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This study departs from the assumption that studies addressing sexuality in the field of nursing present changes and broaden the scope of discussion to include gender and sexual rights, although a strong tendency to link sexuality to its biological aspects is still observed. This study identifies the state-of-the-art of studies addressing sexuality published by two international journals: Latin American Journal of Nursing and The Brazilian Journal of Nursing. The sources were papers published in both periodicals over a period often years (from 1998 to 2007). In a universe of 1,894 searched abstracts, 29 mentioned the word 'sexuality'. The results confirm this study's assumption showing that the studies addressing sexuality from the perspective of nursing published by these two journals broaden the understanding on the subject as they incorporate categories such as gender, but also excessively link sexuality to its biological aspects. [ABSTRACT FROM AUTHOR]

This methodological paper connects posthuman conceptualizations of voice with artistic research and examines whether it opens toward different registers and levels of embodied and aesthetic forms of knowing that cut across normative accounts of what it means to know. We start from what Patti Lather calls 'a praxis of stuck places' and ask how to give voice to experiences such as chronic illness and pain, while at the same time disrupting representational forms of illness and pain. To investigate this, we first critically engage with the popular genre of the health diary and its representational form. Secondly, we explore how Lisa A. Mazzei concept of 'voice without subject' can support us in disrupting the normative and representational production of voice, while working with a failing voice. Finally, we analyze the sound installation, A Borrowed Diary —made by M. Broeckmeyer, and explore how it opens up alternative approaches to voice and chronic pain. We will argue that making 'voice without subject' work, touch, and resonate can impact the lives of people who often remain unheard, in that it acknowledges experiences and expressions that are mostly not validated. Creating with 'voice without subject' makes tangible how personal experiences, however, temporarily, contribute to the bigger picture of how we look at and listen to people with illnesses and/or disabilities. [ABSTRACT FROM AUTHOR]

Objective: Although Ireland has one of the highest levels of well‐being in Europe, having a health condition has been found to have a direct negative impact. The aim of this study is to evaluate the current situation and the experiences of patients with epidermolysis bullosa (EB), a rare genetic skin disease, and their relatives living in Ireland, with a focus on burdens and helpful practices. Methods and Measures: In a mixed‐methods design, a series of standardised questionnaires were combined with open‐ended questions. Via an online survey, data from n = 59 EB patients and relatives of EB patients living in Ireland were collected. Results: EB affects both the patients and their relatives. Burdens were found in relation to the visibility of EB, the degree of severity, the current health status, reduced mobility, the financial impact of EB, the psychosocial impact and personal and social resources. The paper also analyses existing resources and highlights opportunities for support and needs of improvement. Conclusion: Quality of life with EB is influenced by somatic symptoms and the psychosocial burden. Individual helpful practices in dealing with this rare disease can be considered as mediators, but they need to be supported by structural and healthcare improvements. Patient or Public Contribution: The perspective of EB patients, their relatives and EB experts were taken into account in the development of the study design via two feedback loops with the EB patient organisations DEBRA Ireland and DEBRA Austria. The design was adapted accordingly. Additionally, by including open‐ended questions, patients and relatives could contribute their individual perspectives and add insights into their lives with EB that might not have been captured with the structured online survey alone. [ABSTRACT FROM AUTHOR]

The Revised Illness Perception Questionnaire (IPQ-R) assesses patients' perspectives of their illnesses. Original psychometric testing occurred in limited populations. The purpose of this reliability generalization meta-analysis was to: (1) estimate internal consistency reliability of each IPQ-R subscale, and (2) test moderators of these estimates. Web of Science was searched in July 2022 for articles citing the original IPQ-R paper that reported IPQ-R reliability data. Cronbach's alphas (⍺) were pooled for each IPQ-R subscale using inverse variance weighting and DerSimonian and Laird estimation. Sixty-six studies met criteria. Overall pooled ⍺ estimates were acceptable: 0.71–0.87. Treatment control reliability was reduced among cardiac (⍺ = 0.68), diabetes/kidney disease (⍺ = 0.63), and mixed/other (⍺ = 0.66) samples; cyclical reliability was reduced in cancer (⍺ = 0.65) samples. Age, gender, and race were also significant moderators. Subscale reliability varied based on sample characteristics. Adapting IPQ-R subscales to account for sample variation could improve measurement of illness perception constructs. [ABSTRACT FROM AUTHOR]

Background and Aims: Unmet supportive care needs (SCN) refer to perceived gaps in the support parents want to manage caregiving activities for children with chronic health conditions (CHC) and the support received. This review aims to systematically identify the unmet SCN of families with children living with five common paediatric CHC and characterise the assessment tools used to measure SCN. Design: Systematic review methodology with narrative synthesis of data. Reporting followed the PRISMA statement guidelines. Method: Literature searches were conducted in electronic databases Medline complete, PsycINFO, CINHAL and EMBASE to retrieve relevant articles published between 1990 and July 2022. Eligible studies involved (i) children aged 0–18 years diagnosed with either of cancer, congenital heart disease (CHD), diabetes, asthma, renal disease and (ii) assessment of unmet SCN. Studies involving children with genetic or developmental conditions were excluded. The methodological quality of studies was assessed using JBI assessment tool. Results: Of 6223 articles screened, 34 papers were included (25 quantitative, 5 qualitative and 4 mixed design). Most papers explored unmet needs of families with cancer (n = 26). The remaining articles concerned CHD (n = 5), asthma (n = 2) and mixed CHC (n = 1, renal failure, and diabetes). Information (e.g. treatment, lifestyle, etc.) and health care (e.g. emotional support, practical services, etc.) were the most common unmet need domains across health conditions. A variety of methods and need assessments hampered comparisons between studies both across and within CHC. Conclusion: Irrespective of illness, addressing unmet informational or health care needs may help to optimise outcomes and care for children and families living with common CHC. There was considerable variation in reporting styles, study design and need assessments both within and across conditions. Relevance to Clinical Practice: Health care professionals must routinely evaluate the type, quality and quantity of psychoeducation and support that families of children with CHC want and receive. Providing nurses with more effective strategies to assess child and family needs across a broad range of domains may help to increase understanding of where further support for families is required. Patient or Public Contribution: There was no patient or public contribution to this study as it involved a systematic review of existing literature. [ABSTRACT FROM AUTHOR]

