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PubMedDate not supplied

Managing usual and unexpected pain with physical disability: a qualitative analysis.

OBJECTIVE: With physical disabilities, persons often experience secondary pain that adds to restrictions in activity and participation. We investigated pain-management strategies used by those with physical disabilities. METHOD: Qualitative phenomenological inquiry was used in multiple interviews with (N= 28) adults with physical disabilities (9 with amputation, 7 with cerebral palsy, and 12 with spinal cord injury) and subsequent thematic analysis. RESULTS: Among those with physical disabilities, a distinction is made between usual and unexpected pains. Usual pain is experienced consistently or as a consequence of not getting adequate rest, exercise, or stress-free time. Managing usual pain involves uses of prevention (e.g., exercise/fitness) and/or pragmatic actions through scheduling and pacing daily activities and taking interim retreats. Unexpected pain is experienced periodically and requires an immediate response and change of activity. To manage, persons describe making efforts to create a mind and body disassociation, activating safety nets to support function and alleviate pain, and making decisions to persevere with activity and participation. CONCLUSION: Advising those with physical disabilities to do proactive planning for both usual and unexpected pain may help them to use varied pain-management strategies to enhance function and minimize negative impacts on participation.

Activities of Daily Living↗
PubMed2026

What do we know about medical invalidation and related concepts? - A scoping review and thematic analysis about the definitions, measurements, causes, consequences and potential solutions for medical invalidation.

BACKGROUND: Medical invalidation, medical gaslighting, and related constructs have gained visibility in public discourse but remain inconsistently defined in scientific literature. Despite growing research-often focused on specific diseases- to date, no single review has comprehensively synthesized their definitions, causes, consequences, or methods of measurement. This scoping review addresses this gap by examining medical invalidation and related constructs. METHODS: Using a preregistered protocol, we systematically searched PubMed, CINAHL, Web of Science, Google Scholar, and ProQuest (dissertations) without year restrictions. Eligible sources included peer-reviewed empirical, theoretical, and conceptual work in English addressing invalidation, gaslighting, or closely related notions within healthcare. A total of 158 studies were identified through database searches and citation tracking. Data extraction followed a standardized schema, and findings were synthesized descriptively and through thematic analysis to clarify terminology, map determinants and outcomes, and identify existing measurement approaches. RESULTS: The results showed substantial inconsistency in how "invalidation," "not being taken seriously," and "gaslighting" were defined. Medical invalidation emerged as a multifactorial phenomenon driven by diagnostic challenges, structural and societal factors, provider and patient characteristics, stigma, misattribution, interactional dynamics, academic knowledge gaps, and disease-related complexity. Invalidation was associated with wide-ranging behavioural, emotional, cognitive, physical, relational, and systemic harms, while validation had consistently beneficial effects. Proposed solutions in the summarized studies included communication improvements, clinician training, patient support, targeted research, and structural and systemic changes. DISCUSSIONS: Medical invalidation represents a complex, systemic issue with significant implications for patient safety. The discussion highlights its multifactorial origins, its potential to cause both psychological and physical harm, and the need for clearer conceptualisation within the field. Advancing research requires validated instruments and longitudinal designs to examine underlying mechanisms and consequences. Addressing medical invalidation will demand multi-level interventions to improve communication, reduce structural barriers, and promote equitable, patient-centred care. OSF PREREGISTRATION: https://doi.org/10.17605/OSF.IO/MPE6U.

Humans↗
PubMed2006

A critical policy analysis of an emerging agenda for home care in one Canadian province.

Amidst projections of the increased care demands and expectations for home care, policy in this area demands urgent attention. Home care is inherently complex as it challenges us to deliberate fundamental issues of responsibility for care, and the limits of care for people in their most immediate contexts and needs. This research takes the form of a critical policy analysis of the interaction of the context, process and content of policy proposals in home care in a regional health system in one Canadian province. The method of study includes thematic and comparative analyses of perspectives derived from policy documents, and interviews with policy actors (decision-makers, healthcare providers, public advocates) regarding their perspectives of policy problems and processes. The content and process of policy in home care interact in important ways with political, economic, social and historical contexts. This critical analysis revealed that the emerging policy agenda in regional home care is one of medicalisation, which stands in contrast to the principles of primary health care, and potentially leads to further marginalisation of the most vulnerable. This contrast is characterised by tensions between the fundamental values of equity and efficiency, choice and universality, and public vis-à-vis individual responsibility for the provision of care.

