Application of action research in the field of healthcare: a scoping review protocol.

Background: Traditional research approaches are increasingly challenged in healthcare contexts as they produce abstract thinking rather than practical application. In this regard, action research is a growing area of popularity and interest, essentially because of its dual focus on theory and action. However, there is a need for action researchers not only to justify their research approach but also to demonstrate the quality of their empirical studies. Therefore, the authors set out to examine the current status of the quality of extant action research studies in healthcare to encourage improved scholarship in this area. The aim of this scoping review is to identify, explore and map the literature regarding the application of action research in either individual, group or organisational domains in any healthcare context. Methods: The systematic scoping review will search the literature within the databases of CINAHL, PubMed and ABI/Inform within the recent five-year period to investigate the scientific evidence of the quality of action research studies in healthcare contexts. The review will be guided by Arksey and O'Malley's five mandatory steps, which have been updated and published online by the Joanna Briggs Institute. The review will follow the PRISMA-ScR framework guidelines to ensure the standard of the methodological and reporting approaches are exemplary. Conclusion: This paper outlines the protocol for an exploratory scoping review to systematically and comprehensively map out the evidence as to whether action research studies demonstrate explicitly how the essential factors of a comprehensive framework of action research are upheld. The review will summarise the evidence on the quality of current action research studies in healthcare. It is anticipated that the findings will inform future action researchers in designing studies to ensure the quality of the studies is upheld.

'It can be difficult to find the right words': Parents' needs when breaking news and communicating to children with cancer and their siblings.

PURPOSE: This paper explores parents' experiences of breaking news and communicating to the child with cancer and their siblings, and identifies the supports parents request to help them in this role. This paper represents one component of a wider action research study which employed mixed methods to explore supports needed by parents of children with a cancer diagnosis in the Republic of Ireland. RESEARCH DESIGN: This paper reports on the survey phase of the study, which involved the distribution of a postal survey to 550 families of children in cancer treatment and remission. This survey included four open-ended questions exploring parents' experiences of breaking news and communicating about the illness to the ill child and his/her siblings. Descriptive statistics on the profile of the parents were generated with computer software package SPSS and qualitative responses were analyzed using the survey questions as the initial framework. FINDINGS: Parents identified four interventions that helped ease the distress of these difficult conversations: coaching, resources, team engagement, and play therapy. Parents expressed concern for siblings, describing them as "suffering" and "forgotten". Parents requested four sibling-specific interventions: the creation of resources for siblings, therapeutic support, coaching for parent-sibling conversations, standardize a family meeting with the multi-disciplinary team that includes siblings. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: This paper demonstrates how the practical supports requested by parents which are consistent with the principles embedded within the internationally defined psychosocial standards of care could be translated into practice when supporting parents to communicate with children in the context of pediatric cancer.

Assessing the impact of dementia inclusive environmental adjustment in the emergency department.

OBJECTIVES: Acute hospitals, in particular the emergency department, can be disorienting for people living with dementia. As part of a larger project to improve care for people living with dementia, dementia-inclusive modifications were made to two emergency department bays in a large acute care hospital in Ireland. Modifications to spatial configuration included noise reduction, altered lighting and the addition of an orientation aid and fixed seating for relatives. METHOD: A mixed methods approach was employed with both service user and service provider perspectives explored (survey of service providers (n = 16) and interviews with family carers (n = 10) at one time point and interviews with service providers (n = 8 and n = 5) and key stakeholders (n = 3) as well as audit data (at two time points) to evaluate the impact of the modifications made to the emergency department. RESULTS: Orientation and navigation within the modified bays were improved though technical issues with the orientation aid were highlighted. Further user information on the functionality of the adjustable lighting would be required to maximise its benefits. This lighting and use of calming colours, together with the addition of noise-reduction bay screens, served to reduce sensory stimulation. The provision of adequate space and seating for family carers was extremely beneficial. The removal of unnecessary equipment and use of new structures to store relevant clinical equipment were other positive changes implemented. A number of challenges in the design development of the modified bays were highlighted, as well as ongoing broader environmental challenges within the emergency department environment. CONCLUSION: The findings suggest that the modified bays contributed positively to the experience of people living with dementia and their families in the emergency department.

