Funding Patrick and Catherine Weldon Donaghue Medical Research Foundation

Practical management of complexity in older people with HIV: approaching an international consensus

ABSTRACT Globally the community of people with HIV is ageing, and some of these have increasingly complex care needs, with a known excess of non-HIV related comorbidities and related issues including consequent polypharmacy. At the 2022 International AIDS Conference in Montréal, Canada, the “Silver Zone” was created in the Global Village as a safe space for older people with HIV. As part of the Silver Zone activities, a session discussing global models of care for in this group was held. HIV treatment providers and advocates from diverse resource settings and with a diversity of expertise were invited to share their experience, reflections, and ideas, and this consensus statement was formed based on these discussions. Different approaches to care emerged, based on local needs and resources, and it became clear that issues of complexity and frailty need not be age limited. Despite clear regional differences, some common themes became apparent, and a consensus was established on basic principles that may be considered in diverse settings. These are discussed here, with agreement on necessary proximal steps to develop bespoke person-centred care models.

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

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

An Evaluation of the Relationship between Training of Health Practitioners in a Person-Centred Care Model and their Person-Centred Attitudes.

The Esther Network (EN) person-centred care (PCC) advocacy training aims to promote person-centred attitudes among health practitioners in Singapore. This study aimed to assess the relationship between the training and practitioners' PCC attributes over a 3-month period, and to explore power sharing by examining the PCC dimensions of "caring about the service user as a whole person" and the "sharing of power, control and information". A repeated-measure study design utilising the Patient-Practitioner Orientation Scale (PPOS), was administered to 437 training participants at three time points - before training (T1), immediately after (T2) and three months after training (T3). A five-statement questionnaire captured knowledge of person-centred care at T1 and T2. An Overall score, Caring and Sharing sub-scores were derived from the PPOS. Scores were ranked and divided into three groups (high, medium and low). Ordinal Generalised Estimating Equation (GEE) model analysed changes in PPOS scores over time. A single, short-term training appeared to result in measurable improvements in person-centredness of health practitioners, with slight attenuation at T3. There was greater tendency to "care" than to "share power" with service users across all three time points, but the degree of improvement was larger for sharing after training. The change in overall person-centred scores varied by sex and profession (females score higher than males, allied health showed a smaller attenuation at T3). Training as a specific intervention, appeared to have potential to increase health practitioners' person-centredness but the aspect of equalising power was harder to achieve within a hierarchical structure and clinician-centric culture. An ongoing network to build relationships, and a supportive system to facilitate individual and organisational reflexivity can reinforce learning.

HEALTHCARE PROFESSIONAL EMPOWERMENT

Background: Healthcare professional specialties, including psychiatry, have had to adapt to the unprecedented challenges created by COVID-19 by transforming the service to benefit patients and improve sustainability of the workforce.Methods: This short paper provides an experiential perspective and highlights a selection of the recent relevant guidance and key publications in the field while outlining examples of practical adaptations made by mental healthcare professionals to rapidly organize a “virtual” person-centered model of care to deliver a hybrid psychiatric service while maintaining staff mental and physical well-being.Results: Mental healthcare professionals have risen to the challenge of COVID-19 by reconfiguring the current model of care and advancing in the use of technology to provide a hybrid model of patient care. With the unprecedented situation created by COVID-19, these rapid developments promoted innovative ways of working that could be beneficial, flexible and improve patient care as well as potentially create a more healthy work–life balance for staff in the medium to longer term.Conclusions: COVID-19 is the greatest public health challenge in the 21st century to date. Mental healthcare professionals have demonstrated an ability to successfully and rapidly adapt to create a virtual way of working and provide a more flexible person-centered model of care for patients. By shifting conventional work patterns, the situation allowed the opportunity to rethink current healthcare delivery. The unprecedented scenario empowered healthcare professionals to address inefficiencies and system failures in the current system and advance in ways of working which could potentially improve the sustainability of the limited healthcare workforce within an already pressurized system and promote a more person-centered model of care.