Alberta↗
PubMed2002

A critical ethnographic approach to facilitating cultural shift in midwifery.

OBJECTIVE: to improve understanding of local midwifery morale, inform development and reorganisation of a maternity unit, and enhance midwifery involvement in strategic planning. PARTICIPANTS: a randomised stratified sample of 20 midwives working in a UK National Health Service (NHS) hospital and its surrounding community area. METHOD: within a critical ethnographic framework, focus groups were tape-recorded and transcribed, and analysed using a thematic content analysis approach. FINDINGS: key areas affecting midwifery morale were identified, in particular staffing levels, working relationships and organisational issues. One year later, despite many changes having taken place, midwifery morale was still low but participants were more politically analytical of, and actively involved in changing their situation. The findings of the study indicate that there are complex and long-standing cultural inhibitions to the effective development of midwifery care but, if these are made explicit through a planned collaborative process, such as in this study, a process of cultural shift can be seen to begin. IMPLICATIONS FOR PRACTICE: focus groups can be a useful tool in moving midwifery culture forward within a local context.

Anecdotes as Topic↗
PubMedDate not supplied

A phenomenologic study of flight nurses' clinical decision-making in emergency situations.

INTRODUCTION: This article describes a phenomenologic study of Western Australian flight nurses' clinical decision-making in emergency situations in which they were the sole health professional. METHOD: Following a phenomenologic method, in-depth interviews were analyzed by the method Colaizzi described. The phenomenon of clinical decision-making in emergency situations was explicated and illustrated by a thematic analysis. RESULTS: A gestalt of knowing was identified by the interrelationships of the themes Ways of Knowing the Patient, Context of Knowing, and Reflective Practice. The theme Ways of Knowing the Patient is formed by the subthemes of intuitive, experiential, and objective knowing. The subthemes of aviation environment, no or minimized involvement in triage, knowing colleagues, sole practitioner, experiential level, and practice guidelines form the theme Context of Knowing. The third theme, Reflective Practice, consists of the subthemes self-critique and change in practice. CONCLUSION: The findings address the paucity of knowledge of the phenomenon of clinical decision-making in this context of flight nursing practice.

Air Ambulances↗
PubMed2005

Exploring students' experience of training for counselling skills and the impact on practice.

AIM: The aim of this study was to explore participants' experience of an accredited counselling skills course and their perception of its impact on practice. DESIGN: A qualitative design was used utilizing a mixed-method approach. Data were collected using semistructured interviews and the repertory-grid technique. Data were analysed using thematic content analysis (interviews) and the repertory grids were analysed qualitatively using a four-stage procedure. SAMPLE: A convenience sample of six healthcare professionals undertaking a counselling skills course completed both interviews. RESULTS: The biggest impact of the course was in the area of self-awareness and skill development. The development of attentive listening, both in terms of objective and subjective findings, was evident. Students perceived that personal qualities, such as warmth and caring, were essential. All participants identified that the group were supportive and that this enhanced learning. The students changed their practice by improving their skills, increasing their awareness and by developing deeper therapeutic relationships with patients and their carers. CONCLUSION: This research adds to the body of knowledge in palliative care. It identifies key elements in the learning of counselling skills and recognizes the impact of these skills on improving the care of palliative care patients and families.

Counseling↗
PubMed2004

Blood glucose self-monitoring in non-insulin-treated type 2 diabetes: a qualitative study of patients' perspectives.

