Colorectal cancer: a qualitative study of coping strategies used by survivors, with associated social determinants.

BACKGROUND: Colorectal cancer survivors have to develop coping strategies during the diagnosis and survivorship period. This study aims to identify coping strategies in patients with colorectal cancer, in particular the differences between coping strategies during the disease and throughout survival. It also aims to investigate the impact of some social determinants on coping strategies and critically reflect on the influence of positive psychology. METHODS: Qualitative study with in-depth interviews of a purposive sample of 21 colorectal cancer survivors in Majorca (Spain), developed between 2017-2019. Data was analysed using interpretive thematic analysis. RESULTS: We observed different coping strategies during the stages of disease and survival. However, striving toward acceptance and adaptation when facing difficulties and uncertainty, predominate in both stages. Confrontational attitudes are also considered important, as well as encouraging positive rather than negative feelings, which are considered unhelpful and to be avoided. CONCLUSIONS: Although coping during illness and survival can be classified into common categories (problem and emotion-centred strategies), the challenges of these stages are faced differently. Age, gender and the cultural influence of positive psychology strongly influence both stages and strategies.

Grandchildren of grandparents with Alzheimer's disease: Exploratory study of the impact of the disease on their relationships.

The aim of this study was to describe the perception of changes that Alzheimer's disease in grandparents has made to the relationship with their grandchildren of between 6 and 13. Qualitative methodology was used. Semi-structured interviews were carried out with 25 grandchildren living in Catalonia, Spain. Participants reported a change in roles from being the care receiver to being the caregiver, changes in the activities that they did together and a positive impact on the grandparent's emotional wellbeing. In the physical sphere, sleeping problems were reported in grandchildren that cohabited with their grandparents. The feelings they described include fear of not being recognized by their grandparents and sadness, as well as satisfaction resulting from their affection and participating in caring. These findings suggest the need to provide information and resources for grandchildren and their families to enable them to deal with the disease.

Living with gout. Experiences, impact and challenges of the disease. Qualitative study through focus groups.

OBJECTIVE: To delve into the experiences of people living with gout regarding its causes and triggers, recommended treatments and therapeutic measures, and the impact of living with this problem. SUBJECTS AND METHODS: Descriptive qualitative study. Opinion sampling, looking for discursive variability according to sex, age, socioeconomic position and treatments. Three focus groups were made with 11, 6 and 7 people, following a pre-established script of topics. Analysis following thematic content analysis procedures. RESULTS: Participants were 19 men and 5 women, of different ages, socioeconomic status and treatments. Frequent comorbidities: hypertension and hypercholesterolemia. Genetics and the lack of renal elimination of urate were mentioned as causes of gout. They reported little knowledge of the causes and need more explanations about them. As triggers of the attack they identified: excess food and/or alcohol, trauma, stress or not following the treatment. Various drug treatment and expressed concern about their possible adverse effects were listed. Difficulties in adherence to the recommendations were also described. Non-pharmacological measures: rest, cold, proper footwear, walking, drinking water, and diet were also described. Chronic gout has an important impact on the daily life of patients and their families. Pain invalidates and leads to difficulties in performing daily activities. Irritations and mood swings were reported, which affect their family relationships. CONCLUSIONS: These findings provide proposals to improve the care of people with gout. Information on its causes, the triggers of the crisis, dietary recommendations and exercise should be improved. The variability of treatments and recommendations on lifestyle should be analysed in depth.

Are we leaving someone behind? A critical discourse analysis on the understanding of public participation among people with experiences of participatory research.

