Benefits and resource implications of family meetings for hospitalized palliative care patients: research protocol.

BACKGROUND:
Palliative care focuses on supporting patients diagnosed with advanced, incurable disease; it is 'family centered', with the patient and their family (the unit of care) being core to all its endeavours. However, approximately 30-50% of carers experience psychological distress which is typically under recognised and consequently not addressed. Family meetings (FM) are recommended as a means whereby health professionals, together with family carers and patients discuss psychosocial issues and plan care; however there is minimal empirical research to determine the net effect of these meetings and the resources required to implement them systematically. The aims of this study were to evaluate: (1) if family carers of hospitalised patients with advanced disease (referred to a specialist palliative care in-patient setting or palliative care consultancy service) who receive a FM report significantly lower psychological distress (primary outcome), fewer unmet needs, increased quality of life and feel more prepared for the caregiving role; (2) if patients who receive the FM experience appropriate quality of end-of-life care, as demonstrated by fewer hospital admissions, fewer emergency department presentations, fewer intensive care unit hours, less chemotherapy treatment (in last 30 days of life), and higher likelihood of death in the place of their choice and access to supportive care services; (3) the optimal time point to deliver FM and; (4) to determine the cost-benefit and resource implications of implementing FM meetings into routine practice.
METHODS:
Cluster type trial design with two way randomization for aims 1-3 and health economic modeling and qualitative interviews with health for professionals for aim 4.
DISCUSSION:
The research will determine whether FMs have positive practical and psychological impacts on the family, impacts on health service usage, and financial benefits to the health care sector. This study will also provide clear guidance on appropriate timing in the disease/care trajectory to provide a family meeting.

Home on a care order: who the children are and what the care order is for

Compared to children in other placements, there is much less known about the characteristics and needs of children in the UK who are returned to their birth parents with a care order still in place. That is in spite of evidence to suggest they face more difficulties than young people in other placements. Based on a 2009 census of looked after children in Northern Ireland, just under 10% (n = 193) were found to be living at home under a care order. Case file reviews were conducted for a quarter of these young people (n = 47) to generate descriptive statistics showing a very diverse population. That was followed by semi-structured interviews with members of eight families (ten children and eight birth parent/s), providing transcripts for thematic analysis. Nearly half of the young people whose case files were reviewed had experienced at least one home placement breakdown, but nearly two thirds had a stable last home placement. Care orders appeared to serve two functions: to give legal authority to social services for the monitoring of placements, and to facilitate family access to family support services. Replacing some care orders with supervision orders might better align legal status and actual function.

Exploring the needs, concerns and knowledge of women diagnosed with gestational diabetes: A qualitative study

Objective
To explore the concerns, needs and knowledge of women diagnosed with Gestational Diabetes Mellitus (GDM).
Design
A qualitative study of women with GDM or a history of GDM.
Methods
Nineteen women who were both pregnant and recently diagnosed with GDM or post- natal with a recent history of GDM were recruited from outpatient diabetes care clinics. This qualitative study utilised focus groups. Participants were asked a series of open-ended questions to explore 1) current knowledge of GDM; 2) anxiety when diagnosed with GDM, and whether this changed overtime; 3) understanding and managing GDM and 4) the future impact of GDM. The data were analysed using a conventional content analysis approach.
Findings
Women experience a steep learning curve when initially diagnosed and eventually become skilled at managing their disease effectively. The use of insulin is associated with fear and guilt. Diet advice was sometimes complex and not culturally appropriate. Women appear not to be fully aware of the short or long-term consequences of a diagnosis of GDM.
Conclusions
Midwives and other Health Care Professionals need to be cognisant of the impact of a diagnosis of GDM and give individual and culturally appropriate advice (especially with regards to diet). High quality, evidence based information resources need to be made available to this group of women. Future health risks and lifestyle changes need to be discussed at diagnosis to ensure women have the opportunity to improve their health.

