Search

Introduction: There is growing scientific and policy recognition that optimising health before a potential pregnancy (preconception health) improves reproductive outcomes and the lifelong health of future children. However, public awareness on this topic is low. We conducted a public consultation to develop language recommendations and identify and prioritise approaches to inform research and improve public awareness of preconception health. Methods: A public consultation was undertaken with people of any gender aged 18–50 years living in the United Kingdom who were not currently expecting a child. Public contributors were recruited through patient and public involvement, community and support groups, an existing cohort study, and an LGBTQ+ charity. An initial round of online group discussions (February/March 2021) explored public contributors' knowledge of preconception health, their recommendations for appropriate language, and ideas about public health approaches. In a subsequent discussion round (May 2021), language recommendations were refined and suggested approaches prioritised. Discussions were summarised based on notes taken by two researchers. Results: Fifty‐four people joined the initial discussion round (66% women, 21% men, 13% nonbinary or transgender; 55% aged 18–30 years, 30% 31–40 years, 15% 41–50 years). Of these, 36 people (67%) participated in the subsequent round. Very few had heard the term 'preconception health', understood what it means, or why and for whom it is important. They recommended avoiding unfamiliar terms without further explanation (e.g., preconception health, medical terms), using language that is positive, encouraging and gender‐sensitive where possible, and using messages that are specific, nonjudgmental and realistic. The phrases 'health and well‐being during the childbearing years', 'health and well‐being before pregnancy and parenthood' and 'planning for parenthood' resonated with most public contributors. School‐based education, social media campaigns and the National Health Service emerged as priority approaches/settings for raising awareness. Conclusion: This public consultation produced recommendations from a diverse group of people of reproductive age in the United Kingdom to improve language and prioritise approaches that increase public understanding of preconception health in ways that are relevant and appropriate to them. This should begin in schools and will require adaptation of curricula, alongside co‐development of public awareness campaigns and guidance for healthcare professionals. Patient or Public Contribution: This public consultation included a diverse group of members of the public. They were not involved in the original design of the project, but following the initial round of online group discussions, they contributed to the interpretation and refinement of the emerging concepts in a subsequent round of group meetings. After the consultation activity, public contributors formed a Public Advisory Group and have subsequently been involved in other studies on the same topic. Two public contributors (E.R. and F.F.) provided critical input in the preparation and revision of this manuscript and are co‐authors of the paper. [ABSTRACT FROM AUTHOR]

Background: This study examines the perceptions of the Australian public canvassed in 2021 during the COVID‐19 pandemic about their health system compared to four previous surveys (2008, 2010, 2012 and 2018). Methods: In 2021, a nationwide online survey was conducted with a representative sample of Australians (N = 5100) recruited via market research panels. The results were compared to previous nationwide Australian survey samples from 2018 (N = 1024), 2012 (N = 1200), 2010 (N = 1201) and 2008 (N = 1146). The survey included questions consistent with previous polls regarding self‐reported health status and overall opinions of, and confidence in, the Australian health system. Results: There was an increase in the proportion of respondents reporting positive perceptions at each survey between 2008 and 2021, with a significantly higher proportion of respondents expressing a more positive view of the Australian healthcare system in 2021 compared to previous years (χ2(8, N = 9645) = 487.63, p < 0.001). In 2021, over two‐thirds of respondents (n = 3949/5100, 77.4%) reported that following the COVID‐19 pandemic, their confidence in the Australian healthcare system had either remained the same (n = 2433/5100, 47.7%) or increased (n = 1516/5100, 29.7%). Overall, respondents living in regional or remote regions, younger Australians (< 45 years) and women held less positive views in relation to the system. In 2021, the most frequently identified area for urgent improvement was the need for more healthcare workers (n = 1350/3576, 37.8%), an area of concern particularly for Australians residing in regional or remote areas (n = 590/1385, 42.6%). Conclusions: Irrespective of disruptions to the Australian healthcare system caused by the COVID‐19 pandemic, Australians' perceptions of their healthcare system were positive in 2021. However, concerns were raised about inadequate workforce capacity and the cost of healthcare, with differences identified by age groups and geographical location. Patient or Public Contribution: Health consumer representatives from the Consumers Health Forum of Australia contributed to the co‐design, deployment, analysis and interpretation of the results of this survey. J.A. and L.W. from the Consumers Health Forum of Australia contributed to the development of the paper. [ABSTRACT FROM AUTHOR]

Background: Meaningful involvement of adolescents in health research is their fundamental human right and has many benefits. A lack of awareness among researchers on how to meaningfully involve adolescents in health research has been linked to adolescent under involvement in health research. To address this barrier, studies have reported the need for more guidance. To inform the development of better guidelines on adolescent involvement, there is a need to first consolidate the currently available guidance on adolescent involvement in health research and to identify the gaps in these guidelines. This review aims to systematically identify all the currently available guidelines on adolescent involvement in health research and evaluate their scope, content, context, and quality. Methods: This rapid review was pre‐registered with PROSPERO #CRD42021293586. It included documents that incorporated tangible recommendations on the involvement of adolescents in health research. We searched six databases for peer‐reviewed literature: MEDLINE, CINAHL, Embase, Scopus, Web of Science, and ERIC. We conducted a grey literature search in Google Scholar, Google, websites of 472 relevant organisations and sought expert input. The quality of the guidelines was assessed using the Appraisal of Guidelines for REsearch & Evaluation (AGREE‐II) Instrument. Data was analysed using descriptive analyses and narrative synthesis. Results: We found that the current guidelines on adolescent involvement in health research are often narrow in scope, targeting specific users and populations while focusing on limited research areas. The guidelines individually fail to provide comprehensive coverage of recommendations across all topics related to adolescent research involvement, that are collectively addressed across all included guidelines. Furthermore, these guidelines tend to be context‐specific and are generally of low quality, often due to inadequate stakeholder involvement and a lack of rigorous development methods. Conclusion: This review provides a consolidated list of guidelines on adolescent involvement in health research along with their quality scores as a resource for researchers to select the guidelines suitable for their research topic, context, and scope for adolescent involvement. There is a need to develop a set of guidelines on adolescent involvement in research, which are comprehensive in scope, cover all key aspects of adolescent involvement in health research, can be adapted for different contexts, and which are based on rigorous and systematic methods. Patient and Public Involvement: Adolescent co‐researchers D. B. and C. W. were involved at different stages of the review process. D. B. screened 25% of the peer‐reviewed articles at the title and abstract screening stage and 10% at full‐text screening stage. C. W. extracted data from 10% of the included guidelines. Both co‐researchers reviewed and shared their feedback on the article and are co‐authors on this paper. They will also be invited to contribute to further dissemination of the findings from this review. [ABSTRACT FROM AUTHOR]

