scholarly journals ‘Because Everybody is so Different’: a qualitative analysis of the lived experiences and information needs of rectal cancer survivors

BMJ Open ◽  
2021 ◽  
Vol 11 (5) ◽  
pp. e043245
Author(s):  
Catherine H Saunders ◽  
Jenaya L Goldwag ◽  
Jackson T Read ◽  
Marie-Anne Durand ◽  
Glyn Elwyn ◽  
...  
Keyword(s):  
Mental Health ◽  
Rectal Cancer ◽  
Cancer Survivors ◽  
Lived Experiences ◽  
Information Needs ◽  
Medical Center ◽  
Qualitative Interviews ◽  
Full Range ◽  
Colorectal Surgeons ◽  
Care Counselling

ObjectiveTo (1) characterise (A) the lived experiences and (B) information needs of patients with rectal cancer; and (2) compare to the perceived lived experiences and information needs of colorectal surgeons.DesignWe conducted 1-hour semistructured qualitative interviews, dual independent transcript coding and thematic analysis.Setting/participantsInterviews included rectal cancer survivors (stages I–III), some accompanied by caregivers, at Dartmouth-Hitchcock Medical Center and experienced colorectal surgeons.ResultsWe performed 25 interviews involving 30 participants, including 15 patients with 5 caregivers, plus 10 physicians. Two major themes emerged. First, patients reported major impacts on their lives following rectal cancer, including on their everyday lives and leisure activities; identity, self-confidence and intimacy; mental health, especially anxiety. These impacts were mediated by their medical experiences, lifestyle and attitudes. Second, the diversity of effects on patients’ lives means that care, counselling and information needs should be personalised for a better medical experience and outcomes. Surgeons did not report knowledge of the full range of patient experiences and reported limited counselling in key areas, particularly concerning intimacy and mental health.ConclusionRectal cancer diagnosis, treatment and survivorship dramatically affect all people, regardless of which surgical treatment they undergo. Effects are varied and necessitate customised care, counselling and information, which surgeons are not currently providing. Because rectal cancer affects every part of patients’ lives, they need holistic support and information. Patients would benefit from substantial support after treatment as they establish a new normal.

scholarly journals Lived Experiences of Palestinian Patients With COVID-19: A Multi-center Phenomenological Study of Recovery Journey

2021 ◽  
Author(s):  
Aidah Alkaissi ◽  
Fadi AlZiben ◽  
Mohammad Abu Rajab ◽  
Mahdia Alkony
Keyword(s):  
Mental Health ◽  
Lived Experiences ◽  
Phenomenological Study ◽  
Qualitative Interviews ◽  
Healthcare Providers ◽  
Mental Healthcare ◽  
Sampling Technique ◽  
Care Plan ◽  
Structured Interviews ◽  
Study Participants

Abstract Background: Exploring lived experiences of recovered COVID-19 patients might have scientific, social, and policy relevance that apply to the healthcare infrastructure. This multi-center phenomenological study was conducted to explore lived experiences of Palestinian patients who recovered from COVID-19.  Methods: In this qualitative study, a phenomenological descriptive approach was used. A purposive sampling technique was employed to select the study participants. Semi-structured qualitative interviews were conducted with patients who recovered from COVID-19 (n = 20). The transcripts of the audio recorded interviews were analyzed by using Giorgio’s phenomenological analysis method. Results: Semi-structured interviews were conducted with 14 male and 6 female participants. The age of the participants ranged from 25-50 years. Nine themes and multiple subthemes emerged from the qualitative data. The themes were relevant to patient’s feelings about the experience, mental issues, social discriminations/stigma, symptoms, life in isolation, using supportive treatment, personal preventive measures, social support, and life after recovery.Conclusion: Survivors who were interviewed in this study recounted devastating experiences with regard to their mental health, social stigmatization, feeling guilt, shame, and hesitant to regain contact with others. Mental health issues should be addressed as a part of the care plan for patients with COVID-19. More studies are still needed to investigate if introducing mental healthcare providers to the care team of patients with COVID-19 can improve the experiences of the patients.

