DojoIBL: Nurturing Communities of Inquiry

Demo paper presented at EC-TEL 2016

Disorder and disconnection: parent experiences of liminality when caring for a dying child

Parents caring for a child with a life threatening or life limiting illness experience a protracted and largely unknown journey, as they and their child oscillate somewhere between life and death. Using an interpretive qualitative approach, interviews were conducted with parents (n = 25) of children who had died. Findings reveal parents’ experiences to be characterised by personal disorder and transformation as well as social marginalisation and disconnection. As such they confirm the validity of understanding these experiences as, fundamentally, one of liminality, in terms of both individual and collective response. In dissecting two inter-related dimensions of liminality, an underlying tension between how transition is subjectively experienced and how it is socially regulated is exposed. In particular, a structural failure to recognise the chronic nature of felt liminality can impede parents’ effective transition.

Assessing the Societal Impact of Research: The Relational Engagement Approach

Marketing and policy researchers seeking to increase the societal impact of their scholarship should engage directly with relevant stakeholders. For maximum societal effect, this engagement needs to occur both within the research process and throughout the complex process of knowledge transfer. A relational engagement approach to research impact is proposed as complementary and building upon traditional approaches. Traditional approaches to impact employ bibliometric measures and focus on the creation and use of journal articles by scholarly audiences, an important but incomplete part of the academic process. The authors suggest expanding the strategies and measures of impact to include process assessments for specific stakeholders across the entire course of impact: from the creation, awareness, and use of knowledge to societal impact. This relational engagement approach involves the co-creation of research with audiences beyond academia. The authors hope to begin a dialogue on the strategies researchers can make to increase the potential societal benefits of their research.

GiveMe Shelter: a people-centred design process for promoting independent inquiry-led learning in engineering

It has become increasingly common for tasks traditionally carried out by engineers to be undertaken by technicians and technologist with access to sophisticated computers and software that can often perform complex calculations that were previously the responsibility of engineers. Not surprisingly, this development raises serious questions about the future role of engineers and the education needed to address these changes in technology as well as emerging priorities from societal to environmental challenges. In response to these challenges, a new design module was created for undergraduate engineering students to design and build temporary shelters for a wide variety of end users from refugees, to the homeless and children. Even though the module provided guidance on principles of design thinking and methods for observing users needs through field studies, the students found it difficult to respond to needs of specific end users but instead focused more on purely technical issues.

No second chance: junior neonatal nurses' experiences of caring for babies at the end-of-life and their families

Death of an infant is acutely stressful for parents and professionals. Little is known about junior nurses' experiences providing end-of-life care in Neonatal units (NNU). This study aimed to better understand junior nurses' experiences providing end-of-life care in NNU. Neonatal nurses (n = 12) with less than 3 years experience participated in a focus group. Nominal Group Technique (NGT) was used to build consensus around the challenges faced, alongside suggested developments in improving future care provision. Primary analysis involved successive rounds of ranking and decision-making whilst secondary analysis involved thematic analysis. All issues, whether environmental, professional or social appeared driven by an awareness on the part of nurses, that there was no ‘second chance’ which created a huge pressure to ‘get if right’ for the infants and families. Regarding future care 2 areas of improvement identified were ‘Education and Training’ and Support. This paper unpacks these findings making recommendations for practice.

Caring for the bereaved father in the NICU

This refelctive paper explores the issues surrounding the support of a bereaved father (his wife died during childbirth) whose baby was in the NICU

Child Sexual Exploitation in Northern Ireland Report of the Independent Inquiry (PDF 2.73MB)

Independent Inquiry into Child Sexual Exploitation (CSE), led by Kathleen Marshall In September 2013, a Ministerial Summit was held on the theme of child sexual exploitation (CSE) in Northern Ireland. The Police Service of Northern Ireland (PSNI) referred to Operation Owl, an investigation of allegations of CSE in Northern Ireland, which had resulted in a number of adults being interviewed and some being arrested. Two weeks later, the then Minister for Health, Social Services and Public Safety, Edwin Poots, announced three actions to address this issue: an ongoing PSNI investigation focusing on 22 children and young people; a thematic review of these cases by the Safeguarding Board for Northern Ireland (SBNI); and an independent, expert-led inquiry into CSE in Northern Ireland, to be commissioned by the Minister for Health, Social Services and Public Safety and the Minister of Justice. The Minister for Education agreed that the Education and Training Inspectorate (ETI) would enjoin the Inquiry in relation to schools and the effectiveness of the statutory curriculum with respect to CSE. The Inquiry was to focus on both children and young people living at home in the community and those living in care. This is an executive summary of the report of this Inquiry.    