Participatory research (PR) is on the rise. In Spain, PR is scarce in the field of health, although there is an increasing interest in the matter. A comprehensive understanding of the meanings and practical implications of "public participation" is essential to promote participation in health research. The aim of the study is to explore the discursive positions on PR among individuals with experience in participatory processes in different areas and how this understanding translates into practice. We conducted a critical discourse analysis of 21 individuals with experience in PR and participatory processes (13 women, 8 men), mainly from the field of health and other areas of knowledge. Sixteen were Spanish and the rest were from the United Kingdom (3), United States (1), and Canada (1). Interviews were conducted in person or by telephone. The fieldwork was conducted between March 2019 and November 2019. The dominant discourses on public participation are situated along two axes situated on a continuum: the purpose of public participation and how power should be distributed in public participation processes. The first is instrumental public participation, which sees participatory research as a tool to improve research results and focuses on institutional interests and power-decision making is hold by researchers and institutions. The second, is transformative public participation, with a focus on social change and an equitable sharing of decision-making power between the public and researchers. All discursive positions stated that they do not carry out specific strategies to include the most socially disadvantaged individuals or groups. A shift in the scientific approach about knowledge, along with time and resources, are required to move towards a more balanced power distribution in the processes involving the public.

Multiple health behaviour change primary care intervention for smoking cessation, physical activity and healthy diet in adults 45 to 75 years old (EIRA study): a hybrid effectiveness-implementation cluster randomised trial.

BACKGROUND: This study aimed to evaluate the effectiveness of a) a Multiple Health Behaviour Change (MHBC) intervention on reducing smoking, increasing physical activity and adherence to a Mediterranean dietary pattern in people aged 45-75 years compared to usual care; and b) an implementation strategy. METHODS: A cluster randomised effectiveness-implementation hybrid trial-type 2 with two parallel groups was conducted in 25 Spanish Primary Health Care (PHC) centres (3062 participants): 12 centres (1481 participants) were randomised to the intervention and 13 (1581 participants) to the control group (usual care). The intervention was based on the Transtheoretical Model and focused on all target behaviours using individual, group and community approaches. PHC professionals made it during routine care. The implementation strategy was based on the Consolidated Framework for Implementation Research (CFIR). Data were analysed using generalised linear mixed models, accounting for clustering. A mixed-methods data analysis was used to evaluate implementation outcomes (adoption, acceptability, appropriateness, feasibility and fidelity) and determinants of implementation success. RESULTS: 14.5% of participants in the intervention group and 8.9% in the usual care group showed a positive change in two or all the target behaviours. Intervention was more effective in promoting dietary behaviour change (31.9% vs 21.4%). The overall adoption rate by professionals was 48.7%. Early and final appropriateness were perceived by professionals as moderate. Early acceptability was high, whereas final acceptability was only moderate. Initial and final acceptability as perceived by the participants was high, and appropriateness moderate. Consent and recruitment rates were 82.0% and 65.5%, respectively, intervention uptake was 89.5% and completion rate 74.7%. The global value of the percentage of approaches with fidelity ≥50% was 16.7%. Eight CFIR constructs distinguished between high and low implementation, five corresponding to the Inner Setting domain. CONCLUSIONS: Compared to usual care, the EIRA intervention was more effective in promoting MHBC and dietary behaviour change. Implementation outcomes were satisfactory except for the fidelity to the planned intervention, which was low. The organisational and structural contexts of the centres proved to be significant determinants of implementation effectiveness. TRIAL REGISTRATION: ClinicalTrials.gov , NCT03136211 . Registered 2 May 2017, "retrospectively registered".

The impact of gout as described by patients, using the lens of The International Classification of Functioning, Disability and Health (ICF): a qualitative study.

BACKGROUND: The International Classification of Functioning, Disability and Health (ICF) aims to comprehensively describe the ways in which a person's health condition affects their life. This study aimed to contribute to the development of an ICF core set for gout through patient opinion derived from focus groups and interviews. METHODS: We conducted a secondary qualitative analysis of data from three studies investigating the patient experience of gout. In total there were 30 individual interviews and 2 focus groups (N = 17) comprising 47 participants. We conducted thematic analysis of the textual data to extract meaning units, which were then linked to the ICF. RESULTS: A large number of ICF categories were relevant to patients with gout. Participants mentioned 93 third level categories, 17 of which were mentioned by more than 50% of patients. The most references for a single category was for b280, Sensation of pain, followed by personal factors (not yet categorised by the ICF). The most participants mentioned the environmental factor e355, Health professional support, followed by b280, Sensation of pain. CONCLUSION: The categories identified in this study as relevant to patients with gout highlight the severe pain associated with this disease, the impact on mobility and corresponding life areas. The roles of health professional support, medication, and personal attitudes to disease management are also reflected in the data. These results will contribute to the development of the ICF core set for gout.