Background: Acquired laryngotracheal stenosis (LTS) is a rare condition that causes breathlessness and dyspnoea. Patients have reconstructive airway surgery to improve their breathing difficulties, but both LTS and the surgery can cause voice difficulties. The existing evidence base for management of voice difficulties for adults with LTS focuses on symptoms. There is limited information to provide clinical guidance for speech and language therapists (SLTs) and a limited understanding of the impact of voice changes on adults with LTS. Aim: To investigate the lived experience of adults with laryngotracheal stenosis (LTS), who have had reconstructive surgery; here focussing on voice concerns with the aim of guiding clinical care for SLTs. Methods and Procedures: A phenomenological, qualitative study design was used. Focus groups and semi‐structured interviews were completed with adults living with LTS who had had reconstructive surgery. Audio recordings were transcribed and inductive thematic analysis was used by the research team to identify themes and sub‐themes. Outcomes and Results: A total of 24 participants (five focus groups and two interviews) took part in the study before thematic saturation was identified in analysis. Three main themes were identified specific to the experience of living with LTS: the Medical, Physical and Emotional journey. All participants referenced voice difficulties as they related to each of these overall themes. Sub‐themes directly related to voice included experience of surgery, information provision, staff expertise/complacency, symptoms, symptom management, identity, support networks, impact on life and living with a chronic condition. Conclusions and Implications: In this qualitative study participants have described the integral part voice difficulties play in their lived experience of LTS and reconstructive surgery. This is considered in the context of their clinical care and the need for individualised management and information provision throughout the course of their condition. The broader research literature relating to voice difficulties is explored with links made to people with LTS and recommendations made for future research into people living with LTS and dysphonia. What this paper adds: What is already known on this subject: Adults with laryngotracheal stenosis (LTS) experience voice changes as a result of their condition, and the surgeries necessary as a treatment. These changes can lead to altered pitch, vocal fatigue, loss of pitch range and loss of volume control. Although there are known psychosocial implications both to living with a chronic condition and voice difficulties there has been no research exploring this in adults with LTS, and there is minimal clinical guidance for speech and language therapists (SLTs) working with these patients. What this paper adds to existing knowledge: This research is the first study to explore the lived experience of adults with LTS who undergo reconstructive surgery, focusing on their voice concerns. This study demonstrates the multifactorial impacts of voice changes on all aspects of the lives of adults with LTS and the need for individualised information provision and clinical care to help support them. What are the potential or actual clinical implications of this work?: Adults with LTS want expert SLTs to facilitate their care and support them throughout their LTS journey alongside other support networks. They want to be carefully prepared for reconstructive surgery and given clear information about symptoms and management of their voice difficulties. This has led to the reorganisation of the care pathway at our centre, and the introduction of a patient‐led pretreatment session. [ABSTRACT FROM AUTHOR]

Background: In everyday conversations, a person with aphasia (PWA) compensates for their language impairment by relying on multimodal and material resources, as well as on their conversation partners. However, some social actions people perform in authentic interaction, proposing a joint future activity, for example, ordinarily rely on a speaker producing a multi‐word utterance. Thus, the language impairment connected to aphasia may impede the production of such proposals, consequently hindering the participation of PWAs in the planning of future activities. Aims: To investigate (1) how people with post‐stroke chronic aphasia construct proposals of joint future activities in everyday conversations compared with their familiar conversation partners (FCPs); and (2) how aphasia severity impacts on such proposals and their uptake. Methods & Procedures: Ten hours of video‐recorded everyday conversations from seven persons with mild and severe aphasia of varying subtypes and their FCPs were explored using conversation analysis. We identified 59 instances where either party proposed a joint future activity and grouped such proposals according to their linguistic format and sequential position. Data are in Finnish. Outcomes & Results: People with mild aphasia made about the same number of proposals as their FCPs and used similar linguistic formats to their FCPs when proposing joint future activities. This included comparable patterns associated with producing a time reference, which was routinely used when a proposal initiated a planning activity. Mild aphasia manifested itself as within‐turn word searches that were typically self‐repaired. In contrast, people with severe aphasia made considerably fewer proposals compared with their FCPs, the proposal formats being linguistically unidentifiable. This resulted in delayed acknowledgement of the PWAs' talk as a proposal. Conclusions & Implications: Mild aphasia appears not to impede PWAs' ability to participate in the planning of joint future activities, whereas severe aphasia is a potential limitation. To address this possible participatory barrier, we discuss clinical implications for both therapist‐led aphasia treatment and conversation partner training. WHAT THIS PAPER ADDS: What is already known on the subject: PWAs use multimodal resources to compensate for their language impairment in everyday conversations. However, certain social actions, such as proposing a joint future activity, cannot ordinarily be accomplished without language. What this paper adds to existing knowledge: The study demonstrates that proposing joint future activities is a common social action in everyday conversations between PWAs and their family members. People with mild aphasia used typical linguistic proposal formats, and aphasic word‐finding problems did not prevent FCPs from understanding the talk as a proposal. People with severe aphasia constructed proposals infrequently using their remaining linguistic resources, a newspaper connecting the talk to the future and the support from FCPs. What are the potential or actual clinical implications of this work?: We suggest designing aphasia treatment with reference to the social action of proposing a joint future activity. Therapist‐led treatment could model typical linguistic proposal formats, whereas communication partner training could incorporate FCP strategies that scaffold PWAs' opportunities to construct proposals of joint future activities. This would enhance aphasia treatment's ecological validity, promote its generalization and ultimately enable PWAs to participate in everyday planning activities. [ABSTRACT FROM AUTHOR]

Background: The Patient Health Engagement Scale was designed to assess the emotional and psychological attitudes of patients' engagement along their healthcare management journey. Aim: This study aimed to conduct psychometric testing of the Turkish version of the Patient Health Engagement Scale among patients with chronic diseases. Design: A cross‐sectional validation study was conducted and reported according to the STROBE checklist. Methods: There were 520 patients who completed the scale between March 2017 and February 2018. The content, construct and concurrent validity were evaluated. The reliability of the scale was measured using internal consistency and construct reliability. Construct validity was examined using exploratory factor analysis and confirmatory factor analysis. Results: The scale's validity was enabled by the translation and back translation method. The content validity index of the scale was 0.88. Construct validity determined one factor. The total variance was calculated at 85.29%. The factor loads ranged between 0.86 and 0.95. The results of the confirmatory factor analysis showed goodness‐of‐fit indices in the excellent range according to the literature. The reliability of the scale was calculated at 0.95. Conclusion: The scale was found to be a valid and reliable measurement tool to be used in identifying the engagement with health levels of patients with chronic diseases. Summary statement: What is already known about this topic? The Patient Health Engagement Scale describes the psychological readiness to be active in one's own health management.The Patient Health Engagement Scale measures patients' perceived susceptibility and severity of the disease and orientation toward health management. What this paper adds? The Turkish version of the Patient Health Engagement Scale was found to be a valid and reliable measurement tool. The implications of this paper: Engaging patients in their healthcare management may have an important role in improving treatments for patients with chronic diseases.The Patient Health Engagement Scale can be used to plan and evaluate the effectiveness of the interventions. [ABSTRACT FROM AUTHOR]

Palliative care social workers are trained to identify how trauma manifests over the course of serious and chronic illness. This expertise can guide patients and team members to ensure a trauma-informed experience of care. This paper identifies the growth of outpatient palliative care clinics as an opportunity for palliative care social workers to emphasize this clinical skill set and assume a leadership role in the implementation of trauma-informed practices early in the trajectory of serious illness. [ABSTRACT FROM AUTHOR]

This paper by Miles Little and colleagues identified the state they described as "liminal" within the trajectory of cancer survivorship. Since that time the concept of liminality has provided a powerful model to explore some of the difficulties experienced by people with severe and chronic illness. In this commentary I consider the expanding application of liminality not just to a widening range of medical conditions but to the consequences of therapeutic interventions as well and how this expansion has enriched and challenged its use as a conceptual tool. [ABSTRACT FROM AUTHOR]

Background: Patients with chronic diseases (PWCDs) were severely affected by the coronavirus disease 2019 (COVID-19) pandemic, as they were prevented from making the necessary visits to health facilities for medical review and to collect their medication. The emergence of the health crisis and inadequate access to quality care affected chronic care management. The perspectives of PWCDs are not known, and therefore the research on which this paper is based sought to investigate the lived experiences of these patients during the COVID-19 pandemic. Methods: A qualitative phenomenological design was used to obtain the lived experiences of PWCDs identified for participation in the study by means of purposive sampling. Patients' experiences were obtained during individual structured interviews, and a checklist was used to gather patient characteristics from their files. Results: Three themes emerged from the study findings, namely poor healthcare services, the socio-economic impact of the COVID-19 pandemic, and the psychological impact of the COVID-19 pandemic. The COVID-19 pandemic had devastating effects on PWCDs, in that they experienced barriers to accessing quality chronic care services and suffered psychological and financial difficulties that affected their health, life, needs and expectations. Conclusion: Policymakers should consider PWCDs when responding to a public health concern in the future. Contribution: The study findings may have an impact on future policies regulating the management of chronic diseases during epidemics, in order to improve patient health outcomes and satisfaction with healthcare services and the chronic care model based on the experiences of PWCDs. [ABSTRACT FROM AUTHOR]

