Lived Experience of Hereditary Chronic Pancreatitis – A Qualitative Interview Study

Objectives Hereditary chronic pancreatitis is a rare condition characterized by intermittent acute episodes of pancreatitis and long-term impairment of pancreatic functions. However, the subjective perspective of individuals affected by hereditary chronic pancreatitis has been little studied. This qualitative study investigates the experience of hereditary chronic pancreatitis patients and their relatives because the awareness of the needs of those affected is an essential component of a patient-centered management of chronic conditions. Methods Semi-structured qualitative interviews were conducted with hereditary chronic pancreatitis patients and their relatives. Data were analysed using qualitative content analysis. The concepts of ‘biographical contingency,’ ‘biographical disruption’ and the ‘shifting perspectives model’ served as theoretical frameworks. Results A total of 24 participants (17 patients, 7 relatives) were interviewed individually. Four main themes were identified: (1) The unpredictable clinical course of hereditary chronic pancreatitis; (2) hereditary chronic pancreatitis as a devastating experience; (3) hereditary chronic pancreatitis as part of a normal life; and (4) being reduced to hereditary chronic pancreatitis. Discussion The ‘shifting perspectives model’ of chronic illness covers the four dimensions adequately and can serve as a theoretical model to explain hereditary chronic pancreatitis patients’ experience. A better understanding of the patients and their families’ experience and the shifting character of hereditary chronic pancreatitis can help healthcare professionals to tailor the care to meet the needs of those affected.

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P107: Understanding the sensory experience of performing a rare, high-stakes clinical procedure: a qualitative study of clinicians with lived experience

CJEM ◽

10.1017/cem.2019.298 ◽

2019 ◽

Vol 21 (S1) ◽

pp. S102-S103

Author(s):

J. Riggs ◽

M. McGowan ◽

C. Hicks

Keyword(s):

Clinical Practice ◽

Data Collection ◽

Lived Experience ◽

Skill Acquisition ◽

Qualitative Content Analysis ◽

Tertiary Care ◽

Mental Practice ◽

Tertiary Care Centre ◽

High Stakes ◽

Qualitative Interview Study

Introduction: Emergency physicians (EP) are expected to be competent in a variety of uncommon but life-saving procedures, including the bougie assisted cricothyrotomy (BAC). Given the rarity and high-stakes nature of the BAC, simulation is often used as the primary learning and training modality. However, mental practice (MP), defined as the “cognitive rehearsal of a skill in the absence of overt physical movement”, has been shown to be as effective as physical practice in several areas, including athletics, music, team-based resuscitation and surgical skill acquisition. MP scripts incorporate cues from different sensory modalities to supplement instructions of how to complete the skill. We sought to explore EPs perspectives on the kinesthetic, visual and cognitive aspects of performing a BAC to inform the development of a MP BAC script. Methods: We undertook a qualitative interview study of EPs at a single tertiary care centre who had done a BAC in clinical practice. Participants were recruited using purposive sampling. The primary method for data collection was in-depth semi-structured qualitative interviews, which were recorded and transcribed verbatim. Data collection and analysis were concurrent; transcripts were coded independently by two researchers using qualitative content analysis on a coding framework based on the previously developed BAC checklist. At each procedural step, the kinesthetic, visual and cognitive cues that enhance MP were identified. Results: Eight EPs (5 staff; 3 Royal College residents) participated in the interviews. All participants had completed at least one BAC in their clinical practice. Data analysis revealed recurrent themes signifying successful completion of each procedural step. These include visual (ie. seeing a spray of blood upon entry into the airway) and kinesthetic (ie. feel of the tracheal rings on a finger) cues that describe aspects of the procedure not found in traditional teaching modalities, such as textbooks. Conclusion: Knowledge gleaned from the interviews of EPs with lived experience gives us a deeper insight into the sensory aspects of performing a BAC in clinical practice. We expect that using these experientially derived cues to inform the development of a MP script will increase its validity and applicability to learners and for skill maintenance. Future work includes evaluating the utility of the developed script in acquiring and maintaining competence performing the BAC.