Acute hospital staff's attitudes towards dementia and perceived dementia knowledge: a cross-sectional survey in Ireland.

BACKGROUND: Little is known about staff's attitudes in Irish acute hospital settings towards people living with dementia and their perceived dementia knowledge. The aim of this study was to understand the general level of dementia knowledge and attitudes towards dementia in different types of hospital staff, as well as to explore the potential influence of previous dementia training and experience (having a family member with dementia) and the potential moderating effects of personal characteristics. This data was required to plan and deliver general and targeted educational interventions to raise awareness of dementia throughout the acute services. METHODS: A cross-sectional survey was carried out among a diverse range of hospital staff (n = 1795) in three urban acute general hospitals in Ireland, including doctors, nurses, healthcare attendants, allied professionals, and general support staff. Participants' perceived dementia knowledge and attitudes were assessed as well as their previous dementia training and experience. To measure participant's attitude towards dementia, the validated Approaches to Dementia Questionnaire (ADQ) was used. RESULTS: Hospital staff demonstrated positive attitudes towards people living with dementia, and believed they had a fair to moderate understanding of dementia. Both 'having previous dementia training' and 'having a relative living with dementia' predicted attitude towards dementia and perceived dementia knowledge. Interestingly, certain personal staff characteristics did impact dementia training in predicting attitude towards dementia and perceived dementia knowledge. CONCLUSION: This study provides a baseline of data regarding the attitudes towards dementia and perceived dementia knowledge for hospital staff in Irish acute hospitals. The results can inform educational initiatives that target different hospital staff, in order to increase awareness and knowledge to improve quality of dementia care in Irish hospitals.

You are at rock bottom: A qualitative systematic review of the needs of bereaved parents as they journey through the death of their child to cancer.

PROBLEM IDENTIFICATION: This systematic review will examine the social support needs of bereaved parents in the specific context of pediatric cancer by synthesizing the qualitative evidence. Social support encompasses emotional, practical, informational, and meaning-making support needs. LITERATURE SEARCH: The Joanna Briggs Institute procedures for conducting qualitative systematic reviews guided every stage of this review. Four databases (PsychInfo, CINAHL, Pubmed, and ASSIA) were systematically searched, in addition to the gray literature and scoping review. Through a five-step critical appraisal process 11 out of 668 potential articles were identified as meeting the inclusion criteria. DATA EVALUATION/SYNTHESIS: Relevant findings were synthesized with a thematic-synthesis approach. Findings, which follow the journey of bereaved parents integrated under the core-category "Needs." This encompasses of four higher-level categories: Last days: Parent needs when caring for their dying child Rest in peace: Parent needs during the child's death Feeling abandoned: Parent needs for contact after the child's death Searching for Meaning: Parents needs when making sense of loss. CONCLUSION: Informational support needs is largely unexplored in academic literature. Staff in the treating-hospital are central in offering bereavement-support to parents, who may otherwise feel that they have lost their second home (hospital) and second family (staff).

Healthcare providers' views and experiences of non-specialist palliative care in hospitals: A qualitative systematic review and thematic synthesis.

BACKGROUND: Healthcare providers working in hospitals are frequently exposed to patients with palliative care needs. For most patients, these reflect non-specialist rather than specialist palliative care needs. Embedding palliative care principles early in patients' disease trajectories within acute care delivery in hospitals, however, is a challenge. How to best understand the experiences of those providing non-specialist palliative care in hospitals has not been systematically assessed. AIM: To synthesise the evidence on healthcare providers' views and experiences of non-specialist palliative care in hospitals. DESIGN: A qualitative systematic review and thematic synthesis using Thomas and Harden's thematic synthesis framework. DATA SOURCES: Databases of MEDLINE, CINAHL, PsycINFO and EMBASE were searched from date of inception to March 2018. Studies were eligible for inclusion if they reported on healthcare providers' views and experiences of non-specialist palliative care in hospitals. Studies were appraised for quality but not excluded on that basis. The review was prospectively registered with the International Prospective Register of Systematic Reviews. RESULTS: Thirty-nine papers of 37 studies were included, representing 985 hospital healthcare providers' views and experiences. Four major analytical themes emerged; 'Understanding of Palliative Care', 'Complexities of Communication', 'Hospital Ecosystem' and 'Doctors and Nurses - a Different Lens'. CONCLUSIONS: Non-specialist palliative care in hospitals is operationalised as care in the last weeks and days of life. The organisation of acute care, inter-disciplinary working practices, clinician attitudes, poor communication structures and lack of education and training in palliative care principles exacerbates poor implementation of this care earlier for patients in hospitals.