Objective: To evaluate beliefs, and attitudes about health of refugees with chronic conditions such as diabetes mellitus type 2, hypertension, chronic obstructive pulmonary disease, and posttraumatic stress disorder and the consequent effects on self-care in comparison to resident populations. Design: A systematic review methodology was used. PubMed, Embase, PsycINFO and CINAHL databases were searched for relevant articles. The main terms analysed were health beliefs, chronic conditions and refugee populations. From 844 articles, 45 were retained for further assessment, and finally 5 met the inclusion criteria. Results: Differences in the health beliefs, attitudes and self-care management approaches of refugees compared to resident populations were identified in two studies. The remaining three papers did not make comparisons between the refugees and the resident population, nor did they specifically explore the refugees' health beliefs. Of the five studies, three were carried out in Sweden and two in the US. Refugees who have poorer mental and physical health as well as higher prevalence of chronic diseases than the populations among which they resettle seem to lack the knowledge about their illness, symptoms and self-management and thus are less able to control their chronic conditions. Conclusion: The findings highlighted the deficiency in the literature of studies which examine health beliefs and attitudes of minority groups such as refugees who have chronic conditions. The findings also gave insight to the need for a distinctive understanding of refugee health and the management of chronic conditions in comparison to other non-refugee migrant groups. Further research is needed to fully understand the differences between refugees and local populations in terms health beliefs, chronic disease and self-management. [ABSTRACT FROM AUTHOR]

This paper describes the Wellness in Chronic Care (WCC) model, an innovative integrative clinical intervention method aimed at helping social workers manage the care of patients living with chronic illnesses and their families. The goal is to propose appropriate clinical responses to the changing reality of the health system. This new reality poses new challenges that require caregivers (social work practitioners and family members) to develop suitable skills and expertise. The intervention method we developed offers a new paradigm that entails partnership and the need to assume responsibility in decision-making while coping with the illness over time. The intervention provides practical tools and methods for coping and managing the illness. These factors have contributed to building a specifically tailored intervention program for patient and family care to achieve an effective and meaningful wellbeing. An assessment of the training program of the intervention model and its implementation is presented. The model was found to be essential yet some found it difficult to make the needed changes. [ABSTRACT FROM AUTHOR]

Purpose: This paper explored the reliability of self-reported health and the impact of the social position in determining the inconsistent health response (IHR), in late life. Reliability of self-reported health is important to evaluate, as it is the primary step for asking health-care facility. As self-reported health is a subjective measure, elderly people might have a tendency of under-reporting the health problem because of lower socioeconomic status. This incidence can cause inaccurate estimate of the health problem of the aged at the time of formulating health policy or providing health-care infrastructure. Therefore, the purpose of this study is to explore the sources of inconsistent responses of self-reported health by comparing it with the existence of chronicle ailment and to identify the vulnerable group that health care supports. Design/methodology/approach: The study uses nationally representative unit-level data from the National Sample Survey of India. Using the bi-variate probit model, joint estimation of reported health and IHRs is determined. The study compares perceived and actual health status and explores how individual characteristics and socioeconomic position contributes to IHRs among the elderly population. Findings: Major findings of this study are as follows: firstly, self-reported health has little reliability, as it is compared with the existence of chronicle ailment. Older people in the rural areas have greater tendency to under-estimate the health problem, whereas urban elders tend to over-estimate it; and secondly, the inconsistency in health response is significantly associated with social caste, economic status and attainment of education. Social implications: The results of this study from bivariate probit model offer deeper understandings about the reliability of self-reported health and provide further insights to improve policy design formulated to mitigate the health inequality among the elders. This study might be helpful to design an inexpensive and easily available health measure, which is very important for a highly populated aging country with limited health-care resources. Originality/value: To the best of author's knowledge, it is the first study that has identified the sources of inconsistent health and direction of inconsistency that is where self-reported health over- or under-estimates the actual health response among the elderly in a developing country like India, where the growth rate of population aging is faster than the world. [ABSTRACT FROM AUTHOR]

Recent research has examined patients' drawings of their illness as a means to identify patients' illness representations. The aim of this systematic review was to examine which representations are evident in patients' drawings, and whether drawing assessments are associated with patient outcomes. Ten electronic databases were searched for published journal papers in English up to 1 July 2017. Narrative synthesis summarised findings by participant characteristics, study design, illness representations, and associations with outcomes. There were 101 eligible studies, published across 29 different countries, with 27 different disease categories; 54 of the studies were with adults and 80 were cross-sectional. All core illness perception domains were evident; the most common being identity and related concepts (including symptoms, anatomy, pathophysiology), and emotional representations (including fear, denial, stigma). Perceptions of treatment and the clinical and social environment were evident. More organ damage drawn and larger drawing size were associated with worse perceptions and health outcomes, and drawings distinguished between patient groups. Limitations include the inability to conduct meta-analysis. In conclusion, patients' drawings reveal additional domains of illness representations, specifically perceptions of pathophysiology, treatment and social environments, as well as illness pre-occupation. These findings expand theories of self-regulation and suggest image-based intervention strategies. [ABSTRACT FROM AUTHOR]

This paper explores the role of the General Practitioner Liaison Nurse (GPLN) in improving integration and coordination of services within Primary Health Care. This position can play a major role in care coordination and cultural change. The GPLN within HealthOne Mt Druitt (HOMD) identifies patients' needs and facilitates communication, case conferencing and care coordination between health and other providers. The priority areas of children and their families at risk or with significant unmet needs, and chronic aged and complex care, were identified as target areas. This paper focuses on the GPLN within the chronic aged and complex care service model. The GPLN within HOMD was able to improve coordination and integration of services for patients of the facility. Activities included organising multidisciplinary services and addressing psychosocial issues. Patients and community health staff identified the importance of the role for improving coordination and integration of services. Decision and policy makers saw the position as vital to the implementation, operation and sustainability of HOMD. [ABSTRACT FROM AUTHOR]

Background: Wagner's Chronic Care Model (CCM), as well as the expanded version (ECCM) developed by Barr and colleagues, have been widely adopted as frameworks for prevention and management of chronic disease. Given the high prevalence of chronic illness in older persons, these frameworks can play a valuable role in reorienting the health care system to better serve the needs of seniors. We aimed to identify and assess the measured goals of E/CCM interventions in older populations. In particular, our objective was to determine the extent to which published E/CCM initiatives were evaluated based on population, community, system and individual-level outcomes (including clinical, functional and quality of life measures).Methods: We conducted a systematic search of the Science Citation Index Web of Knowledge search tool to gather articles published between January 2003 and July 2014. We included published CCM interventions that cited at least one of the fundamental papers that introduced and described the CCM and ECCM. Studies retained for review reported evaluations of senior-focused E/CCM initiatives in community-based settings, with the topic of "older adults" OR senior* OR elder* OR geriatric OR aged. The resulting 619 published articles were independently reviewed for inclusion by two researchers. We excluded the following: systematic reviews, meta-analyses, descriptions of proposed programs, and studies whose populations did not focus on seniors.Results: We identified 14 articles that met inclusion criteria. Studies used a wide range of measures, with little consensus between studies. All of the included studies used the original CCM. While a range of system-level and individual patient outcomes have been used to evaluate CCM interventions, no studies employed measures of population or community health outcomes.Conclusions: Future efforts to test E/CCM interventions with seniors would be aided by more consistent outcome measures, greater attention to outcomes for the caregivers of older persons with chronic illness, and a greater focus on population and community impacts. [ABSTRACT FROM AUTHOR]