Evaluation use within a humanitarian non-governmental organization’s health care user-fee exemption program in West Africa

L’évaluation de l’action humanitaire (ÉAH) est un outil valorisé pour soutenir l’imputabilité, la transparence et l’efficience de programmes humanitaires contribuant à diminuer les inéquités et à promouvoir la santé mondiale. L’EAH est incontournable pour les parties prenantes de programme, les bailleurs de fonds, décideurs et intervenants souhaitant intégrer les données probantes aux pratiques et à la prise de décisions. Cependant, l’utilisation de l’évaluation (UÉ) reste incertaine, l’ÉAH étant fréquemment menée, mais inutilisé. Aussi, les conditions influençant l’UÉ varient selon les contextes et leur présence et applicabilité au sein d’organisations non-gouvernementales (ONG) humanitaires restent peu documentées. Les évaluateurs, parties prenantes et décideurs en contexte humanitaire souhaitant assurer l’UÉ pérenne détiennent peu de repères puisque rares sont les études examinant l’UÉ et ses conditions à long terme. La présente thèse tend à clarifier ces enjeux en documentant sur une période de deux ans l’UÉ et les conditions qui la détermine, au sein d’une stratégie d’évaluation intégrée au programme d’exemption de paiement des soins de santé d’une ONG humanitaire. L’objectif de ce programme est de faciliter l’accès à la santé aux mères, aux enfants de moins de cinq ans et aux indigents de districts sanitaires au Niger et au Burkina Faso, régions du Sahel où des crises alimentaires et économiques ont engendré des taux élevés de malnutrition, de morbidité et de mortalité. Une première évaluation du programme d’exemption au Niger a mené au développement de la stratégie d’évaluation intégrée à ce même programme au Burkina Faso. La thèse se compose de trois articles. Le premier présente une étude d’évaluabilité, étape préliminaire à la thèse et permettant de juger de sa faisabilité. Les résultats démontrent une logique cohérente et plausible de la stratégie d’évaluation, l’accessibilité de données et l’utilité d’étudier l’UÉ par l’ONG. Le second article documente l’UÉ des parties prenantes de la stratégie et comment celle-ci servit le programme d’exemption. L’utilisation des résultats fut instrumentale, conceptuelle et persuasive, alors que l’utilisation des processus ne fut qu’instrumentale et conceptuelle. Le troisième article documente les conditions qui, selon les parties prenantes, ont progressivement influencé l’UÉ. L’attitude des utilisateurs, les relations et communications interpersonnelles et l’habileté des évaluateurs à mener et à partager les connaissances adaptées aux besoins des utilisateurs furent les conditions clés liées à l’UÉ. La thèse contribue à l’avancement des connaissances sur l’UÉ en milieu humanitaire et apporte des recommandations aux parties prenantes de l’ONG.

Using modeling as a co-design approach in the planning process of new care environments

Current research shows a relationship between healthcare architecture and patient-related Outcomes. The planning and designing of new healthcare environments is a complex process; the needs of the various end-users of the environment must be considered, including the patients, the patients’ significant others, and the staff. The aim of this study was to explore the experiences of healthcare professionals participating in group modelling utilizing system dynamics in the pre-design phase of new healthcare environments. We engaged healthcare professionals in a series of workshops using system dynamics to discuss the planning of healthcare environments in the beginning of a construction, and then interviewed them about their experience. An explorative and qualitative design was used to describe participants’ experiences of participating in the group modelling projects. Participants (n=20) were recruited from a larger intervention study using group modeling and system dynamics in planning and designing projects. The interviews were analysed by qualitative content analysis. Two themes were formed, representing the experiences in the group modeling process: ‘Partaking in the G-M created knowledge and empowerment’and ‘Partaking in the G-M was different from what was expected and required time and skills’. The method can support participants in design teams to focus more on their healthcare organization, their care activities and their aims rather than focusing on detailed layout solutions. This clarification is important when decisions about the design are discussed and prepared and will most likely lead to greater readiness for future building process.