(Preprint)

2018 ◽  
Author(s):  
Ram Dixit ◽  
Sahiti Myneni
Keyword(s):  
Cancer Survivors ◽  
Mental Models ◽  
Health Systems ◽  
Information Needs ◽  
Health Data ◽  
Information Architecture ◽  
Personal Health ◽  
User Centered Design ◽  
Card Sort ◽  
Connected Health

BACKGROUND Connected Health technologies are a promising solution for chronic disease management. However, the scope of connected health systems makes it difficult to employ user-centered design in their development, and poorly designed systems can compound the challenges of information management in chronic care. The Digilego Framework addresses this problem with informatics methods that complement quantitative and qualitative methods in system design, development, and architecture. OBJECTIVE To determine the accuracy and validity of the Digilego information architecture of personal health data in meeting cancer survivors’ information needs. METHODS We conducted a card sort study with 9 cancer survivors (patients and caregivers) to analyze correspondence between the Digilego information architecture and cancer survivors’ mental models. We also analyzed participants’ card sort groups qualitatively to understand their conceptual relations. RESULTS We observed significant correlation between the Digilego information architecture and cancer survivors’ mental models of personal health data. Heuristic analysis of groups also indicated informative discordances and the need for patient-centric categories relating health tracking and social support in the information architecture. CONCLUSIONS Our pilot study shows that the Digilego Framework can capture cancer survivors’ information needs accurately; we also recognize the need for larger studies to conclusively validate Digilego information architectures. More broadly, our results highlight the importance of complementing traditional user-centered design methods and innovative informatics methods to create patient-centered connected health systems.

Policing mental illness: Police use of section 136 – Perspectives from police and mental-health nurses

2021 ◽  
pp. 002580242199336
Author(s):  
Meron Wondemaghen
Keyword(s):  
Mental Health ◽  
Police Officers ◽  
Health Care Policy ◽  
Qualitative Interviews ◽  
Data Sources ◽  
Mental Health Crisis ◽  
Care Policy ◽  
Mental Health Nurses ◽  
Health Crisis ◽  
Pilot Scheme

Ideological shifts in mental health-care policy such as deinstitutionalisation have meant police have had to make decisions about the care of persons with a mental-health crisis. This study examines how police in five English counties respond to crisis calls when employing the powers afforded in section 136 of the Mental Health Act 1983, and the effectiveness of the national Street Triage pilot scheme. Qualitative interviews with 30 police officers and mental-health nurses (MHN) were collected as data sources. The analysis shows that police have previously struggled with the significant number of crisis calls, whilst also finding mental-health services inadequately sourced, leading to some detentions in police cells as alternatives to health-based places of safety. However, the scheme has made positive changes in alleviating these issues when MHN are co-located with police, highlighting the need to strengthen their partnership by facilitating the sharing of information, responsibilities and decision making in order to ensure police cells continue to be avoided as alternative places of safety.

scholarly journals The Quality Mental Health Care Network: A roadmap to improving quality mental healthcare in Canada

2021 ◽  
Vol 34 (2) ◽  
pp. 100-106
Author(s):  
Emily J. Follwell ◽  
Siri Chunduri ◽  
Claire Samuelson-Kiraly ◽  
Nicholas Watters ◽  
Jonathan I. Mitchell
Keyword(s):  
Mental Health ◽  
Health Care ◽  
Mental Health Care ◽  
Focus Groups ◽  
Lived Experiences ◽  
Mental Healthcare ◽  
Care Network ◽  
Key Informant ◽  
Health Care Network

Although there are numerous quality of care frameworks, little attention has been given to the essential concepts that encompass quality mental healthcare. HealthCare CAN and the Mental Health Commission of Canada co-lead the Quality Mental Health Care Network (QMHCN), which has developed a quality mental healthcare framework, building on existing provincial, national, and international frameworks. HealthCare CAN conducted an environmental scan, key informant interviews, and focus groups with individuals with lived experiences to develop the framework. This article outlines the findings from this scan, interviews and focus groups.

scholarly journals Psychological Needs Satisfaction, Self-Rated Health and the Mediating Role of Exercise Among Testicular Cancer Survivors

2021 ◽  
Vol 15 (2) ◽  
pp. 155798832110126
Author(s):  
Anika R. Petrella ◽  
Catherine M. Sabiston ◽  
Madison F. Vani ◽  
Andrew Matthew ◽  
Daniel Santa Mina
Keyword(s):  
Mental Health ◽  
Testicular Cancer ◽  
Cancer Survivors ◽  
Psychological Needs ◽  
Basic Psychological Needs ◽  
Exercise Behavior ◽  
Physical And Mental Health ◽  
Self Rated Health ◽  
Needs Satisfaction ◽  
Testicular Cancer Survivors