Qualitative evaluation of a community-based intervention to reduce social isolation among older people in disadvantaged urban areas of Barcelona.

This study analyses participants' and coordinators' perceptions of the implementation process and perceived benefits of a community-based intervention to reduce social isolation among older adults. The 'School of Health for Older People' is a weekly community intervention that promotes resources among individuals and communities in order to enhance their ability to identify problems and activate solutions, encouraging participation in the community. A qualitative approach was employed, based on semi-structured interviews and focus groups (FGs). This study was carried out in Barcelona. Two coordinators (community nurses) and 26 community-dwelling people aged 65 and over who attended the School of Health for Older People in the neighbourhoods of Besòs and Guineueta, participated in in-depth interviews and FGs between January and February 2016. Views and experiences about the intervention were explored. The main perceived effects of the intervention were expanding knowledge of health issues and of community activities, encouraging participants to go out, giving them a feeling of being heard, and peer relationships, increasing participants' contacts and knowledge while the main negative features were related to repetition of certain contents. The benefits identified included learning something about health and their own neighbourhood and breaking the habit of staying at home. Social isolation might be prevented by increasing the number of contacts with peers and sharing a common interest, since it could help to give them a sense of belonging to a community.

[Public participation in research projects: ways of creating collective knowledge in health]. / Participación pública en los proyectos de investigación: formas de crear conocimiento colectivo en salud.

Public participation in research projects is an emerging area in Spain and Latin American countries. There are five types of projects according to the degree of involvement that the participants have in the processes: contributory, collaborative, co-created, contractual and independent. In order to promote public participation in health research teams, their practices and competencies need to be redefined. To this end, it may be useful to ask questions in the different phases of the research, as well as to develop strategies that include audiences that have fewer channels of participation in favour of favouring equity in health. This way of doing science allows gathering experience and expertise prioritizing and adapting the research to the needs of the population, which increases its transforming capacity and the social impact of its results.

Effectiveness of a multidisciplinary BIOPSYCHOSOCIAL intervention for non-specific SUBACUTE low back pain in a working population: a cluster randomized clinical trial.

BACKGROUND: Low back pain (LBP) is a multifactorial condition with individual and societal impact that affects populations globally. Current guidelines for the treatment of LBP recommend pharmacological and non-pharmacological strategies. The aim of this study was to compare usual clinical practice with the effectiveness of a biopsychosocial multidisciplinary intervention in reducing disability, severity of pain and improving quality of life in a working population of patients with subacute (2-12 weeks), non-specific LBP. METHODS: Longitudinal cluster randomized clinical trial conducted in 39 Primary Health Care Centres (PHCC) of Barcelona, with patients aged 18-65 years (n = 501; control group = 239; 26 PHCC, intervention group = 262; 13 PHCC). The control group received usual clinical care. The intervention group received usual clinical care plus a biopsychosocial multidisciplinary intervention, which consisted of physiotherapy, cognitive-behavioural therapy and medication. The main outcomes were changes in the Roland Morris Disability Questionnaire (RMDQ), and the minimal clinically important differences. Secondary outcomes were changes in the McGill Pain (MGPQ) and Quality of Life (SF-12) questionnaires. Assessment was conducted at baseline, 3 and 12 months. Analysis was by intention-to-treat and analyst-blinded. Multiple imputations were used. RESULTS: Of the 501 enrolled patients, 421 (84%) provided data at 3 months, and 387 (77.2%) at 12 months. Mean age was 46.8 years (SD: 11.5) and 64.7% were women. In the adjusted analysis of the RMDQ outcome, only the intervention group showed significant changes at 3 months (- 1.33 points, p = 0.005) and at 12 months (- 1.11 points, p = 0.027), but minimal clinically important difference were detected in both groups. In the adjusted analysis of the RMDQ outcome, the intervention group improvement more than the control group at 3 months (- 1.33 points, p = 0.005) and at 12 months (- 1.11 points, p = 0.027). The intervention group presented a significant difference. Both groups presented a minimal clinically important difference, but more difference in the intervention group. The intervention group presented significant differences in the MGPQ scales of current pain intensity and VAS scores at 3 months. No statistically significant differences were found in the physical and mental domains of the SF-12. CONCLUSIONS: A multidisciplinary biopsychosocial intervention in a working population with non-specific subacute LBP has a small positive impact on disability, and on the level of pain, mainly at short-term, but no difference on quality of life. TRIAL REGISTRATION: ISRCTN21392091 (17 oct 2018) (Prospectively registred).