Introduction: Already in its first implementation, the introduction of the Covid‐19 immunity certificate has generated some debate among the public. This debate might be a hindrance to the effective realization of this policy. This study aimed to systematically review published research evaluating public feeling of the Covid‐19 immunity certificate policy measure and to find which factors might influence its acceptance. Methods: We followed the scoping review methods manual by the Joanna Briggs Institute. We included studies with no time limits that presented novel data, and no exclusions have been made based on study design. We excluded articles that presented just expert opinions. Results: We found and reviewed 17 articles. The included studies were conducted in two main countries (the United Kingdom and Switzerland), with the rest from Israel, Italy, Spain, Germany, Australia, Taiwan and China. Both qualitative and quantitative studies were included, and nonrepresentative samples were mostly used to explore the public feeling about the Covid‐19 immunity certification. The included studies showed that public views on immunity certification are quite contradictory and influenced by age, gender, ethnicity, political orientation and attitudes towards Covid‐19 vaccination. The topic more often addressed by the included studies was the public's views on the positive and negative implications of the Covid‐19 immunity certificate in terms of ethical, legal and behavioural consequences of this measure. Conclusion: The varying acceptance rates are notable and may partly be linked to differences in demographics, Covid‐19 concerns and ideological beliefs, as seen in other health‐related tracking policies. Moreover, dominant factors behind the (un)success of this policy are complex and entangled with the cultural and political dimensions rather than being just technical. For this reason, it is important to expand psychosocial research to better understand the concerns behind health certifications and allow planning of culturally based and ethically sound suitable strategies. This would be very relevant to increasing public approval and compliance with this public health measure. Patient or Public Contribution: This does not apply to our work as it was a review paper. [ABSTRACT FROM AUTHOR]

Background: Patient satisfaction has been seen as a key criterion when evaluating hospitals and is one of the main focuses of the current health‐care reform in China. This paper aimed to explore patient‐ and hospital‐level factors associated with inpatient satisfaction, which can provide policy implications for the evaluation and development of a patient‐oriented health‐care system. Methods: The paper analyses data from the 2017 China National Patient Survey which includes 20 300 inpatients from 131 tertiary hospitals across 31 provinces. Descriptive analysis and multivariable logistic regressions are conducted to identify key factors related to satisfaction. Results: Patient sociodemographic characteristics, including gender, age, income and insurance type, are found to be strongly associated with their satisfaction of inpatient experience. In terms of institutional characteristics, hospital type, size, staffing and financial performance are also significantly correlated with inpatient satisfaction. Patients are more satisfied with specialist hospitals and large hospitals measured by the number of beds and surgeries. Hospitals with higher nurse‐to‐bed ratio also receive more satisfaction. The financial performance of hospitals, however, is negatively associated with satisfaction. Conclusion: Patient satisfaction contains unique information on service quality and thus should be incorporated into the matrix of hospital evaluation. Meanwhile, differences in patient composition must be adjusted to make fair comparisons across hospitals. Moreover, future reform needs to put greater efforts in the design of comprehensive public insurance scheme, efficient hospital structure and an overall well‐functioning health‐care delivery system in order to better serve patients in China. [ABSTRACT FROM AUTHOR]

Objective: To report on the findings of a systematic review which examined the experiences and views of older people aged 65 years and over on health professionals’ recognition of sexuality and sexual health and whether these aspects of the person are incorporated into care. Review methods: The review followed the methods laid out by the Joanna Briggs Institute. Eleven electronic databases were searched using the terms sexual*, aged, ageing/aging, attitudes and care in any health‐care setting. Only quantitative and qualitative research and opinion papers written in English and offering unique commentary published between January 2004 and January 2015 were eligible. Results: A total of 999 papers were initially identified and of these, 148 were assessed by two reviewers. Eighteen studies – seven quantitative, eight qualitative and three opinion papers – met the inclusion criteria and were appraised. The importance of sexuality to well‐being, language used, expressing sexuality, discomfort discussing sexuality, inadequate sexuality health education and treatment and deficient communication with health‐care professionals were all identified as significant issues in a range of settings. Fourteen categories and five syntheses summarize the 43 findings. Conclusions: Sexuality remains important for many older people; however, embarrassment, dissatisfaction with treatment, negative attitudes and seeming disinterest by health professionals can all inhibit discussions. Professionals and health‐care services need to adopt strategies and demonstrate characteristics which create environments that are more supportive of sexuality. Issues related to sexuality and sexual health should be able to be discussed without anxiety or discomfort so that older people receive optimal care and treatment. [ABSTRACT FROM AUTHOR]

Background: This paper is a follow‐up study continuing the COVISTRESS network previous research regarding health‐related determinants. Objective: The aim was to identify the main consequences of COVID‐19 lockdown on Body MassIndex and Perceived Fragility, related to Physical Activity (PA), for different categories of populations, worldwide. Design: The study design included an online survey, during the first wave of COVID‐19 lockdown, across different world regions. Setting and participants: The research was carried out on 10 121 participants from 67 countries. The recruitment of participants was achieved using snowball sampling techniques via social networks, with no exclusion criteria other than social media access. Main outcome measures: Body MassIndex, Physical Activity, Perceived Fragility and risk of getting infected items were analysed. SPSS software, v20, was used. Significance was set at P <.05. Results: Body MassIndex significantly increased during lockdown. For youth and young adults (18‐35 years), PA decreased by 31.25%, for adults (36‐65 years) by 26.05% and for the elderly (over 65 years) by 30.27%. There was a high level of Perceived Fragility and risk of getting infected for female participants and the elderly. Correlations between BMI, Perceived Fragility and PA were identified. Discussion and Conclusions: The research results extend and confirm evidence that the elderly are more likely to be at risk, by experiencing weight gain, physical inactivity and enhanced Perceived Fragility. As a consequence, populations need to counteract the constraints imposed by the lockdown by being physically active. [ABSTRACT FROM AUTHOR]

