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The purpose of this paper is to investigate the families’ and professional caregivers’ experience of mental health services for patients in the migrant population with intellectual disability (ID).

To highlight this rarely studied topic, the authors chose a qualitative approach, using a semi-structured interview guide. The authors performed a search for relevant articles. Three families of former patients of a specialized psychiatric inpatient unit and 12 professional caregivers were interviewed. The interviews were taped, transcribed and analyzed using a thematic analysis.

In total, 17 themes from the families’ answers and 14 themes from the caregivers’ answers were grouped into four main themes each. Two main themes were identical for both groups: perspectives on mental illness and “the Norwegian system.” Additionally, the families were concerned about the impact on the patient and family and coping strategies. The caregivers highlighted patient–caregiver interaction and family–caregiver interaction.

Further research should include the patients’ opinions based on the findings of this study. Also, studies including larger samples from both specialist services and community services are needed to develop evidence-based services for these patients.

Proposed adaptations to enable assessment and treatment of mental illness in migrants with ID should be adapted to cultural preferences. The following adaptations are proposed: inclusion of the entire family, awareness of cultural dimensions, information about the health care system, education in mental illness, the use of interpreters and adequate time spent with the families.

Mental health services for this group are an understudied topic. Clinical experience indicates that professionals struggle when providing services for such patients.

Effective knowledge management (KM) enables the health care organisations to reach their goals. In modern health care the empowered patients are active partners, whose preferences, needs and values should be taken into account. Shared decision making (SDM) aims at involving the patient and the health professionals as equal partners in care. The purpose of this paper is to present a new model of health care information and knowledge processes (IKPs) as a KM framework. The aim is to scrutinise what types of knowing can be identified the IKPs and how do the knowledge processes support SDM. The role of patients in the IKPs is discussed.

The qualitative case study was conducted in two Finnish university hospital districts in integrated care pathways of childhood obesity. In total, 30 professionals and three mothers and children were interviewed 2009-2011 and the findings were supported with a survey (n=13) and document material.

The findings indicate that the patients and families involvement in the IKPs is modest. This implies that SDM is not completely fulfilled which may affect the families commitment to positive lifestyle changes.

The data of the patients and families were limited due to the challenges with recruitment.

The detailed IKP model enables the health organisations to scrutinise their own IKPs and to identify the shortages in order to change practices.

This paper presents a new model of health care KM which recognises the patients as active partners.

Health care professionals (HCPs) face numerous barriers in providing services to limited English proficient (LEP) patients and their families. The purpose of this paper is to explore and expand on the limited scholarship concerning HCPs’ experiences using children as informal interpreters in pediatric consultations.

Ten HCPs from five different fields participated in this study. They were interviewed over the phone and replied to follow-up correspondence about their knowledge on policies for communicating with LEP patients and/or their families when providing medical care.

Using a thematic analysis five themes emerged across all cases: cultural awareness, communication quality, live interpreters as a solution, use of child language brokers (CLBs), and the norm of child language brokering. Through the development of the aforementioned themes, HCPs’ limited awareness of implications when using CLBs and of the established policies related to this phenomenon were apparent.

This lack of knowledge, acknowledged by HCPs, provides a platform from which to create awareness of the need for further education about the potential risks CLBs face when interpreting medical information and of the negative impact this process can have on the overall medical outcome of a patient. Furthermore, it allows the authors to address the ignorance within the health care system that has allowed vulnerabilities to LEP individuals being treated in health care facilities.

This chapter qualitatively explored the impact of including parent liaisons (i.e., parents with lived experience caring for a child with complex needs, who support other caregivers in navigating child and family needs) in a case conferencing model for children with complex medical/social needs. Case conferences are used to address fragmented care, shared decision-making, and set patient-centered goals. Seventeen semi-structured interviews were conducted with clinicians and parent liaisons to assess the involvement of parent liaisons in case conferencing. Two main themes included benefits of parent liaison involvement (10 subthemes) and challenges to parent liaison involvement (5 subthemes). Clinicians reported that liaison participation and support of patients reduced stress for clinicians as well as family members. Challenges to liaison involvement included clinical team/parent liaison communication delays, which were further exacerbated by the COVID-19 pandemic. Parent liaison involvement in case conferences is perceived to be beneficial to children with complex needs, their families, and the clinical team. Integration of liaisons ensures the familial perspective is included in clinical goal setting.

Purpose: To explore how families respond to the death and dying of their loved ones in a hospital setting, archival research was conducted using eight qualitative articles describing next-of-kins’ perceptions of end-of-life care in Veterans Affairs Medical Centers (VAMCs). The articles were based on the qualitative arm of the VA Health Services Research and Development (HSR&D) study entitled, “Best Practices for End-of-life Care and Comfort Care Order Sets for our Nation’s Veterans” (BEACON).

Design: The archival research consisted of an interactive methodological process of data immersion, analysis, and interpretation which resulted in the emergence of two overarching thematic frameworks called “losing control” and “holding on.”

Findings: “Losing control” is the process that occurs when the patient experiences a cascading sequence of deleterious biological events and situations rendering the caregiver no longer able to direct the timing or setting of the dying trajectory. The notion of “holding on” captures family member’s responses to the need to maintain control after relinquishing the patient’s care to the institutional setting. During the patient’s hospitalization, the dual dynamics of “losing control” and “holding on” unfolded in the spatial, temporal, and life narrative domains.

Originality: The findings not only contribute to better overall understanding of family members’ responses to death in the pre-COVID-19 hospital setting but also heighten the awareness of the complex spatial, temporal, and narrative issues faced by family members who lost a hospitalized loved one during the COVID-19 pandemic.