Qualitative evaluation of a complex intervention to implement health promotion activities according to healthcare attendees and health professionals: EIRA study (phase II).

OBJECTIVE: To evaluate the implementation and development of a complex intervention on health promotion and changes in health-promoting behaviours in primary healthcare according to healthcare attendees and health professionals. DESIGN: Descriptive qualitative evaluation research conducted with 94 informants. Data collection techniques consisted of 14 semistructured individual interviews, 9 discussion groups, 1 triangular group and 6 documents. Three analysts carried out a thematic content analysis with the support of Atlas.ti software. This evaluation was modelled on Proctor and colleagues' concept of outcomes for implementation research. SETTING: 7 primary care centres from seven Spanish regions: Andalusia, Aragon, Balearic Islands, Basque Country, Castilla-La Mancha, Castilla-Leon and Catalonia. PARTICIPANTS: The study population were healthcare attendees (theoretical sampling) and health professionals (opportunistic sampling) who had participated in the exploratory trial of the EIRA intervention (2015). RESULTS: Healthcare attendees and professionals had a positive perception of the study. Healthcare attendees even reported that they would recommend participation to family and friends. Health professionals became aware of the significance of the motivational interview, especially for health promotion, and emphasised social prescribing of physical activity. They also put forward recommendations to improve recruitment, screening and retention of participants. Healthcare attendees modified behaviours and health professionals modified working practices. To achieve sustainability, health professionals believe that it is crucial to adapt agendas and involve all the staff. CONCLUSIONS: The discourses of all stakeholders on the intervention must be taken into consideration for the successful, setting-specific implementation of adequate, acceptable, equitable and sustainable strategies aimed at health promotion and well-being.

[Public participation in research from the perspective of primary health care researchers]. / La participación ciudadana en la investigación desde la perspectiva de investigadores de atención primaria.

OBJECTIVE: Explore the strengths, weaknesses, opportunities and threats (SWOT) for development of public involvement in research by Institut Universitari d'Investigació en Atenció Primària Jordi Gol (IDIAPJGol) according to primary health care researchers in Catalonia (Spain). METHODS: Cross-sectional study carried out in 2017 with 36 primary health care research teams accredited by IDIAPJGol and its management staff. An open questionnaire (paper and online) was designed and piloted to develop a SWOT technique, and 65 answers were obtained (14 in paper and 51 online). A thematic content analysis was carried out. RESULTS: Most informants consider public involvement in research a useful, innovative, viable and essential strategy, but it requires a change of mentality and a move away from the hierarchical paradigm. It can be difficult to execute and can complicate studies. They are concerned about which citizens should be involve, how to select them, possible conflicts of interest and training needs. The main proposals for its implementation are to disseminate previous strategies, encourage motivation and synergies among citizens, researchers and institutions, and to clarify the roles of the actors involved. IDIAPJGol should develop recommendations for the public involvement in research, encourage their inclusion, have a mentor and advise the research teams. CONCLUSIONS: Despite the challenges, developing public involvement in research in primary health care is essential and feasible, what it is more should be based on a participatory strategy with all actors. The citizens can participate in any kind of design and phase of the research, adapting each project, being the primary health care a privileged area to develop the public involvement in research.

Coping Strategies and Social Support in a Mobile Phone Chat App Designed to Support Smoking Cessation: Qualitative Analysis.

