This book presents an engaged learning curriculum for higher education that helps emerging adults and professionals-in-training develop psychological resilience and community-building interpersonal skills. The curriculum mentors a person-centered process of psychospiritual maturation through growth in five dimensions of self: bio-behavioral, cognitive-sociocultural, social-emotional, existential-spiritual, and resilient worldview formation. This growth promotes student well-being and a positive campus culture, while preparing them to build cultures of health, social justice, and peace in the social systems where they will work and live.

Practical and evidence-based, this unique book is the first comprehensive text focused on person-centered approaches to people with serious mental illness such as schizophrenia and bipolar disorder. It reflects a range of views and findings regarding assessment, treatment, rehabilitation, self-help, policy-making, education and research. It is highly recommended for all healthcare professionals, students, researchers and educators involved in general practice, psychiatry, nursing, social work, clinical psychology and therapy. Healthcare service providers, and policy makers and shapers, will find the (...) book's wide-ranging, multi-professional approach enlightening. 'Serious Mental Illness reflects a continued distancing from the outmoded and unsubstantiated belief that people with severe mental illnesses could not recover, and that they would respond positively only to goals and treatment plans chosen, designed and implemented by providers in order to prevent their further deterioration. Anyone with an interest in the concept of person-centered approaches will discover new ideas in this book. Indeed, anyone with an interest in person-centered approaches has to read this book. Not only is it the first such book on person-centered approaches, but it will serve as the gold standard in this topic area for years to come.' William A Anthony, in the Foreword. (shrink)

Rationale: Patients with advanced dementia experience multifaceted vulnerabilities because of their diminished capacities for decision making. The dominant versions of person-centred care (PCC) emphasise patient preferences and autonomy, which often undermines a recognition of their distinct unfulfilled needs. Determining whether an individual autonomy conception of personhood applies to patients with advanced dementia is morally problematic from various theoretical perspectives and leads to the one-approach-fits-all problem when caring for this patient population. -/- Aims and Objectives: The availability of patients' (...) advanced directives varies depending on their cultural backgrounds. The goal of the study is to argue that PCC, with a focus on relational autonomy, should be the first step for caring for patients with advanced dementia. -/- Method: The study engages in a critical exploration of inclusivity and diversity in ethical thinking within a framework of PCC and uses philosophical argumentation to assess the viability of a relational autonomy conception of PCC. -/- Results and Conclusion: By taking relationality seriously, especially in caring for patients with advanced dementia in a multicultural society, and by considering the moral nexus of unmet needs through the perspective of PCC, we can resolve the problem of one-approach-fits-all in dementia care. (shrink)

Mixture modeling technics are not the one and only to perform person-centered analyses, but they do offer the possibility of integrating latent profiles into models of some complexity that include antecedents and results. When analyzing the contribution of socioemotional resources to the preservation of mental health, it is the variable-centered approaches that are the most often performed, with few examples using a person-centered approach. Moreover, if the focus is on the Arab adolescent population, to (...) our knowledge, there is an absence of such studies. This study aims to extend the research about socioemotional resources by examining: if distinguishable profiles can be identified based on scores about perceptions of different emotional abilities and levels of social support from different sources ; if the identified profiles relate to mental health indicators, such as depression levels and health-related quality of life ; and to acknowledge if sociodemographic variables such as age or gender and positive self-views ascertain the probability of pertaining to the identified profiles. The study was carried out on a large sample of Moroccan adolescents. We adopted a person-centered approach using latent profile analysis to establish whether different socioemotional resources profiles are present in Moroccan adolescents. Furthermore, we investigated the role of sociodemographic variables and self-esteem as antecedents of these profiles and the association of these profiles with mental health. Results from LPA revealed three patterns of socioemotional resources : “High socioemotional resources” ; “Moderate socioemotional resources” ; and “Low socioemotional resources”. Analyses showed that Moroccan adolescents differed significantly in depression and HRQoL depending on the profile membership. Profiles with higher levels of resources contributed positively to preserving mental health. Finally, the results show that self-esteem boosted the probability of pertaining to the profiles related to better mental health. Thus, this study extends previous research about socioemotional resources, highlighting that researchers and health professionals should consider empirically identified profiles of adolescents when explaining mental health outcomes. Therefore, the psychological intervention should be focused on enhancing the self-esteem of adolescents, to favor a high socioemotional resource profile, which results in better mental health. (shrink)

In the past, deception detection research has explored whether there were specific personal characteristics that were related to lying and found that factors such as personality and morality are indeed related to lying. However, past research has usually focused on a variable-centered approach. Yet, a person-centered might be more suitable here as it allows for the study of people in an integrative manner. In this experiment, 673 students completed a questionnaire which included measures of the five (...) factors of personality, the level of moral disengagement, the perceived cognitive load when lying, lying strategies, frequency of lying and the LiES scale, a tool measuring the tendency to tell self-serving, altruistic and vindicative lies. We performed a Latent Profile Analysis to integrate personality, moral disengagement, and perceived cognitive load scores into specific profiles. Then, we related profile membership to lying behavior. We obtained four profiles, and found that extraversion, moral disengagement, and the perceived cognitive load contributed most to profile differences. We also found that lying frequency did not differ across profiles, whereas lying tendency did. In conclusion, our results suggest that several facets of the individual play a joint role in lying behavior, and that adopting a person-centered approach might be a good strategy to explore the role of interpersonal differences in lie detection research. (shrink)

