Health informatics: improving patient-centred healthcare pathway

Nowadays the use of information and communication technology is becoming prevalent in many aspects of healthcare services from patient registration, to consultation, treatment and pathology tests request. Manual interface techniques have dominated data-capture activities in primary care and secondary care settings for decades. Despites the improvements made in IT, usability issues still remain over the use of I/O devices like the computer keyboard, touch-sensitive screens, light pen and barcodes. Furthermore, clinicians have to use several computer applications when providing healthcare services to patients. One of the problems faced by medical professionals is the lack of data integrity between the different software applications which in turn can hinder the provision of healthcare services tailored to the needs of the patients. The use of digital pen and paper technology integrated with legacy medical systems hold the promise of improving healthcare quality. This paper discusses the issue of data integrity in e-health systems and proposes the modelling of "Smart Forms" via semiotics to potentially improve integrity between legacy systems, making the work of medical professionals easier and improve the quality of care in primary care practices and hospitals.

Designing care bundle documentation to support the recognition and treatment of acute kidney injury: a route to quality improvement

The chapter describes development of care bundle documentation, through an iterative, user-centred design process, to support the recognition and treatment of acute kidney injury (AKI). The chapter details stages of user and stakeholder consultation, employed to develop a design response that was sensitive to user experience and need, culminating in simulation testing of a near final prototype. The development of supplementary awareness-raising materials, relating to the main care bundle tool is also discussed. This information design response to a complex clinical decision-making process is contrasted to other approaches to promoting AKI care. The need for different but related approaches to the working tool itself and the tool’s communication are discussed. More general recommendations are made for the development of communication tools to support complex clinical processes.

Health care providers' perceptions of and attitudes towards induced abortions in sub-Saharan Africa and Southeast Asia : a systematic literature review of qualitative and quantitative data.

BACKGROUND: Unsafe abortions are a serious public health problem and a major human rights issue. In low-income countries, where restrictive abortion laws are common, safe abortion care is not always available to women in need. Health care providers have an important role in the provision of abortion services. However, the shortage of health care providers in low-income countries is critical and exacerbated by the unwillingness of some health care providers to provide abortion services. The aim of this study was to identify, summarise and synthesise available research addressing health care providers' perceptions of and attitudes towards induced abortions in sub-Saharan Africa and Southeast Asia. METHODS: A systematic literature search of three databases was conducted in November 2014, as well as a manual search of reference lists. The selection criteria included quantitative and qualitative research studies written in English, regardless of the year of publication, exploring health care providers' perceptions of and attitudes towards induced abortions in sub-Saharan Africa and Southeast Asia. The quality of all articles that met the inclusion criteria was assessed. The studies were critically appraised, and thematic analysis was used to synthesise the data. RESULTS: Thirty-six studies, published during 1977 and 2014, including data from 15 different countries, met the inclusion criteria. Nine key themes were identified as influencing the health care providers' attitudes towards induced abortions: 1) human rights, 2) gender, 3) religion, 4) access, 5) unpreparedness, 6) quality of life, 7) ambivalence 8) quality of care and 9) stigma and victimisation. CONCLUSIONS: Health care providers in sub-Saharan Africa and Southeast Asia have moral-, social- and gender-based reservations about induced abortion. These reservations influence attitudes towards induced abortions and subsequently affect the relationship between the health care provider and the pregnant woman who wishes to have an abortion. A values clarification exercise among abortion care providers is needed.

'Moving On' and Transitional Bridges : Studies on migration, violence and wellbeing in encounters with Somali-born women and the maternity health care in Sweden