Exploring tenets of basic psychological needs theory, the objective of this study was to examine the association between psychological needs satisfaction, exercise behavior, and physical and mental health among testicular cancer survivors. The present study investigated whether psychological needs satisfaction was directly associated with increased self-rated health, and if this relationship was mediated by engagement in exercise. Testicular cancer survivors ( N = 135; Mage = 32.45; SD = 7.63) self-reported current psychological needs satisfaction, exercise behavior, and perceived global physical and mental health during routine oncology visits. Associations were examined using path analysis. Psychological needs satisfaction was a positive correlate of both self-rated physical and mental health in this sample, and exercise mediated the association between needs satisfaction and self-rated physical health. This study supports the assumptions underpinning basic psychological needs theory in this unique clinical population. Based on the findings, exercise engagement represents one mechanism associated with perceived health after cancer. Supportive care interventions should aim to enhance satisfaction of psychological needs and investigate exercise as a mechanism underpinning the relationship between needs satisfaction and perceived health in testicular cancer survivors.

scholarly journals Treating sleep problems in young people at ultra-high-risk of psychosis: study protocol for a single-blind parallel group randomised controlled feasibility trial (SleepWell)

BMJ Open ◽  
2020 ◽  
Vol 10 (11) ◽  
pp. e045235
Author(s):  
Felicity Waite ◽  
Thomas Kabir ◽  
Louise Johns ◽  
Jill Mollison ◽  
Apostolos Tsiachristas ◽  
...  
Keyword(s):  
Mental Health ◽  
High Risk ◽  
Young People ◽  
Sleep Problems ◽  
Qualitative Interviews ◽  
Feasibility Trial ◽  
Psychotic Experiences ◽  
Post Intervention ◽  
Ultra High Risk ◽  
Randomised Controlled

BackgroundEffective interventions, targeting key contributory causal factors, are needed to prevent the emergence of severe mental health problems in young people. Insomnia is a common clinical issue that is problematic in its own right but that also leads to the development and persistence of psychotic experiences. The implication is that treating sleep problems may prevent the onset of psychosis. We collected initial case series data with 12 young people at ultra-high-risk of psychosis. Post-intervention, there were improvements in sleep, depression and psychotic experiences. Now we test the feasibility of a randomised controlled trial, with a clinical aim to treat sleep problems and hence reduce depression, psychotic experiences, and prevent transition to psychosis.Methods and analysisA randomised controlled feasibility trial will be conducted. Forty patients aged 14 to 25 years who are at ultra-high-risk of psychosis and have sleep disturbance will be recruited from National Health Service (NHS) mental health services. Participants will be randomised to receive either a novel, targeted, youth-focussed sleep intervention in addition to usual care or usual care alone. Assessor-blinded assessments will be conducted at baseline, 3 months (post-intervention) and 9 months (follow-up). The eight-session psychological intervention will target the key mechanisms which disrupt sleep: circadian rhythm irregularities, low sleep pressure, and hyperarousal. To gain an in-depth understanding of participants’ views on the acceptability of the intervention and study procedures, 16 participants (n=10 intervention, n=6 control) will take part in qualitative interviews. Analyses will focus on feasibility outcomes (recruitment, retention, and treatment uptake rates) and provide initial CI estimates of intervention effects. Thematic analysis of the qualitative interviews will assess the acceptability of the intervention and trial procedures.Ethics and disseminationThe trial has received ethical approval from the NHS Health Research Authority. Findings will be disseminated through peer-reviewed publications, conference presentations, and lay networks.Trial registration numberISRCTN85601537.

scholarly journals Reaching out for Help: Calls to a Mental Health Helpline Prior to and during the COVID-19 Pandemic

2021 ◽  
Vol 18 (9) ◽  
pp. 4505
Author(s):  
Josianne Scerri ◽  
Alexei Sammut ◽  
Sarah Cilia Vincenti ◽  
Paulann Grech ◽  
Michael Galea ◽  
...  
Keyword(s):  
Mental Health ◽  
Information Seeking ◽  
Information Needs ◽  
Medication Management ◽  
Health Issues ◽  
Health Crisis ◽  
Period 2 ◽  
National Mental Health ◽  
Restrictive Measures ◽  
Financial Issues

