Continuous Experience Research Articles

Patient perspectives on continuity of care: adaption and preliminary psychometric assessment of a Norwegian version of the Nijmegen Continuity Questionnaire (NCQ-N)

BackgroundContinuity of care is regarded as a core quality element in healthcare. Continuity can be related to one or more specific caregivers but also applies to collaboration within a team or across boundaries of healthcare. Measuring continuity is important to identify problems and evaluate quality improvement of interventions.This study aimed to assess the feasibility and psychometric properties of a Norwegian version of the Nijmegen Continuity Questionnaire (NCQ).MethodsThe NCQ was developed in The Netherlands. It measures patients’ experienced continuity of care across multiple care settings and as a multidimensional concept regardless of morbidity. The NCQ comprises 28 items categorised into three subscales; two personal continuity scales, “care giver knows me” and “shows commitment”, asked regarding the patient’s general practitioner (GP) and the most important specialist; and one “team/cross boundary continuity” scale, asked regarding primary care, specialised care and cooperation between GP and specialist, with a total of seven factors. The NCQ was translated and adapted to Norwegian (NCQ-N) and distributed among patients referred to somatic rehabilitation (N = 984, response rate 34.5%). Confirmatory factor analyses (CFA), Cronbach’s alpha, intra-class correlation (ICC) and Bland–Altman plots were used to assess psychometric properties.ResultsAll patients (N = 375) who had responded to all parts of the NCQ-N were included in CFA. The CFA fit indices (CFI 0.941, RMSEA 0.064 (95% CI 0.059–0.070), SRMR 0.041) support a seven-factor structure in the NCQ-N based on the three subscales of the original NCQ. Cronbach’s alpha showed internal consistency (0.84–0.97), and was highest for the team/cross-boundary subscales. The NCQ-N showed overall high reliability with ICC 0.84–91 for personal continuity factors and 0.67–0.91 for team factors, with the lowest score for team continuity within primary care.ConclusionsPsychometric assessment of the NCQ-N supports that this instrument, based on the three subscales of the original Dutch NCQ, captures the concept of “continuity of care” among adult patients with a variety of longstanding medical conditions who use healthcare on a regular basis. However, its usefulness among varied patient groups, including younger people, patients with acute disorders and individuals with mental health problems, should be further evaluated.

Experiential continuity: how newly qualified teachers’ past international teaching experiences influence their current personal interpretative framework

This two-year longitudinal study explores how an earlier international teaching experience influences the way six newly qualified teachers perceive their current teaching practice and professional self-understanding during personally significant experiences. The concept of an experiential continuum, a key concept in these findings, suggests that every experience reflects back on previous experiences and modifies later experiences. We identified 12 individual examples of personally significant experiences in which newly graduated teachers described how their previous international teaching experience informed their present teaching practice. Our study shows that experiential continuity identified during significant personal experiences in newly qualified teachers’ teaching practice influences them when interpreting: (1) professional beliefs regarding teaching knowledge; (2) moral questions regarding the teacher they want to be or become; and (3) their international teaching experience as a tool for placing new experiences in perspective. The study describes practical cases of how experiential continuity can help newly qualified teachers to understand why they make certain personal or moral interpretations in their teaching induction phase and what this means for the teacher they want to become.

Continuity of care in youth services: A systematic review

Improving continuity of care is an important objective of various interventions and innovative programs for youngsters in vulnerable situations. Yet, the definition and conceptualization of continuity of youth care remains unclear, as well as important benefits and pitfalls regarding its implementation. Therefore, this study provides a systematic review of the literature, focusing on the conceptualization and evaluation of continuity. Database searches revealed 28 studies that focus on youth care interventions aimed at improving continuity of care. Selected studies were analyzed in Nvivo, using a three dimension model of continuity of care developed in general practice. Results show that continuity of care is rarely the central focus in youth services research. Moreover, its conceptualization is often limited to management aspects of continuity rather than highlighting other dimensions of continuity (e.g., relational and informational continuity). Also, experienced continuity of care as perceived by youngsters themselves is underrepresented in the selected studies, resulting in a partial view on continuity in youth care. It is concluded that more research is needed on youngsters' perceptions of continuity of youth services and its relational and information aspects, using qualitative study designs.