BACKGROUND: Smoking is one of the most significant factors contributing to low life expectancy, health inequalities, and illness at the worldwide scale. Smoking cessation attempts benefit from social support. Mobile phones have changed the way we communicate through the use of freely available message-oriented apps. Mobile app-based interventions for smoking cessation programs can provide interactive, supportive, and individually tailored interventions. OBJECTIVE: This study aimed to identify emotions, coping strategies, beliefs, values, and cognitive evaluations of smokers who are in the process of quitting, and to analyze online social support provided through the analysis of messages posted to a chat function integrated into a mobile app. METHODS: In this descriptive qualitative study, informants were smokers who participated in the chat of Tobbstop. The technique to generate information was documentary through messages collected from September 2014 through June 2016, specifically designed to support a smoking cessation intervention. A thematic content analysis of the messages applied 2 conceptual models: the Lazarus and Folkman model to assess participant's experiences and perceptions and the Cutrona model to evaluate online social support. RESULTS: During the study period, 11,788 text messages were posted to the chat by 101 users. The most frequent messages offered information and emotional support, and all the basic emotions were reported in the chat. The 3 most frequent coping strategies identified were physical activity, different types of treatment such as nicotine replacement, and humor. Beliefs about quitting smoking included the inevitability of weight gain and the notion that not using any type of medications is better for smoking cessation. Health and family were the values more frequently described, followed by freedom. A smoke-free environment was perceived as important to successful smoking cessation. The social support group that was developed with the app offered mainly emotional and informational support. CONCLUSIONS: Our analysis suggests that a chat integrated into a mobile app focused on supporting smoking cessation provides a useful tool for smokers who are in the process of quitting, by offering social support and a space to share concerns, information, or strategies.

Correction to: Complex multiple risk intervention to promote healthy behaviours in people between 45 to 75 years attended in primary health care (EIRA study): study protocol for a hybrid trial.

It has been highlighted the original article (1) contained a typesetting mistake in the authorship, and that author Caterine Vicens was omitted.

Multimorbidity patterns with K-means nonhierarchical cluster analysis.

BACKGROUND: The purpose of this study was to ascertain multimorbidity patterns using a non-hierarchical cluster analysis in adult primary patients with multimorbidity attended in primary care centers in Catalonia. METHODS: Cross-sectional study using electronic health records from 523,656 patients, aged 45-64 years in 274 primary health care teams in 2010 in Catalonia, Spain. Data were provided by the Information System for the Development of Research in Primary Care (SIDIAP), a population database. Diagnoses were extracted using 241 blocks of diseases (International Classification of Diseases, version 10). Multimorbidity patterns were identified using two steps: 1) multiple correspondence analysis and 2) k-means clustering. Analysis was stratified by sex. RESULTS: The 408,994 patients who met multimorbidity criteria were included in the analysis (mean age, 54.2 years [Standard deviation, SD: 5.8], 53.3% women). Six multimorbidity patterns were obtained for each sex; the three most prevalent included 68% of the women and 66% of the men, respectively. The top cluster included coincident diseases in both men and women: Metabolic disorders, Hypertensive diseases, Mental and behavioural disorders due to psychoactive substance use, Other dorsopathies, and Other soft tissue disorders. CONCLUSION: Non-hierarchical cluster analysis identified multimorbidity patterns consistent with clinical practice, identifying phenotypic subgroups of patients.

Complex multiple risk intervention to promote healthy behaviours in people between 45 to 75 years attended in primary health care (EIRA study): study protocol for a hybrid trial.

BACKGROUND: Health promotion is a key process of current health systems. Primary Health Care (PHC) is the ideal setting for health promotion but multifaceted barriers make its integration difficult in the usual care. The majority of the adult population engages two or more risk behaviours, that is why a multiple intervention might be more effective and efficient. The primary objectives are to evaluate the effectiveness, the cost-effectiveness and an implementation strategy of a complex multiple risk intervention to promote healthy behaviours in people between 45 to 75 years attended in PHC. METHODS: This study is a cluster randomised controlled hybrid type 2 trial with two parallel groups comparing a complex multiple risk behaviour intervention with usual care. It will be carried out in 26 PHC centres in Spain. The study focuses on people between 45 and 75 years who carry out two or more of the following unhealthy behaviours: tobacco use, low adherence to the Mediterranean dietary pattern or insufficient physical activity level. The intervention is based on the Transtheoretical Model and it will be made by physicians and nurses in the routine care of PHC practices according to the conceptual framework of the "5A's". It will have a maximum duration of 12 months and it will be carried out to three different levels (individual, group and community). Incremental cost per quality-adjusted life year gained measured by the tariffs of the EuroQol-5D questionnaire will be estimated. The implementation strategy is based on the "Consolidated Framework for Implementation Research", a set of discrete implementation strategies and an evaluation framework. DISCUSSION: EIRA study will determine the effectiveness and cost-effectiveness of a complex multiple risk intervention and will provide a better understanding of implementation processes of health promotion interventions in PHC setting. It may contribute to increase knowledge about the individual and structural barriers that affect implementation of these interventions and to quantify the contextual factors that moderate the effectiveness of implementation. TRIAL REGISTRATION: ClinicalTrials.gov , NCT03136211 .Retrospectively registered on May 2, 2017.