The COVID-19 pandemic is a major health crisis associated with adverse mental health consequences. This study examined 2908 calls made to a national mental health helpline over a 10 month period, 2 months prior to (Pre-COVID) and 8 months during the pandemic phase, that incorporated the imposition of a partial lockdown, followed by the removal and reintroduction of restrictive measures locally. Data collected included reason/s for call assistance, gender, age and number of daily diagnosed cases and deaths due to COVID-19. In the Pre-COVID phase, calls for assistance were related to information needs and depression. With the imposition of a partial lockdown, coupled with the first local deaths and spikes in number of diagnosed cases, a significant increase in number of calls targeting mental health, medication management and physical and financial issues were identified. Following the removal of local restrictions, the number of calls decreased significantly; however, with the subsequent reintroduction of restrictions, coupled with the rise in cases and deaths, assistance requested significantly targeted informational needs. Hence, whilst calls in the initial phase of the pandemic mainly targeted mental health issues, over time this shifted towards information seeking requests, even within a context where the number of deaths and cases had significantly risen.

scholarly journals Psychological Consequences of the Delay in the Silent Mentor Programme During the COVID-19 Pandemic: Perspectives From Family Members of Silent Mentors

2021 ◽  
pp. 003022282110009
Author(s):  
Li Ping Wong ◽  
Sik Loo Tan ◽  
Haridah Alias ◽  
Thiam Eng Sia ◽  
Aik Saw
Keyword(s):  
Mental Health ◽  
Qualitative Interviews ◽  
Psychological Impact ◽  
Family Members ◽  
Well Being ◽  
The Body ◽  
Functional Health ◽  
Psychological Consequences ◽  
Negative Effect ◽  
Health And Well Being

The COVID-19 pandemic has put a hold on the Silent Mentor Programme (SMP); this pause has not only caused unprecedented challenges for the delivery of medical education but has forced changes in the programme ceremony sessions. We aimed to describe the psychological impact and experiences of family members of silent mentors during the COVID-19 pandemic using qualitative interviews. Many expressed feelings of remorse and unrest about the unprecedented delay of the SMP. The delay increased negative emotions particularly among some elderly family members; however, there was no prominent negative effect on their functional health and well-being. Several participants relayed the belief that the soul cannot rest until the body receives a proper burial while some worried about the deterioration of the physical condition of the mentors. In conclusion, findings provide insights into the importance of not overlooking the mental health implications of delaying the SMP in future outbreaks or crises.

scholarly journals Improving the Quality of Children’s Mental Health Care with Progress Measures: A Mixed-Methods Study of PCIT Therapist Attitudes

2021 ◽  
Author(s):  
Corinna C. Klein ◽  
B. Erika Luis Sanchez ◽  
Miya L. Barnett
Keyword(s):  
Mental Health ◽  
Health Care ◽  
General Practice ◽  
Qualitative Interviews ◽  
Behavioral Observation ◽  
Parent Report ◽  
Therapist Attitudes ◽  
Child Interaction ◽  
Report Measure

AbstractProgress measures are an evidence-based technique for improving the quality of mental health care, however, clinicians rarely incorporate them into treatment. Research into how measure type impacts clinician preference has been recommended to help improve measure implementation. Parent–Child Interaction Therapy (PCIT) is an assessment-driven treatment that serves as an ideal intervention through which to investigate measure preferences given its routine use of two types of assessments, a behavioral observation (the Dyadic Parent–Child Interaction Coding System) and a parent-report measure (the Eyberg Child Behavior Inventory). This study investigated PCIT therapist attitudes towards progress measures used within PCIT and children’s mental health treatment generally. A mixed-method (QUAN + QUAL) study design examined PCIT therapist attitudes towards two types of progress measures and measures used in two contexts (PCIT and general practice). Multi-level modeling of a survey distributed to 324 PCIT therapists identified predictors of therapist attitudes towards measures, while qualitative interviews with 23 therapists expanded and clarified the rationale for differing perceptions. PCIT therapists reported more positive attitudes towards a behavioral observation measure, the DPICS, than a parent-report measure, the ECBI, and towards measures used in PCIT than in general practice. Clinician race/ethnicity was significantly related to measure-specific attitudes. Qualitative interviews highlighted how perceptions of measure reliability, type of data offered, ease of use, utility in guiding sessions and motivating clients, and embeddedness in treatment protocol impact therapist preferences. Efforts to implement progress monitoring should consider preferences for particular types of measures, as well as how therapists are trained to embed measures in treatment.

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