During the latest decade Somali-born women with experiences of long-lasting war followed by migration have increasingly encountered Swedish maternity care, where antenatal care midwives are assigned to ask questions about exposure to violence. The overall aim in this thesis was to gain deeper understanding of Somali-born women’s wellbeing and needs during the parallel transitions of migration to Sweden and childbearing, focusing on maternity healthcare encounters and violence. Data were obtained from medical records (paper I), qualitative interviews with Somali-born women (II, III) and Swedish antenatal care midwives (IV). Descriptive statistics and thematic analysis were used. Compared to pregnancies of Swedish-born women, Somali-born women’s pregnancies demonstrated later booking and less visits to antenatal care, more maternal morbidity but less psychiatric treatment, less medical pain relief during delivery and more emergency caesarean sections and small-for-gestational-age infants (I). Political violence with broken societal structures before migration contributed to up-rootedness, limited healthcare and absent state-based support to women subjected to violence, which reinforced reliance on social networks, own endurance and faith in Somalia (II). After migration, sources of wellbeing were a pragmatic “moving-on” approach including faith and motherhood, combined with social coherence. Lawful rights for women were appreciated but could concurrently risk creating power tensions in partner relationships. Generally, the Somali-born women associated the midwife more with providing medical care than with overall wellbeing or concerns about violence, but new societal resources were parallel incorporated with known resources (III). Midwives strived for woman-centered approaches beyond ethnicity and culture in care encounters, with language, social gaps and divergent views on violence as potential barriers in violence inquiry. Somali-born women’s strength and contentment were highlighted, and ongoing violence seldom encountered according to the midwives experiences (IV). Pragmatism including “moving on” combined with support from family and social networks, indicate capability to cope with violence and migration-related stress. However, this must be balanced against potential unspoken needs at individual level in care encounters.With trustful relationships, optimized interaction and networking with local Somali communities and across professions, the antenatal midwife can have a “bridging-function” in balancing between dual societies and contribute to healthy transitions in the new society.

To achieve safe and respectful maternity care in tertiary level hospitals in Nepal, relatives are a valued addition to the provision of maternity care

Introduction: The White Ribbon Alliance for safe motherhood believes respectful maternity care is the universal right of every childbearing woman. Methods: NHRC in 2012 approved an inquiry of respectful care at facility-based childbirth. Individual-, focus group interviews and content analysis was used for gathering and analysis of data. Findings: The participating women and the SBAs shared similar views, and this was that together the SBAs and relatives ensured the women remained within the comfort and safety zone when giving birth in a tertiary level maternity unit. Conclusion: The SBAs strategy of having relatives provides basic care alongside the provision of medical care by the SBAs is a strategy that Nepal could use to improve the quality of its maternity care without any additional costs. Clinical implication: Prenatal classes might contribute to preparing relatives. Further Research: Further research could evaluate such a strategy in order to determine its effectiveness in reduction of morbidity and mortality.

Being a bridge : Swedish antenatal care midwives’ encounters with Somali-born women and questions of violence; a qualitative study

Background: Violence against women is associated with serious health problems, including adverse maternal and child health. Antenatal care (ANC) midwives are increasingly expected to implement the routine of identifying exposure to violence. An increase of Somali born refugee women in Sweden, their reported adverse childbearing health and possible links to violence pose a challenge to the Swedish maternity health care system. Thus, the aim was to explore ways ANC midwives in Sweden work with Somali born women and the questions of exposure to violence. Methods: Qualitative individual interviews with 17 midwives working with Somali-born women in nine ANC clinics in Sweden were analyzed using thematic analysis. Results: The midwives strived to focus on the individual woman beyond ethnicity and cultural differences. In relation to the Somali born women, they navigated between different definitions of violence, ways of handling adversities in life and social contexts, guided by experience based knowledge and collegial support. Seldom was ongoing violence encountered. The Somali-born women’s’ strengths and contentment were highlighted, however, language skills were considered central for a Somali-born woman’s access to rights and support in the Swedish society. Shared language, trustful relationships, patience, and networking were important aspects in the work with violence among Somali-born women. Conclusion: Focus on the individual woman and skills in inter-cultural communication increases possibilities of overcoming social distances. This enhances midwives’ ability to identify Somali born woman’s resources and needs regarding violence disclosure and support. Although routine use of professional interpretation is implemented, it might not fully provide nuances and social safety needed for violence disclosure. Thus, patience and trusting relationships are fundamental in work with violence among Somali born women. In collaboration with social networks and other health care and social work professions, the midwife can be a bridge and contribute to increased awareness of rights and support for Somali-born women in a new society.