BACKGROUND: Self-monitoring of blood glucose is controversial in the management of type 2 diabetes. Some research suggests that self-monitoring improves glycaemic control, whereas other research is sceptical about its value for people with type 2 diabetes who are not on insulin. Although blood glucose meters are widely available and used by this group, patients' own views are absent from the debate. AIM: To explore the pros and cons of glucose monitoring from the patients' perspectives. DESIGN OF STUDY: Qualitative repeat-interview study. SETTING: Patients were recruited from 16 general practices and three hospital clinics within four local healthcare cooperatives in Lothian, Scotland. METHOD: Interview data from 40 patients diagnosed with type 2 diabetes within the previous 6 months were analysed using thematic analysis informed by grounded theory. We report findings from round 1 and round 2 interviews. RESULTS: Glucose monitoring can heighten patients' awareness of the impact of lifestyle; for example, dietary choices, on blood glucose levels. Glucose monitoring amplifies a sense of 'success' or 'failure' about self-management, often resulting in anxiety and self-blame if glucose readings remain consistently high. Moreover, monitoring can negatively effect patients' self-management when readings are counter-intuitive. CONCLUSION: Our analysis highlights the importance of understanding the meanings that newly diagnosed patients attach to glucose self-monitoring. To maximise the positive effects of self-monitoring, health professionals should ensure that patients understand the purpose of monitoring and should clarify with patients how readings should be interpreted.

Adult↗
PubMed2003

Straightforward consultation or complicated condition? General practitioners' perceptions of low back pain.

BACKGROUND: Low back pain is a common condition in general practice and represents a significant part of a general practitioner's workload. However, despite guidelines, back pain still presents considerable challenges to clinicians. OBJECTIVE: To explore the perceptions and declared behaviour of UK general practitioners in relation to patients with low back pain. METHOD: A qualitative design was used, involving semi-structured interviews with 17 GPs in the North of England. Interviews were transcribed verbatim and analysed using qualitative thematic analysis. RESULTS: Two major themes emerged from the data relating to approaches to and perceptions of low back pain. A dichotomy emerged, where GPs describe their approach to what they know to be a straightforward consultation where most patients recover, and the frustration they experience when patients do not. Although GPs are using a simple bio-mechanistic approach to low back pain, they also operate a method of categorising patients, which involves identifying real and pseudo patients. When confronted with 'challenging' cases, that is those who do not recover, most GPs feel isolated and poorly prepared. CONCLUSION: GPs adopt a bio-mechanistic approach to LBP which appears to work well for the majority of patients, as the natural history of low back pain dictates that most patients will recover. However, this approach to low back pain fails at the margins and this is evident by the significant minority of persistent sufferers and the GP's reaction to them. Expanding patient-centredness to explore psychological and social dimensions in relation to low back pain presents an ongoing challenge in general practice.

Adult↗
PubMed2006

Family members' experience of participation in the needs of assessment when their older next of kin becomes in need of public home help: a qualitative interview study.

BACKGROUND: The policy that older people should be able live in their own homes in spite of extensive care and social service needs means that close family members are increasingly involved in help provision. Ways must be found to facilitate their situation. Their participation in the needs assessment of their next of kin may be crucial. OBJECTIVES: The aim of the study was to illuminate close family members' experience of having an older next of kin becoming in need of public home help, their participation in the needs assessment procedure and the decisions about their next of kins' public home help. PARTICIPANTS: The sample was 27 close family members (mean age 63, range 42-93 years) chosen by their older needs-assessed next of kin. METHODS: An interview using a thematic interview guide formed an everyday dialogue jointly constructed by the interviewer and the interviewee. Thereafter an interpretative content analysis was conducted on the transcribed interviews. RESULTS: One overarching category was illuminated: "Feeling disconfirmed or confirmed in the needs assessment, when feeling pressed by the responsibility and struggling to balance the needs of the family." Four principal categories with sub-categories were derived: (1) Experiencing existential ruminations and the need to help. (2) Help giving and receiving as a difficult balance between needs. (3) Feeling overlooked or acknowledged as having an influence on the needs assessment. (4) Hopes about the home help being fulfilled or dashed. CONCLUSION: The findings imply that the main focus is on the help seeker, overlooking the contribution of family members representing and providing help. A more holistic needs assessment approach is required with a framework and working methods that involve and support the family as a whole.

Adaptation, Psychological↗
PubMed2005

Trying to do my best as a mother: decision-making in families of children undergoing elective surgical treatment for short stature.