Nursing policy and healthcare reform are focusing on two, interconnected areas: person‐centred care and fundamental care. Each initiative emphasises a positive nurse–patient relationship. For these initiatives to work, nurses require guidance for how they can best develop and maintain relationships with their patients in practice. Although empirical evidence on the nurse–patient relationship is increasing, findings derived from this research are not readily or easily transferable to the complexities and diversities of nursing practice. This study describes a novel methodological (...) class='Hi'>approach, called holistic interpretive synthesis (HIS), for interpreting empirical research findings to create practice‐relevant recommendations for nurses. Using HIS, umbrella review findings on the nurse–patient relationship are interpreted through the lens of the Fundamentals of Care Framework. The recommendations for the nurse–patient relationship created through this approach can be used by nurses to establish, maintain and evaluate therapeutic relationships with patients to deliver person‐centred fundamental care. Future research should evaluate the validity and impact of these recommendations and test the feasibility of using HIS for other areas of nursing practice and further refine the approach. (shrink)

A virtue centred approach to ethics has been criticized for being vague owing to the nature of its central concept, the paradigm person. From the perspective of the practitioner the most damaging charge is that virtue ethics fails to be action guiding and, in addition to this, it does not offer any means of act appraisal. These criticisms leave virtue ethics in a weak position vis-à-vis traditional approaches to ethics. The criticism is, however, challenged by Hursthouse in her (...) analysis of the accounts of right action offered by deontology, utilitarianism and virtue ethics. It is possible to defend the action guiding nature of virtue ethics: there are virtue rules and exemplars to guide action. Insights from Aristotle’s practical approach to ethics are considered alongside Hursthouse’s analysis and it is suggested that virtue ethics is also capable of facilitating action appraisal. It is at the same time acknowledged that approaches to virtue ethics vary widely and that the challenges offered here would be rejected by those who embrace a radical replacement virtue approach. (shrink)

Guided by Basic Psychological Need Theory, we investigated the combined associations between need satisfaction and need frustration and their relations with theoretically relevant correlates including mindfulness, physical literacy, physical activity enjoyment, and physical activity. The participants were Singapore-based school students who completed a cross-sectional survey. The results of the latent profile analysis identified four distinct need profiles: profile 1–average satisfaction and frustration ; profile 2–low satisfaction, above average frustration; profile 3–very high satisfaction, very low frustration ; and profile 4–high satisfaction, (...) very high frustration. Among these, profile 3 was the most adaptive one; it had the highest levels of mindfulness, physical literacy, physical activity enjoyment, and moderate-to-vigorous physical activity. Experiences of need satisfaction countered the negative effects of need frustration on these correlates. These findings enhance our understanding of students’ psychological need experiences and highlight the need for investigating the combined associations between need satisfaction and need frustration. (shrink)

In daily academic life, students are exposed to a wide range of potentially stressful situations which could negatively affect their academic achievement and their health. Among the factors that could be weakened by academic stress, attention has been paid to expectations of self-efficacy, which are considered one of the most important determinants for student engagement, persistence, and academic success. From a proactive perspective, research on academic stress has emphasized the importance of coping strategies in preventing harmful consequences. In recent years, (...) there has been a growing interest in discovering the extent to which individuals are able to combine different coping strategies and the adaptive consequences this flexibility entails. However, studies using this person-centered approach are still scarce in the academic context. On that basis, this current study had two objectives: (a) to examine the existence of different profiles of university students based on how they combined different approach coping strategies (positive reappraisal, support seeking, and planning); and (b) to determine the existence of differences in general expectations of self-efficacy between those coping profiles. 1072 university students participated in the study. The coping profiles were determined by Latent Profile Analysis (LPA). The differences in the self-efficacy variable were determined using ANCOVA, with gender, university year, and degree type as covariates. Four approach coping profiles were identified: (a) low generalized use of approach coping strategies; (b) predominance of social approach coping approaches; (c) predominance of cognitive approach coping approaches; (d) high generalized use of approach coping strategies. The profile that showed that a greater combination of the three strategies was related to higher general self-efficacy expectations, and vice versa. These results suggest that encouraging flexibility in coping strategies would help to improve university students’ self-efficacy. (shrink)

Person-centered Politics, in dialogue with some of major contemporary philosophers and thinkers, proposes a renewed vision of politics by presenting a renewal of the real social and transcendent dimensions of personal existence.

Health services internationally struggle to ensure health care is “person-centered” (or similar). In part, this is because there are many interpretations of “person-centered care” (and near synonyms), some of which seem unrealistic for some patients or situations and obscure the intrinsic value of patients’ experiences of health care delivery. The general concern behind calls for person-centered care is an ethical one: Patients should be “treated as persons.” We made novel use of insights from the (...) capabilities approach to characterize person-centered care as care that recognizes and cultivates the capabilities associated with the concept of persons. This characterization unifies key features from previous characterisations and can render person-centered care applicable to diverse patients and situations. By tying person-centered care to intrinsically valuable capability outcomes, it incorporates a requirement for responsiveness to individuals and explains why person-centered care is required independently of any contribution it may make to health gain. (shrink)

UK maternity policy makes great fanfare about providing person-centered care, built around what the pregnant woman or birthing person needs. Maternity Voices Partnerships involving healthcare professionals and women are supposed to guide policy and practice at the local level. UK consent law prioritizes the pregnant person's own conception of the risks and factors that are material to her care. The COVID-19 pandemic has shown how tenuous a hold these laudable principles actually have when the going gets (...) tough. (shrink)