Development of an instrument measuring the quality of residential care facilities for older people

Aims. To validate the Swedish version of the Sheffield Care Environment Assessment Matrix (S-SCEAM). The instrument’s items measure environmental elements important for supporting the needs of older people, and conceptualized within eight domains. Methods. Item relevance was assessed by a group of experts and measured using content validity index (CVI). Test-retest and inter-rater reliability tests were performed.  The domain structure was assessed by the inter-rater agreement of a second group of experts, and measured using Fleiss kappa. Results. All items attained a CVI above 0.78, the suggested criteria for excellent content validity. Test-retest reliability showed high stability (96% and 95% for two independent raters respectively), and inter-rater reliability demonstrated high levels of agreement (95% and 94% on two separate rating occasions). Kappa values were very good for test-retest (κ = 0.903 and 0.869) and inter-rater reliability (κ = 0.851 and 0.832). Domain structure was good,  Fleiss’ kappa was 0.63 (range 0.45 to 0.75).    Conclusion. The S-SCEAM of 210 items and eight domains showed good content validity and construct validity. The instrument is suggested for use in measuring of the quality of the physical environment in residential care facilities for older persons.

Beyond the numbers of maternal near-miss in Rwanda - a qualitative study on women's perspectives on access and experiences of care in early and late stage of pregnancy.

BACKGROUND: Rwanda has made remarkable progress in decreasing the number of maternal deaths, yet women still face morbidities and mortalities during pregnancy. We explored care-seeking and experiences of maternity care among women who suffered a near-miss event during either the early or late stage of pregnancy, and identified potential health system limitations or barriers to maternal survival in this setting. METHODS: A framework of Naturalistic Inquiry guided the study design and analysis, and the 'three delays' model facilitated data sorting. Participants included 47 women, who were interviewed at three hospitals in Kigali, and 14 of these were revisited in their homes, from March 2013 to April 2014. RESULTS: The women confronted various care-seeking barriers depending on whether the pregnancy was wanted, the gestational age, insurance coverage, and marital status. Poor communication between the women and healthcare providers seemed to result in inadequate or inappropriate treatment, leading some to seek either traditional medicine or care repeatedly at biomedical facilities. CONCLUSION: Improved service provision routines, information, and amendments to the insurance system are suggested to enhance prompt care-seeking. Additionally, we strongly recommend a health system that considers the needs of all pregnant women, especially those facing unintended pregnancies or complications in the early stages of pregnancy.

Caring for Children Dying from Cancer at Home: a Qualitative Study of the Experience of Primary Care Practitioners

Background. The rarity of childhood cancers makes providing palliative care in the community an unusual event for primary care practitioners. Providing this care requires effective interprofessional collaboration with the team that forms to provide the care often working together for the first and only time. Objective. To explore the experiences of primary care practitioners following their involvement in the palliative care of a child with cancer at home. Methods. The study design was a community-based qualitative study. The study location was the West Midlands region. Purposeful sample of GPs and community nurses involved in providing palliative care to 12 children. One-to-one in-depth interviews with 47 primary care professionals (10 GPs and 37 community nurses) and 5 facilitated case discussions were undertaken. Field notes were documented and grounded theory data analysis undertaken: chronological comparative data analysis identifying generated themes. Results. GPs had minimal input into the preceding care of children undergoing treatment for cancer but sought to re-establish their role at the child’s transition to palliative care. GPs felt they had a role to play and could add value to this phase of care, highlighted their continuing role with the child’s family and acknowledged that they had gained from the experience of contributing. However, lack of specialist knowledge and uncertainty about their role within the team made this more challenging. In contrast, community nurses were routinely involved in both active treatment and palliation care phases. There was little evidence of collaboration between the specialist and primary care professionals involved. There was considerable variation in out of hours provision across cases. Conclusions. Engaging primary care practitioners needs to be more actively anticipated and negotiated at the transition to palliation. Variation in out of hours care is another cause for concern. Enhancing inter-professional collaboration and planning during both active and palliative care phases may help. Keywords. Cancer, family medicine, palliative care, paediatric.

What do GPs and Bereaved Parents Think About Paediatric Oncologists and Palliative Care?