OBJECTIVES: To explore how families make decisions about elective leg-lengthening surgical treatment. DESIGN: Interviews were conducted and analysed using Interpretative Phenomeno logical Analysis (Smith, 1995). METHODS: Data were gathered using semi-structured interviews with nine mothers of children who had recently decided to undergo treatment. RESULTS: Overall, the decision process was guided by the mothers' central concern to act responsibly as a parent. Thematic analysis indicated that the decision was taken in a social context where short stature could lead to discrimination and disability. The decision-making process evolved gradually over several years as mothers and children gathered information about treatment. While mothers emphasized that ultimately it was their child's decision, they monitored the decision process and filtered the information available in an attempt to ensure that the child made a well-informed and wise choice. CONCLUSIONS: The decision was presented as an ongoing process by the mothers, their concerns representing their desire to do their best as parents for their children. Theoretically, the mothers' description of the process can be understood in terms of their attempts to resolve an ethical dilemma. Clinical implications include recognition of the role of the psychologist in supporting mothers in their decision making and thus indirectly helping children.

Adolescent↗
PubMed2002

Online learning: enhancing nurse education?

BACKGROUND: The need to integrate information technology into nursing education has been recognized and well documented. In spite of this, information technology remains a neglected subject in many nursing programmes. Strategies have been considered for increasing the integration of information technology in nursing education. One of the key issues identified is the need for research into the factors that contribute to optimal learning with information technology, specifically the need to explore issues that contribute to student frustration and satisfaction with learning. Within Australia, the incorporation of information technology as a core subject in nursing education is still relatively new. This article describes how one university used 'online' learning to expose students to conceptual and experiential opportunities that enabled them to develop skills in the management of information technology. METHODS: Twenty-one students participated in this qualitative study. Individual interviews were used to develop insights into student perceptions. Thematic analysis enabled refined themes to emerge. These themes formed the basis of focus group discussions. Focus groups were used to enhance and validate the information from one-to-one interviews by using group dynamics to add experiential richness to the data. FINDINGS: Four major themes emerged: computer confidence, flexibility, active learning and practicalities of teaching. CONCLUSIONS: The integration of information technology into nursing education requires a dramatic change in thinking. The 'learning curve' is steep for both student and educator and there are many issues that need to be considered. This research does not aim to provide solutions to the issues highlighted but rather offers recommendations for enhancing the teaching and learning experience.

Attitude of Health Personnel↗
PubMed1998

Life control and health in view of qualitative and quantitative research.

In this paper the experiences of life control and health of Finnish people are described and compared by reference to two studies with different methodologies. The goal of the qualitative study was to describe and understand the human being's health as an individual way of existence on the basis of life descriptions. The qualitative data were gathered through thematic interviews (n = 60, men and women, aged 30-50 years). The data were analyzed with the grounded theory method. The analysis showed life control to be a core category that characterizes health experiences. On the basis of the analysis, the content of concept of life control was defined to describe the data. The goal of the quantitative study was to produce information on life control among young males, their health, health behaviour, experiences of stress and life situations as well as the associations between these dimensions. The definition of life control was based on Antonovsky's theory of sense of coherence and on the study of Söderqvist and Bäckman. The quantitative data were gathered with questionnaires from 2500 (response rate 60%). The data were processed using cross-tabulation and multivariate data analysis (discriminant analysis). The connections between life control and health were obvious in both studies. To a certain extent the results were parallel, but there were also some differences which are discussed here as a starting point for developing further the research on life control and health in the nursing science context.

Adult↗
PubMedDate not supplied

Factors influencing the decision to abandon manual wheelchairs for three individuals with a spinal cord injury.

PURPOSE: This study was conducted to identify factors which influence individuals with a spinal cord injury to abandon their first wheelchair before five years of use. It aims to provide prescribing therapists and manufacturers with insights which may assist in facilitating better outcomes for wheelchair users, thereby reducing abandonment rates and containing replacement costs. METHOD: A descriptive, qualitative design was used to gather the perceptions of three individuals with a spinal cord injury. RESULTS: Thematic analysis yielded five themes: 'Participants' experience of the first prescription'; 'The physical issues with the wheelchair have functional implications'; 'Gaining experience is so important'; 'Participants' experience of the second prescription'; and 'Participants' suggestions'. CONCLUSIONS: Factors influencing manual wheelchair abandonment for these participants were consistent with findings from the literature concerning dissatisfaction and abandonment of assistive technology. For these three individuals the lack of experience in wheelchair use and selection, the functional limitations encountered with the design of the wheelchair and the manner and timing of the prescription process combined to lead to dissatisfaction and ultimately abandonment. Suggestions for changes to wheelchair prescription practices were made.