Entwhistle and Watt (2013) make an important contribution to the person-centred view of health care by reframing past thinking on the subject in terms of the capability approach. Past thinking about person-centred care employs a range of normative values that are arguably supportive of the concept of a person. But ironically these values are not clearly grounded in any account of what the person is. Thus, it is not clear what anchors these values and so (...) how they are to be interpreted. (shrink)

In 1991 Mark Nelson argued that if time is infinitely long towards the future, then under certain easily met conditions traditional utilitarianism is unable to discriminate among actions. For under these conditions, each action produces the same infinite amount of utility, and thus it seems that utilitarianism must judge all actions permissible, judge all actions impermissible, or remain completely silent. In response to this criticism of utilitarianism, I argued that utilitarianism had the resources for dealing with at least some cases (...) of infinite utility. More specifically, I defended the following principle as being part of the "spirit" of traditional (total) utilitarianism: -/- PMU*: An action a1 has better consequences than an action a2 if and only if there is a time t such that for any later time t' the cumulative amount of utility produced by a1 up to t' is greater than that produced by action a2 up to t'. -/- For the usual finite cases, this principle agrees exactly with the standard approach of comparing totals. For infinite cases, however, it can distinguish among two actions each of which produces an infinite amount of utility. It says, for example, that an action that produces 2 units of utility at each time has better consequences than an action that produces 1 unit of utility at each time -- even though they both produce the same infinite amount of utility. Of course, cases where one action produces more utility than a second at each time are going to be rather rare. PMU* is not limited to such cases, however; it also has bite in cases such as the following: -/- Time a1: 1, 1, 1, 1, 2, 2, 2, 2, 2, ... a2: 3, 3, 3, 3, 1, 1, 1, 1, 1, ... -/- For although the cumulative utility of a1 up to and including the fourth time is only 4 utiles and a2's is 12, a1 starts catching up after that, ties a2 in the 12th time, and stays ahead after that. Thus, PMU* judges a1 as having better consequences than a2. I claimed that PMU* better captured the "spirit" of traditional utilitarianism than the usual sum total view -- on the grounds that almost anyone inclined to defend traditional utilitarianism would, upon reflection, want to hold, for example, that 2 utiles at every time is indeed better than 1 utile at each time. Two responses to my view have since been given in this journal. Luc Van Liederkerke has argued that PMU* violates an anonymity (neutrality, impartiality) condition that is central to utilitarianism. And James Cain has argued that PMU* is not person-centered, and that being so is central to utilitarianism. Here I will reply to the criticisms. Basically, I will acknowledge that each is right about an important point, but deny that this establishes that the core idea underlying PMU* is less plausible than the standard sum-ranking versions of utilitarianism. (shrink)

This paper offers an overview of Grace Lee Boggs's community-based and person-centered philosophy and pedagogy, highlighting how education can foster social responsibility and create democratic habits in students, better equipping them to create radical change within their communities. The essay demonstrates Boggs's commitment to philosophical-activist pedagogy and its alignment with a feminist-pragmatist approach, which emphasizes lived experience, pluralism, complexity, and equality, as well as praxis. The essay then considers how Boggs's philosophical activism can be enacted inside and (...) outside the traditional classroom, concluding by describing an educational and activist project called Narrative 4. (shrink)

Background Mental health nurses advocate for patients through a person-centered approach because they care for people experiencing mental distress who tend to be limited to exercising their human rights and autonomy through interpersonal relationships. Therefore, it is necessary to provide high-quality person-centered care for these patients by identifying the influencing factors. Aim This study aims to identify the factors affecting mental health nurses in performing person-centered care for patients. Research design This study had (...) a cross-sectional, descriptive-correlational survey design. Participants and method Nurses ( N = 166) working at psychiatric wards in Korea completed an online questionnaire on moral sensitivity, attitudes toward people with mental illness, and person-centered care. The t-test and stepwise multiple regression analysis were used. Ethical considerations Ethical approval for the study was obtained from the relevant ethics committee. Findings Moral sensitivity was a significant factor correlating with the provision and perception of person-centered care. Attitudes toward patients had no effect on person-centered care. The predictor variables for the provision of person-centered care (R2 = 0.247) were moral sensitivity (β = 0.33), having a professional qualification (β = 0.19), marital status (β = 0.18), and closed ward (β = −0.15). The predictor variables for the perception of person-centered (R2 = 0.150) care were closed ward (β = −0.25), moral sensitivity (β = 0.23), and marital status (β = 0.18). Discussion and conclusion Mental health nurses can strengthen person-centered care by improving moral sensitivity related to the ethical aspect of nursing and professional competence to address the complex needs of patients. Person-centered care needs to be applied more carefully in closed wards where human rights issues may arise. Through these efforts, the dignity of patients can be protected. (shrink)