Context The paper refers to the increased competition between health care providers and the need for patient-centred services in Greece. Using service quality methodology, this paper investigates service quality perceptions of patients in Greek public primary health centres. Objective To test the internal consistency and applicability of SERVQUAL in primary health care centres in Greece. Strategy SERVQUAL was used to examine whether patients have different expectations from health care providers and whether different groups of patients may consider some dimensions of care more important than others. Results The analysis showed that there were gaps in all dimensions measured by SERVQUAL. The largest gap was detected in empathy. Further analysis showed that there were also differences depending on gender, age and education levels. A separate analysis of expectations and perceptions revealed that this gap was because of differences in patients' perceptions rather than expectations. Discussion and conclusions This paper raises a number of issues that concern the applicability of SERVQUAL in health care services and could enhance current discussions about SERVQUAL improvement. Quality of health care needs to be redefined by encompassing multiple dimensions. Beyond a simple expectations-perceptions gap, people may hold different understandings of health care that, in turn, influence their perception of the quality of services. [ABSTRACT FROM AUTHOR]

Introduction: Women and those with younger onset Parkinson's Disease (YOPD) are typically diagnosed later and face unique situations and challenges. This essay aims to raise awareness of the difficulties in diagnosing YOPD and the need for a personalised approach to care for women with YOPD. Methods: Two professional women with YOPD (academic physiotherapist and practicing dentist) and a female neurologist (clinician academic) came together to write a narrative essay on their personal experience and perspectives in relation to women and YOPD. Results: The essay outlines how the experience of diagnosis is likened to a complex puzzle box with many interlocking components that are hidden and difficult to solve. The concerns of the women about their identity, work, family and the future, with most supports targeting those that are older and retired are outlined. Conclusion: It is concluded that YOPD is a complex puzzle to solve, but can be done by understanding all the intricate interlocking components of the puzzle and combined with greater awareness could lead to earlier diagnosis and the delivery of successful person‐centred care. Patient or Public Contribution: People with lived experience were involved in the essay conception and writing. [ABSTRACT FROM AUTHOR]

Objective: This paper investigates the change through time in the perception of smoking‐related health harm and smoking behaviour from 1949 to 1981. Background and context: A variety of common behaviours can be linked to chronic disease risk—smoking, over‐eating, and excessive sitting, to name a few. Changing behaviours to reduce exposure to such risks can be an effort that spans generations and decades. Setting and participants: Respondents to Gallup Poll surveys in the United States from 1949, 1954, 1957, 1971, 1972, 1977 and 1981. Methods: Graphical analysis and probit regression are used to investigate trends through time and statistical associations of smoking with the perception of smoking‐related health risks and other socio‐demographic variables. Intervention and main variable studied: Perceived smoking health risk. Main outcome measure: Smoking participation. Results and conclusion: Our findings include the proportions of individuals who were self‐reported smokers fell between 1949 and 1981, from 0.48 to 0.34. Among smokers, the proportion who believed smoking was harmful increased from 0.52 in 1949 to 0.81 in 1981. By 1981, the proportion of non‐smokers who believed smoking was harmful was 0.98. A negative association between belief in smoking harm and the decision to smoke was shown in regression analysis. This association became more pronounced over the three decades under study. [ABSTRACT FROM AUTHOR]

Introduction: While screening uptake is variable, many individuals feel they 'ought' to participate in screening programmes to aid the detection of conditions amenable to early treatment. Those not taking part in screening are often presented as either hindered by practical or social barriers or personally at fault. Why some people choose not to participate receives less consideration. Methods: We explored screening nonparticipation by examining the accounts of participants who chose not to participate in screening offered by a national research trial of atrial fibrillation (AF) screening in England (SAFER: Screening for Atrial Fibrillation with ECG to Reduce stroke). AF is a heart arrhythmia that increases in prevalence with age and increases the risk of stroke. Systematic screening for AF is not a nationally adopted programme within the United Kingdom; it provides a unique opportunity to explore screening nonparticipation outside of the norms and values attached to existing population‐based screening programmes. We interviewed people aged over 65 (n = 50) who declined an invitation from SAFER and analysed their accounts thematically. Results: Beyond practical reasons for nonparticipation, interviewees challenged the utility of identifying and managing AF earlier. Many questioned the benefits of screening at their age. The trial's presentation of the screening as research made it feel voluntary—something they could legitimately decline. Conclusion: Nonparticipants were not resistant to engaging in health‐promoting behaviours, uninformed about screening or unsupportive of its potential benefits. Instead, their consideration of the perceived necessity, legitimacy and utility of this screening shaped their decision not to take part. Patient or Public Contribution: The SAFER programme is guided by four patient and carer representatives. The representatives are embedded within the team (e.g., one is a co‐applicant, another sits on the programme steering committee) and by participating in regular meetings advise on all aspects of the design, management and delivery of the programme, including engaging with interpreting and disseminating the findings. For the qualitative workstream, we established a supplementary patient and public involvement group with whom we regularly consult about research design questions. [ABSTRACT FROM AUTHOR]

Background: Cancer care trajectories are often complex, with potent multimodality treatments and multiple interactions with health care providers. Communication and coordination are challenging and the patients' responsibilities to take on more active roles in their own care are increasing. Objective: This study aimed to investigate associations between patient activation level and participation in cancer care, sociodemographic characteristics, clinical data, health‐related quality of life (HRQoL) and helpfulness of received information. Methods: In this cross‐sectional population‐based study, patients completed questionnaires on patient activation, perceived participation, HRQoL, helpfulness of received information and sociodemographic characteristics. Responses to the patient activation measures (PAMs) were classified into four levels (higher levels indicating more activation). Data on age, sex and cancer diagnosis were collected from the Swedish Cancer Register. Results: Data from 682 patients were analysed. On comparing patients at PAM levels 1 and 4, the latter reported significantly higher possibilities to influence care decisions (46.6% vs. 20.8%) and to ask questions regarding treatment and care (93.4% vs. 68.4%). Patients at PAM level 4 reported wanting to influence decision‐making to a higher extent, compared with patients at other PAM levels, and reported clinically significantly higher HRQoL. No significant differences were found regarding sociodemographic characteristics. Conclusion: We found strong associations between perceived patient participation and activation levels, with limited possibility for participation among those with lower activation levels. Patient or Public Contribution: Discussions with patient representatives have raised the importance of participation. The preliminary findings were presented and discussed in a workshop with representatives from 21 cancer patient advocacy groups. [ABSTRACT FROM AUTHOR]