Objective: Multimedia interventions are increasingly used to deliver information in order to promote self-care among patients with degenerative conditions. We carried out a realist review of the literature to investigate how the characteristics of multimedia psychoeducational interventions combine with the contexts in which they are introduced to help or hinder their effectiveness in supporting self-care for patients with degenerative conditions.Method: Electronic databases (Medline, Science Direct, PSYCHinfo, EBSCO, and Embase) were searched in order to identify papers containing information on multimedia psychoeducational interventions. Using a realist review approach, we reviewed all relevant studies to identify theories that explained how the interventions work.Results: Ten papers were included in the review. All interventions sought to promote self-care behaviors among participants. We examined the development and content of the multimedia interventions and the impact of patient motivation and of the organizational context of implementation. We judged seven studies to be methodologically weak. All completed studies showed small effects in favor of the intervention.Significance Of Results: Multimedia interventions may provide high-quality information in an accessible format, with the potential to promote self-care among patients with degenerative conditions, if the patient perceives the information as important and develops confidence about self-care. The evidence base is weak, so that research is needed to investigate effective modes of delivery at different resource levels. We recommend that developers consider how an intervention will reduce uncertainty and increase confidence in self-care, as well as the impact of the context in which it will be employed. [ABSTRACT FROM AUTHOR]

Background: The use of patient-facing health technologies to manage long-term conditions is increasing; however, children and young people may have particular concerns or needs before deciding to use different health technologies.Aims: To identify children and young people's reported concerns or needs in relation to using health technologies to self-manage long-term conditions.Methods: A scoping review was conducted. We searched MEDLINE, PsycINFO and CINAHL in February 2019. Searches were limited to papers published between January 2008 and February 2019. We included any health technology used to manage long-term conditions. A thematic synthesis of the data from the included studies was undertaken. We engaged children with long-term conditions (and parents) to support review design, interpretation of findings and development of recommendations.Results: Thirty-eight journal articles were included, describing concerns or needs expressed by n=970 children and/or young people aged 5-18 years. Most included studies were undertaken in high-income countries with children aged 11 years and older. Studies examined concerns with mobile applications (n=14), internet (n=9), social media (n=3), interactive online treatment programmes (n=3), telehealth (n=1), devices (n=3) or a combination (n=5). Children and young people's main concerns were labelling and identity; accessibility; privacy and reliability; and trustworthiness of information.Discussion: This review highlights important concerns that children and young people may have before using technology to self-manage their long-term condition. In future, research should involve children and young people throughout the development of technology, from identifying their unmet needs through to design and evaluation of interventions. [ABSTRACT FROM AUTHOR]

Children can sometimes find it difficult to articulate their experiences if they have to rely solely on words. Giving children the opportunity to use arts-based research approaches can support their participation in research and create a bridge that enables them to express their perspectives and feelings. This paper focuses on the ethical and practical considerations when using photo elicitation interviews (PEI) in research with children. The discussion and examples provided are drawn from an international study that used auto-driven PEI, where photographs are taken by children themselves, to explore children’s experiences of living with a chronic condition and the impact condition management may have on their everyday lives. In this paper we critically explore the issues arising from our use of PEI including children’s participation and engagement, balancing power and control, and keeping children safe. The main areas of focus for the paper are how PEI provided a means of shifting control; how setting photographic boundaries influenced our PEI study with children; and how we addressed risks associated with the method. Our experience shows that PEI is an engaging and valuable research method, providing a powerful medium for obtaining rich data with children. However, PEI is challenging and it requires researchers to conscientiously address ethical and practical aspects that extend beyond those inherent to standard (words-alone) interviews. [ABSTRACT FROM PUBLISHER]

Changing physical activity and dietary behavior in chronic disease patients is associated with significant health benefits but is difficult to achieve. An often-used strategy is for the physician or other health professional to encourage behavior changes by providing advice on the health consequences of such behaviors. However, adherence to advice on health behavior change varies across individuals. This paper uses data from a population-based cross-sectional survey of 1849 individuals with chronic disease to explore whether differences in individuals' time and risk preferences can help explain differences in adherence. Health behaviors are viewed as investments in health capital within the Grossman model. Physician advice plays a role in the model in that it improves the understanding of the future health consequences of investments. It can be hypothesized that the effect of advice on health behavior will depend on an individuals' time and risk preference. Within the survey, which measured a variety of health-related behaviors and outcomes, including receipt and compliance with advice on dietary and physical activity changes, time preferences were measured using financial planning horizon, and risk preferences were measured through a commonly used question which asked respondents to indicate their willingness to take risks on a ten-point scale. Results suggest that time preferences play a role in adherence to physical activity advice. While time preferences also play a role in adherence to dietary advice, this effect is only apparent for males. Risk preferences do not seem to be associated with adherence. The results suggest that increasing the salience of more immediate benefits of health behavior change may improve adherence. [ABSTRACT FROM AUTHOR]

Purpose While interpretative phenomenological analysis (IPA) has been used in health psychology research, it has so far not been applied to seek deeper insights into the patients' experiences about treatment. The purpose of this paper is to address this gap by using IPA to understand patient non-adherence. Design/methodology/approach In total, 18 patients with chronic conditions seeking healthcare services in Goa and Karnataka, India, were selected by using the snowball sampling method. In-depth interviews were conducted face to face. A semi-structured questionnaire developed by the researchers was used to collect the data. IPA was used to explore the themes to predict patient non-adherence. Findings The study results indicate that economic factors, health system related factors, social factors and psychological factors impact patient non-adherence. Patient non-adherence includes medication non-adherence and lifestyle modification non-adherence. Research limitations/implications Being cross sectional in design, the results may not be as appropriate as the results derived from a longitudinal study given that non-adherence occurs over time. Practical implications Patient non-adherence is a global health issue. Multidisciplinary approach to enhance patient adherence to treatment should form part of public healthcare policy. Social implications Exploring the factors influencing patient non-adherence will help the health-care industry stakeholders to reduce healthcare cost and improve patient's quality of life. Originality/value Although there is extensive quantitative research on the prevalence of non-adherence, qualitative research is limited. This paper addresses this gap by using IPA to understand patient non-adherence and its factors and dimensions. [ABSTRACT FROM AUTHOR]

This paper draws from two years of fieldwork investigating the social course of illness among Pakistani Muslims in East London, exploring how chronic illness is communicated and negotiated in local worlds disrupted by migrancy. It examines episodic short stories about dreams, premonitions and uncanny coincidences that were prominent within the illness narratives of migrant Pakistani Muslims, recalling and throwing light on complex questions concerning subjective constructions of misfortune, the personal and social meanings of illness and the relationships between narrative and selfhood. The ethnography identifies a strong normative context of communication about ill health and bad news, within which revelation through the mode of the supernatural takes on added significance. Recurrent motifs in the dreams emphasize the connectedness between family members scattered across migratory contexts, and the reawakening of moral obligations in families. Whilst medical anthropology has understood descriptions of dreams and other uncanny experiences as 'subjunctivising tactics' serving to maintain alternative plots about the source and outcome of illness, in the Islamic context the narrating of supernatural encounters can have transformative effects, re-organising praxis and conferring legitimacy to certain forms of moral selfhood. The paper therefore argues that the notion of the 'subjunctive mode' imposes the analysts' own system of logic and that there is a need to understand the interpretive frameworks present in the illness narratives in their own terms. [ABSTRACT FROM AUTHOR]