Dying in acute hospitals: voices of bereaved relatives.

BACKGROUND: Internationally there is an increasing concern about the quality of end-of-life care (EoLC) provided in acute hospitals. More people are cared for at end of life and die in acute hospitals than in any other healthcare setting. This paper reports the views of bereaved relatives on the experience of care they and the person that died received during their last admission in two university adult acute tertiary hospitals. METHODS: Relatives of patients who died were invited to participate in a post-bereavement postal survey. An adapted version of VOICES (Views of Informal Carers - Evaluation of Services) questionnaire was used. VOICES MaJam has 36 closed questions and four open-ended questions. Data were gathered in three waves and analysed using SPSS and NVivo. 356 respondents completed the survey (46% response rate). RESULTS: The majority of respondents (87%: n = 303) rated the quality of care as outstanding, excellent or good during the last admission to hospital. The quality of care by nurses, doctors and other staff was highly rated. Overall, care needs were well met; however, findings identified areas of care which could be improved, including communication and the provision of emotional and spiritual support. In addition, relatives strongly endorsed the provision of EoLC in single occupancy rooms, the availability of family rooms on acute hospital wards and the provision of bereavement support. CONCLUSIONS: This research provides a powerful snapshot in time into what works well and what could be improved in EoLC in acute hospitals. Findings are reported under several themes, including the overall quality of care, meeting care needs, communication, the hospital environment and support for relatives. Results indicate that improvements can be made that build on existing good practice that will enhance the experience of care for dying persons and their relatives. The study adds insights in relation to relative's priorities for EoLC in acute hospitals and can advance care providers', policy makers' and educationalists' priorities for service improvement.

Non-specialist palliative care: A principle-based concept analysis.

BACKGROUND: Building palliative care capacity among all healthcare practitioners caring for patients with chronic illnesses, who do not work in specialist palliative care services (non-specialist palliative care), is fundamental in providing more responsive and sustainable palliative care. Varying terminology such as 'generalist', 'basic' and 'a palliative approach' are used to describe this care but do not necessarily mean the same thing. Internationally, there are also variations between levels of palliative care which means that non-specialist palliative care may be applied inconsistently in practice because of this. Thus, a systematic exploration of the concept of non-specialist palliative care is warranted. AIM: To advance conceptual, theoretical and operational understandings of and clarity around the concept of non-specialist palliative care. DESIGN: The principle-based method of concept analysis, from the perspective of four overarching principles, such as epistemological, pragmatic, logical and linguistic, were used to analyse non-specialist palliative care. DATA SOURCES: The databases of CINAHL, PubMed, PsycINFO, The Cochrane Library and Embase were searched. Additional searches of grey literature databases, key text books, national palliative care policies and websites of chronic illness and palliative care organisations were also undertaken. CONCLUSION: Essential attributes of non-specialist palliative care were identified but were generally poorly measured and understood in practice. This concept is strongly associated with quality of life, holism and patient-centred care, and there was blurring of roles and boundaries particularly with specialist palliative care. Non-specialist palliative care is conceptually immature, presenting a challenge for healthcare practitioners on how this clinical care may be planned, delivered and measured.

Meeting the Needs of People Who Identify as Lesbian, Gay, Bisexual, Transgender, and Queer in Palliative Care Settings.