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Intravenous Mistletoe Treatment in Integrative Cancer Care: A Qualitative Study Exploring the Procedures, Concepts, and Observations of Expert Doctors

Evidence-based Complementary and Alternative Medicine ◽

10.1155/2016/4628287 ◽

2016 ◽

Vol 2016 ◽

pp. 1-16 ◽

Cited By ~ 11

Author(s):

Gunver S. Kienle ◽

Milena Mussler ◽

Dieter Fuchs ◽

Helmut Kiene

Keyword(s):

Cancer Care ◽

Qualitative Content Analysis ◽

Mental Condition ◽

Anthroposophic Medicine ◽

Patient Centered ◽

Cancer Treatments ◽

Qualitative Interview Study ◽

Patient Assessments ◽

Lymphangitis Carcinomatosa

Background. Mistletoe therapy (MT) is widely used in patient-centered integrative cancer care. The objective of this study was to explore the concepts, procedures, and observations of expert doctors, with a focus on intravenous MT.Method. A qualitative interview study was conducted with 35 highly experienced doctors specialized in integrative and anthroposophic medicine. Structured qualitative content analysis was applied. For triangulation, the results were compared with external evidence that was systematically collected, reviewed, and presented.Results. Doctors perform individualized patient assessments that lead to multimodal treatment approaches. The underlying goal is to help patients to live with and overcome disease. Mistletoe infusions are a means of accomplishing this goal. They are applied to stabilize disease, achieve responsiveness, induce fever, improve quality of life, and improve the tolerability of conventional cancer treatments. The doctors reported long-term disease stability and improvements in patients’ general condition, vitality, strength, thermal comfort, appetite, sleep, pain from bone metastases, dyspnea in pulmonary lymphangitis carcinomatosa, fatigue, and cachexia; chemotherapy was better tolerated. Also patients’ emotional and mental condition was reported to have improved.Conclusion. Individualized integrative cancer treatment including MT aims to help cancer patients to live well with their disease. Further research should investigate the reported observations.

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Implementation of patient-centred care: which organisational determinants matter from decision maker’s perspective? Results from a qualitative interview study across various health and social care organisations

BMJ Open ◽

10.1136/bmjopen-2018-027591 ◽

2019 ◽

Vol 9 (4) ◽

pp. e027591 ◽

Cited By ~ 5

Author(s):

Kira Isabel Hower ◽

Vera Vennedey ◽

Hendrik Ansgar Hillen ◽

Ludwig Kuntz ◽

Stephanie Stock ◽

...

Keyword(s):

Qualitative Study ◽

Social Care ◽

Qualitative Content Analysis ◽

Qualitative Interviews ◽

Sampling Strategy ◽

Well Being ◽

Decision Makers ◽

Patient Centred Care ◽

Qualitative Interview Study ◽

Health And Social Care

ObjectivesHealth and social care systems, organisations and providers are under pressure to organise care around patients’ needs with constrained resources. To implement patient-centred care (PCC) successfully, barriers must be addressed. Up to now, there has been a lack of comprehensive investigations on possible determinants of PCC across various health and social care organisations (HSCOs). Our qualitative study examines determinants of PCC implementation from decision makers’ perspectives across diverse HSCOs.DesignQualitative study of n=24 participants in n=20 semistructured face-to-face interviews conducted from August 2017 to May 2018.Setting and participantsDecision makers were recruited from multiple HSCOs in the region of the city of Cologne, Germany, based on a maximum variation sampling strategy varying by HSCOs types.OutcomesThe qualitative interviews were analysed using an inductive and deductive approach according to qualitative content analysis. The Consolidated Framework for Implementation Research was used to conceptualise determinants of PCC.ResultsDecision makers identified similar determinants facilitating or obstructing the implementation of PCC in their organisational contexts. Several determinants at the HSCO’s inner setting and the individual level (eg, communication among staff and well-being of employees) were identified as crucial to overcome constrained financial, human and material resources in order to deliver PCC.ConclusionsThe results can help to foster the implementation of PCC in various HSCOs contexts. We identified possible starting points for initiating the tailoring of interventions and implementation strategies and the redesign of HSCOs towards more patient-centredness.

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Allocating Resources in Cancer Care During Pandemic. Findings from a Qualitative Interview Study with Oncologists and Ethical Analysis

Studia Universitatis Babeş-Bolyai Bioethica ◽

10.24193/subbbioethica.2021.spiss.112 ◽

2021 ◽

Vol 66 (Special Issue) ◽

pp. 165-166

Author(s):

Sabine Sommerlatte ◽

◽

Anna-Lena Kraeft ◽

Celine Lugnier ◽

Anke Reinacher-Schick ◽

...