High experienced continuity in breast cancer care is associated with high health related quality of life and compatible with good medical quality and approved lead times

High experienced continuity in breast cancer care is associated with high health related quality of life and compatible with good medical quality and approved lead times

The perspective of frail elderly on their care networks in primary care

Introduction : Integration of care services is crucial for high quality elderly care. Multidisciplinary primary care networks who deliver integrated care to frail elderly consists of general practitioners, home care professionals, nursing home physician specialists, elderly counsellors, physiotherapists and others. It is known that soft factors of cooperation can influence the quality of care positively. However, little is known about the way in which patients experience soft factors such as culture (shared values), professionalism, team spirit and leadership. More is known about hard factors of cooperation. These factors regard to participants in the networks, interconnecting between participants and the strength of these correlations. In this research project we experimented whether it was possible to make professional care networks with frail elderly and reflect on hard and soft factors of collaboration. Methods : We selected four primary care networks, which were known for their innovative way of organizing elderly care. From these, we interviewed 44 frail elderly about the composition and functioning of their care network. During these interviews, we used questionnaires to map background characteristics. In open questions we related to soft elements of cooperation between professionals. We asked the respondents about the hard factors of cooperation using a social network map. They were asked about the participants in their professional care and welfare network (including their most important informal care giver), the frequency of contact with the care professionals, the quality of the contact, cooperation between the members of the network and the quality of the co-operation. The interviews we transcribed verbatim and analyzed qualitatively with Atlas-ti 7.1.. The quantitative data were processed and analyzed with SPSS. The information about the professional networks of the elderly was analyzed using SPSS, entered into Excel and processed into network figures using UCINET. Results : We were able to analyze 44 interviews (male/female 30%/70%, average age 84). The care networks consisted in average of nine care and welfare professionals. The frail elderly were well able to respond to questions about the hard factors of cooperation . They were able to mention the most important participants in their care networks spontaneously and reflect on their cooperation. Questions about the quality of cooperation proved difficult to answer. The GP is for frail elderly the central person in care. Most frequently, cooperation between the GP and home care professionals is mentioned. Elderly observe less cooperation from the GP with the physiotherapist and the welfare professionals. The cooperation between the GP and the informal care givers differs between the four care networks (25-50%). We found a little over one thousand quotes about soft factors of cooperation. It proved easier for the respondents to reflect on the quality of professionals and patient centeredness then on the way in which professionals work together or culture in multidisciplinary teams. One third of the respondents could tell us something about the existence of multidisciplinary team meetings. Only three elderly were able to tell us in detail about the cooperation between professionals. Perceived quality of care was found to correlate with the experienced continuity of care. Negative experiences correlated with the absence of continuity in home care. Experienced continuity between the GP and the district nurse correlated positively with quality of care. We didn’t find a relation between the presence of a care coordinator and the experienced continuity of care. Discussion : It is possible to draw up professional care networks with frail elderly. With help of a trained interviewer they are able to tell something mainly about the ‘hard’ factors. Often, an overview of the organisation of their care is missing. It turned out to be difficult for respondents to tell us something about the soft factors of cooperation. Respondents usually related to questions on this matter in terms of an impression. It is easier to tell something about practical cooperation shown by references, letters, sometimes consultations on coordination of care. Much of what happened behind the scenes eludes the eye of the elderly. Conclusion : This study was a case study and an experiment in gaining more insight in the way which frail elderly perceive hard and soft factors of collaboration. A next step would be to follow up the multidisciplinary teams in their improvement of integrated care for frail elderly, based on the outcomes of the interviews with their patients in a participatory action research approach.