Adult↗
PubMed2006

Impact of institutional review board practice variation on observational health services research.

OBJECTIVE: To describe, qualitatively and quantitatively, the impact of a review by multiple institutional review boards (IRBs) on the conduct of a multisite observational health services research study. DATA SOURCE AND SETTING: Primary data collection during 2002, 2003, and 2004 at 43 United States Department of Veterans Affairs (VA) primary care clinics. DESIGN: Explanatory sequential mixed methods design incorporating qualitative and quantitative elements in sequence. DATA COLLECTION AND ABSTRACTION METHODS: Field notes and documents collected by research staff during a multisite observational health services research study were used in thematic analysis. Themes were quantified descriptively and merged with timeline data. PRINCIPAL FINDINGS: Approximately 4,680 hours of staff time over a 19-month period were devoted solely to the IRB process. Four categories of phenomena impacting research were observed: (1) Recruitment, retention, and communication issues with local site principal investigators (PIs). Local PIs had no real role but were required by IRBs. Twenty-one percent of sites experienced turnover in local PIs, and local PI issues added significant delay to most sites. (2) Wide variation in standards applied to review and approval of IRB applications. The study was designed to be qualified under U.S. government regulations for expedited review. One site exempted it from review (although it did not qualify for exemption), 10 granted expedited review, 31 required full review, and one rejected it as being too risky to be permitted. Twenty-three required inapplicable sections in the consent form and five required HIPAA (Health Insurance Portability and Accountability Act of 1996) consent from physicians although no health information was asked of them. Twelve sites requested, and two insisted upon, provisions that directly increased the risk to participants. (3) Multiple returns for revision of IRB applications, consent documents, and ancillary forms. Seventy-six percent of sites required at least one resubmission, and 15 percent of sites required three or more (up to six) resubmissions. Only 12 percent of sites required any procedural or substantive revision; most resubmissions were editorial changes to the wording of the consent document. (4) Process failures (long turnaround times, lost paperwork, difficulty in obtaining necessary forms, unavailability of key personnel at IRBs). The process required from 52 to 798 (median 286) days to obtain approval at each site. CONCLUSIONS: Several features of the IRB system as currently configured impose costly burdens of administrative activity and delay on observational health services research studies, and paradoxically decrease protection of human subjects. Central review with local opt-out, cooperative review, or a system of peer review could reduce costs and improve protection of human subjects.

Ethics Committees↗
PubMed2026

The work of specialist nurses in the mainstreaming of germline genomic testing in cancer: an investigation.

BACKGROUND: Specialist nurses are increasingly working in the mainstreaming of germline genomic testing in cancer. AIMS: The study aimed to investigate the work of specialist nurses in the mainstreaming of germline genomic testing in cancer, with a focus on Lynch syndrome, and to consider the future of genomics in nursing. METHODS: Semi-structured interviews were conducted with a purposive sample of 12 specialist nurses and three genetic counsellors, and thematic analysis was carried out. FINDINGS: Prominent themes arising from the data were: the capability and capacity of specialty-based clinical nurse specialists, for whom genomics is an added part of their wider role, to deliver genomic testing; and whether these specialty-based nurses or specialist genomic nurses, who work only in genomics, are best placed to deliver genomic testing. CONCLUSION: When planning service provision in the mainstreaming of genetic testing, the capacity and capability of specialty-based clinical nurse specialists should be considered alongside the possible need for specialist genomic nurses.

Humans↗
PubMed2004

Violators of a child passenger safety law.