The purpose of this paper is to increase understanding about value creation to families in childhood obesity care in multiprofessional collaboration in an integrated care pathway (ICP).

The qualitative case study involves the ICPs of two Finnish University Hospital districts. The empirical data, collected between 2009 and 2012, consists of semi-structured interviews of 30 health professionals in primary and special health care, of three children and their mothers, a family questionnaire (n=13) complemented with care path instructions and memos of an ICP work group.

The findings indicate that organisational culture confirms boundaries which hinder transfer of information and sharing of knowledge between organisations and professional groups. The concepts of Chatman’s theory of everyday life information seeking complemented with the concepts of Burnett’s and Jaeger’s theory of information worlds are applicable to describe aspects of organisational culture on patient value creation in the ICP for obese children.

The data of the patients and families were limited. Interviews were completed with a questionnaire which has its limitations in qualitative research. In future studies, e.g., families’ focus-group interviews could bring new insights.

The practise of information transfer between Finnish primary and special health care need changes. Modern information technology, e.g., videoconference could be used to increase family involvement in the value creation and the environment should be more supportive for healthy lifestyle.

The study is one of the first which empirically applies Chatman’s and Burnett’s and Jaeger’s theories in a work-related setting.

The purpose of this paper is to present research into the area of internet support for professional‐public communication through a deeper understanding of the role that a web site can provide in meeting the information needs of critically ill patients in intensive care units (ICUs). The communication between clinicians and members of the patient's family in the stressful ICU is modelled to give an integrated view of the situation and thereby allow for the incorporation of the views of all stakeholders on how the internet can meet this communication need.

The paper takes a broad, holistic, systemic approach that integrates the latest information and communications technology tools and processes with rich qualitative data from all stakeholder groups. The data are interpreted through the use of system dynamic modelling to visually conceptualise information flows and communication between clinicians and family members of patients.

The paper conceptualises, visualises and simulates the communication that takes place in complex stressful settings, such as, in ICUs thereby increasing the understanding of web‐support for professional‐public communication in the complex area of healthcare.

The broad approach of the paper has sacrificed, detailed and in depth analysis of all aspects of this issue which would require a much more extensive study.

The results have been of practical value to those developing a particular ICU web site and thus could inform others.

In addition to the findings, this paper is innovative in the way systems dynamics is used to model information flows. The results demonstrate the value of this technique for visualising and manipulating entire systems of this kind.

Using Andersen’s (1968) behavioral model of health services use as a guiding conceptual framework, this study examined how receipt of family-centered care relates to the perceived family challenges for families of children with autism spectrum disorder (ASD).

Data from the 2009–2010 National Survey of Children with Special Health Care Needs (NS-CSHCN) were analyzed for 812 parents of children with ASD.

Multiple regression analyses provided substantive statistical evidence that a child’s race, the adequacy of a family’s insurance, and the stability of child’s health care needs significantly contributed to predicting his or her receipt of family-centered care. Further results suggested a relationship between receipt of family-centered care and the perception of challenge for these families; families receiving family-centered care perceive fewer challenges and feel less unmet need for child health services.

Family-centered professionals provide critical voices in the development of policies and programs geared toward improving the health outcomes of children with ASD and their families.

We wish to die peacefully in a manner suited to our values and taste. We also wish to be attended at our deathbed by people whom we love and try to find meaning in death. Here, I evaluate nursing of dying patients with regard to alienation of life and death from our daily living, problems concerning the judgment of death, how to die in a manner that fits the person's values and taste, and nursing for spiritual healing with traditional views of life and death, and cultural background of attending dying persons of the Japanese.

Successive governments have called for greater “empowerment” of the patient, reflected in the chief medical officer's call for more patient‐related outcome measures (PROM). This paper aims to bring together three‐linked studies.

First study: in 1999, the neurosurgical patient was seen as “expert” to identify PROM outcomes, based upon a patient and carer‐designed self‐administered postal questionnaire in a regional two‐year retrospective survey of subarachnoid haemorrhage (SAH) patients with a 77 per cent response rate, designated treatment‐as‐usual (TAU) cohort (n=142).Second study: in the same region, following the implementing of the specialist neuro‐vascular nurse (SNVN), the SNVN recommendation was evaluated in a two‐year prospective study (n=184) that provided family‐specific psychosocial support and a continuity of care linking hospital and community; the response rate was 87 per cent. Third study: A re‐analysis of the national SAH study (n=2,380), by projecting the TAU and SNVN results onto clinically matched patients within the National cohort to estimate the potential “savings” if all 34 neurosurgical units had an SNVN type service.

First study: respondents identified many psychosocial and fiscal problems but recommended a SNVN to reduce these difficulties. Second study: the TAU and SNVN patient's were a close clinical match and using the TAU as a control group, it was found that there were major psychosocial and fiscal benefits for SNVN patients and carers, who more speedily re‐established their lives.Third study: it was estimated that this would have produced major financial benefits, e.g. 4,165 fewer bed occupancy days, saving £2.5million; reduced time‐off work for patients and carers, saving £8.1million; and, after deducting cost of a national SNVN service, a combined saving for the service and families of an estimated £9.83 million p.a. Thus, addressing PROM outcomes, through an integrated psychosocial service in neurosurgery was cost‐effective, benefited families, the service, and the wider economy and should be a factor when considering pressurised departmental budgets.

Overall, what the two regional studies and the re‐analysis of the national study showed was that there are benefits from treating the “patient as expert” and taking on board their agendas. There is a need for a more integrated approach to treatment and care that is of value to the service, patients, families and the wider economy.