Keyword(s):

Priority Setting ◽

Cancer Care ◽

Qualitative Content Analysis ◽

Qualitative Interviews ◽

Health Resources ◽

Diagnostic Procedures ◽

Resource Scarcity ◽

Standards Of Care ◽

Qualitative Interview Study

"Allocation of health resources towards the treatment of patients with COVID-19 may affect the quality of care for non-COVID-19 patients. Several medical societies representing cancer health professionals have issued statements on priority setting in cancer care in the wake of the Sars-CoV-2 outbreak (1, 2). However, there is a lack of empirical data on how resources are prioritized in cancer care and which criteria are taken into consideration by those involved in decision making. In this paper we will present findings from qualitative interviews conducted with oncologists in Germany between February and July 2021. Transcripts of interviews are analysed following principles of qualitative content analysis based on Kuckartz (3). According to preliminary analysis of the first five interviews conducted three major topics emerge: 1. Experiences with scarcity regarding selected diagnostic procedures and treatment. 2. Material and procedural criteria for priority setting and decisions on deviations of standards of care. 3. Effects of priority setting on coping and psycho-social support. We will discuss findings with regards to their possible contribution to an empirical and normative founded guidance for priority setting in cancer care in times of Sars-CoV-2 outbreak and comparable events. 1. Deutsche Gesellschaft für Hämatologie und Onkologie. Coronavirus-Infektion (COVID-19) bei Patienten mit Blut- und rebserkrankungen. https://www.onkopedia.com/de/onkopedia/guidelines/coronavirus-infektion-covid-19-bei-patient-innen-mit-blut-und-krebserkrankungen/@@guideline/html/index.html 2. Marron JM, Joffe S, Jagsi R et al. Ethics and Resource Scarcity: ASCO Recommendations for the Oncology Community During the COVID19 Pandemic. J Clin Onc. April 28 2020, doi:10.1200/JCO.20.00960 3. Kuckartz, U. (2018). Qualitative Inhaltsanalyse. Methoden, Praxis, Computer¬unterstützung (4th ed.). Beltz Juventa. "

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Perceptions of genetic testing in patients with hereditary chronic pancreatitis and their families: a qualitative triangulation

European Journal of Human Genetics ◽

10.1038/s41431-020-00705-9 ◽

2020 ◽

Vol 29 (1) ◽

pp. 29-38

Author(s):

Regina Müller ◽

Ali A. Aghdassi ◽

Judith Kruse ◽

Markus M. Lerch ◽

Peter Simon ◽

...

Keyword(s):

Chronic Pancreatitis ◽

Genetic Testing ◽

Focus Group ◽

Subjective Experience ◽

Qualitative Content Analysis ◽

Great Influence ◽

Ethical Implications ◽

Genetic Test Results ◽

The Family ◽

Hereditary Chronic Pancreatitis

AbstractHereditary chronic pancreatitis (HCP) is a genetically determined condition characterized by intermittent acute episodes of pancreatitis and long-term impairment of the exocrine and endocrine pancreatic functions. Genetic test results can have substantial psychological and social consequences for the individuals tested and their families. Nevertheless, little is known so far about the subjective experience of individuals genetically tested for HCP. This qualitative study examines the viewpoints of HCP patients and their relatives in order to identify the psychosocial and ethical implications related to genetic testing within families. Semi-structured qualitative individual interviews and a focus group with HCP patients and their family members were conducted. Data were audio-recorded, transcribed verbatim and analysed using qualitative content analysis. A total of 28 individuals were enrolled in the study: 24 individuals (17 patients, 7 relatives) were interviewed in semi-structured one-on-one interviews and 4 individuals (2 patients, 2 life partners) participated in the focus group. Emerging topics covered (1) genetic testing in childhood, (2) genetic testing within the family and (3) family planning. The study reveals that genetic testing for HCP has a wide influence in familial contexts and is accompanied by normative issues, such as autonomy, reproductive decisions and sharing of information within the family. The results raise the awareness of the complexity of family contexts: familial relationships and dynamics can have great influence on the individual decisions related to genetic testing. Increased understanding of these relational contexts can help health professionals, for example, in counselling, to discuss genetic testing better with patients and families.

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Social inclusion and violence prevention in psychiatric inpatient care. A qualitative interview study with service users, staff members and ward managers

BMC Health Services Research ◽

10.1186/s12913-021-07178-6 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Veikko Pelto-Piri ◽

Lars Kjellin

Keyword(s):