Evaluation and Support Mechanisms of an Emerging University-wide Global Health Training Program

BackgroundGlobal health education is in high demand in the United States, across the continuum of learning, and field experiences are an essential part of this education. However, evaluations of these programs are limited. ObjectivesThe aim of this study was to evaluate a field placement program at Johns Hopkins University, in Baltimore, Maryland, to understand how to better support student training overseas and faculty mentorship. MethodsWe used qualitative and quantitative methods to gather data from program reporting requirements (152 student surveys and 46 experiential narrative essays), followed by 17 semistructured interviews, and 2 focus groups. Data were analyzed through manual coding and a socioecological model served as an analytical and a synthesizing framework. FindingsA series of factors influence the participants' experience in overseas placements spanning across 4 aggregate levels, from individual to societal, including opportunity for professional advancement, independence, loneliness and illness, mentorship quality, funding, institutional partnership building, opportunity for public health contribution, and for development of cultural competency. Faculty and students thought that the program was beneficial to the learning experience, particularly for its contribution to experiential knowledge of a low- and middle-income country setting and for developing cross-cultural relationships. Communication and scope of work were 2 areas in which students and faculty members often had different expectations and many students emerged having cultivated different skills than they or their mentor initially expected. Students found the experience useful for both their academic and professional careers and faculty members saw mentorship, one of their professional responsibilities, emerge. ConclusionsMany socioecological factors influence an overseas field experience, which in turn produces important effects on students' career choices, and faculty members appreciate the opportunity to serve as mentors. The most vital support mechanisms suggested for faculty and students included available funding, clear preparation, and communication facilitation across the experiential continuum.

The Acute Dying Experience

Article discussing the acute dying experience (ADE), which incorporates peritraumatic dissociation and hyperarousal into an experiential continuum lasting seconds to minutes. It is instantly triggered by the sudden, clear perception of threat of significant injury and/or death and followed, at times, by physical trauma, physiological derangement, and loss of consciousness. Results from this and other studies show that paradoxically the more terrifying and traumatic an accident may appear, the more peaceful and painless it may actually be experienced.

'Falling through gaps': primary care patients' accounts of breakdowns in experienced continuity of care.

Experienced continuity is important for good quality primary care but may be challenging to achieve. Little is known about how discontinuities or gaps in care may arise, how they impact on patients' experiences and how best to understand them so that they can be avoided or managed. Using the theoretical framework of candidacy, we aim to explore patients' experiences of discontinuities in care and to gain insight into how gaps come to be bridged and why they might remain unresolved. A secondary analysis was undertaken of interview data from a large study into continuity in primary care, involving a diverse sample of 50 patients, recruited from 15 general practices, one walk-in centre and community settings in Leicestershire, UK. Analysis was conducted using a constant comparative approach. Experiences of gaps in care were common, arising from failures in communication and coordination of care. Although some gaps were easily bridged, many patients described 'falling through gaps' because of difficulties establishing their candidacy for ongoing care when gaps occurred. These patients commonly had complex, chronic conditions and multi-morbidity. Bridging gaps required resources; relationship continuity was a valuable resource for preventing and repairing gaps in care. When gaps were not bridged, distress and dysfunctional use of health services followed. This study demonstrates that some patients with complex chronic conditions and multi-morbidity may be unable to get the continuity they need and highlights the potential for relationship continuity to help prevent vulnerable patients falling through gaps in care.

Patient experienced continuity of care in the psychiatric healthcare system-a study including immigrants, refugees and ethnic danes.

Aim: The purpose of this study was to investigate continuity of care in the psychiatric healthcare system from the perspective of patients, including vulnerable groups such as immigrants and refugees. Method: The study is based on 19 narrative interviews conducted with 15 patients with diverse migration backgrounds (immigrants, descendents, refugees, and ethnic Danes). Patients were recruited from a community psychiatric centre situated in an area with a high proportion of immigrants and refugees. Data were analysed through the lens of a theoretical framework of continuity of care in psychiatry, developed in 2004 by Joyce et al., which encompasses four domains: accessibility, individualised care, relationship base and service delivery. Results: Investigating continuity of care, we found issues of specific concern to immigrants and refugees, but also commonalities across the groups. For accessibility, areas pertinent to immigrants and refugees include lack of knowledge concerning mental illness and obligations towards children. In terms of individualised care, trauma, additional vulnerability, and taboo concerning mental illness were of specific concern. In the domain of service delivery, social services included assistance with immigration papers for immigrants and refugees. In the relationship base domain, no differences were identified. Implications for priority area: The treatment courses of patients in the psychiatric field are complex and diverse and the patient perspective of continuity of care provides important insight into the delivery of care. The study highlights the importance of person-centred care irrespective of migration background though it may be beneficial to have an awareness of areas that may be of more specific concern to immigrants and refugees. Conclusions: The study sheds light on concerns specific to immigrants and refugees in a framework of continuity of care, but also commonalities across the patient groups.