What is important for you? A qualitative interview study of living with diabetes and experiences of diabetes care to establish a basis for a tailored Patient-Reported Outcome Measure for the Swedish National Diabetes Register

OBJECTIVES: There is a growing emphasis on the perspective of individuals living with diabetes and the need for a more person-centred diabetes care. At present, the Swedish National Diabetes Register (NDR) lacks patient-reported outcome measures (PROMs) based on the perspective of the patient. As a basis for a new PROM, the aim of this study was to describe important aspects in life for adult individuals with diabetes. DESIGN: Semistructured qualitative interviews analysed using content analysis. SETTING: Hospital-based outpatient clinics and primary healthcare clinics in Sweden. PARTICIPANTS: 29 adults with type 1 diabetes mellitus (DM) (n=15) and type 2 DM (n=14). INCLUSION CRITERIA: Swedish adults (≥18 years) living with type 1 DM or type 2 DM (duration ≥5 years) able to describe their situation in Swedish. Purposive sampling generated heterogeneous characteristics. RESULTS: To live a good life with diabetes is demanding for the individual, but experienced barriers can be eased by support from others in the personal sphere, and by professional support from diabetes care. Diabetes care was a crucial resource to nurture the individual's ability and knowledge to manage diabetes, and to facilitate life with diabetes by supplying support, guidance, medical treatment and technical devices tailored to individual needs. The analysis resulted in the overarching theme 'To live a good life with diabetes' constituting the two main categories 'How I feel and how things are going with my diabetes' and 'Support from diabetes care in managing diabetes' including five different categories. CONCLUSIONS: Common aspects were identified including the experience of living with diabetes and support from diabetes care. These will be used to establish a basis for a tailored PROM for the NDR.

Older people's experience of utilisation and administration of medicines in a health- and social care context

BACKGROUND: People living at home who lack ability to manage their medicine are entitled to assistance to improve adherence provided by a home care assistant employed by social care. AIM: The aim was to describe how older people with chronic diseases, living at home, experience the use and assistance of administration of medicines in the context of social care. DESIGN: A qualitative descriptive study. METHODS: Ten participants (age 65+) living at home were interviewed in the participants' own homes. Latent content analysis was used. FINDINGS: The assistance eases daily life with regard to practical matters and increases adherence to a medicine regimen. There were mixed feelings about being dependent on assistance; it interferes with self-sufficiency at a time of health transition. Participants were balancing empowerment and a dubious perception of the home care assistants' knowledge of medicine and safety. Physicians' and district nurses' professional knowledge was a safety guarantee for the medicine process. CONCLUSIONS: Assistance eases daily life and medicine regimen adherence. Dependence on assistance may affect self-sufficiency. Perceived safety varied relating to home care assistants' knowledge of medicine. RELEVANCE TO CLINICAL PRACTICE: A well-functioning medicine assistance is crucial to enable older people to remain at home. A person-centred approach to health- and social care delivery is efficient and improve outcome for the recipient of care.

Still suffering from the `silo effect`: lingering cultural barriers to collaborative care

This research project sought to draw out the contesting definitions of collaborative care among professional subgroups in maternity services. The paper contrasts medical and social models of knowledge and reports on qualitative evidence from midwives and doctors in Australian hospitals. The evidence indicates that collaborative care is welcomed by both midwives and doctors but that there remains a lingering residue of the ‘silo effect’ of the ‘old’ professionalism, characterized by hierarchical relations, divergent philosophies and competing domains. Although a ‘new professionalism’ has emerged that challenges the old hierarchies and professional dependencies, it too harbours lingering residues of the former dichotomy between midwives and obstetricians. These tensions and enmities will need to be resolved before genuine collaboration may take full effect. The objective is a relationship focused model of care that transcends professional or woman-focused models. The ‘new’ professionalism may be expedited through mediation strategies, a version of which is the ‘sociological intervention method’ discussed in this article.

Women exposed to intimate partner violence : expectations and experiences when they encounter health care professionals : a meta-analysis of qualitative studies

Background The appropriate response of health care professionals to intimate partner violence is still a matter of debate. This article reports a meta-analysis of qualitative studies that answers 2 questions: (1) How do women with histories of intimate partner violence perceive the responses of health care professionals? and (2) How do women with histories of intimate partner violence want their health care providers to respond to disclosures of abuse?

Methods Multiple databases were searched from their start to July 1, 2004. Searches were complemented with citation tracking and contact with researchers. Inclusion criteria included a qualitative design, women 15 years or older with experience of intimate partner violence, and English language. Two reviewers independently applied criteria and extracted data. Findings from the primary studies were combined using a qualitative meta-analysis.

Results Twenty-nine articles reporting 25 studies (847 participants) were included. The emerging constructs were largely consistent across studies and did not vary by study quality. We ordered constructs by the temporal structure of consultations with health care professionals: before the abuse is discussed, at disclosure, and the immediate and further responses of the health care professional. Key constructs included a wish from women for responses from health care professionals that were nonjudgmental, nondirective, and individually tailored, with an appreciation of the complexity of partner violence. Repeated inquiry about partner violence was seen as appropriate by women who were at later stages of an abusive relationship.