Objectives: This study aimed to explore the impact of the coronavirus disease 2019 (COVID‐19) pandemic on self‐care of individuals living with rheumatoid arthritis (RA). Methods: Guided by a constructivist, qualitative design, we conducted one‐to‐one in‐depth telephone interviews between March and October 2020 with participants with RA purposively sampled for maximum variation in age, sex and education, who were participating in one of two ongoing randomized‐controlled trials. An inductive, reflexive thematic analysis approach was used. Results: Twenty‐six participants (aged 27–73 years; 23 females) in British Columbia, Canada were interviewed. We identified three themes: (1) Adapting to maintain self‐care describes how participants took measures to continue self‐care activities while preventing virus transmissions. While spending more time at home, some participants reported improved self‐care. (2) Managing emotions describes resilience‐building strategies such as keeping perspective, positive reframing and avoiding negative thoughts. Participants described both letting go and maintaining a sense of control to accommodate difficulties and emotional responses. (3) Changing communication with health professionals outlined positive experiences of remote consultations with health professionals, particularly if good relationships had been established prepandemic. Conclusion: The insights gained may inform clinicians and researchers on ways to support the self‐care strategies of individuals with RA and other chronic illnesses during and after the COVID‐19 pandemic. The findings reveal opportunities to further examine remote consultations to optimize patient engagement and care. Patient or Public Contribution: This project is jointly designed and conducted with patient partners in British Columbia, Canada. Patient partners across the United Kingdom also played in a key role in providing interpretations of themes during data analysis. [ABSTRACT FROM AUTHOR]

Abstract: Background: We explore the concept of “untimely diagnosis,” where the onset of a long‐term condition occurs at a life stage which does not conform to traditional expectations, focusing on two conditions (asthma and arthritis) typically associated with a particular life stage (childhood and older adulthood, respectively). Previous literature has focused on the meaning of chronic illness in terms of life history, and the biographical lens has been used in various ways to make sense of the experience. Less attention has been paid to the condition onset when it seems dissonant with chronological age. Methods: Secondary analysis of two qualitative data sets (total 58 interviews) exploring the experiences of people with adult‐onset asthma and young people diagnosed with arthritis. Data from the original interview transcripts relating to diagnosis and symptom recognition were re‐analysed using a “candidacy” framework to examine how age and diagnosis intersect. Results: People did not always assert their candidacy for either condition because of pre‐conceived expectations around age. Similarly, health professionals sometimes failed to recognize patients’ candidacy, instead pursuing “age‐plausible” possibilities. In some cases, participants were proactive in suggesting a diagnosis to the health professional where diagnosis was delayed. Conclusion: The diagnosis of adult‐onset asthma, and arthritis in young people, may be regarded as “untimely.” We suggest that being diagnosed with what is perceived to be a “childhood” condition in adulthood, or “an older person's” condition in childhood, may be viewed as a “biographical paradox” and an “untimely breach” to the expected order. [ABSTRACT FROM AUTHOR]

Background and objective Although trials continue to emerge supporting the role of telerehabilitation, implementation has been slow. Key users include older people living with disabilities who are frequent users of hospital rehabilitation services but whose voices are rarely heard. It is unclear whether the use of technologies and reduced face-to-face contact is acceptable to these people. We report on a qualitative study of community dwelling participants who had received a home telerehabilitation programme as an alternative to conventional rehabilitation. Design Thirteen older participants, three spouses and one carer were interviewed. All had participated in an individualized therapy programme, using a combination of face-to-face and video consults with therapists. The programme used 'off-the-shelf' technologies including i Pads for videoconferencing and electronic Fit BitR devices. Interviews were recorded, transcribed verbatim and analysed using NVivo software. Results Thematic analysis resulted in five emergent themes: (i) telerehabilitation is convenient; (ii) telerehabilitation promotes motivation and self-awareness; (iii) telerehabilitation fosters positive therapeutic relationships; (iv) mastering technologies used by younger relatives is a valued aspect of telerehabilitation; and (v) Telerehabilitation does not replace traditional face-to-face rehabilitation therapies. Conclusions Participants found telerehabilitation convenient and motivating, coped well with the technology and developed positive therapeutic relationships. The learning and practice aspects sat well in the context of a rehabilitation programme. The use of commercially available technologies may have contributed to respondents' high levels of acceptability. The perception of telerehabilitation as complementary to in-person care and the expectation of technological support have implications for the implementation and delivery of telerehabilitation services to older people. [ABSTRACT FROM AUTHOR]

Introduction Young people with eating disorders are at risk of harm to their social, emotional and physical development and life chances. Although they can be reluctant to seek help, they may access social media for information, advice or support. The relationship between social media and youth well-being is an emotive subject, but not clearly understood. This qualitative study aimed to explore how young people used a youth-orientated, moderated, online, eating disorders discussion forum, run by an eating disorders charity. Methods We applied a netnographic approach involving downloading and thematically analysing over 400 messages posted August- November 2012. Results Data analysis generated five themes: Taking on the role of mentor; the online discussion forum as a safe space; Friendship within the online forum; Flexible help; and Peer support for recovery and relapse prevention. Forum moderation may have influenced the forum culture. Discussion Our findings are consistent with literature about youth preferences for mental health self-care support. A young person's decision to use this discussion forum can be construed as pro-active self-care. A moderated online discussion forum can make a positive contribution to support for youth with eating disorders, countering negative media perceptions of online groups. Conclusion This study adds to knowledge about how young people access support via social media. Online discussion forums can be safe and acceptable spaces for youth to access help. Further research could provide insights into the impact of forum moderation. [ABSTRACT FROM AUTHOR]