Experienced continuity of care in patients at risk for depression in primary care

Background: Existing studies about continuity of care focus on patients with a severe mental illness.Objectives: Explore the level of experienced continuity of care of patients at risk for depression in primary care, and compare these to those of patients with heart failure.Methods: Explorative study comparing patients at risk for depression with chronic heart failure patients. Continuity of care was measured using a patient questionnaire and defined as () number of care providers contacted (personal continuity); () collaboration between care providers in general practice (team continuity) (six items, score 1–5); and () collaboration between GPs and care providers outside general practice (cross-boundary continuity) (four items, score 1–5).Results: Most patients at risk for depression contacted several care providers throughout the care spectrum in the past year. They experienced high team continuity and low cross-boundary continuity. In their general practice, they contacted more different care providers for their illness than heart failure patients did (P < 0.01). Patients at risk for depression experienced a slightly better collaboration between these care providers in their practice: a mean score of 4.3 per item compared to 4.0 for heart failure patients (P = 0.03). The perceived cross-boundary continuity, however, was reversed: a mean score of 3.5 per item for patients at risk for depression, compared to 4.0 for heart failure patients (P = 0.01).Conclusion: The explorative comparison between patients at risk for depression and heart failure patients shows small differences in experienced continuity of care. This should be analysed further in a more robust study.

Factors associated to experienced continuity of care between primary and outpatient secondary care in the Catalan public healthcare system

ObjectiveTo analyze patient's reported elements of relational, informational and managerial (dis)continuity between primary and outpatient secondary care and to identify associated factors. MethodsCross-sectional study by means of a survey of a random sample of 1500 patients attended in primary and secondary care for the same condition. The study settings consisted of three health areas of the Catalan health system. Data were collected in 2010 using the CCAENA© questionnaire, which identifies patients’ experiences of continuity of care. Descriptive analyses and multivariable logistic regression models were carried out. ResultsElements of continuity of care were experienced by most patients. However, elements of discontinuity were also identified: 20% and 15% were seen by more than one primary or secondary care physician, respectively. Their secondary care physician or both professionals were identified as responsible for their care by 40% and 45% of users, respectively. Approximately 20% reported a lack of information transfer. Finally, 72% of secondary care consultations were due to primary care referral, whilst only 36% reported a referral back to primary care. Associated factors were healthcare setting, age, sex, perceived health status and disease duration. ConclusionUsers generally reported continuity of care, although elements of discontinuity were also identified, which can be partially explained by the healthcare setting and some individual factors. Elements of discontinuity should be addressed to better adapt care to patients’ needs.

Continuity of care for carers of people with severe mental illness: Results of a longitudinal study

Continuity of care has been demonstrated to be important for service users and carer groups have voiced major concerns over disruptions of care. We aimed to assess the experienced continuity of care in carers of patients with both psychotic and non-psychotic disorders and explore its association with carer characteristics and psychological well-being. Friends and relatives caring for two groups of service users in the care of community mental health teams (CMHTs), 69 with psychotic and 38 with non-psychotic disorders, were assessed annually at three and two time points, respectively. CONTINUES, a measure specifically designed to assess continuity of care for carers themselves, was utilized along with assessments of psychological well-being and caregiving. One hundred and seven carers participated. They reported moderately low continuity of care. Only 22 had had a carer's assessment and just under a third recorded psychological distress on the GHQ. For those caring for people with psychotic disorders, reported continuity was higher if the carer was male, employed, lived with the user and had had a carer's assessment; for those caring for people with non-psychotic disorders, it was higher if the carer was from the service user's immediate family, lived with them and had had a carer's assessment. The vast majority of the carers had not had a carer's assessment provided by the CMHT despite this being a clear national priority and being an intervention with obvious potential to increase carers' reported low levels of continuity of care. Improving continuity of contact with carers may have an important part to play in the overall improvement of care in this patient group and deserves greater attention.