There are a host of data privacy decisions we must make every day – and it is exceedingly difficult, if not impossible, for us to make meaningful decisions about all of them. In this thesis, I define, conceptualize, interrogate, and design for value-centered privacy decision making – that is, decisions that are focused on who we are and what we value – as a means of respecting and promoting user autonomy. To achieve this, this work utilizes philosophical theory to (...) understand value-centered privacy decisions and translates this theory into a system that promotes such decisions. In summary, this work has two major contributions. Firstly, I conceptualize and define value-centered privacy decision-making using a value-centered theory of autonomy. I explore how we can create the space for value-centered privacy decisions by applying the Four-Dimensional Theory of Self Governance (4DT). I first conceptualize privacy decisions in terms of these four dimensions – self-definition, self-realization, self-unification, and self-constitution – and explore existing data privacy challenges through this lens. In particular, I conceptualize notice fatigue in terms self-realization, self-unification, and self-constitution; a lack of relevant privacy controls in terms of self-realization and self-unification; and nudges in terms of self-realization and self-unification. I then present and discuss results from a mixed-methods investigation into how values are involved in privacy decisions – in particular, app choice. We found that they were related in a highly individualized, context specific manner, observing different values that were more relevant based on the app in question. This suggests that the value-privacy relationship is largely informed by individual preferences and understandings of values. However, the values of Use, Control, and Community were quite prevalent, with Use and Control in particular spanning contexts and individual participants. They were also frequently perceived as in conflict with each other. This suggests that these three values are the most relevant to consider when designing for value-centered privacy decisions. The participants’ experiences can also be explained using 4DT, providing empirical support for our conceptualization of value centered privacy. However, the study results also provide insights into how existing systems – such as surveillance capitalism and the attention economy – frustrate value centered privacy decisions. Secondly, I use the 4DT-based understanding of value-centered privacy decisions to establish the usability and effectiveness of the value-centered approach, designing a privacy assistant to help users make app choices that are in more accordance with their personal values. To inform the design of a smartphone assistant that creates this space for users, I examine an existing technology – personalized privacy assistants (PPAs) – using the 4DT lens. Using insights from this examination, I propose a value-centered, smartphone privacy assistant (VcPA) to help users make more value-centered decisions at one privacy decision point: smartphone app choices. This VcPA consists of three features: selective notices, exploratory notices, and a “suggest alternative apps” feature. I then present the results from testing a prototype VcPA system with users, serving as a proof-of concept that a value-centered privacy assistant, designed using privacy preferences and values, could help users when making privacy decisions such as choosing apps. In particular, we found that the VcPA prototype helped users download value-consistent apps, with the “suggest alternatives” feature especially well-received. We also identified places where the VcPA could be improved – for example, profiles could be improved by being made more customizable; VcPA notices could be made easier to understand; and the “suggest alternatives” feature could be more streamlined. This thesis lays the groundwork for future researchers to design systems that promote value-centered privacy decisions. To guide this future work, I lastly present prospective research avenues to advance the value-centered approach to data privacy decision-making. In particular, I discuss limitations of the studies in this work, including engagement with a wider range of demographic groups; touch upon how the identified VcPA improvements, such as improved VcPA profiles, might be accomplished; briefly explore the possibility of applying the value-centered understanding to other privacy contexts; and consider how both system-wide regulation and individual autonomy enhancing interventions, such as the VcPA, can empower us to shape a technological future based on our values. (shrink)

There is a critical need to establish a space to engage in careful deliberation amid exciting, important, necessary, and groundbreaking technological and clinical advances in pediatric medicine. Extracorporeal membrane oxygenation (ECMO) is one such technology that began in pediatric settings nearly 50 years ago. And while not void of medical and ethical examination, both the symbolic progression of medicine that ECMO embodies and its multidimensional challenges to patient care require more than an intellectual exercise. What we illustrate, then, is a (...) person-centered framework that incorporates the philosophy and practice of palliative care and care-based ethical approaches. This person-centered framework is valuable for identifying and understanding challenges central to ECMO, guides collaborative decision-making, and recognizes the value of relationships within and between patients, families, healthcare teams, and others who impact and are impacted by ECMO. Specifically, this person-centered approach enables caregivers to provide compassionate and effective support in critical, and often urgent, situations where conflicts may emerge among healthcare team members, families, and other decision makers. By reflecting on three cases based on actual situations, we apply our person-centered framework and identify those aspects that were utilized in and informed this project. We aim to fill a current gap in the pediatric ECMO literature by presenting a person-centered framework that promotes caregiving relationships among hospitalized critically ill children, families, and the healthcare team and is supported through the philosophy and practice of palliative care and clinical ethics. (shrink)

The aim of this study was to explore patients’ experiences of using the Integrated Palliative care Outcome Scale (IPOS) during specialized palliative home care. The study adopted a qualitative approach with an interpretive descriptive design. Interviews were performed with 10 patients, of whom a majority were diagnosed with incurable cancer. Our findings suggest that the use of IPOS as a basis for conversation promotes safe care by making the patients feel confident that the care provided was adapted to them (...) which gives them a sense of safety. IPOS facilitated discussions between patients and nurses about care needs. The patients believed that using IPOS enabled reflection on their well‐being and life situation. In conclusion, the study finds that using IPOS is beneficial and provide ways to enable person‐centered care and with advantage could be used in specialized palliative home care. The results may help overcome barriers and facilitate the use of patient‐reported outcome measures (PROMs). To enable the use of PROMs such as IPOS in palliative home care, nurses need education and opportunities to develop routines that enable patients’ voice to be heard and thereby compose a basis for care. (shrink)