Background: Research on workforce development for high‐quality dementia care more often focuses on enhancing employee knowledge and skill and less on managing employee stress and coping at work. Objective: To review employee stress and coping in response to high job demands in community‐based dementia care organizations in Tasmania, Australia. Methods: Stress and coping in response to job roles of 25 community‐based dementia care workers were reviewed using self‐report questionnaire data. Data were analysed for descriptive results and at an individual case level. Individual participant scores were reviewed for clinically significant stress and coping factors to create worker profiles of adjustment. Results: Two adjustment profiles were found. The ‘global resilience’ profile, where workers showed positive adjustment and resilience indicating they found their jobs highly rewarding, were very confident in their abilities at work and had a strong match between their personal and organizational values. The second ‘isolated distress’ profile was only found in a minority and included poor opportunities for job advancement, a missmatch in personal and work values or clinically high levels of psychological distress. Conclusion: Aged care workplaces that advocate employee well‐being and support employees to cope with their work roles may be more likely to retain motivated and committed staff. Future research should consider employee stress and coping at the workforce level, and how this can influence high‐quality care delivery by applying the measures identified for this study. Comparative research across different care settings using meta‐analytic studies may then be possible. [ABSTRACT FROM AUTHOR]

Background: Various north ‐ western European health ‐ care systems encourage patients to make an active choice of health ‐ care provider. This study explores, qualitatively, patients' hospital selection processes and provides insight into the reasons why patients do or do not make active choices. Methods: Semi ‐ structured individual interviews were conducted with 142 patients in two departments of three Dutch hospitals. Interviews were recorded, transcribed and analysed in accordance with the grounded theory approach. Results: Three levels of choice activation were identified – passive, semi ‐ active and active. The majority of the patients, however, visited the default hospital without having used quality information or considered alternatives. Various factors relating to patient, provider and health ‐ care system characteristics were identified that influenced patients' level of choice activation. On the whole, the patients interviewed could be classified into five types with regard to how they chose, or ‘ended up at’ a hospital. These types varied from patients who did not have a choice to patients who made an active choice. Conclusions: A large variation exists in the way patients choose a hospital. However, most patients tend to visit the default without being concerned about choice. Generally, they do not see any reason to choose another hospital. In addition, barriers exist to making choices. The idea of a patient who actively makes a choice originates from neoclassical microeconomic theory. However, policy makers may try in vain to bring principles originating from this theory into health care. Even so, patients do value the opportunity of attending ‘their’ own hospital. [ABSTRACT FROM AUTHOR]

The article presents the study on the health and services usage among old age Australian war veterans who are receiving health care support from the Australian government. Qualitative data gathering was designed and provide information on the group's community living, utilization of services, and the perceived burden of their family members and friends. Results were outlined and conclude the participants valuation of control to maximize and maintain their independence in their daily living.

The article presents a study which aims to examine the opinions of aged care residents with mild cognitive decline and their families about interdisciplinary student placements in the residential aged care facilities (RACF) in Tasmania. The study used a mixed methods design and participants have completed a questionnaire on the quality of life of residents. Results showed that different benefits of students provided care in RACFs had experienced by residents and their families.

Background: Decision making is integral to genetic counselling and the premise is that autonomous decisions emerge if patients are provided with information in a non‐directive manner. The pivotal activity in antenatal diagnosis counselling with at‐risk pregnant women is decision making regarding invasive procedures. This process is not well understood in multicultural settings. Objective: This study examined multicultural genetic counselling interactions with women of advanced maternal age (AMA). It aimed to investigate the participants' orientation towards the amniocentesis decision. Design: Data were collected during 14 video‐recorded consultations between six genetic counsellors and 14 women of AMA in a genetic counselling clinic in South Africa. The design was qualitative and conversation analysis was used for analysis. Results: Analysis revealed that counsellors used several strategies to facilitate discussions and decision making. However, the invitation to make a decision regarding amniocentesis was not perceived as being neutral. Both the counsellors and the women appeared to treat the offer as one which should be accepted. This resulted in a paradox, as strategies intended to allow neutral discussion seem to achieve the opposite. It is suggested that these results may be linked to the local health‐care setting. Conclusion: The results suggest that the understanding of decision‐making processes and enhancing autonomy may require a more detailed investigation into psychosocial, political and historical factors in the local health‐care setting. Models of practice as well as the training of genetic counsellors need to be sensitive to these influences. A closer examination of interactional variables may yield new and relevant insights for the profession. [ABSTRACT FROM AUTHOR]

Purpose: To develop and validate scales to measure constructs that survivors of childhood cancer report as barriers and/or facilitators to the process of transitioning from paediatric to adult‐oriented long‐term follow‐up (LTFU) care. Methods: Qualitative interviews provided a dataset that were used to develop items for three new scales that measure cancer worry, self‐management skills and expectations about adult care. These scales were field‐tested in a sample of 250 survivors aged 15–26 years recruited from three Canadian hospitals between July 2011 and January 2012. Rasch Measurement Theory (RMT) analysis was used to identify the items that represent the best indicators of each scale using tests of validity (i.e. thresholds for item response options, item fit statistics, item locations, differential item function) and reliability (Person Separation Index). Traditional psychometric tests of measurement performance were also conducted. Results: RMT led to the refinement of a 6‐item Cancer Worry scale (focused on worry about cancer‐related issues such as late effects), a 15‐item Self‐Management Skills scale (focused on skills an adolescent needs to acquire to manage their own health care), and a 12‐item Expectations scale (about the nature of adult LTFU care). Our study provides preliminary evidence about the reliability and validity of these new scales (e.g. Person Separation Index ≥ 0.81; Cronbach's α ≥ 0.81; test–retest reliability ≥ 0.85). Conclusion: There is limited knowledge about the transition experience of childhood cancer survivors. These scales can be used to investigate barriers survivors face in the process of transition from paediatric to adult care. [ABSTRACT FROM AUTHOR]

