Views from the Inside, Part 1: Routes to Diagnosis — Families' Experience of Living with a Child with Arthritis

2002 ◽  
Vol 65 (8) ◽  
pp. 374-380 ◽  
Author(s):  
Carrie Britton ◽  
Ann Moore

This is the first of a trilogy of articles that presents the experiences and perspectives of 46 families about what it is like to live with and care for a child with juvenile idiopathic arthritis (JIA). An independent professional recruited the children from a random sample of families who attended consecutive outpatient appointments at the juvenile arthritis clinic and who fulfilled the inclusion criteria. Qualitative and quantitative data from self-completion questionnaires, transcripts from semi-structured interviews with family members in their homes, family-filmed video diaries, and diaries written by siblings and children with arthritis were analysed. These different types of data were gathered over 18 months in order to collect information about the fluctuating nature of this disease and the impact of this changeability on family members. Part 1 concentrates on a brief presentation of relevant literature, presents a simplified map of the findings and introduces the families' early experiences of seeking and coping with the diagnosis of JIA. The article explores the myth that arthritis only affects elderly and infirm people, explains the mirage effect and discusses the significance of different routes to diagnosis. The majority of the families felt that these early events had a significant, sometimes considerable, impact upon how they coped later, including how they related subsequently to health care professionals and engaged with continuing prescribed health care programmes. The findings report the families' experiences as recipients of health care by many different professionals and relate to their recollection and interpretation of events. Research into the professionals' perspectives would be illuminating but did not fall within the scope of the present study. The experiences of families of children with arthritis are shared by families of children with other chronic conditions and by other carers and service users.

2018 ◽  
Author(s):  
Zuhal Kathy Keeling

BACKGROUND mHealth is a broad term for the use of mobile communication devices for healthcare services delivery. The use of mobile devices by health care professionals (HCPs) has transformed many aspects of clinical training and practice. However, there are still gaps in knowledge concerning patient perception of the use of mHealth technologies by HCP during secondary care consultations. OBJECTIVE To explore the impact on patient experience and implications for consultation outcomes and treatment adherence. Introduction of new technological application into interactions that have very set expectations and roles and possibility for attendant disruption of patient expectations. METHODS This paper explores, via in-depth interviews, patient opinions regarding the usage of mHealth applications by health care professionals (HCPs) during consultations, identifying the paradoxes and coping behaviors to deal with those paradoxes. This qualitative study recruited ten respondents using purposive sampling and snowballing techniques through in-depth interviews. RESULTS The results comprise paradoxes and coping behaviors. They showed that convenience, time savings, accuracy of diagnosis and reduction of errors are the important elements for using mHealth for both HCP and patient. In addition, respondents perceived that mobile health apps facilitate HCP engagement of patients and assist explanations and better patient understanding. Interaction and the quality of the interaction were acknowledged as significant in HCP-patient communication and patient compliance with treatment. CONCLUSIONS To sum, many patients were responsive to the idea of mHealth, both by the doctor and themselves, but wanted to have regulation of use of apps, better involvement and explanations and not have the doctor lose focus on the patient, that is, the feeling of personalized treatment. They also were worried that the HCP might seem to ignore the patient or withdraw from the type of interaction that makes the consultation ‘human.’


2021 ◽  
pp. 104973232199204
Author(s):  
Hester Hockin-Boyers ◽  
Megan Warin

The appropriate form, regularity, and intensity of exercise for individuals recovering from eating disorders is not agreed upon among health care professionals or researchers. When exercise is permitted, it is that which is mindful, embodied, and non-competitive that is considered normative. Using Canguilhem’s concepts of “the normal and the pathological” as a theoretical frame, we examine the gendered assumptions that shape medical understandings of “healthy” and “dysfunctional” exercise in the context of recovery. The data set for this article comes from longitudinal semi-structured interviews with 19 women in the United Kingdom who engaged in weightlifting during their eating disorder recovery. We argue that women in recovery navigate multiple and conflicting value systems regarding exercise. Faced with aspects of exercise that are pathologized within the eating disorder literature (such as structure/routine, body transformations, and affect regulation), women re-inscribe positive value to these experiences, thus establishing exercise practices that serve them.


2021 ◽  
Vol 2 (1) ◽  
Author(s):  
Agnes T. Black ◽  
Marla Steinberg ◽  
Amanda E. Chisholm ◽  
Kristi Coldwell ◽  
Alison M. Hoens ◽  
...  