The goal of this study was to investigate heterogeneity in clinical symptoms and cognitive functioning among children with hyperactivity-impulsivity and inattention using a novel approach that combined dimensional and person-centered perspectives. Executive, verbal and visuo-spatial functioning, hyperactivity-impulsivity, inattention, externalizing and internalizing symptoms were examined in 102 children at risk for ADHD and 62 children not at risk for ADHD in the age range of 8–10 years. We extracted seven groups with various profiles of psychopathological symptoms and cognitive (...) functioning. We propose that symptoms of inattention and hyperactivity-impulsivity in these groups are related to different cognitive and affective-motivational problems. (shrink)

This article argues that standard models of person-centred care (PCC) and shared decision making (SDM) rely on simplistic, often unrealistic assumptions of patient capacities that entail that PCC/SDM might have detrimental effects in many applications. We suggest a complementary PCC/SDM approach to ensure that patients are able to execute rational decisions taken jointly with care professionals when performing self-care. Illustrated by concrete examples from a study of adolescent diabetes care, we suggest a combination of moral and psychological considerations (...) to support the claim that standard PCC/SDM threatens to systematically undermine its own goals. This threat is due to a tension between the ethical requirements of SDM in ideal circumstances and more long-term needs actualized by the context of self-care handled by patients with limited capacities for taking responsibility and adhere to their own rational decisions. To improve this situation, we suggest a counseling, self-care, adherence approach to PCC/SDM, where more attention is given to how treatment goals are internalized by patients, how patients perceive choice situations, and what emotional feedback patients are given. This focus may involve less of a concentration on autonomous and rational clinical decision making otherwise stressed in standard PCC/SDM advocacy. (shrink)

On Becoming an Effective Teacher presents the final unpublished writings of Rogers and as such has a unique historical value. It also documents the research results of four highly relevant, related but independent studies which comprise the biggest collection of data ever accumulated to test a person-centred theory in the field of education. This body of comprehensive research on effective teaching was accomplished over a twenty-year period in 42 States in the U.S. and in six other countries including the (...) UK, Germany, Brazil, Canada, Israel, and Mexico, and is highly relevant to the concerns of teachers, psychologists, students, and parents. The principal findings of the research in this book show that teachers and schools can significantly improve their effectiveness through programs focusing on facilitative interpersonal relationships. Teachers who either naturally have, or are trained to have empathy, genuineness (congruence), and who prize their students (positive regard) create an important level of trust in the classroom and exert significant positive effects on student outcomes including achievement scores, interpersonal functioning, self-concept, and attendance. The dialogues between Rogers and Lyon offer a unique and timeless perspective on teaching, counselling and learning. The work of Reinhard Tausch on person-centered teaching to counselors, parents, athletics, and even textbook materials, as well as research on the interactions of teachers and students, is among the most thorough and rigorous research ever accomplished on the significance and potential of a person-centered approach to teaching and learning. (shrink)

This article offers commentary on a work in the same journal issue. I argue that the authors, Entwistle and Watt, approach person-centered care in health care with a questionable focus on the understanding of concepts as the primary causal mechanism and bracket-out considerations of the structural conditions of medical practice. I argue that the challenges in implementing person-centered care have not been from a difficulty articulating and/or understanding such goals, but from failing to address existing (...) systemic pressures that are preventing health care and health care professionals from addressing patients as persons in the fullest sense. Any examination of person-centered care and its challenges should consider the co-determining nature of the material and the conceptual/ethical. (shrink)

In response to cancer, patients may be thrown into precarious processes of remaking their purpose, identity, and connections to the world around them. Thoughtful and thorough responses to these issues can be supported by person-centered phenomenological approaches to caring for patients. The importance of perspectives on illness offered by theoretical phenomenology will become apparent through the example of the experience of nausea, or perhaps more accurately put—chemo sickness. The focus here is on how chemo sickness alters one's way (...) of relating to the world. I will examine the phenomenon of nausea through the lens of the phenomenological concept of mood—an existential feeling that engenders a diffused tone permeating through one's world and shapes the envisioned possibilities on one's horizon. (shrink)

Advocates of the Person-Centered Healthcare (PCH) approach say that PCH is a response to a failure of caring for patients as persons. Nevertheless, there are many human subjects falling to fulfill the requirements of a traditional philosophical definition of personhood. Hence, if we take, PCH seriously, a greater clarification of the key terminology of PCH is urgently needed. It seems necessary, for instance, that the concept of the person should be extended in order to include those (...) individuals with insipient or immature levels of consciousness, as well as those who are severely and permanently mentally handicapped. In this article, we will depart from some well-known philosophical concepts of what it means to be a person and try to offer a broader and more inclusive meaning. We suggest that persons are human beings with a socially recognized biography, which implies to recognize as persons individuals with necessities, but also with narratives about their interests and claims, expressed sometimes by other people related to them. This is particularly the case of individuals that suffer from severe disorders of consciousness. For those, is not only care that matters; respect matters too. Caregivers should therefore not only sympathetically care for the well-being of these people; they should also be concerned to respect their interests and claims by interpreting them empathetically, in the light of their biographical story. Our conclusion is that, in order to be coherent, PCH must consider individuals with severe disorders of consciousness as persons and we think that our revised concept of personhood fits with this requirement. (shrink)