Social Justice ◽

Inpatient Care ◽

Social Inclusion ◽

Qualitative Content Analysis ◽

Qualitative Interviews ◽

Psychiatric Inpatient ◽

Hospital Staff ◽

Service Users ◽

Staff Members ◽

Qualitative Interview Study

Abstract Background Many psychiatric services include social inclusion as a policy with the aim to offer users the opportunity to participate in care and to form reciprocal relationships. The aim of this study was to explore opportunities and problems with regard to participation, reciprocity and social justice that different stakeholders experience when it comes to social inclusion for service users and minimizing violence in psychiatric inpatient care. Methods Qualitative interviews were performed with 12 service users, 15 staff members, and six ward managers in three different kinds of psychiatric wards in Sweden. The data were analyzed using the framework method and qualitative content analysis, which was based on the three following social inclusion values: participation, reciprocity, and social justice. Results Themes and subthemes were inductively constructed within the three social inclusion values. For participation, staff and ward managers reported difficulties in involving service users in their care, while service users did not feel that they participated and worried about what would happen after discharge. Staff gave more positive descriptions of their relationships with service users and the possibility for reciprocity. Service users described a lack of social justice, such as disruptive care, a lack of support from services, not having access to care, or negative experiences of coercive measures. Despite this, service users often saw the ward as being safer than outside the hospital. Staff and managers reported worries about staffing, staff competence, minimizing coercion and violence, and a lack of support from the management. Conclusions By applying the tentative model on empirical data we identified factors that can support or disrupt the process to create a safe ward where service users can feel socially included. Our results indicate that that staff and service users may have different views on the reciprocity of their relationships, and that users may experience a lack of social justice. The users may, due to harsh living conditions, be more concerned about the risk of violence in the community than as inpatients. Staff and ward managers need support from the management to foster a sense of community in the ward and to implement evidence-based prevention programs.

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The specific needs of patients following sepsis: a nested qualitative interview study

BJGP Open ◽

10.3399/bjgpopen17x100725 ◽

2017 ◽

Vol 1 (1) ◽

pp. bjgpopen17X100725

Author(s):

Sabine Gehrke-Beck ◽

Mareike Bänfer ◽

Nina Schilling ◽

Konrad Schmidt ◽

Jochen Gensichen ◽

...

Keyword(s):

Patient Education ◽

Qualitative Content Analysis ◽

Controlled Trial ◽

Qualitative Interviews ◽

Case Manager ◽

Clinical Information ◽

Case Managers ◽

Structured Interviews ◽

Serious Illness ◽

Qualitative Interview Study

BackgroundSurvivors of sepsis suffer from multiple critical disease sequelae when discharged to primary care. There is a lack of structured aftercare programmes and case managers may be helpful in caring for patients with chronic critical disease.AimTo gain insight into the functioning of a structured aftercare programme for post-sepsis patients in general practice.Design & settingA qualitative study using semi-structured interviews with patients and GPs across Germany who participated in an randomised controlled trial of a structured aftercare programme for post-sepsis patients, which included patient education and case manager monitoring.MethodQualitative interviews with 19 patients and 13 GPs were audiorecorded, transcribed verbatim, and analysed using qualitative content analysis.ResultsPatients appreciated the information given in the patient education session, but some disliked it because it reminded them of their serious illness. GPs appreciated patient education because well-informed patients are more likely to participate in follow-up. Patients appreciated the case monitoring because it made them feel safer and more cared for and helped them reflect on their health issues. However, some patients felt uncomfortable with the regular questioning. GPs appreciated the case management programme because they received regular clinical information. However some GPs were wary of the clinical relevance of the information, the delegation of the patient to the nurse, and efficiency of time. Both patients and GPs requested more clinical support, such as easier access to psychotherapists.ConclusionIn general, both patients and their GPs appreciated patient education and monitoring following sepsis. Patients’ retrospections and worries about their serious illness need to be considered.

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Vision-related quality of life in adults with severe peripheral vision loss: a qualitative interview study

Journal of Patient-Reported Outcomes ◽

10.1186/s41687-020-00281-y ◽

2021 ◽

Vol 5 (1) ◽

Author(s):

Ryan Lange ◽

Abigail Kumagai ◽

Sara Weiss ◽

Katherine B. Zaffke ◽

Sherry Day ◽

...

Keyword(s):