Background: Age and race‐related disparities in technology use have been well documented, but less is known about how health literacy influences technology access and use. Objective: To assess the association between patients’ literacy skills and mobile phone ownership, use of text messaging, Internet access, and use of the Internet for health‐related purposes. Methods: A secondary analysis utilizing data from 1077 primary care patients enrolled in two, multisite studies from 2011–2013. Patients were administered an in‐person, structured interview. Results: Patients with adequate health literacy were more likely to own a mobile phone or smartphone in comparison with patients having marginal or low literacy (mobile phone ownership: 96.8 vs. 95.2 vs. 90.1%, respectively, P < 0.001; smartphone ownership: 70.6 vs. 62.5 vs. 40.1%, P < 0.001) and to report text messaging (78.6 vs. 75.2 vs. 53.1%, P < 0.001). They were also more likely to have access to the Internet from their home (92.1 vs. 74.7 vs. 44.9%, P < 0.001) and to report using the Internet for email (93.0 vs. 75.7 vs. 38.5%, P < 0.001), browsing the web (93.9 vs. 80.2 vs. 44.5%, P < 0.001), accessing health information (86.3 vs. 75.5 vs. 40.8%, P < 0.001), and communicating with providers (54.2 vs. 29.8 vs. 13.0%, P < 0.001). Relationships remained significant in multivariable analyses controlling for relevant covariates. Conclusions: Results reveal that literacy‐related disparities in technology access and use are widespread, with lower literate patients being less likely to own smartphones or to access and use the Internet, particularly for health reasons. Future interventions should consider these disparities and ensure that health promotion activities do not further exacerbate disparities. [ABSTRACT FROM AUTHOR]

The article presents a study which aims to compare discrete choice experiment (DCE) and constant- sum paired comparison (CSPC) methods for eliciting societal preferences. The researchers detail the methodology and procedures in data gathering to compare outcomes. It implies that CSPC may offer advantages over DCE in eliciting societal preferences over the distribution of resources and/or outcomes.

The article presents the research that investigates the drivers of patient satisfaction in the primary care setting in Great Britain. The topics discussed include the correlation between patient experience and their overall satisfaction and approaches in determining the healthcare priorities and preferences of patients.

The article presents the research that investigates the implications of patients' varied information requirements and socio-demographic attributes on their choice of healthcare institutions in Great Britain. The topics discussed include the factors that influence patients' choice of hospitals and the reasons why some patients decided to switch hospitals and healthcare providers.

Purpose: To determine whether the forecasted assessment of how someone would feel in a future health state can be predictive of utilities (e.g. as elicited by the time‐trade‐off method) and also predictive of optimal decisions as determined by a decision‐analytic model. Methods: We elicited time‐trade‐off utilities for prostate cancer treatment outcomes from 168 men. We also elicited forecasted assessments, that is, an informal, non‐quantitative, descriptive evaluation, of impotence and incontinence from these men. We used multivariate regression analysis to explore the relationship between forecasted assessment and reluctance to trade length for improved quality of life, that is, the unwillingness to trade length of life for improved quality of life in the time‐trade‐off utility assessment and the relationship between the forecasted assessments and the optimal decision of whether to undergo screening for prostate cancer as determined from a previously published decision‐analytic model. Results: Importance of sexual function was strongly related to impotence utilities (P < 0.05). Based on the multivariate analysis, significant predictors for the utility of severe incontinence were family income, family history of prostate cancer, work status and attitude towards needing to wear an incontinence pad. However, no variables were statistically significant predictors for the utility of complete impotence. The importance of sexual functioning was a significant predictor of the optimal decision. Conclusion: Anticipated difficulty adjusting to adverse health effects were highly related to preferences and could be used as a proxy measure of utility. Similarly, the importance of sexual functioning, a future preference, was highly related to the optimal decision, which validates our previously published decision‐analytic model. [ABSTRACT FROM AUTHOR]

Objective: Patients' expectations predict important health outcomes. The goal of this study is to describe the types of expectations that hernia and gallbladder patients have for the outcomes of their surgery and to identify relationships between these expectations and both patient‐ and surgeon‐reported variables. Design: Patients (N = 143) at an out‐patient surgery clinic completed self‐report questionnaires before and after a pre‐surgical consultation in which they learned they would be scheduled for surgery. After indicating their general expectations for their surgical outcomes (positive or negative), patients reported specific outcome expectations, which were coded into eight categories: functional improvement, symptom relief, quality‐of‐life improvement, emotional improvement, general health, no effect expected, no response (or unsure) and negative expectations. Results: Functional improvement and symptom relief were the most common types of expectations mentioned by patients. A key finding was a significant difference in the pattern of expectations provided by Hispanic versus non‐Hispanic patients, as well as between patients across the range of health literacy. Conclusions: Patients undergoing hernia and gallbladder surgery have a variety of expectations, and these expectations vary across demographic groups. Patients who are particularly vulnerable to poor physician communication have positive but diffuse expectations. [ABSTRACT FROM AUTHOR]

The article presents the study that assesses the attitudes and knowledge of Faecal Immunochemical Test (FIT) users towards colorectal cancer (CRC) screening in the Netherlands. The topics discussed include the importance of mass CRC screening programmes in declining disease mortality and morbidity and the criteria set by the National Screening Committee in evaluating the screening's appropriateness.

