From dialysis to transplantation, illness experience and patients' concerns about future: A longitudinal qualitative study

Background: Transplantation is the treatment of choice when compared to dialysis. Long-term evolution of patients is rarely comprehensively described. Thirty end-stage renal disease patient's experience of illness was explored from registration for transplantation until twenty-four months after transplantation. Methods: Longitudinal semi-structured interviews were conducted, and qualitative discourse analysis performed. Findings: Before transplantation loss of quality of life (QOL), emotional fragility related to dialysis constraints were reported, and increased with waiting-time. Six months after transplantation, recovered freedom was described but acute rejection, and life-dependency to immunosuppressants generated concerns. After twelve months, long-term survival of the graft, and possible return-to-dialysis were mentioned. After twenty months graft's dysfunction, co-morbidities, immunosuppressants side effects rose concerns even though QOL persisted. Most patients report positive transformations after transplantation, which are related to graft survival and limited co-morbidities. Discussion: As time passes, patients deal with changing illness constraints, and contemplate with anxiety possible new return to dialysis and/or transplantation.

Can smartphones and tablets improve the management of childhood illness in Tanzania? A qualitative study from a primary health care worker's perspective.

BACKGROUND: The impact of the Integrated Management of Childhood Illness (IMCI) strategy has been less than anticipated because of poor uptake. Electronic algorithms have the potential to improve quality of health care in children. However, feasibility studies about the use of electronic protocols on mobile devices over time are limited. This study investigated constraining as well as facilitating factors that influence the uptake of a new electronic Algorithm for Management of Childhood Illness (ALMANACH) among primary health workers in Dar es Salaam, Tanzania. METHODS: A qualitative approach was applied using in-depth interviews and focus group discussions with altogether 40 primary health care workers from 6 public primary health facilities in the three municipalities of Dar es Salaam, Tanzania. Health worker's perceptions related to factors facilitating or constraining the uptake of the electronic ALMANACH were identified. RESULTS: In general, the ALMANACH was assessed positively. The majority of the respondents felt comfortable to use the devices and stated that patient's trust was not affected. Most health workers said that the ALMANACH simplified their work, reduced antibiotic prescription and gave correct classification and treatment for common causes of childhood illnesses. Few HWs reported technical challenges using the devices and complained about having had difficulties in typing. Majority of the respondents stated that the devices increased the consultation duration compared to routine practice. In addition, health system barriers such as lack of staff, lack of medicine and lack of financial motivation were identified as key reasons for the low uptake of the devices. CONCLUSIONS: The ALMANACH built on electronic devices was perceived to be a powerful and useful tool. However, health system challenges influenced the uptake of the devices in the selected health facilities.

L'assistance au suicide en Suisse dans le contexte de polypathologie invalidante irréversible [Assisted suicide in Switzerland in the context of irreversible illness].

La prise en charge des personnes en fin de vie s'est beaucoup développée en Suisse au cours des dernières décennies, et assure, grâce aux soins gériatriques et palliatifs, dans une grande majorité des cas, une fin de vie digne aux patients. Il arrive toutefois que des malades, motivés notamment par une grande lassitude, aient recours à une association telle qu'EXIT pour les accompagner dans leur désir de mettre fin à leurs jours, même s'ils ne sont pas atteints d'une maladie mettant leur vie en danger. Nous avons étudié ce phénomène chez les 21 personnes, qui ont mis fin à leurs jours avec l'aide de l'association EXIT, sur une période de cinq ans (2001-2005) ; les souffrances physiques de ces malades étaient représentées essentiellement par des douleurs importantes, une asthénie, des troubles respiratoires, neurologiques ou digestifs. A cela, s'ajoutaient les difficultés psychologiques liées à la perte d'autonomie, la solitude, l'angoisse et le sentiment de perte de dignité. Malgré l'absence de maladie mortelle en soi, nous avons pu observer que les critères exigés par l'association EXIT pour envisager un accompagnement étaient respectés dans tous les cas.

Educational intervention for parents of adolescents with chronic illness: a pre-post test pilot study.