The end-of-life needs of people who identify as lesbian, gay, bisexual, transgender, and queer (LGBTQ) are in many ways identical to those of non-LGBTQ people; however, for a variety of reasons, they are at risk of receiving suboptimal care, irrespective of whether they are being cared for at home or in a nursing home, hospital, or hospice. Although research on the needs of LGBTQ people at the end of life is sparse, drawing on what is available this article explores some of their unique concerns that practitioners should consider during their interactions.

Voices that matter: end-of-life care in two acute hospitals from the perspective of bereaved relatives.

BACKGROUND: End-of-life care (EoLC) is an experience that touches the lives of everyone. Dying in an acute hospital is a common occurrence in developed countries across the world. Previous studies have shown that there is wide variation in EoLC and at times is experienced as being of poor quality. Assessing and measuring the quality of care provided is a key component of all healthcare systems. This paper reports on the qualitative analysis of open-ended free text questions that were asked as part of a post-bereavement survey conducted in two adult acute hospitals in Ireland. METHODS: This was a quantitative descriptive post-bereavement postal survey, gathering data retrospectively from relatives or friends of patients who died, utilising an adapted version of the VOICES (Views of Informal Carers - Evaluation of Services) questionnaire. VOICES MaJam has 29 core questions, seven questions requesting personal demographic information and four open-ended questions gathering descriptive data about the care experience during the patient's last admission to hospital. A total of 356 valid questionnaires were returned. Qualitative data were managed, coded and analysed with NVivo 10, using a template analysis framework approach. RESULTS: Three quarters (75%: n = 268) responded to at least one of the open-ended questions. Several key themes emerged, indicating areas that require particular attention in EoLC. Two themes relate to how care needs are met and how the hospital environment has a critical influence on EoLC experiences. The remaining three themes relate more to the interpersonal context including whether patients are treated with dignity and respect, the psychological, emotional and spiritual needs of patients and their family members and communication. CONCLUSIONS: Acute hospitals need to ensure that patients and their relatives receive high quality EoLC. Seeking the views of bereaved relatives should be considered by all hospitals and healthcare settings to ascertain the quality of care at end of life. This study contributes to our understanding and knowledge of what good EoLC looks like and where care can be improved, thus enabling hospitals to direct and inform quality improvement.

Decision-making among patients and their family in ALS care: a review.

OBJECTIVES: Practice guidelines in ALS care emphasise the role of the patient and their family in the decision-making process. We aimed to examine the ALS patient/family relationship in the decision-making process and to ascertain how patients and their family can shape one another's decisions pertaining to care. METHODS: We conducted a review of peer-reviewed empirical research, published in full and in English between January 2007 and January 2017, relating to care decision-making among ALS patients and their family. Database sources included: Medline; CINAHL; AMED; PsycINFO; PsycARTICLES; and Social Sciences Full Text. A narrative synthesis was undertaken. RESULTS: Forty-seven studies from the empirical literature were extracted. The family viewpoint was captured primarily from family members with direct care-giving duties. Patients' cognitive status was not routinely assessed. The findings revealed that the decision-making process in ALS care can be contoured by patients' and family caregivers' perceived responsibilities to one another and to the wider family. CONCLUSIONS: Greater attention to family member roles beyond the primary caregiver role is needed. Strategies that integrate cognitively-impaired patients into the family decision-making process require investigation. Identification of the domains in which ALS patients and their family members support one another in the decision-making process could facilitate the development of patient/family decision-making tools in ALS care.

Between worlds: the experiences and needs of former family carers.