Comparative analysis of methods for identifying multimorbidity patterns: a study of 'real-world' data.

OBJECTIVE: The aim was to compare multimorbidity patterns identified with the two most commonly used methods: hierarchical cluster analysis (HCA) and exploratory factor analysis (EFA) in a large primary care database. Specific objectives were: (1) to determine whether choice of method affects the composition of these patterns and (2) to consider the potential application of each method in the clinical setting. DESIGN: Cross-sectional study. Diagnoses were based on the 263 corresponding blocks of the International Classification of Diseases version 10. Multimorbidity patterns were identified using HCA and EFA. Analysis was stratified by sex, and results compared for each method. SETTING AND PARTICIPANTS: Electronic health records for 408 994 patients with multimorbidity aged 45-64 years in 274 primary health care teams from 2010 in Catalonia, Spain. RESULTS: HCA identified 53 clusters for women, with just 12 clusters including at least 2 diagnoses, and 15 clusters for men, all of them including at least two diagnoses. EFA showed 9 factors for women and 10 factors for men. We observed differences by sex and method of analysis, although some patterns were consistent. Three combinations of diseases were observed consistently across sex groups and across both methods: hypertension and obesity, spondylopathies and deforming dorsopathies, and dermatitis eczema and mycosis. CONCLUSIONS: This study showed that multimorbidity patterns vary depending on the method of analysis used (HCA vs EFA) and provided new evidence about the known limitations of attempts to compare multimorbidity patterns in real-world data studies. We found that EFA was useful in describing comorbidity relationships and HCA could be useful for in-depth study of multimorbidity. Our results suggest possible applications for each of these methods in clinical and research settings, and add information about some aspects that must be considered in standardisation of future studies: spectrum of diseases, data usage and methods of analysis.

Family caregiver mistreatment of the elderly: prevalence of risk and associated factors.

BACKGROUND: The detection of elder mistreatment is emerging as a public health priority; however, abusive behaviors exercised by caregivers are little known and rarely detected among primary health care professionals. This study aims to estimate the prevalence of risk of abuse against community-residing elderly with moderate to severe dependency whose caregivers are relatives. In addition, we aim to describe the association between such a risk and socio-demographic variables, cognitive and dependency state of the victim, and the scale of the caregiver's anxiety, depression, and burden. METHODS: Cross-sectional study developed in 72 Primary Health Care teams from Barcelona, Spain. Participants were caregivers and their dependent care recipients (N = 829). Home interviews included the Caregiver Abuse Screen (CASE); self-reported abuse from care recipient; activities of daily living and cognitive state of the care recipient; anxiety and depression in caregivers and Caregiver Burden Scale. The relationship prior to the dependency, positive aspects of caregiving, and social support for the caregiver were also assessed. Multivariate analysis was performed using logistic regression with risk of abuse as dependent variable. RESULTS: Caregivers were mainly women (82.8%) with a mean age of 63.3 years. Caregivers and care recipients lived in the same household in 87.4% of cases, and 86.6% had enjoyed a good previous relationship. Care recipients were women (65.6%), with a mean age of 84.2 years, and 64.2% had moderate to severe cognitive impairment. CASE demonstrated a prevalence of 33.4% (95% CI: 30.3-36.7) of abuse risk by the caregiver. Logistic regression showed as statistically significant: caregiver burden (OR = 2.75; 95% CI: 1.74-4.33), caregiver anxiety (OR = 2.06; 95% CI: 1.40-3.02), caregiver perception of aggressive behavior in the care recipient (OR = 7.24; 95% CI: 4.99-10.51), and a bad previous relationship (OR = 4.66; 95% CI: 1.25-17.4). CONCLUSIONS: Prevalence of risk of abuse is high among family caregivers. Our study has found risk factors in family caregivers that are preventable to an extent, namely: anxiety and feelings of burden. It is essential to become aware of these risk factors and their causes to intervene and help primary as well secondary prevention.