The contribution of hospitality services to person-centred care: A study of the palliative care service ecosystem

This paper presents a new perspective on person-centred care, examining the role hospitality plays in palliative care. Despite a burgeoning, clinically derived and focused evidence-base, the constituent parts of person-centred care in this service ecosystem are not fully understood. An assessment of hospitality and healthcare literature concludes that the contribution of hospitality services to palliative care are seldom appreciated. Systematic stories (n = 239) collected from patients, families, and the bereaved accessed via five hospices, a hospital-based Palliative Care Unit, and a general hospital, geographically dispersed around the UK, are examined through the application of a storytelling tool designed to capture the transitional nature of service experiences. Hospitality services are found to play a profound role in care at this lifestage. They are integral to a person-centred care model which ascends through knowledge, emotions, amenities, social, and holistic steps over time. Research limitations and opportunities for future research are detailed.

Beyond patient delay, navigating structural health system barriers to timely care and treatment in a high burden TB setting in Papua New Guinea

ABSTRACT Tuberculosis (TB) is a major public health issue in Papua New Guinea, with incidence rates particularly high in the South Fly District of Western Province. We present three case studies, along with additional vignettes, that were derived from interviews and focus groups carried out between July 2019 and July 2020 of people living in rural areas of the remote South Fly District depicting their challenges accessing timely TB diagnosis and care; most services within the district are only offered offshore on Daru Island. The findings detail that rather than ‘patient delay’ attributed to poor health seeking behaviours and inadequate knowledge of TB symptoms, many people were actively trying to navigate structural barriers hindering access to and utilisation of limited local TB services. The findings highlight a fragile and fragmented health system, a lack of attention given to primary health services, and undue financial burdens placed on people living in rural and remote areas associated with costly transportation to access functioning health services. We conclude that a person-centred and effective decentralised model of TB care as outlined in health policies is imperative for equitable access to essential health care services in Papua New Guinea.

The Importance of Changing the Model of Care in Residential Care Homes: A Person-Centered Approach

After pandemic, many professionals have realized that the current model of care in residences is far from the care that is intended to be provided to the elderly. The person-centered care model takes into account the person's preferences and interests, as well as promoting their autonomy in daily decisions. It is currently booming after numerous studies have shown exceptional results about the quality of care received by residents. Occupational Therapy is closely linked to this model from its bases, always keeping in mind the person and their occupation before starting the development of treatments. A change is necessary in all centers that care for the elderly, providing the highest quality of life and well-being.

Cuidado centrado na pessoa na atenção psicossocial: desafios para a relação terapêutica na perspectiva de profissionais

Abstract Objective to analyze the challenges for the therapeutic relationship from the perspective of person-centered care. Method strategic social research, with a qualitative approach, carried out with 17 professionals from two Psychosocial Care Centers (CAPS) in central Brazil. Data were collected through individual online interviews with a semi-structured script and notes in a field diary. They were organized with the help of the ATLAS.ti software, submitted to thematic analysis. Results four categories emerged on the challenges for the therapeutic relationship that addressed aspects related to health teams, users, family and work processes of the services studied. Conclusion and implications for practice challenges were identified that interfere with the establishment of the therapeutic relationship between CAPS professionals, users and their families that make it impossible to implement the person-centered care model. Fragile interpersonal relationships constitute obstacles to bond building, which demands continuing and permanent education processes to transform this reality.

Nutritional interventions in the framework of a person-centered model of health care and geroprotection

The existing system of prevention of age-related diseases that focused on cohort-based risk factors shows insufficient effectiveness; thus, practicable methodology of health promotion compliant with the principles of P4 medicine, with a special focus on nutritional interventions, is needed. The study outlines an algorithm of nutritional interventions designed in accordance with the principles of person-centered organizational model of healthcare. The algorithm is based on the modern concept of exposome and its influence on the key mechanisms of accelerated aging and pathogenesis of age-related diseases. The proposed approach to personalized nutritional interventions is implemented in three steps: (1) the need for nutritional intervention is identified through the evaluation of the signs and symptoms of health impairment and accelerated aging that have very probable association with suboptimal nutrition, (2) individual exposome factors are evaluated as potential sources of health problems, and (3) first-line nutritional interventions are selected and implemented. The algorithm focused on eliminating the shortcomings of the diagnosis-centered organizational model of healthcare prevailing worldwide: to enable early detection of distress, use of the most effective and affordable interventions (diet and nutrition), and maximum involvement of the patient in health management. The algorithm bears a good potential of automation through decision support for patients regarding health. The use of original questionnaires and patient-centered data reduces the cost and expands the possibilities of scaling the algorithms of intervention. The algorithm can become the basis for the wide introduction of the principles of predictive, personalized, and participatory prevention of age-related diseases.