Aim The aim of the study was to examine the experiences of bereaved parents and general practitioners (GPs) following the death of a child with cancer within the family home. This presenta-tion focuses on one of the findings; the parent and GP views on the hospital consultants’ involvement in the palliative care. Design A community based qualitative study.Setting West Midlands region, UK. Participants Purposeful sample of 18 GPs and 11 bereaved families. The sample was drawn from the families and GPs of children who had been treated for cancer at a regional childhood cancer centre and who subsequently died within the family home. Methods One-to-one semi-structured tape-recorded interviews were undertaken with GPs and bereaved parents following the death at home of a child with cancer. GPs were contacted three months after the death of the child and the parents at six months. Thematic analysis of the transcriptions was undertaken. Findings Parents described feeling abandoned at the transition to palliation when management of care transferred to the GP. Families did not perceive a seamless service of medical care between hospital and community. Where offered consultant contact was valued by families and GPs. Text and email were used by families as a means of asking the consultant questions. The GPs lacked role clarity where the consultant continued involvement in the care. Conclusions The transition to palliation and the transfer of care to community services needs to be sensitively and actively man-aged for the family and the GP. Medical care between tertiary andprimary care should be seen as a continuum. Improving GP: consultant communication could aid role clarity, identify mecha-nisms for support and advice, and promote the active engagement of the GP in the care. Exploring opportunities for integrated con-sultant: GP working could maximise mutual learning and support and enhance care provision. The level, access and duration of ongoing contact between consultants and families/GPs require clarity.

Pathologies of Patriarchy: Death, Suffering, Care and Coping in the Gendered Gaps of HIV/AIDS Interventions in Nigeria

Thesis (Ph.D.)--University of Washington, 2016-08

Continuity of care in older adults with multiple chronic conditions

Thesis (Ph.D.)--University of Washington, 2016-08

Growing Well-beings: the Positive Experience of Care Farms

Objectives: Care farms enable people who are in some way vulnerable to engage with agricultural places and farming activities. This study investigates how this impacts on the health and well-being of service users and explores associated processes and outcomes. Design: A mixed methods design was adopted that allowed for the integration of quantitative measurements of change with qualitative descriptions of this change. A pragmatic approach provided sufficient flexibility to support the investigation of complex contexts. Methods: A total of 216 service users completed an initial questionnaire, and 137 (63%) of this number provided comparative data in a follow-up questionnaire. Questionnaires contained multiple choice and open-ended questions alongside standardized health and well-being measures requiring Likert-format responses. Semi-structured interviews with 33 service users allowed personal experiences to be detailed. Results: Statistical analysis of well-being measure scores identified significant positive relationships with the length of time people had been attending the care farm. Questionnaire and interview data presented health benefits as being enabled by the farm environment, the positive experience as supporting personal development, and associated social interactions as becoming increasingly influential as time progressed. Conclusions: The health and well-being outcomes that result from participating at a care farm influence multiple elements of the human condition and apply amongst vulnerable people with a wide range of personal needs. Care farms have access to a potentially unique range of resources that can support many service users in becoming happier and healthier individuals.

Is quality of life measurement likely to be a proxy for health needs assessment in patients with coronary artery disease?

BACKGROUND: The identification of patients' health needs is pivotal in optimising the quality of health care, increasing patient satisfaction and directing resource allocation. Health needs are complex and not so easily evaluated as health-related quality of life (HRQL), which is becoming increasingly accepted as a means of providing a more global, patient-orientated assessment of the outcome of health care interventions than the simple medical model. The potential of HRQL as a surrogate measure of healthcare needs has not been evaluated. OBJECTIVES AND METHOD: A generic (Short Form-12; SF-12) and a disease-specific questionnaire (Seattle Angina Questionnaire; SAQ) were tested for their potential to predict health needs in patients with acute coronary disease. A wide range of healthcare needs were determined using a questionnaire specifically developed for this purpose. RESULTS: With the exception of information needs, healthcare needs were highly correlated with health-related quality of life. Patients with limited enjoyment of personal interests, weak financial situation, greater dependency on others to access health services, and dissatisfaction with accommodation reported poorer HRQL (SF-12: p < 0.001; SAQ: p < 0.01). Difficulties with mobility, aids to daily living and activities requiring assistance from someone else were strongly associated with both generic and disease-specific questionnaires (SF-12: r = 0.46-0.55, p < 0.01; SAQ: r = 0.53-0.65, p < 0.001). Variables relating to quality of care and health services were more highly correlated with SAQ components (r = 0.33-0.59) than with SF-12 (r = 0.07-0.33). Overall, the disease-specific Seattle Angina Questionnaire was superior to the generic Short Form-12 in detecting healthcare needs in patients with coronary disease. Receiver-operator curves supported the sensitivity of HRQL tools in detecting health needs. CONCLUSION: Healthcare needs are complex and developing suitable questionnaires to measure these is difficult and time-consuming. Without a satisfactory means of measuring these needs, the extent to which disease impacts on health will continue to be underestimated. Further investigation on larger populations is warranted but HRQL tools appear to be a reasonable proxy for healthcare needs, as they identify the majority of needs in patients with coronary disease, an observation not previously reported in this patient group