This paper discusses the psychosocial impact of being diagnosed with hepatitis C virus (HCV). The paper clarifies some of the key misconceptions about the virus, especially the impact HCV has on people who have been recently diagnosed. An individual's reaction to the HCV diagnosis and the subsequent lifestyle challenges to maintain health, well-being, family, and social networks are discussed, particularly the issues surrounding mental health in respect to a recent chronic illness diagnosis and how to manage the trajectory of the illness in the community and individually. HCV disclosure and its effect on intimacy are also detailed. For people living with both a diagnosed mental illness and HCV, managing the illness can be complicated. Not only are these individuals concerned about their mental illness, its treatment, and the social stigma and discrimination associated with it, they also may be alarmed over their future physical health. The paper is preliminary to research using the psychotherapeutic approach of Cognitive Behavioural Therapy (CBT) in groups of persons with a dual diagnosis of mental illness and HCV. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic has presented unique circumstances that have the potential to both positively and negatively affect pediatric adherence and self-management in youth with chronic medical conditions. The following paper discusses how these circumstances (e.g., stay-at-home orders, school closures, changes in pediatric healthcare delivery) impact disease management at the individual, family, community, and healthcare system levels. We also discuss how barriers to pediatric adherence and self-management exacerbated by the pandemic may disproportionately affect underserved and vulnerable populations, potentially resulting in greater health disparities. Given the potential for widespread challenges to pediatric disease management during the pandemic, ongoing monitoring and promotion of adherence and self-management is critical. Technology offers several opportunities for this via telemedicine, electronic monitoring, and mobile apps. Moreover, pediatric psychologists are uniquely equipped to develop and implement adherence-promotion efforts to support youth and their families in achieving and sustaining optimal disease management as the current public health situation continues to evolve. Research efforts addressing the short- and long-term impact of the pandemic on pediatric adherence and self-management are needed to identify both risk and resilience factors affecting disease management and subsequent health outcomes during this unprecedented time. [ABSTRACT FROM AUTHOR]

This paper examines the relationship between hopelessness on chronic disease in a national sample of African Americans (3570) and Caribbean Blacks (1438) Using the National Survey of American Life. A multivariate negative binomial regression examined whether chronic disease is associated with hopelessness, controlling for sociodemographic characteristics. Overall, 13.14% of the sample reported they were highly hopeless, and 31.5% indicated they were moderately hopeless. About 19% of respondents experienced chronic disease. Bivariate associations showed that those who have ever had chronic disease significantly differed from those who did not in regard to age, gender and spirituality. Multivariate results showed that respondents who ever have had chronic disease reported significantly higher hopelessness scores than those with no chronic disease. The study findings contribute to the current body of literature by supporting findings from smaller studies on the relationship between depression and hopelessness in African Americans and Caribbean Blacks. [ABSTRACT FROM AUTHOR]

Chronic conditions are an increasing problem in Low- and Middle-Income Countries (LMICs) yet, the challenges faced by low-income populations with these conditions in such countries are not well understood. Based on in-depth interviews with people affected by chronic conditions and their family members, this paper describes the experience of patients suffering from diabetes or hypertension in rural communities of Mozambique, Nepal, and Peru. We analysed our data using the concepts of disruption and adaptive strategies, finding that despite being very different countries, the implications in daily lives, interpersonal relationships, and family dynamics are similar, and that oftentimes such impact is defined along gender lines. We show that adjustments to living with a chronic disease are not always easy, particularly when they imply changes and reconfiguration of roles and responsibilities for which neither the individual nor their families are prepared. The study adds to the literature on the disruptive effects of chronic conditions and stresses the importance of contextualising disruptive experiences among disadvantaged populations within weak health systems. Our findings highlight the relevance of understanding the challenges of developing adaptive solutions to chronic care in resource-scarce contexts. [ABSTRACT FROM AUTHOR]

Background: Chronic medical conditions (CMCs) affect up to 35% of children and adolescents. Youth with chronic medical conditions are at an increased risk of psychological distress and reduced health-related quality of life, and report rates of mental illness up to double that of their physically healthy peers. Accessible, evidence-based interventions for young people with chronic illness are urgently required to improve their mental health and daily functioning. Self-compassion involves taking a mindful, accepting approach to difficult experiences, being aware that one is not alone in one's suffering, and being kind and understanding with oneself during challenging times. Self-compassion shares strong associations with mental health outcomes among young people and preliminary work indicates that interventions that build self-compassion have the potential to substantially improve youth mental health. Self-compassion is also associated with better physical and mental health outcomes among individuals living with CMCs. While face-to-face self-compassion training is available, there are several barriers to access for youth with CMCs. Online self-compassion training potentially offers an accessible alternative for this high-risk group.Methods: Self-Compassion Online (SCO) is a self-compassion program that has been tested with a non-clinical adult group. For the proposed trial, a reference group of youth (16-25 years) with chronic illness reviewed the program and proposed adaptations to improve its suitability for youth with chronic illness. In alignment with the SPIRIT Checklist, this paper outlines the protocol for a CONSORT-compliant, single-blind randomised controlled trial to test the efficacy of the adapted program, relative to a waitlist control, for improving self-compassion, wellbeing, distress, emotion regulation, coping and quality of life among young Australians with CMCs. Mechanisms of action and feasibility of SCO will be analysed using quantitative data and participant interviews, respectively. Finally, cost-utility will be analysed using health-related quality of life data.Discussion: The SCO program could provide a scalable solution for improving psychological outcomes and quality of life among youth with chronic illness. The proposed trial will be the first to determine its efficacy for improving these outcomes, relative to waitlist control.Trial Registration: The trial was registered on the Australian New Zealand Clinical Trials Registry on the 11th April 2019, ACTRN12619000572167. Protocol version: Version 2, 21 December 2019. [ABSTRACT FROM AUTHOR]

Most health behaviour intervention efforts are adapted from the typical psychological treatment experience and may not take into serious consideration theories specifically developed to describe the process of adaptation to illness. This paper presents a proposal for the combination of a theory about the experience of and adaptation to illness, that is, the Common Sense Model of Self-Regulation (CSM), and an efficient psychological theory and therapy, Acceptance and Commitment Therapy (ACT). Past combinations of CSM with cognitive or cognitive-behavioural interventions have focussed almost only on specific aspects of this model (mostly, illness representations and action plans) and left out other, equally important for a fruitful adaptation to illness, recommendations of the model (e.g., regarding the system coherence). Therefore, the development of the proposed combination is to try to match a broad array of the CSM aspects with the principles, intervention techniques and methods employed by ACT, in order to produce a 'double-pillared' intervention strategy that may prove especially effective for promoting patients' adaptation to a chronic condition and enhancing their well-being and health. [ABSTRACT FROM AUTHOR]

Purpose: Different health state utility (HSU) instruments produce different utilities for the same individuals, thereby compromising the intended comparability of economic evaluations of health care interventions. When developing crosswalks, previous studies have indicated nonlinear relationships. This paper inquires into the degree of nonlinearity across the four most widely used HSU-instruments and proposes exchange rates that differ depending on the severity levels of the health state utility scale.Methods: Overall, 7933 respondents from six countries, 1760 in a non-diagnosed healthy group and 6173 in seven disease groups, reported their health states using four different instruments: EQ-5D-5L, SF-6D, HUI-3 and 15D. Quantile regressions investigate the degree of nonlinear relationships between these instruments. To compare the instruments across different disease severities, we split the health state utility scale into utility intervals with 0.2 successive decrements in utility starting from perfect health at 1.00. Exchange rates (ERs) are calculated as the mean utility difference between two utility intervals on one HSU-instrument divided by the difference in mean utility on another HSU-instrument.Results: Quantile regressions reveal significant nonlinear relationships across all four HSU-instruments. The degrees of nonlinearities differ, with a maximum degree of difference in the coefficients along the health state utility scale of 3.34 when SF-6D is regressed on EQ-5D. At the lower end of the health state utility scale, the exchange rate from SF-6D to EQ-5D is 2.11, whilst at the upper end it is 0.38.Conclusion: Comparisons at different utility levels illustrate the fallacy of using linear functions as crosswalks between HSU-instruments. The existence of nonlinear relationships between different HSU-instruments suggests that level-specific exchange rates should be used when converting a change in utility on the instrument used, onto a corresponding utility change had another instrument been used. Accounting for nonlinearities will increase the validity of the comparison for decision makers when faced with a choice between interventions whose calculations of QALY gains have been based on different HSU-instruments. [ABSTRACT FROM AUTHOR]