Background: Person-centred care is often described as an ideal way of preserving vulnerable persons’ wellbeing and dignity and an essential component of quality-care delivery. However, the staff find that making the care dignified is the most challenging issue, often because of effectivity, everyday stress and overload. In the interests of making the care more person-centred, systematic intervention involving ‘one-to-one contact’ (resident – carer) was trialled for 30 min twice a week over 12 months in two units in a (...) nursing home in Eastern Norway. Objectives: The aim of the study was to elicit healthcare staff’s experiences of implementing ‘one-to-one contact’ between residents and carers in nursing homes. Methods: The study has a grounded-theory inspired design. Two groups of health care staff were each interviewed three times. Data were collected over an 18-month period. Ethical considerations: The study was approved by the Data Protection Official for Research under the auspices of the Norwegian Social Science Data Services. Findings: The core category is ‘One-to-one contact’ at a nursing home is possible, but requires open-mindedness. The core category indicates that open-mindedness is required, since it does not take much for scepticism to take over and cause reversion to habitual practices. The category Expectant but Sceptical describes staff thoughts and experiences before the implementation phase got underway. The category Positive but Undecided describes staff experiences 6 months into the intervention and after 12 months. Conclusions: This study has revealed that systematic ‘one-to-one contact’ between resident and carer in nursing home is achievable, and that such a simple action might be an important step towards achieving more person-centred care as the resident is seen more as a person. However, in order to make a more person-centred and dignified approach to care constant attentiveness and awareness is required, as there were ongoing factors counteracting it. (shrink)

The concept of person‐centeredness has become in many instances the standard of health care that humanises services and ensures that the patient/client is at the centre of care delivery. Rejecting a purely biomedical explanation of dementia that led to a loss of self, personhood in dementia could be maintained through social interaction and communication. In this article, we use the insights of queer theory to contribute to our current understanding of the care of those with dementia. We critically discuss (...) the concepts of person and personhood that have become the cornerstone values of person‐centred care for persons with dementia (PWD). Some critics, using queer theory as a theoretical approach, contend that person‐centred care often (unwittingly) reproduces heteronormative roles in trying to sustain life histories. In doing so, they argue, regendering of PWD is sometimes enforced by care providers who try to safeguard this biographical continuity. Cultural theorist Linn Sandberg also mentions that other axes of domination such as race and class are not conceptualised in person‐centeredness approaches, and neither are power asymmetries. Thus, in our article, we revisit the concept of person‐centred care as a first step in proposing another way to think about ‘beings with dementia’ (to avoid the term person). Believing that queer theorists have fallen short in questioning the idea of person or personhood as such, we will build on and broaden Sandberg's critique by demonstrating that queer and crip theory can be understood as a fundamental critique of the (Western) subject and processes of subjectivation. We argue that dementia can be conceptualised as a radical break not only with gendered roles and embodiments, but with many of the norms that make us recognisable subjects. Conceptualising dementia in this way turns it into what Sandberg called an ‘emancipatory space’ and not merely a pathology. (shrink)

Dementia has rapidly become a major global health crisis. As the aging population continues to increase, the burden increases commensurately on both individual and societal levels. The behavioral and psychological symptoms of dementia are a prominent clinical feature of Alzheimer’s disease and related dementias. BPSD represent a myriad of manifestations that can create significant challenges for persons living with dementia and their care providers. As such, BPSD can result in detriments to social interaction with others, resulting in harm to the (...) psychosocial health of the person with dementia. While brain deterioration can contribute to BPSD as the disease progresses, it may be confounded by language and communication difficulties associated with ADRD. Indeed, when a person with dementia cannot effectively communicate their needs, including basic needs such as hunger or toileting, nor symptoms of pain or discomfort, it may manifest as BPSD. In this way, a person with dementia may be attempting to communicate with what little resources are available to them in the form of emotional expression. Failing to recognize unmet needs compromises care and can reduce quality of life. Moreover, failing to fulfill said needs can also deteriorate communication and social bonds with loved ones and caregivers. The aim of this review is to bring the differential of unmet needs to the forefront of BPSD interpretation for both formal and informal caregivers. The overarching goal is to provide evidence to reframe the approach with which caregivers view the manifestations of BPSD to ensure quality of care for persons with dementia. Understanding that BPSD may, in fact, be attempts to communicate unmet needs in persons with dementia may facilitate clinical care decisions, promote quality of life, reduce stigma, and foster positive communications. (shrink)

People with disabilities face inequalities in mental wellbeing, for which social exclusion is a contributing factor. Musical activities offer a promising but complex intervention, making impacts on a population with highly varied characteristics and needs challenging to capture. This paper reports on a mixed methods, person-centered study investigating a community music intervention for such a population. Three groups of adult service users with varied disabilities (either physical, learning, or both), took part in weekly music workshops in different locations. (...) Music staff, housing and resource center staff, as well as participants and members of their families, took part in semi-structured interviews. A quantitative measure administered by service staff was used to rate service users’ social development. Two lay researchers, both individuals with a disability contributed to all aspects of the study. Interviews were analyzed through thematic analysis. Improvements in individuals’ self-expression, confidence, mood, and social skills were consistent with previous findings. Differences in effect between centers included: Group 1, some of whom had previous experience of workshops, showed an improvement in musical skills; Group 2 showed a mixed response, some participated with enthusiasm but others chose art activities over music workshops; Group 3 had lasting positive impact, this group had very limited opportunities for music due to their rural location. Quantitative analysis showed significant increase over all groups in communication, interaction with others, and joint attention. The intervention was beneficial for participants in separate locations in similar ways, but also highlighted that context and prior experience mediated effects in distinct ways. The lay researchers enhanced the qualitative analysis by emphasizing (1) the importance of recognizing participants’ self-expression in non-verbal modes of communication and (2) the importance of having music staff with a disability to provide a positive role model. This paper proposes that mixed methods person-centered research is the most suitable approach to capture and understand the multiple and varied effects of this complex intervention for a diverse group of participants. (shrink)