Abstract Background The KT Challenge program supports health care professionals to effectively implement evidence-based practices. Unlike other knowledge translation (KT) programs, this program is grounded in capacity building, focuses on health care professionals (HCPs), and uses a multi-component intervention. This study presents the evaluation of the KT Challenge program to assess the impact on uptake, KT capacity, and practice change. Methods The evaluation used a mixed-methods retrospective pre-post design involving surveys and review of documents such as teams’ final reports. Online surveys collecting both quantitative and qualitative data were deployed at four time points (after both workshops, 6 months into implementation, and at the end of the 2-year funded projects) to measure KT capacity (knowledge, skills, and confidence) and impact on practice change. Qualitative data was analyzed using a general inductive approach and quantitative data was analyzed using non-parametric statistics. Results Participants reported statistically significant increases in knowledge and confidence across both workshops, at the 6-month mark of their projects, and at the end of their projects. In addition, at the 6-month check-in, practitioners reported statistically significant improvements in their ability to implement practice changes. In the first cohort of the program, of the teams who were able to complete their projects, half were able to show demonstrable practice changes. Conclusions The KT Challenge was successful in improving the capacity of HCPs to implement evidence-based practice changes and has begun to show demonstrable improvements in a number of practice areas. The program is relevant to a variety of HCPs working in diverse practice settings and is relatively inexpensive to implement. Like all practice improvement programs in health care settings, a number of challenges emerged stemming from the high turnover of staff and the limited capacity of some practitioners to take on anything beyond direct patient care. Efforts to address these challenges have been added to subsequent cohorts of the program and ongoing evaluation will examine if they are successful. The KT Challenge program has continued to garner great interest among practitioners, even in the midst of dealing with the COVID-19 pandemic, and shows promise for organizations looking for better ways to mobilize knowledge to improve patient care and empower staff. This study contributes to the implementation science literature by providing a description and evaluation of a new model for embedding KT practice skills in health care settings.


2016 ◽  
Vol 27 (7) ◽  
pp. 994-1005 ◽  
Author(s):  
Dolores Angela Castelli Dransart

The objective of this study is to identify patterns (components and processes) of reconstruction of suicide survivors. In-depth interviews were conducted with 50 survivors of suicide in Switzerland. Data were analyzed using ATLAS.ti and according to the Grounded Theory principles. Survivors of suicide face four major challenges: dealing with the impact of suicide, searching for meaning, clarifying responsibility, and finding a personal style of reaction and coping. The various ways in which survivors fare through the specific processes of the challenges result in various patterns of reconstruction: the vulnerability, transformation, commitment, and hard blow. The unique characteristics and dynamics of each of them are highlighted. Health care providers would benefit from an approach based on the dynamics of the various patterns of reconstruction in providing appropriate support to survivors of suicide.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Kathrine Håland Jeppesen ◽  
Kirsten Frederiksen ◽  
Marianne Johansson Joergensen ◽  
Kirsten Beedholm

Abstract Background From 2014 to 17, a large-scale project, ‘The User-involving Hospital’, was implemented at a Danish university hospital. Research highlights leadership as crucial for the outcome of change processes in general and for implementation processes in particular. According to the theory on organizational learning by Agyris and Schön, successful change requires organizational learning. Argyris and Schön consider that the assumptions of involved participants play an important role in organizational learning and processes. The purpose was to explore leaders’ assumptions concerning implementation of patient involvement methods in a hospital setting. Methods Qualitative explorative interview study with the six top leaders in the implementation project. The semi-structured interviews were conducted and analyzed in accordance with Kvale and Brinkmanns’ seven stages of interview research. Result The main leadership assumptions on what is needed in the implementation process are in line with the perceived elements in organizational learning according to the theory of Argyris and Schön. Hence, they argued that implementation of patient involvement requires a culture change among health care professionals. Two aspects on how to obtain success in the implementation process were identified based on leadership assumptions: “The health care professionals’ roles in the implementation process” and “The leaders’ own roles in the implementation process”. Conclusion The top leaders considered implementation of patient involvement a change process that necessitates a change in culture with health care professionals as crucial actors. Furthermore, the top leaders considered themselves important facilitators of this implementation process.