Background: Knowledge of molecular biology and genomics continues to expand rapidly, promising numerous opportunities for improving health. However, a key aspect of the success of genomic medicine is related to public understanding and acceptance. Design: Using community consultations and an online survey, we explored public attitudes and expectations about genomics research. Results: Thirty‐three members of the general public in Newfoundland, Canada, took part in the community sessions, while 1024 Atlantic Canadians completed the online survey. Overall, many participants noted they lacked knowledge about genetics and associated research and took the opportunity to ask numerous questions throughout sessions. Participants were largely hopeful about genomics research in its capacity to improve health, not only for current residents, but also for future generations. However, they did not accept such research uncritically, and a variety of complex issues and questions arose during the community consultations and were reflected in survey responses. Discussion: With the proliferation of biobanks and the rapid pace of discoveries in genomics research, public support will be crucial to realize health improvements. If researchers can engage the public in regular, transparent dialogue, this two‐way communication could allow greater understanding of the research process and the design of efficient and effective genetic health services, informed by the public that will use them. [ABSTRACT FROM AUTHOR]

Background: Patients’ experiences are an indicator of health‐care performance in the accident and emergency department (A&E). The Consumer Quality Index for the Accident and Emergency department (CQI A&E), a questionnaire to assess the quality of care as experienced by patients, was investigated. The internal consistency, construct validity and discriminative capacity of the questionnaire were examined. Methods: In the Netherlands, twenty‐one A&Es participated in a cross‐sectional survey, covering 4883 patients. The questionnaire consisted of 78 questions. Principal components analysis determined underlying domains. Internal consistency was determined by Cronbach's alpha coefficients, construct validity by Pearson's correlation coefficients and the discriminative capacity by intraclass correlation coefficients and reliability of A&E‐level mean scores (G‐coefficient). Results: Seven quality domains emerged from the principal components analysis: information before treatment, timeliness, attitude of health‐care professionals, professionalism of received care, information during treatment, environment and facilities, and discharge management. Domains were internally consistent (range: 0.67–0.84). Five domains and the ‘global quality rating’ had the capacity to discriminate among A&Es (significant intraclass correlation coefficient). Four domains and the ‘global quality rating’ were close to or above the threshold for reliably demonstrating differences among A&Es. The patients’ experiences score on the domain timeliness showed the largest range between the worst‐ and best‐performing A&E. Conclusions: The CQI A&E is a validated survey to measure health‐care performance in the A&E from patients’ perspective. Five domains regarding quality of care aspects and the ‘global quality rating’ had the capacity to discriminate among A&Es. [ABSTRACT FROM AUTHOR]

Background Talking with a child about their HIV status is a complex, emotionally laden and difficult task for caregivers and healthcare providers. Disclosure is an important process which may have psychosocial and health benefits. Despite existing guidelines and materials, disclosure does not always happen for various reasons. Objective This qualitative study explored a healthcare team's perspectives and experiences about disclosure practices. Methods Three focus groups were conducted with a total of 23 healthcare providers at a paediatric clinic in South Africa. The data were analysed using principles of thematic analysis. Results Results confirm the complexity of the disclosure process and highlight confusion, hesitancy and ethical dilemmas regarding disclosure practices. Tensions were noted within the team which seem linked to professional hierarchies. Counsellors and nurses preferred an indirect approach of encouraging caregivers to disclose to their children and providing psychosocial support, while doctors tended to become more directly involved in disclosing to children out of a sense of duty, legal responsibilities and knowledge of the child's rights. Discussion and Conclusions This study demonstrates how the complexities of disclosure with children and adolescents bring about additional challenges for healthcare teams. The legal and ethical implications as well as the roles and responsibilities of healthcare providers with disclosure remain unclear. Several recommendations for practice and policy emerge from this study, related particularly to the need for clarification of disclosure guidelines and legal implications. Implications for the healthcare team are also discussed. [ABSTRACT FROM AUTHOR]

Context Existing measurements of patient preferences cover only a limited range of health information and participation in decision making. A broader approach is necessary to understand the breadth and variations in patient preferences. Objective To explore the breadth and variances in patient preferences for health information and participation in decision making and to understand the relationship between age and each type of preference. Design The Health Information Wants Questionnaire ( HIWQ) was administered during May- December 2010 to gather data about the information and corresponding decision-making autonomy participants would want in seven areas: diagnosis, treatment, laboratory tests, self-care, complementary and alternative medicine ( CAM), psychosocial factors and health-care providers. Setting A large state university, public libraries and senior centres in Maryland, USA. Participants A convenience sample of 438 individuals, including 226 undergraduates (mean age = 20; SD = 2.15) and 212 community-dwelling older adults (mean age = 72; SD = 9.00). Main Outcome Measures Ratings on the information and decision-making items of the HIWQ. Results Participants expressed higher levels of preference for information than for participation in decision making on six of seven subscales. On the psychosocial subscale, they expressed stronger desire for participation in decision making than for information. Age had no predictive effect on the overall preferences or specific preferences for information and participation in decision making about standard treatments and CAM. The predictive effect of age on the other types of preferences varied significantly. Conclusions Physicians should take into account the breadth and variations in patient preferences. The predictive effect of age on patient preferences varied depending on the specific area of preferences. [ABSTRACT FROM AUTHOR]

Background Nurses are becoming increasingly important as providers of primary health care in Australia. In November 2010, Medicare provider rights and Pharmaceutical Benefits Scheme rights for nurse practitioners, working in private practice and in collaboration with a medical practitioner, were introduced in Australia. Although international evidence suggests that nurse practitioners would be appropriate and acceptable providers of care at the first point of contact, such as primary health care, there is little Australian evidence about what care consumers are willing to accept from nurse practitioners. Objectives To ascertain what care Australian health-care consumers would accept from nurse practitioners in this setting. Participants Australian adults over 18 years of age. Methods National Survey delivered online. Information about the survey was disseminated through a media campaign, stakeholder engagement and through the health-care consumer networks nationally. Results The total number of respondents that started the survey was n = 1883. Ninety-five percentage ( n = 1784) of respondents completed the survey. The majority of respondents were women, aged 25-54 years, had completed tertiary education and had an annual household income of more than A$80 000. The majority of the respondents ( n = 1562, 87%) said they would be prepared to see a nurse practitioner for some of their primary health-care needs. Conclusions The findings of this study suggest consumers are accepting of a range of activities undertaken by nurse practitioners in primary health care and this has relevance for primary health-care workforce mix and organization, particularly for areas that are underserved by medical practitioners. [ABSTRACT FROM AUTHOR]