Conclusion Women’s perceptions of appropriate and inappropriate responses partly depended on the context of the consultation, their own readiness to address the issue, and the nature of the relationship between the woman and the health care professional.

The early postnatal period : exploring women's views, expectations and experiences of care using focus groups in Victoria, Australia

Background: There is growing evidence from Australia and overseas that the care provided in hospital in the early postnatal period is less than ideal for both women and care providers. Many health services face increasing pressure on hospital beds and have limited physical space available to care for mothers and their babies. We aimed to gain a more in-depth understanding of women's views, expectations and experiences of early postnatal care.

Methods: We conducted focus groups in rural and metropolitan Victoria, Australia in 2006. Fifty-two people participated in eight focus groups and four interviews. Participants included eight pregnant women, of whom seven were pregnant with their first baby; 42 women who were in the postpartum period (some up to twelve months after the birth of their baby); and two partners. All participants were fluent in English. Focus group guides were developed specifically for the study and explored participants' experiences and/or expectations of early postnatal care in hospital and at home, with an emphasis on length of hospital stay, professional and social support, continuity of care, and rest. Discussions were audio-taped and transcribed verbatim. A thematic network was constructed to describe and connect categories with emerging basic, organizing, and global themes.

Results: Global themes that emerged were: anxiety and/or fear; and the transition to motherhood and parenting. The needs of first time mothers were considered to be different to the needs of women who had already experienced motherhood. The women in this study were generally concerned about the safety of their new baby, and lacked confidence in themselves as new mothers regarding their ability to care for their baby. There was a consistent view that the physical presence and availability of professional support helped alleviate these concerns, and this was especially the case for women having a first baby.

Conclusion: Women have anxieties and fears around early parenting and their changing role, and may consider that the physical availability of professional care providers will help during this time. Care providers should be cognisant of these potential issues. It is crucial that women's concerns and needs be considered when service delivery changes are planned. If anxiety around new parenting is a predominant view then care providers need to recognise this and ensure care is individualised to address each woman's/families particular concerns.

COSMOS: COmparing standard maternity care with one-to-one midwifery support: a randomised controlled trial

Background: In Australia and internationally, there is concern about the growing proportion of women giving birth by caesarean section. There is evidence of increased risk of placenta accreta and percreta in subsequent pregnancies as well as decreased fertility; and significant resource implications. Randomised controlled trials (RCTs) of continuity of midwifery care have reported reduced caesareans and other interventions in labour, as well as increased maternal satisfaction, with no statistically significant differences in perinatal morbidity or mortality. RCTs conducted in the UK and in Australia have largely measured the effect of teams of care providers (commonly 6–12 midwives) with very few testing caseload (one-to-one) midwifery care. This study aims to determine whether caseload (one-to-one) midwifery care for women at low risk of medical complications decreases the proportion of women delivering by caesarean section compared with women receiving 'standard' care. This paper presents the trial protocol in detail.

Methods/design: A two-arm RCT design will be used. Women who are identified at low medical risk will be recruited from the antenatal booking clinics of a tertiary women's hospital in Melbourne, Australia. Baseline data will be collected, then women randomised to caseload midwifery or standard low risk care. Women allocated to the caseload intervention will receive antenatal, intrapartum and postpartum care from a designated primary midwife with one or two antenatal visits conducted by a 'back-up' midwife. The midwives will collaborate with obstetricians and other health professionals as necessary. If the woman has an extended labour, or if the primary midwife is unavailable, care will be provided by the back-up midwife. For women allocated to standard care, options include midwifery-led care with varying levels of continuity, junior obstetric care and community based general medical practitioner care. Data will be collected at recruitment (self administered survey) and at 2 and 6 months postpartum by postal survey. Medical/obstetric outcomes will be abstracted from the medical record. The sample size of 2008 was calculated to identify a decrease in caesarean birth from 19 to 14% and detect a range of other significant clinical differences. Comprehensive process and economic evaluations will be conducted.

Trial registration: Australian New Zealand Clinical Trials Registry ACTRN012607000073404.