Unmet health needs in patients with coronary heart disease: implications and potential for improvement in caring services

BACKGROUND: Improving the quality of health care services requires tailoring facilities to fulfil patients' needs. Satisfying patients' healthcare needs, listening to patients' opinions and building a closer provider-user partnership are central to the NHS. Few published studies have discussed cardiovascular patients' health needs, but they are not comprehensive and fail to explore the contribution of outcome to needs assessment. METHOD: A comprehensive self-administered health needs assessment (HNA) questionnaire was developed for concomitant use with generic (Short Form-12 and EuroQOL) and specific (Seattle Angina Questionnaire) health-related quality of life (HRQL) instruments on 242 patients admitted to the Acute Cardiac Unit, Nottingham. RESULTS: 38% reported difficulty accessing health facilities, 56% due to transport and 32% required a travelling companion. Mean HRQOL scores were lower in those living alone (P < 0.05) or who reported unsatisfactory accommodation. Dissatisfaction with transport affected patients' ease of access to healthcare facilities (P < 0.001). Younger patients (<65 y) were more likely to be socially isolated (P = 0.01). Women and patients with chronic disease were more likely to be concerned about housework (P < 0.05). Over 65 s (p < 0.05) of higher social classes (p < 0.01) and greater physical needs (p < 0.001) had more social needs, correlating moderately (0.32 < r < 0.63) with all HRQL domains except SAQ-AS. Several HRQL components were highly correlated with the HNA physical score (p < 0.001). CONCLUSIONS: Patients wanted more social (suitable accommodation, companionship, social visits) and physical (help aids, access to healthcare services, house work) support. The construct validity and intra-class reliability of the HNA tool were confirmed. Our results indicate a gap between patients' health needs and available services, highlighting potential areas for improvement in the quality of services

A longitudinal qualitative exploration of healthcare and informal support needs among survivors of critical illness: the RELINQUISH protocol.

Introduction and background: Survival following critical illness is associated with a significant burden of physical, emotional and psychosocial morbidity. Recovery can be protracted and incomplete, with important and sustained effects upon everyday life, including family life, social participation and return to work. In stark contrast with other critically ill patient groups (eg, those following cardiothoracic surgery), there are comparatively few interventional studies of rehabilitation among the general intensive care unit patient population. This paper outlines the protocol for a sub study of the RECOVER study: a randomised controlled trial evaluating a complex intervention of enhanced ward-based rehabilitation for patients following discharge from intensive care. Methods and analysis: The RELINQUISH study is a nested longitudinal, qualitative study of family support and perceived healthcare needs among RECOVER participants at key stages of the recovery process and at up to 1 year following hospital discharge. Its central premise is that recovery is a dynamic process wherein patients’ needs evolve over time. RELINQUISH is novel in that we will incorporate two parallel strategies into our data analysis: (1) a pragmatic health services-oriented approach, using an a priori analytical construct, the ‘Timing it Right’ framework and (2) a constructivist grounded theory approach which allows the emergence of new themes and theoretical understandings from the data. We will subsequently use Qualitative Health Needs Assessment methodology to inform the development of timely and responsive healthcare interventions throughout the recovery process. Ethics and dissemination: The protocol has been approved by the Lothian Research Ethics Committee (protocol number HSRU011). The study has been added to the UK Clinical Research Network Database (study ID. 9986). The authors will disseminate the findings in peer reviewed publications and to relevant critical care stakeholder groups.