Background The role of information on patients' decision to non-adhere is important, yet not well explored. Objective To identify differences between perceived information needs for hypertension and medication to treat it, to explore the information channels used by patients and to test what type of information is more important to adhere to medication. Design, setting and participants A questionnaire study was designed and conducted by telephone in the Centre for the Treatment of Hypertension in Athens, Greece, among 743 individuals. Main variables studied The main variables included perceived information needs, information channels, non-adherence to medication and socio-demographic characteristics. Main outcome measures Non-adherence to medication was measured using the Morisky scale. Results Patients reported feeling better informed about hypertension (90%) than medication to treat it (80%). The doctor remains the dominant information source, while the Media and magazines on health issues were reported more frequently than the family and the pharmacist. Feeling well informed about medication for hypertension was a predictor of better adherence. Other determinants of adherence were the use of the Internet and the Media. Discussion The results confirm the importance of patients leaving the consultation feeling well informed about their medication as this improves adherence. They also show that the use of the Internet and the Media can be beneficial for adherence. Conclusions Given the restricted time the doctor can usually spend with the patient, it is important to know that more emphasis on the information regarding medication is important. [ABSTRACT FROM AUTHOR]

Background Socioeconomically deprived women are at greater risk of adverse pregnancy outcomes. Research tends to focus on access of services. Yet access may not equate with the equity of services for women from different socioeconomic backgrounds. Objectives To determine whether pregnant women's perceptions of antenatal provision differed in relation to their socioeconomic deprivation ranking (determined by the Scottish Index of Multiple Deprivation 2006). Design A longitudinal, qualitative study with comparative antenatal case studies between January 2007 and April 2009. Setting/Participants Cases were primigravida women from 'least deprived' ( n = 9) and 'most deprived' ( n = 12) geographical areas within one local authority in Scotland. Analysis Data were analysed using case study replication analysis. Results There was little difference in access to antenatal services between the 'least' and 'most' deprived groups. Perception of care differed in relation to the level of 'engagement' (defined using constructs of: language and personalization of care; power and relationships; and health literacy). Engagement was evidenced in most of the 'least deprived' cases and almost none of the 'most deprived' cases. Specifically, socioeconomically deprived women described less evidence of personal connection to their own care, effective communication and the opportunity for shared decision making. Conclusion In women from socioeconomically deprived areas, access may be a less useful indicator than engagement when assessing antenatal service quality. As engagement levels may be one method by which to predict and improve health outcomes, a more equitable antenatal service may need to be developed through the early identification of those women at risk of non-engagement. [ABSTRACT FROM AUTHOR]

Background Health literacy is the ability to obtain, interpret and use health information. Low rates of health literacy in Australia have been suggested, but no validated measure exists. Objective To explore health literacy competencies in a sample of community pharmacy consumers. Design Structured interviews were undertaken by a team of researchers during August, 2009. The instrument was derived from available literature, measuring aspects of functional, interactive and critical health literacy regarding use of medicines. Setting and participants Twelve community pharmacies in the Brisbane region, Australia. Results Six hundred and forty-seven consumers participated; 64% were women. A wide distribution of ages was evident. English was the first language of 89% of respondents. More than half of the sample (55%), predominantly aged 26-45 years, was tertiary educated. While 87% of respondents recognized a sample prescription, 20% could not readily match the prescription to a labelled medicine box. Eighty-two percentage of respondents interpreted 'three times a day' appropriately, but interpretation of a standard ancillary label was highly variable. Advanced age, less formal education, non-English-speaking background and male gender were independently related to lower performance in some variables. Discussion This health literacy measure applied comprehension and numeracy skills required of adults receiving prescription medications. While the majority of consumers adequately performed these tasks, some behaviours and responses were of sufficient concern to propose additional verbal and written information interventions by pharmacy staff. Conclusions This research provides insight into issues that may affect consumers' appropriate use of medicines and self-efficacy. Initiatives to improve public health literacy are warranted. [ABSTRACT FROM AUTHOR]

Introduction Shared decision making (SDM) is now considered a desirable goal in health care, yet little is known about current practice in cancer care, and its impact on patient outcomes. This study aimed to develop an oncology-specific coding system for SDM, explore variations in SDM according to patient and disease characteristics, determine the relationship between SDM and patient satisfaction with the consultation, and explore the impact of SDM on patient anxiety. Methods Sixty-three medical and radiation oncology consultations with patients with primary cancer involving consideration of adjuvant therapy after surgery were audio-taped, transcribed and coded. Intra and inter-rater reliability of the coding system was 95 and 90% respectively. Patients completed questionnaires before and after the consultation. Results Construct validity of the SDM coding system was successfully conducted. Oncologists demonstrated on average under 11 of 18 SDM behaviours. Behaviours seeking patient preferences were particularly rare. SDM behaviours were more apparent in consultations involving female breast cancer patients. SDM behaviour scores in combination with patient involvement preference could predict achievement of patient involvement preference but not overall patient satisfaction. Although there was no overall relationship between patient anxiety and SDM scores, it did appear that physicians may change SDM behaviour according to patient factors including anxiety. Conclusion Our findings reinforce the importance of the doctor in facilitating shared decision making in oncology consultations. [ABSTRACT FROM AUTHOR]

Objective To determine the preferred means by which participants in a study of cardiac rehabilitation wish to be informed of the study’s results. Design Postal questionnaire survey of participants in a randomized controlled trial. Setting Cornwall, southwest England. Participants Patients recruited to the Cornwall Heart Attack Rehabilitation Management Study (CHARMS). Method Participants recruited to CHARMS who were alive 3 years and 9 months after the trial was completed were contacted by letter and invited to return a reply slip with four short questions indicating how they would prefer to be informed about the published results of the study. Results In March 2008, 191/230 participants originally recruited to CHARMS were still alive. General practitioners deemed 166/191 (88%) survivors medically appropriate to be contacted through a postal survey, and 154/166 (93%) participants responded to the invitation to participate in the follow-up survey. 86% (143/166) of participants indicated that they wished to be informed about the results: 115 (80%) of these elected to receive information by letter and 25 (18%) of these preferred to attend a meeting. Men older than 65 years predominated in this latter group. Women respondents preferred to receive the study results by letter; none preferred communication by email or the web. Conclusion Survivors of acute myocardial infarction who participated in a RCT of cardiac rehabilitation wanted to receive a summary of the aggregate study results. Participants had preferences regarding how they would wish to be informed about the results of the study. Most participants preferred to be informed by letter or email, but some preferred the interaction of a group or a meeting. [ABSTRACT FROM AUTHOR]