OBJECTIVE: This pilot experimental study tested the feasibility and intended effect of an educational intervention for parents to help them assist their adolescent child with chronic illness (CI) in becoming autonomous. METHODS: A two-phase pre-post pilot intervention study targeting parents of adolescents with CI was conducted. Parents were allocated to group 1 and 2 and received the four-module intervention consecutively. Intended effect was measured through online questionnaires for parents and adolescents before, at 2 months after, and at 4-6 months after the intervention. Feasibility was assessed through an evaluation questionnaire for parents. RESULTS: The most useful considered modules concerned the future of the adolescent and parents and social life. The most valued aspect was to exchange with other parents going through similar problems and receiving a new outlook on their relationship with their child. For parents, improvement trends appeared for shared management, parent protection, and self-efficacy, and worsening trends appeared for coping skills, parental perception of child vulnerability, and parental stress. For adolescents, improvement trends appeared for self-efficacy and parental bonding and worsening trends appeared for shared management and coping skills. CONCLUSION: Parents could benefit from peer-to-peer support and education as they support the needed autonomy development of their child. Future studies should test an online platform for parents to find peer support at all times and places.

The Life-World and Its Multiple Realities: Alfred Schütz's Contribution to the Understanding of the Experience of Illness

Alfred Schütz original contribution to the social sciences refers to his analysis of the structure of the "life-world". This article aims to invigorate interest in the work of this author, little known in the field of health psychology. Key concepts of Schütz' approach will be presented in relation to their potential interest to the understanding of the experience of illness. In particular, we develop the main characteristics of the everyday life and its cognitive style, that is, its finite province of meaning. We propose to adopt this notion to define the experience of chronic or serious illness when the individual is confronted to the medical world. By articulating this analysis with literature in health psychology, we argue that Schütz's perspective brings useful insight to the field, namely because of its ability to study meaning constructions by overcoming the trap of solipsism by embracing intersubjectivity. The article concludes by outlining both, the limitations and research perspectives brought by this phenomenological analysis of the experiences of health and illness.

New Algorithm for Managing Childhood Illness Using Mobile Technology (ALMANACH): A Controlled Non-Inferiority Study on Clinical Outcome and Antibiotic Use in Tanzania.

INTRODUCTION: The decline of malaria and scale-up of rapid diagnostic tests calls for a revision of IMCI. A new algorithm (ALMANACH) running on mobile technology was developed based on the latest evidence. The objective was to ensure that ALMANACH was safe, while keeping a low rate of antibiotic prescription. METHODS: Consecutive children aged 2-59 months with acute illness were managed using ALMANACH (2 intervention facilities), or standard practice (2 control facilities) in Tanzania. Primary outcomes were proportion of children cured at day 7 and who received antibiotics on day 0. RESULTS: 130/842 (15∙4%) in ALMANACH and 241/623 (38∙7%) in control arm were diagnosed with an infection in need for antibiotic, while 3∙8% and 9∙6% had malaria. 815/838 (97∙3%;96∙1-98.4%) were cured at D7 using ALMANACH versus 573/623 (92∙0%;89∙8-94∙1%) using standard practice (p<0∙001). Of 23 children not cured at D7 using ALMANACH, 44% had skin problems, 30% pneumonia, 26% upper respiratory infection and 13% likely viral infection at D0. Secondary hospitalization occurred for one child using ALMANACH and one who eventually died using standard practice. At D0, antibiotics were prescribed to 15∙4% (12∙9-17∙9%) using ALMANACH versus 84∙3% (81∙4-87∙1%) using standard practice (p<0∙001). 2∙3% (1∙3-3.3) versus 3∙2% (1∙8-4∙6%) received an antibiotic secondarily. CONCLUSION: Management of children using ALMANACH improve clinical outcome and reduce antibiotic prescription by 80%. This was achieved through more accurate diagnoses and hence better identification of children in need of antibiotic treatment or not. The building on mobile technology allows easy access and rapid update of the decision chart. TRIAL REGISTRATION: Pan African Clinical Trials Registry PACTR201011000262218.

Erforschung und Antworten auf den vorzeitigen Todeswunsch eines Patienten mit einer schweren fortgeschrittenen Krankheit [Exploring and Responding to a Wish to Hasten Death of a patient with Advanced Illness].

It is not uncommon for patients with an advanced disease to express a desire to their physician to hasten their death. Recent studies show that the motivation of such a desire is multifactorial and multidimensional, including depression, physical, psycho-social and spiritual suffering, fears about the process of dying and/or misunderstandings about the options for end-of-life care. The objective of this paper is to propose to the physician how to explore the dimensions of this request and some elements to answer it.