BACKGROUND: Nonuse of child car safety seats (CSSs) remains significant; in 2000, 47% of occupant fatalities among children <5 years of age involved unrestrained children. Nonusers and part-time users of CSSs represent small proportions of the US population that have not responded to intervention efforts. Our study examined the factors contributing to nonuse or part-time use of CSSs and the effects of exposure to a class for violators of the California Child Passenger Safety (CPS) law. METHODS: Focus groups (in English and Spanish) were conducted with individuals cited for violation of the law (N = 24). A thematic analysis of notes made by an observer, supplemented by audiotapes of the sessions, was conducted. In addition, a study of the effects of exposure to a violator class on knowledge and correct CSS use was conducted among violators. Certified CPS technicians conducted the classes and interviews. Subjects were parents cited as the driver with a child of 20 to 40 pounds, between 12 and 47 months of age. One hundred subjects recruited from the class were compared with 50 subjects who did not attend a class. Follow-up home interviews, with inspection of CCS use, were conducted 3 months after payment of the fine and completion of all court requirements. Fisher's exact test was used for 2 x 2 tables, because some of the tables had small cell sizes. The Mann-Whitney rank sum test was used for child restraint use, knowledge, and correct use scales, because some of these variables were not normally distributed. Linear and logistic regression models were used to examine the effects of several variables on these parameters. RESULTS: Factors influencing CSS nonuse were 1) lifestyle factors, 2) transportation and trip circumstances, 3) nonparent or nondriver issues, 4) parenting style, 5) child's behavior, and 6) perceived risks of nonuse. Violator subjects were mostly Hispanic and female, with incomes of less than 30,000 dollars per year. Those exposed to the class (citation and education group) scored 1 point higher on a knowledge test and had 1 more item correct on a CSS use instrument than did the group not exposed to the class (citation only group). In the logistic model, the citation and education group scored higher on the 2 items that were corrected by the instructor during the class. CONCLUSION: Our focus group study of CPS law violators revealed that multiple complex factors influence consistent use of a CSS. The interplay of the particular vehicle, the trip circumstances, and family/parent/child factors affected the use of a CSS at the time of parent citation. Addressing transportation issues and parenting skills in CPS programs is necessary. Among parents who had been ticketed for not restraining their children, exposure to a violator class demonstrated some benefit, compared with a fine alone. Correct CSS use improved most on items corrected by the instructor. Violator classes that include "hands-on" training show promise for improving rates of correct use of CSSs.

Adult↗
PubMed2000

Thyroid cancer: patients' experiences of receiving iodine-131 therapy.

PURPOSE/OBJECTIVES: To enhance understanding of the experiences and educational needs of patients receiving iodine-131 (131I) therapy for the treatment of thyroid cancer. DESIGN: Qualitative design using interpretive description. SETTING: A 24-bed oncology/acute-care medical unit in a large tertiary hospital in western Canada. SAMPLE: 5 men and 22 women (18-80 years of age) who have received 131I therapy in the past two years. METHODS: Unstructured focus group and telephone interviews and field notes. Interviews were tape-recorded, transcribed verbatim, and subjected to thematic analysis. FINDINGS: Researchers elicited four major themes from the analysis: (a) recognizing the totality of the cancer experience, (b) being isolated, (c) recognizing the totality of the treatment experience, and (d) understanding barriers to treatment. CONCLUSIONS: Healthcare providers require a better understanding of thyroid disease and the treatment and side effects of 131I therapy. Furthermore, educational programs are required to adequately prepare nurses and patients for future care. IMPLICATIONS FOR NURSING PRACTICE: A need exists to improve the care and education provided to patients receiving 131I therapy. In particular, recognition of the totality of the cancer experience and the need for both staff and patient education were illustrated. If nurses are to provide comprehensive cancer care, both psychosocial and physical needs must be addressed and fulfilling these needs requires a collaborative approach among patients, nurses, and other healthcare professionals.

Administration, Oral↗
PubMed2006

Childhood unintentional injuries: the perceived impact of the environment, lack of supervision and child characteristics.

BACKGROUND: Investigations into the context and causation of injury, including injury risks, are an essential part of the injury prevention knowledge base. Caregiver perceptions of childhood injury risks may assist in the design of safety interventions and influence the way in which an intervention is received within a community. METHODS: Focus groups and individual interviews were conducted in two low-income neighbourhoods in South Africa to collect information on caregiver perceptions of injury risks. The data were analysed via thematic content analysis. RESULTS: The results revealed that injury risks are perceived as multifaceted and as contributing synergistically to an injury event. Parents of children also tended to attribute most risks to the environment instead of individual action. CONCLUSIONS: Interventions including passive strategies and less activity from the parent may be welcomed in communities. Attention should be given to child injury prevention methods specifically for low-income contexts.

Accidental Falls↗