The aim of this article is to elaborate on how a distinct concept of the person can be implemented within person‐centred care as an ethical configuration of personhood in the tension between the two predominant cultures of knowledge within health care: naturalism and phenomenology. Starting from Paul Ricoeur's ‘personalism of the first, second, and third person’ and his ‘broken’ ontology, open‐ended, incomplete, and imperfect mediations, placed at the precise juncture where reality is divided up into two separate (...) cultures of knowledge, is identified as crucial for what makes us human. Within this context, Ricoeur's distinct ethical configuration of personhood is based on the homology between the linguistic, practical, narrative, and moral determinations of selfhood—articulated as a hermeneutics of the self, without any methodological break. Person‐centred care is thus recognized as an profound ethical approach to health care based on mediations of ‘horizontal’ (teleological) and ‘vertical’ (deontological) readings of an ethical configuration of personhood by the use of practical wisdom. (shrink)

Nurses’ need to document activities is urgent. The panorama of available terminologies is heterogeneous. It seems necessary to understand the premises of available tools and their limits and benefits to make conscious choices and shape future development. Taxonomies (e.g., North American Nursing Diagnosis Association) and ‘pure terminologies’ (e.g., International Classification for Nursing Practice), or nursing languages, are available tools to document nurses’ activities and to produce theoretical models or reference systems. These tools respond first to a practical problem: ‘translating’ nursing (...) facts into linguistic descriptions. Taxonomies make reality describable through exhaustive definitions designed inductively. Thus, I argue that their philosophical basis is naïve semantics. Their framework is a closed hierarchy, that is, a system that provides defined levels of concepts, structured through dichotomous rules. This causes the problem of determining boundaries between concepts, and thus between phenomena, which I call the problem of ‘closing the concept enclosure’. Rigid metaphysical structures are unable to cope with the complexity of phenomena that nurses deal with, so they seem to be unable to describe them. I follow Wittgenstein's argument, from Philosophical Investigations, which is useful to understand this challenge: the definition of terms is not a problem of lack of suitable words or an agreed decision, but is achieved by training in practice. Pure terminologies give us another way to address the question. They are usually composed of a glossary of terms, paired with rules to combine them to manage meaning. They are more like natural language and this implies adapting more to phenomena. Then, I argue that their philosophical background is a pragmatic approach to language, and I discuss some consequences and objections. Finally, I find that the development of pure terminologies rather than taxonomies in documenting nursing activities allows us to achieve key objectives, such as improving nursing visibility and measurability in health records, without jeopardising person‐centred care. (shrink)

Since the 1970’s epidemiological measures focusing on “health-related quality of life” or simply “quality of life” have figured increasingly as endpoints in clinical trials. Before the 1970’s these measures were known, generically, as performance measures or health status measures. Relabeled as “quality of life measures” they were first used in cancer trials. In the early 2000’s they were relabeled again as “patient-reported outcome measures” or PROMs, in their service to the FDA to support drug labeling claims. To the limited degree (...) that the philosophical literature addresses these measures, it tends to associate them with two major theories of well-being: subjective well-being and the capabilities approach. In this paper, I argue that philosophers ought to treat quality of life measures/proms as a distinct from these theories. I argue that quality of life/proms serve healthcare as vehicles for patient-centered care and this has important consequences for how we theorize these measures. To this end, two requirements set them apart from measures of subjective well-being and the capabilities approach: quality of life/proms need to be patient-directed and inclusive. (shrink)

The use of psychosocial interventions for people with dementia is common and recommended because they focus on the underlying problem and well-being of the person. The promotion of well-being is a relevant dimension in person-centred care, where the aim is to confirm the person’s ‘personhood’. Most literature about ethics in dementia care instructs us on how and when to include people with dementia in our research. Little is written about the ethical aspects regarding the use of psychosocial (...) interventions in daily care. In clinical practise, several challenges arise about the use of psychosocial interventions. Those include questions about the person’s ability to participate in decision-making and how we know what is best for them. Furthermore, we must consider what kinds of psychosocial interventions are best for everybody, or if intervention causes discomfort for the person. This article emphasizes the necessity to consider the ethical aspects of the implementation of psychosocial interventions while taking into consideration the persons individual needs. A particular ethical challenge arises when a person with dementia is unable to express themselves verbally. Therefore, it is essential that the staff know the history and preferences of each person with dementia. The ethical aspects of psychosocial interventions for people with dementia will be discussed using Beauchamp and Childress four ethical principles: respect for autonomy, beneficence, non-maleficence and justice. The person-centred approach proposed by Kitwood’s and Brooker. (shrink)

Effective psychotherapy is often held to involve the expression of feelings. Within the person-centred approach, this view has been especially emphasised by Carl Rogers and Eugene Gendlin. I am concerned with the question of why the expression of feelings can be therapeutically effective. Many psychotherapists picture feelings as “inner experiences” for which the client tries to find appropriate words, but the difficulties with this picture, which were highlighted by Wittgenstein, seem to call for a very different approach. (...) Here, I develop a Wittgensteinian account of the expression of feelings that avoids the difficulties to which Wittgenstein draws attention. (shrink)