Talking to the people that really matter about their participation in pandemic clinical research: A qualitative study in four European countries.

BACKGROUND: Pandemics of new and emerging infectious diseases are unpredictable, recurrent events that rapidly threaten global health and security. We aimed to identify public views regarding provision of information and consent to participate in primary and critical care clinical research during a future influenza-like illness pandemic. METHODS: Descriptive-interpretive qualitative study, using focus groups (n = 10) and semi-structured interviews (n = 16), with 80 members of the public (>18 years) in Belgium, Spain, Poland and the UK. Local qualitative researchers followed a scenario-based topic guide to collect data. Data were transcribed verbatim, translated into English and subject to framework analysis. RESULTS: Public understandings of pandemics were shaped by personal factors (illness during the previous H1N1 pandemic, experience of life-threatening illness) and social factors (historical references, media, public health information). Informants appreciated safeguards provided by ethically robust research procedures, but current enrolment procedures were seen as a barrier. They proposed simplified enrolment processes for higher risk research and consent waiver for certain types of low-risk research. Decision making about research participation was influenced by contextual, research and personal factors. Informants generally either carefully weighed up various approaches to research participation or responded instinctively. They supported the principle of using routinely collected, anonymized clinical biological samples for research without explicit consent, but regarded this as less acceptable if researchers were motivated primarily by commercial gain. CONCLUSIONS: This bottom-up approach to ascertaining public views on pandemic clinical research has identified support for more proportionate research protection procedures for publically funded, low-risk studies.

Understanding knee osteoarthritis from the patients' perspective: a qualitative study.

BACKGROUND: No studies of Health Coach Interventions for knee OA sufferers that include patients' perspectives have been published. The study assesses current clinical practice and primary care professionals' advice from the patients' perspective, in order to obtain a participative design for a complex intervention based on coaching psychology. Moreover, wants to analyse the experiences, perceptions, cognitive evaluation, values, emotions, beliefs and coping strategies of patients with knee osteoarthritis, and secondly the impact of these factors in the Self-management of this condition. METHODS: It is an interpretative qualitative study. The study included patients with diagnosis of knee osteoarthritis (OA) from 4 primary health care centres in Barcelona. A theoretical sampling based on a prior definition of participants' characteristics was carried out. Ten semi-structured interviews with knee OA patients were carried out. A content thematic analysis was performed following a mixed-strategy text codification in Lazarus framework and in emerging codes from the data. RESULTS: The results are structured in two blocks: Experiences and perceptions of informants and Experiences of knee osteoarthritis according to the Lazarus model. Regarding experiences and perceptions of informants: Some participants reported that the information was mostly provided by health professionals. Informants know which food they should eat to lose weight and the benefits of weight loss. Moreover, participants explained that they like walking but that sometimes it is difficult to put into practice. Regarding experiences of knee osteoarthritis according Lazarus model: Cognitive evaluation is influenced by cognitive distortions such as obligation, guilt, dramatization and catastrophism. VALUES: Family is the value most associated with wellbeing. Helping others is another recurring value. Emotions: Most participants explain that they feel anxiety, irritability or sadness. Beliefs: To some, physiotherapy helps them feel less pain. However, others explain that it is of no use to them. Participants are aware of the association overweight- pain. Coping strategies: The strategies for coping with emotions aim to reduce psychological distress (anxiety, sadness, anger) and some are more active than others. CONCLUSIONS: The study highlights that patients with knee osteoarthritis require a person-centered approach that provides them with strategies to overcome the psychological distress caused by this condition.