Shared Decision Making in Psychiatry: Dissolving the Responsibility Problem

Person centered care (PCC) invites ideas of shared responsibility as a direct result of its shared decision making (SDM) process. The intersection of PCC and psychiatric contexts brings about what I refer to as the responsibility problem, which seemingly arises when SDM is applied in psychiatric settings due to (1) patients’ potentially diminished capacities for responsibility, (2) tension prompted by professional reasons for and against sharing responsibility with patients, as well as (3) the responsibility/blame dilemma. This paper aims to do away with the responsibility problem through arguing for a functional approach to mental illness, a blameless responsibility ascription to the person with mental illness, as well as a nuanced understanding of SDM as part of an emancipation-oriented PCC model.

The role of interior design in promoting a sense of home in people with dementia living in care facilities

With the introduction of the person-centred dementia care model, the interior design of care facilities has increasingly emphasised the need to make people with dementia (PWD) feel at home. The sense of home can improve the quality of life after relocating to long-term care facilities. However, the effectiveness of the current design approach is debatable because it ignores the intrinsic meaning of home. Therefore, the purpose of this study is to propose a new design approach to interior design that brings a sense of home to PWDs through the intrinsic meaning of home. It first defines the intrinsic meaning of home as an ‘intimate relationship’ between people and space, and then proposes a hypothesis that PWDs can re-establish this relationship through bodily habits. The ethnographic case studies verified it and explained how the interior environment influences it. Finally, based on the previous findings, this research develops the design framework and design guidelines.

Using Fa'afaletui to explore Samoan consumers' experience and interpretation of mental health person-centred care in Aotearoa, New Zealand.

This study applied a fa'afaletui cultural lens to an exploratory qualitative study examining Samoan families' experiences and engagement with a person-centred care model employed in specific mental health services in Aotearoa. Six semi-structured talanoa group discussions with families who had been previously or currently engaged with mental health services. In addition, a local stakeholder group was recruited to guide stages of the fa'afaletui. A total of 13 individual participants from six families participated. Participants consisted of four mothers, two fathers, five sisters, one son, and one husband. Five themes were identified: (i) Fa'atuatua ile Atua; Spiritual faith in God; (ii) It is a hush hush topic; stigma of mental illness; (iii) We are in the dark with our communication and dealings with the services; (v) Practice what you preach; clinical service delivery misaligned with the model of care; and (vi) Alofa (love) and fa'aaloalo (respect); enablers of positive experience. The findings overall highlight spirituality and religion as core to a Samoan's faith to foster resilience and healing when facing adverse mental health events with their family members. In addition, the need to build up capacity for Pacific staffed specialist services and Pacific model to achieve equity and holistic care for Samoans and other Pacific populations at risk of adverse mental health outcomes are recommended.

Evaluating the feasibility, effectiveness and costs of implementing person-centred follow-up care for childhood cancer survivors in four European countries: the PanCareFollowUp Care prospective cohort study protocol

IntroductionLong-term survival after childhood cancer often comes at the expense of late, adverse health conditions. However, survivorship care is frequently not available for adult survivors in Europe. The PanCareFollowUp Consortium...

Person-centered, high-quality care from a distance: A qualitative study of patient experiences of TelAbortion, a model for direct-to-patient medication abortion by mail in the United States.

Direct-to-patient telemedicine abortion allows people to receive mifepristone and misoprostol for medication abortion in their home without requiring an in-person visit with a healthcare provider. This method has high efficacy and safety, but less is known about the person-centered quality of care provided with telemedicine. We interviewed 45 participants from the TelAbortion study of direct-to-patient telemedicine abortion in the United States from January to July 2020. Semi-structured qualitative interviews queried their choices, barriers to care, expectations for care, actual abortion experience, and suggestions for improvement. We developed a codebook through an iterative, inductive process and performed content and thematic analyses. The experience of direct-to-patient telemedicine abortion met the person-centered domains of dignity, autonomy, privacy, communication, social support, supportive care, trust, and environment. Four themes relate to the person-centered framework for reproductive health equity: (1) Participants felt well-supported and safe with TelAbortion; (2) Participants had autonomy in their care which led to feelings of empowerment; (3) TelAbortion exceeded expectations; and (4) Challenges arose when interfacing with the healthcare system outside of TelAbortion. Participants perceived abortion stigma which often led them to avoid traditional care and experienced enacted stigma during encounters with non-study healthcare workers. TelAbortion is a high quality, person-centered care model that can empower patients seeking care in an increasingly challenging abortion context.