Using cross-sectional data from a representative sample of the French population (the 2008 Disability Health survey), this paper examines whether the SF-6D, a widely used preference-based measure of health-related quality of life in economic evaluations, fully captures the variation in subjective well-being (SWB) due to chronic illnesses. We conduct a mediation analysis to disentangle the direct and indirect, through the SF-6D, effects of various chronic conditions on SWB (happiness). Our results show that the SF-6D reflects changes in happiness due to most illnesses except mental illness. Changes in SWB mediated by the SF-6D account for 74% of the total effect. The variation unexplained by the SF-6D is significant and increases substantially in the presence of multimorbidity when a chronic illness is combined with anxiety or depression. Overall, our results suggest that the SF-6D incompletely captures the subjective experience of chronically ill patients, especially those with comorbid conditions. • 74% of the effect of chronic illness on happiness is captured by the SF-6D. • The SF-6D does not fully capture the effect of mental illness on happiness. • The effect not captured by the SF-6D increases significantly with multimorbidity. [ABSTRACT FROM AUTHOR]

Background: Patient Assessment of Care in Chronic Conditions (PACIC+), included in some Australian guidelines, has been shown reliable for measuring patient engagement and perception of their care in primary care settings. Various studies have focussed on PACIC+ use in specific conditions. This study aims to expand PACIC+ to measure patient empowerment to self-manage their chronic condition and validate it in the broader Australian primary care population. This study aims to evaluate internal consistency and reliability of PACIC+ and six new supplementary items proposed to assess patient wellbeing and empowerment to self-manage their chronic condition. Methods: A repeated-measures correlation design study assessed the expanded PACIC+ over three time-points. Particpants were patients with at least one chronic disease, referred by consultant physician, or recruited by advertisement posters in hospital clinic areas. Results: PACIC+ (26-item) had acceptable internal consitency (Cronbach's alpha 0.96). Test–retest reliability (Time-1 and 2, P < 0.01) was acceptable: Total score r (48) = 0.43; and New supplementary items: Confidence r (48) = 0.54; Understanding r (48) = 0.62; Support r (48) = 0.43; Overall Health r (48) = 0.42; Overall Health Change r (48) = −0.31, P = 0.03; and Acute Episodes of Care in 1-month r (48) = 0.42, P < 0.01. Four factors from the original PACIC+ accounted for 66.5% of the variance. Conclusions: The expanded PACIC+ is an improved psychometric tool providing for the patient's voice in a shared health journey. It is a valid, reliable tool to monitor and measure self-management of chronic conditions in Australian population clinic and primary healthcare settings. Six new supplementary patient empowerment and health status measures proved reliable and, in combination with the PACIC+ psychometric tool, could offer a method to monitor and measure the self-management of chronic conditions in the Australian clinic setting and for future research. [ABSTRACT FROM AUTHOR]

Background: In the world of elderly people and people with chronic diseases, caregivers give a solution to caring at home. This study aimed to evaluate the burden of caregivers of patients with chronic diseases in primary health care and identify possible demographic and other determinants of it. Methods: This was a cross-sectional study with a convenience sample, which was conducted in two health centers. The sample comprised 291 caregivers who visited the aforementioned health centers in Patra, Greece. A composite questionnaire was utilized: the first part included demographic data and care-related information and the second included the Zarit Burden Interview and the Depression, Anxiety, and Stress Scale-21 (DASS-21). Results: The highest mean score in the DASS was recorded in the depression subscale and the lowest in the stress subscale. Concerning the Zarit Burden Interview, the highest mean score was recorded in the personal strain subscale and the lowest in the management of care subscale. The highest correlation was recorded between role strain and anxiety and the lowest was between management of care and stress. Similarly, the total score in the Zarit Burden Interview correlated significantly (in a positive direction) with depression, anxiety, and stress. Conclusions: Most of the caregivers of patients with chronic diseases in primary health care experienced a moderate to severe burden (especially in the dimension of personal strain) and moderate depression. The experienced burden was positively associated with depression, anxiety, and stress. There were significant differences in the caregivers' burden according to several demographic and care-related characteristics. [ABSTRACT FROM AUTHOR]

Background: Hope is an important resource that helps patients and families thrive during difficult times. Although several studies have highlighted the importance of hope in different contexts, its specific manifestations in the realm of advanced chronic illness need further exploration. In this study, we sought to elucidate the intricate interplay between the construct of hope and the lived experience of advanced chronic illness within patient-caregiver dyads. Our objectives were (a) to explore the dyadic experience of hope as a changing dynamic over time for patients living with advanced chronic illness and their informal caregivers and (b) to evaluate variations of hope and symptom burden across time. Methods: We conducted a longitudinal mixed-methods study with a convergent design between December 2020 and April 2021. Patients living with advanced chronic illness and informal caregivers participated as a dyad (n = 8). The Herth Hope Index scale was used to measure dyads' level of hope and the Edmonton Symptom Assessment System was used to measure patients' symptom burden. Descriptive statistics were undertaken. A thematic analysis as described by Braun and Clarke was conducted to analyze dyadic interview data. Dyads' experience of hope was described by using the six dimensions of hope in the Model of Hope of Dufault and Martocchio. Results: Dyadic scores of hope and patients' symptom burden were stable over time. The constructs of hope in dyads included "Living one day at the time," "Having inner force/strength," and "Maintaining good health." Changes in patterns of hope were captured for each dyad in their transition over time. Data converged for all dyads except one. Conclusions: The findings of our study show a constant presence of hope even in the face of adversity. Healthcare professionals must find ways to promote hope in dyads of patients living with advanced chronic diseases. Nurses play a pivotal role; dyadic interviews should be promoted to create a safe space for both patients and informal caregivers in order to share experiences. More research is needed to address patients' and informal caregivers' hope in chronic illness because current hope-based interventions primarily target cancer diagnoses. [ABSTRACT FROM AUTHOR]

This paper proposed the concepts of "body me" and "I body". Furthermore, the images of colostomy and fistula are used as examples to show that the body image of chronic illness has both temporal and situational meanings and shares a reciprocal relationship with self-identity (i.e., idem identity and ipse identity). Rather than providing an organic explanation, body image is an interactive relationship among time, situation, body, self, and others, which are all important aspects necessary to understand the individual and the world in which she/he lives. Finally, reflecting on humanistic clinical psychology, the ethical relationship practice of "we-ness" is proposed to shed illustrative light on the body image of chronic illness patients from a new perspective. [ABSTRACT FROM AUTHOR]