Quality Of Life ◽

Contrast Sensitivity ◽

Qualitative Interviews ◽

Well Being ◽

Vision Impairment ◽

Qualitative Interview Study ◽

Patient Reported ◽

Related Quality ◽

The Impact

Abstract Background Existing patient-reported outcome (PRO) measures may not be relevant to the full range of functional and vision-related quality of life (VR-QOL) concerns of individuals with vision impairment due to severe peripheral field loss (PFL). Measurement of VR-QOL in severe PFL is important in order to determine the effectiveness of vision rehabilitation interventions for this population. The purpose of this study was to characterize the impact of severe PFL due to retinitis pigmentosa (RP) and glaucoma on VR-QOL as the initial phase in the development of a novel PRO measure. Methods Individuals with severe PFL due to RP or glaucoma were recruited from the Kellogg Eye Center and the Association for the Blind and Visually Impaired. Participants completed semi-structured qualitative interviews, the Impact of Vision Impairment (IVI) questionnaire and the RAND 36-Item Health Survey. Interviews were analyzed by two coders using thematic analysis. A matrix analysis was conducted to compare VR-QOL by cause of severe PFL. Sample size was determined by thematic saturation. Results The study included 37 participants (19 RP, 18 glaucoma). Median best-corrected visual acuity for those with RP and glaucoma was 20/40 and 20/27.5, while Pelli-Robson contrast sensitivity was 1.2 log contrast sensitivity (logCS) and 1.1 logCS, respectively. Median domain scores on the IVI (reading, mobility, well-being) ranged from a low of − 0.2 to a high of 0.7 logits in those with RP and from 0.5 to 1.2 logits in those with glaucoma. Qualitative interviews identified six VR-QOL themes relevant across participants with both RP and glaucoma, including activity limitations, driving, emotional well-being, reading, mobility, and social function. VR-QOL concerns were largely consistent among those with severe PFL due to RP and glaucoma. These overarching themes contained content relevant to specific challenges related to severe PFL. Conclusions There are commonly occurring VR-QOL concerns among individuals with severe PFL due to RP and glaucoma. The outlined themes will serve as the basis for development of the Low Vision Severely Constricted Peripheral Eyesight (LV-SCOPE) Questionnaire.

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Therapeutic Alliance in Interpreter-Mediated Psychotherapy from the Perspective of Refugee Patients: Results of Qualitative Interviews

Verhaltenstherapie ◽

10.1159/000517136 ◽

2021 ◽

pp. 1-9

Author(s):

Saskia Hanft-Robert ◽

Nadine Janis Pohontsch ◽

Cornelia Uhr ◽

Alexander Redlich ◽

Franka Metzner

Keyword(s):

Content Analysis ◽

Therapeutic Alliance ◽

Successful Treatment ◽

Qualitative Content Analysis ◽

Qualitative Interviews ◽

Therapeutic Treatment ◽

Factors Influencing ◽

Recommendations For Action ◽

Patients Perspective

Background: The therapeutic alliance is considered to be one of the most important factors of psychotherapy and is a necessary requirement for a successful treatment in interpreter-mediated psychotherapy. Patients and Methods: Using interpreter-mediated guided interviews, 10 refugee patients who experienced interpreter-mediated psychotherapy were asked about factors influencing the development of a trusting therapeutic alliance in the triad. The analysis of the interviews followed the rules of content-structuring qualitative content analysis. Results: A total of 11 factors were identified which could be assigned to the interpreter, therapist, or patient. In the analysis, the central role of the interpreter in establishing a therapeutic alliance in the triad became particularly clear. Conclusions: Consideration of the factors that, from the patients’ perspective, influence the establishment and maintenance of a trusting alliance within the triad, as well as the recommendations for action derived from this for psychotherapists and interpreters can lead to an improvement in the therapeutic treatment of refugees.

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Men’s experiences of radiotherapy treatment for localized prostate cancer and its long-term treatment side effects: a longitudinal qualitative study

Cancer Causes & Control ◽

10.1007/s10552-020-01380-3 ◽

2021 ◽

Author(s):

E. Sutton ◽

◽

J. A. Lane ◽

M. Davis ◽

E. I. Walsh ◽

...

Keyword(s):

Prostate Cancer ◽

Side Effects ◽

External Beam Radiotherapy ◽

Qualitative Interviews ◽

Well Being ◽

Localized Prostate Cancer ◽

Short Term ◽

Age Related ◽

Qualitative Interview Study ◽

Long Term Treatment

Abstract Purpose To investigate men’s experiences of receiving external-beam radiotherapy (EBRT) with neoadjuvant Androgen Deprivation Therapy (ADT) for localized prostate cancer (LPCa) in the ProtecT trial. Methods A longitudinal qualitative interview study was embedded in the ProtecT RCT. Sixteen men with clinically LPCa who underwent EBRT in ProtecT were purposively sampled to include a range of socio-demographic and clinical characteristics. They participated in serial in-depth qualitative interviews for up to 8 years post-treatment, exploring experiences of treatment and its side effects over time. Results Men experienced bowel, sexual, and urinary side effects, mostly in the short term but some persisted and were bothersome. Most men downplayed the impacts, voicing expectations of age-related decline, and normalizing these changes. There was some reticence to seek help, with men prioritizing their relationships and overall health and well-being over returning to pretreatment levels of function. Some unmet needs with regard to information about treatment schedules and side effects were reported, particularly among men with continuing functional symptoms. Conclusions These findings reinforce the importance of providing universal clear, concise, and timely information and supportive resources in the short term, and more targeted and detailed information and care in the longer term to maintain and improve treatment experiences for men undergoing EBRT.

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