While the financial, physical and psycho-social burden for caregivers is recorded, less is known about the post-caring experience. The purpose of this qualitative descriptive study was to explore the experiences and needs of Irish former family carers in the post-caring/care transitions period. Former family carers were defined as family members who provided physical and/or social care to a family member with an illness or disability in the home for at least 6 months prior to nursing home/hospice placement or death. A total of 40 family carers were recruited from members of or known to voluntary care groups/associations in Ireland. Fourteen participants took part in a focus group discussion and 26 participated in one-to-one, semi-structured interviews, all of which were undertaken in 2010. The focus group discussion focused on gaining a broad understanding of the participants' post-caring experiences and the emergent themes formed the basis for the development of a semi-structured interview guide. Data from the focus group were analysed inductively using Creswell's qualitative analysis framework, while template analysis was the method of analysis for the 26 individual interviews. For the participants in this study, post-caring was a transition that comprised three, interrelated, non-linear, iterative themes that were represented as 'loss of the caring world', 'living in loss' and 'moving on' and symbolised as being 'between worlds'. Transition was a complex interplay of emotions overlaid with economic and social concerns that had implications for their sense of health and well-being. This exploratory study begins to address the dearth of data on post-caring/care experiences, but further research is needed to inform support interventions to enable former family carers to 'move on'.

Understanding the challenges of palliative care in everyday clinical practice: an example from a COPD action research project.

Palliative care seeks to improve the quality of life for patients suffering from the impact of life-limiting illnesses. Palliative care encompasses but is more than end-of-life care, which is defined as care during the final hours/days/weeks of life. Although palliative care policies increasingly require all healthcare professionals to have at least basic or non-specialist skills in palliative care, international evidence suggests there are difficulties in realising such policies. This study reports on an action research project aimed at developing respiratory nursing practice to address the palliative care needs of patients with advanced chronic obstructive pulmonary disease (COPD). The findings suggest that interlevel dynamics at individual, team, interdepartmental and organisational levels are an important factor in the capacity of respiratory nurses to embed non-specialist palliative care in their practice. At best, current efforts to embed palliative care in everyday practice may improve end-of-life care in the final hours/days/weeks of life. However, embedding palliative care in everyday practice requires a more fundamental shift in the organisation of care.

Policy analysis: palliative care in Ireland.

Palliative care for patients with advanced illness is a subject of growing importance in health services, policy and research. In 2001 Ireland became one of the first nations to publish a dedicated national palliative care policy. This paper uses the 'policy analysis triangle' as a framework to examine what the policy entailed, where the key ideas originated, why the policy process was activated, who were the key actors, and what were the main consequences. Although palliative care provision expanded following publication, priorities that were unaddressed or not fully embraced on the national policy agenda are identified. The factors underlying areas of non-fulfilment of policy are then discussed. In particular, the analysis highlights that policy initiatives in a relatively new field of healthcare face a trade-off between ambition and feasibility. Key policy goals could not be realised given the large resource commitments required; the competition for resources from other, better-established healthcare sectors; and challenges in expanding workforce and capacity. Additionally, the inherently cross-sectoral nature of palliative care complicated the co-ordination of support for the policy. Policy initiatives in emerging fields such as palliative care should address carefully feasibility and support in their conception and implementation.

Informal care-giving in advanced chronic obstructive pulmonary disease: lay knowledge and experience.

AIM: The aim of this research was to explore the experiences of informal caregivers providing care in the home to a family member with chronic obstructive pulmonary disease. BACKGROUND: Advances in chronic obstructive pulmonary disease treatment, increasing emphasis on early discharge and home-based care programmes enable those with advanced chronic obstructive pulmonary disease to remain at home. However, little is known about the consequences of these initiatives for informal caregivers. DESIGN: A qualitative exploratory approach. METHODS: Semi-structured interviews with 11 family caregivers of people with advanced chronic obstructive pulmonary disease. RESULTS: Six core themes emerged including 'then and now' reflecting caregivers' sense of loss and enmeshment with the illness experience and burden. The caregivers' experience of illness burden included symptom, cultural and lifeworld meanings. Relationships between formal health care and healthcare professionals were rendered difficult by their perceived failure to look beyond acute exacerbations as discrete events rather than integral to the illness trajectory as a whole. CONCLUSION: In failing to actively engage with caregivers, our current approaches to supporting persons with advanced chronic obstructive pulmonary disease may compound the care and illness burden experienced by family caregivers. RELEVANCE TO PRACTICE: This study illustrates the potential for nursing to increase or lessen the caregiver burden through understanding the illness experience as one that is shared by both caregiver and care recipient.