Osteopathy is a person-centred healthcare discipline that emphasizes the body’s structure-function interrelationship—and its self-regulatory mechanisms—to inform a whole-person approach to health and wellbeing. This paper aims to provide a theoretical framework for developing an integrative hypothesis in osteopathy, which is based on the enactivist and active inference accounts. We propose that osteopathic care can be reconceptualised under active inference as a unifying framework. Active inference suggests that action-perception cycles operate to minimize uncertainty and optimize an individual’s internal (...) model of the lived world and, crucially, the consequences of their behaviour. We argue that active inference offers an integrative framework for osteopathy, which can evince the mechanisms underlying dyadic and triadic exchanges and osteopathic care outcomes. We propose that this theoretical framework can underpin osteopathic care across the lifespan, from preterm infants to the elderly and those with persistent pain and other physical symptoms. In situations of chronicity, as an ecological niche, the patient-practitioner dyad provides the osteopath and the patient with a set of affordances, i.e., possibilities for action provided by the environment, that through shared intentionally, can promote adaptations and restoration of productive agency. Through a dyadic therapeutic relationship, as they engage with their ecological niche’s affordances—a structured set of affordances shared by agents—osteopath and patient actively construct a shared sense-making narrative and realise a shared generative model of their relation to the niche. In general, touch plays a critical role in developing a robust therapeutic alliance, mental state alignment, and biobehavioural synchrony between patient and practitioner. However, its role is particularly crucial in the fields of neonatology and paediatrics, where it becomes central in regulating allostasis and restoring homeostasis. We argue that from an active inference standpoint, the dyadic shared ecological niche underwrites a robust therapeutic alliance, which is crucial to the effectiveness of osteopathic care. Considerations and implications of this model—to clinical practice and research, both within- and outside osteopathy—are critically discussed. (shrink)

There is a long-standing failure to create an ethical culture around substance use disorders (SUDs) or dependence that actively supports people’s recovery efforts. Issues which impede the development of prorecovery environments are complex, but include the far-reaching effects of the social stigma that surrounds SUDs; and the failure to harness relational and social support that allows debates to transcend blaming individual substance users. As part of efforts to create prorecovery environments, it is important to acknowledge that bioethics debate on SUDs (...) is narrow in scope, prioritising topics related to its traditional interests in individual autonomy and novel technologies. As a result, it has not played a significant role in helping to transform the ethical cultures in which substance use recovery takes place. For example, it largely neglects the ethical challenges of developing an empathic, person-centred approach to substance use problems that listens and responds to the voices of clients. It has also participated little in efforts to develop a positive response to reducing the toxic effects of stigma. Indeed, some contributions from the field fan stigma, rather than alleviate it. The aim of this paper is to seed broader ethical debate, in academic literature and lay/professional communities, on how societies should respond to SUDs: steering a course between the critical, but narrow approach of bioethics and the empowerment discourse of evidence-based treatments. (shrink)

Background The existing literature on sexuality and intimacy in residential care tends to focus on either the question of rights, or the value of autonomy. Where the literature does reference values other than autonomy, such values are considered in the context of being a guide to whether or not a resident is autonomous, rather than being important values in their own right. Objective This paper draws on qualitative data gathered as part of a larger study in order to inform practice (...) on how care workers respond to intimacy issues that arise with residents with dementia and to inform a general ethics of sex and sexuality, demonstrating that an approach which permits value pluralism can be appropriate in certain contexts. Research Design The qualitative data referred to in this paper was gathered from semi-structured interviews undertaken as part of a larger mixed-method research project. The interview text was analysed using Thorne’s methodological approach, interpretive description. Participants and research context The qualitative arm of the project consisted of semi-structured interviews conducted between October 2018 and October 2019 with participants (staff, residents and family members) recruited from 35 residential care homes in Aotearoa New Zealand. Ethical Considerations Participation was informed, voluntary and written consent was gained before interviews. The project was approved by the Massey University Human Ethics Committee (Northern), number NOR 18/25. Findings Analysis of the scenarios presented in this paper shows that decision-making around sexual intimacy involving people with dementia in a residential care setting is complex and requires recognizing and weighing the different values that may be a in play. Conclusion A focus on safety and consent to the exclusion of other values which matter morally in this context is a mistake which prevents care workers from providing appropriately person-centred care to residents, as policies which focus on the goal of care allow space for critical examination of issues which are likely to be highly context-sensitive. (shrink)

Most mental health research largely ignores or minimises gender and age differences in depression. In ‘Don't mind the gap: Why do we not care about the gender gap in mental health?’, Patalay and Demkowicz identify a dearth of research on the causal factors of depression in young women. They attribute this to an over-reliance on biological accounts of gender differences in depression. Patalay and Demkowicz conclude that a person-centred approach that meaningfully engages with the reports of young women (...) with depression is more likely to expose the social drivers of depression that impact this group. This commentary focuses on Patalay and Demkowicz's call to examine the patient's lived experience. We argue that there is an urgent need to reflect upon the methodologies involved in examining lived experience and how they can be best utilised. Ultimately, we advocate for an approach known as ‘phenomenological psychopathology’, through a phenomenological investigation of depression in young women, we can go some way towards closing the gender gap. (shrink)