Background: Children with chronic medical conditions often experience limited opportunities for social experiences due to frequent hospitalizations and medical appointments. Computer technology can provide valuable opportunities for social inclusion through online communities. However, moderation has been shown to be an important component of safe and successful use. This paper explores the potential of a social media platform technology, Upopolis, to promote social connection and health‐related management for children with chronic medical conditions, as well as the role of the coordinators who support children's use. Methods: This study conducted qualitative in‐depth, semi‐structured telephone interviews with hospital‐based child life specialists across Canada who acted as coordinators for Upopolis. Thematic analysis was employed on verbatim interview transcripts. Results: Seven Upopolis coordinators (n = 7 female) from across Canada participated in six telephone interviews. Four themes were identified: First, Upopolis offered opportunities for connection (social and emotional) through receiving and giving support to others in similar situations. Second, Upopolis was considered safe and reliable for younger children (under 12) within the broader social media landscape. Third, Upopolis was a helpful resource for children to learn about medical diagnoses and procedures, as well as for expressing their experiences and reducing isolation. Fourth, participants identified that time, misuse of technology, and technical problems were challenges to the successful coordination of Upopolis. Conclusions: Children with chronic medical conditions were reported to use Upopolis to develop a greater social community. Specialized websites such as Upopolis have the potential to offer a safe online social networking opportunity where children can discuss what is happening to them, compared with other mainstream social media platforms. Given the increase in technology use in health and high usage of social media among children generally, these data can potentially inform the development and implementation of other specialist health‐related online platforms for children with chronic medical conditions. [ABSTRACT FROM AUTHOR]

Abstract Small area health data are not always available on a consistent and robust routine basis across nations, necessitating the employment of small area estimation methods to generate local-scale data or the use of proxy measures. Geodemographic indicators are widely marketed as a potential proxy for many health indicators. This paper tests the extent to which the inclusion of geodemographic indicators in small area estimation methodology can enhance small area estimates of limiting long-term illness (LLTI). The paper contributes to international debates on small area estimation methodologies in health research and the relevance of geodemographic indicators to the identification of health care needs. We employ a multilevel methodology to estimate small area LLTI prevalence in England, Scotland and Wales. The estimates were created with a standard geographically-based model and with a cross-classified model of individuals nested separately in both spatial groupings and non-spatial geodemographic clusters. LLTI prevalence was estimated as a function of age, sex and deprivation. Estimates from the cross-classified model additionally incorporated residuals relating to the geodemographic classification. Both sets of estimates were compared against direct estimates from the 2011 Census. Geodemographic clusters remain relevant to understanding LLTI even after controlling for age, sex and deprivation. Incorporating a geodemographic indicator significantly improves concordance between the small area estimates and the Census. Small area estimates are however consistently below the equivalent Census measures, with the LLTI prevalence in urban areas characterised as 'blue collar' and 'struggling families' being markedly lower. We conclude that the inclusion of a geodemographic indicator in small area estimation can improve estimate quality and enhance understanding of health inequalities. We recommend the inclusion of geodemographic indicators in public releases of survey data to facilitate better small area estimation but caution against assumptions that geodemographic indicators can, on their own, provide a proxy measure of health status. Highlights • A novel cross-classified extension to small area estimation methodology. • Small area estimation of health indicators can be enhanced by geodemographic data. • Geodemographics and deprivation independently impact small area health estimates. • Deprived urban communities have much worse health than expected. [ABSTRACT FROM AUTHOR]

The consumer journey has drawn interest from marketers as an avenue to strengthen sales through managing touchpoints. However, a firm-centric view has produced limited models of the journey, particularly on consumers' usage experiences over extended periods in everyday settings. We attempt to redress this limitation by studying the situated experiences of disadvantaged consumers endeavoring to comply with medication therapies for chronic hypertension. Our broad aim is to understand more fully the influences on and nature of the journey. We find that compliance is a liminal state of provisional actions shaped contextually by life spheres of meso-structural conditions, micro-individual factors, and interpretive sense-making practices. We contribute a novel, integrated, and nuanced journey framework beyond the detached, steadily progressive model predominant in the literature. Our paper ends with practice, theory, and policy implications for marketing and healthcare, including touchpoint strategies. [ABSTRACT FROM AUTHOR]

This paper presents an analytical framework for examining the relationships between organizational stress and coronary heart disease (CHD). The model presented integrates behavioral and medical science perspectives of the etiology of CHD. Propositions emerging from the model and the reviewed literature are presented and managerial implications are discussed. [ABSTRACT FROM AUTHOR]

Abstract: Coping with chronic illness encapsulates both practical and emotional aspects of living life in relation to one's long‐term health condition(s). Dominant health psychology approaches for understanding coping, which underpin a more recent policy discourse on ‘self‐management’, focus sharply on the person affected by illness and potentially mask the influence of overarching social structure. In this paper we draw on qualitative interviews with 48 people living with long‐term conditions (LTCs), in order to highlight the role that structural configurations such as healthcare systems may play in either helping or hindering people's efforts to cope with chronic illness. We argue that coping is a social process in which health and related services, situated within their wider political‐economic contexts, play an active role in shaping people's attempts to live well with LTCs. More specifically, health systems are sites of social and cultural capital exchange that can differentially mobilise coping resources through access, continuity of care, and coordination across services. Whilst it is essential to recognise the personal agency of people living with chronic illness, it is also vital to acknowledge the underlying inequalities that affect the ways in which services can support such resourcefulness. [ABSTRACT FROM AUTHOR]

Aim: To examine the effects of spousal support and parent–nurse partnership on caregiver burden of parents of children with chronic disease. Background: With the trend of increasing the global number of children with chronic diseases, the parental caregiver burden has become increasingly prevalent. Design: Cross‐sectional study. Methods: The study participants included 115 parents of children diagnosed with chronic disease at a general hospital in South Korea. The study duration was 4 June 2021–30 April 2022. Self‐reported measures included the parent–nurse partnership scale, the Korean version of the Parenting Alliance Inventory and the family caregiver burden scale. T‐tests, ANOVA, Pearson's correlation coefficients and hierarchical linear multiple regression were conducted using IBM SPSS version 26.0. This study followed STROBE guideline. Results: Parental caregiver burden was significantly negatively associated with spousal support and parent–nurse partnership. Factors significantly influencing caregiver burden were parental alcohol consumption; child's inherited metabolic disease, cardiovascular disease, disease relating to haematological tumours or kidney disease diagnosis; child's health perceived as poor by parents; child's dependency perceived as high by parents; hospitalization recency; and low spousal support. These factors accounted for 65% of caregiver burden. Conclusion: Parental caregiver burden was related to spousal support and parent–nurse partnership, but the primary factor affecting caregiver burden was spousal support. Relevance to clinical practice: The results highlighted the role of healthcare professionals in educating parents of children with chronic diseases to facilitate spousal support and have implications for nursing and community‐based interventions to reduce parental caregiver burden. Furthermore, they underlined that policymakers and other stakeholders should pay attention to the parental caregiver burden through government‐based, family‐centered strategies. Patient or public contribution: Parents of children with chronic disease were recruited to perform the self‐administered survey in the phase of data collection. [ABSTRACT FROM AUTHOR]

Objectives: The purpose of this study was to explore the expectations of and experiences with the public healthcare system of domestic partners of people with Parkinson's disease (PD) in Denmark and Norway. Methods: A qualitative exploratory design was applied. The sample consisted of 14 people from Denmark (n = 9) and Norway (n = 5) living with a partner with PD. Semi-structured individual interviews were conducted between June and September 2020, digitally recorded, transcribed verbatim and analysed using a reflexive thematic analysis approach combining inductive and deductive approaches. Results: The main themes were 'negotiating systems of support' and 'balancing being both a partner and a family carer'. Partners take responsibility for the people with whom they live and attempt to fill gaps in the public healthcare system. The most frequently described needs were more information, service coordination as the illness progressed and acknowledgement of the complex role. Discussion: A recommendation for practice is recognition of the complex roles of partners to people with PD and reaching out to both regularly to determine needs. This may enhance the collaboration between partner carers, people with PD and healthcare providers, ensure sustainability of the system and optimise living with PD in the family. [ABSTRACT FROM AUTHOR]