From signal to signification in interactive environments

There is no doubt that the shift to real-time interactive and electronic media can benefit from a renewed focus on the signal and a signaletic paradigm in addition to the sign. However, in this article I argue that we must be careful not to simply fall into the idea of one paradigm to simply replace the other. Rather, we should investigate what the fusion between paradigms allows us to say about digital and interactive technologies. This article attempts to do this through a thinking-together of signal and signification as well as affect and emotion based on the work of French philosopher of technology Gilbert Simondon. Through an analysis of the minimal media installation Touched Echo, I argue that it is necessary to account for the dynamics of a larger experiential continuum to uncover the affective–emotive relations that occur through the transindividual workings of the signal and signification in interactive environments.Jonas Fritsch is Assistant Professor, PhD, in Interaction Design, Department of Aesthetics and Communication, Aarhus University. He works on a multitudinous thinking-together of interaction design and affect theory in conjunction with practical design experiments carried out at the Centre for Digital Urban Living (www.digitalurbanliving.dk) and CAVI (www.CAVI.dk). He holds an MA in Information Studies with a supplementary degree in Aesthetics and Communication from la Nouvelle Sorbonne, Paris, and is a member of the SenseLab, Concordia University.

Study protocol: optimization of complex palliative care at home via telemedicine. A cluster randomized controlled trial

BackgroundDue to the growing number of elderly with advanced chronic conditions, healthcare services will come under increasing pressure. Teleconsultation is an innovative approach to deliver quality of care for palliative patients at home. Quantitative studies assessing the effect of teleconsultation on clinical outcomes are scarce. The aim of this present study is to investigate the effectiveness of teleconsultation in complex palliative homecare.Methods/DesignDuring a 2-year recruitment period, GPs are invited to participate in this cluster randomized controlled trial. When a GP refers an eligible patient for the study, the GP is randomized to the intervention group or the control group. Patients in the intervention group have a weekly teleconsultation with a nurse practitioner and/or a physician of the palliative consultation team. The nurse practitioner, in cooperation with the palliative care specialist of the palliative consultation team, advises the GP on treatment policy of the patient. The primary outcome of patient symptom burden is assessed at baseline and weekly using the Edmonton Symptom Assessment Scale (ESAS) and at baseline and every four weeks using the Hospital Anxiety and Depression Scale (HADS). Secondary outcomes are self-perceived burden from informal care (EDIZ), patient experienced continuity of medical care (NCQ), patient and caregiver satisfaction with the teleconsultation (PSQ), the experienced problems and needs in palliative care (PNPC-sv) and the number of hospital admissions.DiscussionThis is one of the first randomized controlled trials in palliative telecare. Our data will verify whether telemedicine positively affects palliative homecare.Trial registrationThe Netherlands National Trial Register NTR2817

Development and pilot evaluation of a complex intervention to improve experienced continuity of care in patients with cancer

High experienced continuity of care in patients with cancer is associated with lower needs for care, better quality of life and better psychological outcomes. We developed and evaluated an intervention to improve experienced continuity. The intervention, consisted of (1) a 17-item patient-completed continuity assessment; (2) feedback to clinical nurse specialists and action to address the needs identified. Multidisciplinary team meetings and oncology outpatient clinics were observed, and patients and staff were interviewed. After qualitative work and reliability testing, the intervention was evaluated in a feasibility trial. Sixty-one patients provided data for analysis. No statistically significant differences were found in patients' experienced continuity between the trial arms, but important trends were seen in measures of needs for care in favour of those receiving the intervention. Feeding back findings from the continuity assessment to clinicians reduced patients' needs for care. Our results indicate that an intervention to target patients' experiences of continuity can reduce their subsequent needs for care. However, overcoming barriers to organisational change and addressing some patients' hesitation to report their continuity difficulties must be considered when implementing such an intervention. A phase III trial targeting patients with inadequate experienced continuity of care is recommended.