The complexity of social practice : understanding inertia and change in maternity care organizations

Beyond the limited efficiency and economy goals of neoliberal health policy lies the promise of genuine health services reform. In maternity care in particular, recent policy developments have sought to make the management of birth more ‘women-centred and family-friendly’. Interprofessional collaboration and greater consumer participation in policy and decision-making are key means to achieve this goal, but changing the entrenched system of medicalised birth remains difficult. Recent social contestation of maternity care has destabilised but not eradicated pervasive medical hegemony. Further reform requires analysis both of institutionalised patterns of power, and attention to the fluidity and situated knowledge shaping organisational and professional practices. Accordingly, this paper outlines a framework with which to explore the multi-layered social processes involved in implementing organisational and cultural change in maternity care. Analysis of social interventions in health systems, we suggest, can be advanced by drawing on strands from critical organization studies, complexity and critical discourse theories and social practice approaches.

To integrate or not to integrate? Future considerations for chronic disease self-management programs in the health care system

Objective: The growing burden of chronic disease and the increasing realisation that the current health system is ill equipped to deal with this trend has resulted in a health policy shift away from the traditional medical model to a more patient centred approach. As such, chronic disease self-management programs (CDSMP) have emerged as a potentially important component within this approach. Policy and program trends at the international level highlight several critical factors that need to be considered by governments and health care providers alike if CDSMP are to be integrated within the broader health system. This study reviewed international and local policy literature and sought perspectives from key stakeholders to determine the value and potential for integrating a generic group-based CDSMP into the care continuum.
Method: Prominent self-management policies were identified through a comprehensive literature search. Interviews were conducted with policy makers across Australia (n=20), health practitioners (n=20) and consumers (n=42) purposefully recruited from metropolitan and rural Victoria, representing key demographics of interest including low socioeconomic areas.
Results: Whilst CDSMP were viewed as having significant potential to be integrated into the health sector it was identified that the delivery and content of CDSMP needs to be flexible in order to address the needs of people across the disease, age and care continuums. Critical issues to be addressed if CDSMP are to be successfully integrated include increasing the profile of self-management; actively engaging and training health practitioners in self-management and overcoming system barriers such as lack of integrated referral pathways and networks.
Discussion: Policy directions at the national level suggest that self-management will be a centrepiece in forthcoming chronic disease initiatives. International evidence has highlighted the requirement for a ‘suite’ of programs to adequately cater to different stages of the disease continuum, age groups, ethnic backgrounds and sociogeographical areas. Furthermore engagement with key stakeholders (particularly GPs) is identified as critical to ensure the successful integration of CDSMP into the health system.
Conclusion: Evidence suggests that CDSMP is an important facet in improving care of people with chronic conditions. Findings from this study suggest that current infrastructure and policy direction, which have been found to be critical factors in facilitating integration of CDSMP into the health sector, are either absent or inadequate in Victoria. CDSMPs are currently lacking a sustainable workforce, referral infrastructure and specific policy. Such factors need to be addressed before the integration of CDSMP can be considered across the healthcare continuum in Victoria.

Lesbian and gay experiences of primary care in one borough in North London, UK

This paper reports the findings of a research study which explored the experiences of lesbians and gay men in relation to primary care services in general practice in a multiracial borough in North London, UK. The research took a qualitative approach and used several methods including a literature review, interviews with stakeholders (n = 6), focus group discussions (n = 27) and completion (n = 42) of a survey distributed to lesbians and gay men locally. The process facilitated the development of a grounded theory. The important themes to emerge were finding a GP and coming out, sexual health issues, mental health issues and communication with the GP. Given the high level of mobility among this population, there were problems in maintaining continuity of care, and a lack of protocols to facilitate the sharing of knowledge between patients and practitioners while reducing reliance on heterosexual assumptions. There were clear differences between the treatment of women and men in relation to sexual health, and neither approach could be said to be patient centred or inclusive of diversity of need. The fact that many informants accessed alternative sources of healthcare indicated that they were concerned to promote and maintain their health and wellbeing in a holistic manner. The lack of transparent protocols within general practice inhibited some informants from being as open and honest about their sexuality with their GPs as they were with their families or their employers. The findings highlight (1) the need for organisational development within primary care to improve sensitivity to the needs of lesbians and gay men; (2) the value of research to engage with the social experiences of lesbians and gay men; (3) the importance of engaging with the differing experiences of lesbians and gay men in relation to sexual health concerns.