The term ‘chronicity’ is still widely used in psychiatric discourse and practice. A category employed in political, administrative and therapeutic contexts, it guides practitioners’ beliefs and actions. This paper attempts a review of the attitudes and procedures that result as a consequence of identifying ‘chronically’ disturbed identities in clinical practice. An essentially social, relational and materialist understanding of mental illness is used to highlight the kind of thinking underlying the notion of ‘chronic’ identities in day-to-day psychiatric routines. Problematising the notions of singularity and expressiveness, as well as mind/body- and self/other-distinctions, it claims the category itself is responsible for creating a ‘chronic’ kind of being. A spatial metaphor is presented in the conclusion, illustrating a mental strategy by which we can re-shape our thinking about ‘chronic’ identities. It attempts to describe how the shift from an epistemological to a praxeographic approach could build a more complete understanding of mental illness. [ABSTRACT FROM PUBLISHER]

Scand J Caring Sci; 2011; 25; 828-833 Cross-cultural Validation of the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™) generic core scale into Arabic Language Background: A range of scales is available to measure health-related quality of life. Recently, established quality of life scales have been translated for use in a wide range of Western and non-Western cultures. One of the most widely used health-related quality of life scales for use with children is the PedsQL™ 4.0. In this paper, we describe the process of translating this scale into Arabic and establishing its reliability and validity. Aim: This paper has three aims: first, to explain the process of translating the PedsQL™ (4.0) self- and proxy-reports for the ages 8-12 and 13-18, from English into Arabic; second, to assess the reliability of the new Arabic version of the scale and third, to assess its validity. Method: The scale was translated from English to Arabic and back-translated to ensure accuracy. The Arabic version was administered to healthy children and those with cancer and a range of chronic illnesses in Jordan. Statistical methods were used to test the psychometric properties (reliability and validity) of the Arabic version of the PedsQL™ (4.0) and its ability to discriminate between children in the above groups. Results: Cronbach's alpha coefficients for child self- and parent proxy-reports exceeded 0.7 for the total scores, health summary scores and psychological health summary scores. Testing for discriminant validity showed that the healthy (control) group had a higher health-related quality of life than children and young people with cancer and chronic illness. The children with chronic illnesses had the lowest scores for physical, emotional and school functioning. Conclusion: Initial testing of the Arabic version of the PedsQL™ (4.0) suggests that the scale has satisfactory psychometric properties. [ABSTRACT FROM AUTHOR]

This paper reviews the medical (salutogenic) effect of interventions that aim to improve quality of life. Review of studies where the global quality of life in chronically ill patients was improved independently of subjective and objective factors (like physical and mental health, yearly income, education, social network, self-esteem, sexual ability and problems or work). The methods used were subtypes of integrative medicine (non-drug CAM) like mind body medicine, body psychotherapy, clinical holistic medicine, consciousness-based medicine and sexology. In about 20 papers on QOL as medicine, in cancer, coronary heart disease, chronic pain, mental illness, sexual dysfunction, low self-esteem, low working ability and poor QOL, the most successful intervention strategy seems to be to create a maternal, infantile bonding induced by a combination of conversation therapy and bodywork. The papers examined the treatments of over 2,000 chronically ill or dysfunctional patients and more than 20 different types of health problems . Global QOL measured by SEQOL, QOL5, QOL1, self-rated physical health, self-rated mental health, self-rated sexual functioning, anorgasmia, genital pain, self-rated working ability, self-rated relation to self, well-being, life-satisfaction, happiness, fulfillment of needs, experience of temporal and spatial domains, expression of life's potentials, and objective functioning. We found 'QOL as medicine' able in the treatment of physical disorders and illnesses including chronic pain (Number Needed to Treat (NNT) = 1-3, Number Needed to Harm (NNH) > 500), in mental illness (NNT = 1-3, NNH > 500), in sexual dysfunctions (NNT = 1-2, NNH > 1,000), self-rated low working ability (NNT = 2, NNH > 500), and self-rated low QOL (NNT = 2, NNH > 2,000). We found that QOL improving interventions helped or cured 30-90% of the patients, typically within one year, independent of the type of health problem. 'QOL as medicine' seems to be able in improving chronic mental, somatic and sexual health issues without side effects. [ABSTRACT FROM AUTHOR]

This paper looks at marginalization in two realms: chronic illness and qualitative research. It conceptualizes marginalization through examining stories about experiencing chronic illness. Marginalization means boundaries or barriers, distance or separation, and division or difference. Marginalization assumes a core of enacted rules and measures that frame the social lives and subjective realities of those who do not fit. Being marginalized causes suffering but can transform stigmatized people and qualitative researchers. Qualitative psychologists can embrace the freedom marginalization allows and construct a separate community that ultimately moves inquiry away from established margins. The paper ends with ideas for increasing the transformative power of qualitative research. [ABSTRACT FROM AUTHOR]

The article discusses the importance of managing chronic health conditions and highlights the impact of mental and physical health on patients' quality of life. Topics include resilience, sense of coherence, and health literacy, as explored in papers examining depression prevalence, the mediating effects of sense of coherence on quality of life, and the positive effects of health literacy education programs on depression and renal function.

Background: Communities of practice are based on the idea that learning involves a group of people exchanging experiences and knowledge. The e-MPODERA project aims to assess the effectiveness of a virtual community of practice aimed at improving primary healthcare professional attitudes to the empowerment of patients with chronic diseases.Methods: This paper describes the protocol for a cluster randomized controlled trial. We will randomly assign 18 primary-care practices per participating region of Spain (Catalonia, Madrid and Canary Islands) to a virtual community of practice or to usual training. The primary-care practice will be the randomization unit and the primary healthcare professional will be the unit of analysis. We will need a sample of 270 primary healthcare professionals (general practitioners and nurses) and 1382 patients. We will perform randomization after professionals and patients are selected. We will ask the intervention group to participate for 12 months in a virtual community of practice based on a web 2.0 platform. We will measure the primary outcome using the Patient-Provider Orientation Scale questionnaire administered at baseline and after 12 months. Secondary outcomes will be the sociodemographic characteristics of health professionals, sociodemographic and clinical characteristics of patients, the Patient Activation Measure questionnaire for patient activation and outcomes regarding use of the virtual community of practice. We will calculate a linear mixed-effects regression to estimate the effect of participating in the virtual community of practice.Discussion: This cluster randomized controlled trial will show whether a virtual intervention for primary healthcare professionals improves attitudes to the empowerment of patients with chronic diseases.Trial Registration: ClicalTrials.gov, NCT02757781 . Registered on 25 April 2016. Protocol Version. PI15.01 22 January 2016. [ABSTRACT FROM AUTHOR]

The psychiatric, psychosocial, and existential/spiritual pain determined by chronic medical disorders, especially if in advanced stages, have been repeatedly underlined. The right to approach patients as persons, rather than symptoms of organs to be repaired, has also been reported, from Paul Tournier to Karl Jaspers, in opposition and contrast with the technically-enhanced evidence-based domain of sciences that have reduced the patients to 'objects' and weakened the physician's identity deprived of its ethical value of meeting, listening, and treating subjects. The paper will discuss the main psychosocial and existential burden related to chronic and advanced medical illnesses, and the diagnostic and therapeutic implications for a dignity preserving care within a person-centred approach in medicine, examined in terms of care of the person (of the person's whole health), for the person (for the fulfilment of the person's health aspirations), by the person (with physicians extending themselves as total human beings), and with the person (working respectfully with the medically ill person). [ABSTRACT FROM AUTHOR]