How Rules Shape Experience

Rules guide and constrain participants' actions as they participate in any educational activity. This ethnographically driven case study examines how organizational rules—the implicit and explicit regulations that constrain actions and interactions—influence children to use science in the experiential educational activity of raising 4-H market animals. Observations, interviews, and artifacts gathered are interpreted using Dewey's (1938) theory of an experiential continuum, with a focus on how social control in the form of explicit organizational rules influenced the children to use science. This study provides examples of two explicit organizational rules, market animal weight restrictions and record book rules, and analyzes the influence of these rules on bringing science into the children's 4-H experience. This study provides evidence that children involved in 4-H are influenced by organizational rules to incorporate skills and processes of science into their actions.

Mysticism and madness: Different aspects of the same human experience?

Associations between mysticism and madness have been made since earliest recorded history, and the striking resemblance between self-reports of both mystical and psychotic experience suggests that similar psychological processes may be involved in their occurrence. By exploring the similarities, and proposing a common element to mystical and psychotic experience (referred to here as the experience of “oneness”), this paper aims to place mysticism and madness onto the same experiential continuum. However, in contrast to much of the previous literature, the intention is not to pathologize mystical experience, but rather to normalize psychotic experience. The paper argues not only that the experience of oneness is entirely genuine and available to all humans, but also that it has an important psychological (and evolutionary) function. Using cognitive terminology, it then attempts to explain the processes determining whether an individual enjoys a fulfilling mystical experience, or suffers a debilitating psychotic breakdown (i.e., how “oneness” is experienced). Finally, this paper turns to look at some of the important implications such an approach might have for clinical practice and for the mental health of people in general.

The relationship between patients' experiences of continuity of cancer care and health outcomes: a mixed methods study

It is difficult to define continuity of care or study its impact on health outcomes. This study took place in three stages. In stage I we conducted qualitative research with patients, their close relatives and friends, and their key health professionals from which we derived a number of self completion statements about experienced continuity that were tested for reliability and internal consistency. A valid and reliable 18-item measure of experienced continuity was developed in stage II. In stage III we interviewed 199 patients with cancer up to five times over 12 months to ascertain whether their experiences of continuity were associated with their health needs, psychological status, quality of life, and satisfaction with care. The qualitative data revealed that experienced continuity involved receiving consistent time and attention, knowing what to expect in the future, coping between service contacts, managing family consequences, and believing nothing has been overlooked. Transitions between phases of treatment were not associated with changes in experienced continuity. However, higher experienced continuity predicted lower needs for care, after adjustment for other potential explanatory factors (standardised regression coefficients ranging from −0.12 (95% CI −0.20, −0.05) to −0.32 (95% CI −0.41, −0.23)). Higher experienced continuity may be linked to lower health care needs in the future.

The acute dying experience.

Article discussing the acute dying experience (ADE), which incorporates peritraumatic dissociation and hyperarousal into an experiential continuum lasting seconds to minutes. It is instantly triggered by the sudden, clear perception of threat of significant injury and/or death and followed, at times, by physical trauma, physiological derangement, and loss of consciousness. Results from this and other studies show that paradoxically the more terrifying and traumatic an accident may appear, the more peaceful and painless it may actually be experienced.

The Pre-Aksumite and Aksumite Settlement of NE Tigrai, Ethiopia

The first systematic archaeological survey conducted in NE Tigrai has produced new insights into the settlement history of the Pre-Aksumite and Aksumite kingdoms (800 B.C.–A.D. 700) of northern Ethiopia. Results of settlement data and ceramic and lithic artifact analyses from Gulo-Makeda indicate that the region experienced marked continuity in site occupations through time, suggesting a degree of political and economic stability that contrasts to the Aksum-Yeha regions. Cultural links to Eritrea including Matara and the Ancient Ona culture are evident in ceramics dating to Pre-Aksumite and later Middle to Late Aksumite times. Sites in Gulo-Makeda are strategically located along historically known trade routes in areas with moderate to high water flow potential, suggesting that control of trade and high agricultural productivity were factors in the development of elite groups in the region. Gulo-Makeda grew from having a culturally peripheral role in the Pre-Aksumite kingdom to being a center of some importance during Classic Aksumite times, as evidenced by the presence of elite trade artifacts.