The interactive dimensions of encounters in HIV care: From trauma to relational traumatic growth.

A person-centred model of care, developed in the early days of the HIV epidemic when there were no effective treatments for HIV, led to relativelyclose relationships between carers and people living with HIV(PLWH). Our study examines the experiences of carers using a relational framework, exploring the traumas and challenges involved, coping practices instigated by carersand the emergence of 'relational traumatic growth' opportunities. Twenty-two UK healthcare workers and charity volunteers working with PLWH from the early years of the epidemic were recruited. Semistructured interviews were used to elicit participants' own stories of working with PLWH, from their initial involvement to the present time, and their reflections on the personal impact of working in the field of HIV. Data were analysed using a thematic approach employing relational categories. The impact of care was related to the formation of close relationships, identification with PLWH, high numbers of deathsand the difficulties and challenges encountered relationally. Participants described attempts to cope through informal and formal support, as well as endeavours to manage professional boundaries. Various ways of making sense of experiences were described, ranging from denial to abandoning the HIV field, to intense commitment. For some, traumatic experiences lead to validation, a search for personal meaningand managing the sense of loss with an exploration of further ventures, contributing to the achievement of relational traumatic growth. The intensity of relationships in HIV work, developed through the emotional and practical work of caring for PLWH, led healthcare workers and volunteers to experience a range of psychological consequences, both negative (including distress and emotional exhaustion) and also positive (such as acquiring a sense of purpose). People living with HIV and those working with them were involved in the initial study conceptualization and design. The second and fourth authors of this paper were professionals working in HIV throughout the pandemic and have led on all aspects of the study. People living with HIV and those working with them additionally guided participant selection by suggesting participants and supporting recruitment. Narrative transcripts were checked and amended (if necessary) by participants. Initial findings were presented at the AIDS impact conference, where PLWH and those working with them attended and feedback on important ideas that helped to prioritize and shape the study findings.

Systematic review of social prescribing and older adults: where to from here?

ObjectiveSocial prescribing is a person-centred model of care with emphases on lessening the impact of unmet social needs, supporting the delivery of personalised care, and reducing non-medical resource use in...

Palliative care phenotypes among critically ill patients and family members: intensive care unit prospective cohort study

ObjectiveBecause the heterogeneity of patients in intensive care units (ICUs) and family members represents a challenge to palliative care delivery, we aimed to determine if distinct phenotypes of palliative care...

Operationalisation of person-centred care in a real-world setting: a case study with six embedded units

BackgroundAlthough person-centred care (PCC) is growing globally in popularity it is often vague and lacks conceptual clarity and definition. The ambiguity stretches from PCC’s underlying philosophical principles and definitions of the concept to how it is operationalised and practised on the ground by health care professionals. We explore how the PCC model by the Gothenburg University Centre for Person-centred Care (GPCC) was operationalised in a real-world setting by using a set of recommendations by Fixsen and others that define and structure the core components of innovations in four distinct but interrelated components: philosophical principles and values, contextual factors, structural elements and core practices. Thus, this study aimed to increase knowledge about core practices in PCC in six health care units in real-world circumstances.MethodsA case study with six embedded health care units was conducted from 2016 to 2019. We collected data from three sources: interviews (n = 12) with change agents, activity logs and written documents. Data were triangulated, and core practices were identified and deductively coded to the PCC model’s structural elements: initiating, working and safeguarding the partnership with patients.ResultsWe identified operationalisations of PCC in line with the three structural elements in the GPCC model at all included health care units. A range of both similarities and dissimilarities between units were identified, including the level of detail in describing PCC practices, when these practices were conducted and by whom at the workplace. The recommendations for describing the core components of PCC also helped us identify how some operationalisations of PCC seemed more driven by contextual factors, including a new regulation for planning and documenting care across health care specialities.ConclusionsOur findings show how PCC is operationalised in different health care units in a real-world setting based on change agents’ understanding of the concept and their unique context. Increased knowledge of PCC and its philosophical principles and values, contextual factors, structural elements and core practices, is necessary to build a common understanding of the PCC-concept. Such knowledge is essential when PCC is operationalised as part of implementation efforts in health care.