¿Pueden contribuir los métodos visuales a avanzar hacia una investigación inclusiva? Un estudio sobre inclusión sociolaboral con personas con Trastorno Mental Grave (TMG) = Can visual methods help to go forward inclusive research? A study about social and labor inclusion with people with Severe Mental Illness (SMI)

En este artículo se pretende mostrar cómo la utilización de métodos visuales en la investigación contribuye a potenciar la participación activa de las personas con TMG. Se utiliza como ejemplo un estudio de caso de corte cualitativo que incorpora tres actividades de componente visual (el dibujo “el río de la vida”, las fotografías y el dibujo de proyección de futuro) para favorecer la reflexión narrada que, sobre sus experiencias y vivencias, desarrollan cinco personas con TMG. El uso de las fotografías y dibujos en este estudio permite afirmar que estas estrategias se han mostrado válidas para acceder, en la medida que los participantes han querido, a esferas de vida personales en trayectorias vitales determinadas por la enfermedad mental

Advancing towards inclusive social research: visual methods as opportunities for people with severe mental illness to participate in research

This article explores the possibilities offered by visual methods in the move towards inclusive research, reviewing some methodological implications of said research and reflecting on the potential of visual methods to meet these methodological requirements. A study into the impact of work on social inclusion and the social relationships of people suffering from severe mental illness (SMI) serves to illustrate the use of visual methods such as photo elicitation and graphic elicitation in the context of in-depth interviews with the aim of improving the aforementioned target group’s participation in research, participation understood as one of the basic elements of inclusive approaches. On the basis of this study, we reflect on the potential of visual methods to improve the inclusive approach to research and conclude that these methods are open and flexible in awarding participantsa voice, allowingpeople with SMI to express their needs, and therefore adding value to said approach

Patient education to support self-management of patients with mental illness

This study explores areas which need to be improved to develop the quality of patient education to support self-management of patients with mental illness in psychiatric hospitals. The study was conducted in five phases during the period 2000 – 2007. First, patients‘ (n = 313) satisfaction with patient education were investigated. Second, patients' (n = 51) experiences of patient education were explored. Third, a national survey was conducted to investigate realisation of patient education from the staff (n = 55) viewpoint. Fourth, outcomes of patient education were investigated by evaluating the impacts of different patient education methods on patients‘ (n = 311) attitudes towards medication, knowledge level and importance of information. Fifth, patients‘ (n = 16) perceptions of different patient education methods were explored. Patients reported poor satisfaction with patient education (Phase I), and they have considerable need to receive information during their hospital stay (Phase II). Described by staff, the content of patient education covered almost all informational areas investigated. However, discrepancies related to the realisation of patient education were found. (Phase III.) Evaluation of different patient education methods indicate that patients derived benefits from structured patient education with supportive methods (Phase IV) and patients also perceived that these methods supported their information receiving (Phase V). In order to improve the quality of patient education to support self-management of patients with mental illness patient education should be systematically and individually provided to all patients by using different educational methods. Realisation of this should be ensured by providing written instructions, improving nurses‘ knowledge and skills as well ensuring operating conditions.

Exploring the Impact of Mental Health Education on Adolescents’ Perceptions About Mental Health and Mental Illness. Improving community health

The purpose of this study was to explore perceptions of mental health and mental illness as well as the perceptions towards people with mental illness among adolescents, and further to examine the impact that a mental health educational intervention has on these perceptions. The review of the literature revealed a small number of publications on mental health educational interventions among adolescents which aimed at increasing knowledge and affecting attitudes towards mental illness with positive results. Fifty nine pupils (13-16 years old) from two randomly selected secondary schools around Athens, Greece, participated in this study. These schools were randomly selected as the experimental group (n=28) which participated in the mental health educational intervention, and the comparison group (n=31), which did not receive any intervention. Data were collected using individual interviews with open-ended questions, drawings and a questionnaire (Opinions about Mental Illness - O.M.I. scale). The participants described mental health and mental illness before and after the intervention, using the same expressions for both terms. Among the experimental group, changes were seen within the same expressions after the intervention, although some descriptions did not change. However, after the intervention, participants in the experimental group did not confuse mental health with mental illness and they also included specific diagnostic examples or stated that mental illness can happen to anyone and it can be managed. Moreover, they expressed positive attitudes towards mentally ill people, which they had not done before the intervention. The analysis of the drawings before the intervention showed that mentally ill persons were drawn similarly in both groups. After the intervention, the drawings of the participants in the experimental group changed, including fewer negative elements, while the drawings of the comparison group did not change. Regarding the results on the O.M.I. scale, it was found that the score on the Social Discrimination factor significantly decreased from pre-test to post-test in both study groups. The experimental group had higher levels on Social Discrimination at pre-test compared to the comparison group, but this difference was not significant at post-test. No significant changes were found for the Social Restriction factor for either study group. Scores of the Social Care and Social Integration factors increased significantly only in the intervention group. Overall, the results of this study indicate that the mental health educational intervention had a positive impact on the perceptions about mental health and mental illness among adolescents, and (mental) health professionals can use these results for implementing similar interventions and further research.