2007 ◽  
Vol 13 (3) ◽  
pp. 29 ◽  
Author(s):  
Emily Mauldon

This paper reports on the attitudes of a sample of health care providers towards the use of telehealth to support rural patients and integrate rural primary health and urban hospital care. Telehealth and other information technologies hold the promise of improving the quality of care for people in rural and remote areas and for supporting rural primary health care providers. While seemingly beneficial for rural patients, study participants believed that telehealth remains underused and poorly integrated into their practice. In general, participants thought that telehealth is potentially beneficial but places constraints on their activities, and few actually used it. Published literature usually reports either on the success of telehealth pilot projects or initiatives that are well resourced and do not reflect the constraints of routine practice, or has an international focus limiting its relevance to the Australian context. Because of the paucity of systematic and generalisable research into the effects of the routine use of telehealth to support rural patients, it is unclear why health care professionals choose to provide such services or the costs and benefits they incur in doing so. Research and policy initiatives continue to be needed to identify the impact of telehealth within the context of Australian primary health care and to develop strategies to support its use.


2014 ◽  
Vol 34 (1) ◽  
pp. 37-46 ◽  
Author(s):  
Michael Connolly ◽  
Joanne M. Thomas ◽  
Julie A. Orford ◽  
Nicola Schofield ◽  
Sigrid Whiteside ◽  
...  

2021 ◽  
pp. 136749352110399
Author(s):  
Stephanie Allen ◽  
Stephen K Bradley ◽  
Eileen Savage

Parent programmes are often used in the clinical management of children with ADHD. Research into parent programmes has predominantly been concerned with their effectiveness and much less attention has been paid to the impact that they may be having on the family and the inter-relationships between family members. This study explores the perspectives and experiences of parents of children with ADHD, who participated in a parent programme, including its impact on the family unit. A purposive sample of six mothers of children with ADHD who completed a 1-2-3 Magic parent programme in Ireland was invited to take part in this qualitative study. Data were collected by means of individual in-depth, semi-structured interviews and a narrative inquiry approach further informed analysis of the interview data. Two major narrative constructions of experience: ‘parent programme as positive’ and ‘parent programme as negative’ were identified. Outcomes from this study illustrated some unintended consequences caused by the parent programme (i.e. sibling rivalry and conflict arising between family members). Mothers believed that the parent programme was a beneficial intervention, but it was not without its flaws and they felt it was helpful for their family when used in conjunction with other supports and mediations.


2021 ◽  
Vol 30 (1) ◽  
pp. 181-203
Author(s):  
Tal Braverman-Uriel ◽  
Tal Litvak-Hirsch

The impact of sexuality on mental wellbeing in women in long-term relationships has only been partially investigated. Emphasis has been on quantitative research studies that do not capture the breadth of the field. The present study looked at how and to what extent women maintain sexual desire in long-term relationships, and how sexuality affects their mental wellbeing. The study used a qualitative narrative approach and included semi-structured interviews with approximately 20 Israeli women aged 40–55 from similar socioeconomic backgrounds and in longstanding, permanent relationships. The findings indicate significant development over the years in the perception of the role of sexuality and its impact on mental wellbeing. The path to good sexuality can and should follow women’s leadership and initiative. Such women have the desire to make an impact, willingness to make an effort, and even an actual ability to exert influence. The interviewees’ tools, strategies, insights and ways of coping can serve as models for other women seeking better sexuality in a long-term relationship.


2020 ◽  
Author(s):  
J Wailling ◽  
Brian Robinson ◽  
M Coombs

© 2018 John Wiley & Sons Ltd Aim: This study explored how doctors, nurses and managers working in a New Zealand tertiary hospital understand patient safety. Background: Despite health care systems implementing proven safety strategies from high reliability organisations, such as aviation and nuclear power, these have not been uniformly adopted by health care professionals with concerns raised about clinician engagement. Design: Instrumental, embedded case study design using qualitative methods. Methods: The study used purposeful sampling, and data was collected using focus groups and semi-structured interviews with doctors (n = 31); registered nurses (n = 19); and senior organisational managers (n = 3) in a New Zealand tertiary hospital. Results: Safety was described as a core organisational value. Clinicians appreciated proactive safety approaches characterized by anticipation and vigilance, where they expertly recognized and adapted to safety risks. Managers trusted evidence-based safety rules and approaches that recorded, categorized and measured safety. Conclusion and Implications for Nursing Management: It is important that nurse managers hold a more refined understanding about safety. Organisations are more likely to support safe patient care if cultural complexity is accounted for. Recognizing how different occupational groups perceive and respond to safety, rather than attempting to reinforce a uniform set of safety actions and responsibilities, is likely to bring together a shared understanding of safety, build trust and nurture safety culture.


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