Caring for You and Your Information - Consultation Response Document (MS Word 105KB)

Department's response to public consultation

Navigating the Self in Diverse Work Contexts

Navigating the self is critical for working in a diverse world, in which different identities interact in social space. This chapter presents five theoretical perspectives on how individuals navigate the self in diverse organizational contexts—social identity, critical identity, (role) identity, narrative-as-identity, and identity work. We review these five prominent theoretical perspectives on identity processes in diverse contexts to explicate various ways in which individuals actively participate in the co-construction of their identities in diverse contexts. As a next step in research, identity, diversity, and relationship scholars are encouraged to inquire into the generativity of proposed tactics for navigating the self in order to identify pathways for cultivating more positive identities in diverse work settings. The examination of positive relational identities is considered a promising path for further inquiry in this domain.

Relational and reproductive trajectories leading to adolescent pregnancy in Portugal: a national and regional characterization

INTRODUCTION: The current study aimed to describe the relational and reproductive trajectories leading to adolescent pregnancy in Portugal, and to explore whether there were differences in this process according to adolescents' place of residence. MATERIAL AND METHODS: Data were collected between 2008 and 2013 in 42 public health services using a self-report questionnaire developed by the researchers. The sample consisted of a nationally representative group of pregnant adolescents (n = 459). RESULTS: Regardless of having had one (59.91%) or multiple sexual partners (40.09%), the majority of adolescents became pregnant in a romantic relationship, using contraception at the time of the conception and knowing the contraceptive failure which led to pregnancy (39.22%). In some regions other trajectories were highly prevalent, reflecting options such as planning the pregnancy (Alentejo Region/ Azores Islands), not using contraception (Centro Region/Madeira Islands) or using it incorrectly, without identifying the contraceptive failure (Madeira Islands). On average, romantic relationships were longer than 19 months and adolescents' partners were older than themselves (> 4 years) and no longer in school (75.16%); these results were particularly significant when the pregnancy was planned. DISCUSSION: The knowledge gained in this study shows that prevention efforts must be targeted according to the adolescents' needs in each region and should include high-risk male groups. CONCLUSION: Our results may enable more efficient health policies to prevent adolescent pregnancy in different country regions and support educators and health care providers on sexual education and family planning efforts.

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.

GPs Experience of Caring for Children with Cancer Receiving Palliative Care at Home

Background The study being undertaken builds on earlier work that found general practitioners (GPs) were at times uncertain of their role in paediatric palliative care and questioned whether their involvement had been beneficial to the child and family. The rarity of childhood cancer makes it difficult for GPs to develop or maintain palliative care knowledge and skills yet the GP is perceived by the family as the gatekeeper of care within the community. Aim The study is examining GPs perception of their role in caring for an individual child with cancer receiving palliative care and comparing this with families' perceptions of their GP's roles. Methodology The methodology incorporates tape-recorded semi-structured interviews, thematic framework analysis and Q methodology (QM) to capture the experiences of GPs who have cared for a child with cancer receiving palliative care as well as the perspectives of care experienced by the families. The semi-structured interview sample comprises 10 families (parents/guardians) whose child has been treated at a regional childhood cancer centre and their GPs. A further 40–60 GPs will be involved in the QM. Findings Findings detailing GP experiences from the initial study along with the preliminary findings of the semi-structured interviews with parents and GPs will be presented. Papers' contribution The results will identify and clarify GPs perceptions of their roles, and what families perceive their GPs role to be, enabling development of strategies to support GPs roles. It is anticipated that findings will inform the wider field of palliative care generally and the practice of both hospital and community paediatricians.

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

Healthcare Staffs’ Experiences and Perceptions of Caring for People with Dementia in the Acute Setting: Qualitative Evidence Synthesis

Background Dementia is a global issue, with increasing prevalence rates impacting on health services internationally. People with dementia are frequently admitted to hospital, an environment that may not be suited to their needs. While many initiatives have been developed to improve their care in the acute setting, there is a lack of cohesive understanding of how staff experience and perceive the care they give to people with dementia in the acute setting. Objectives The aim of this qualitative synthesis was to explore health care staffs’ experiences and perceptions of caring for people with dementia in the acute setting. Qualitative synthesis can bring together isolated findings in a meaningful way that can inform policy development. Settings A screening process, using inclusion/exclusion criteria, identified qualitative studies that focused on health care staff caring for people with dementia in acute settings. Participants Twelve reports of nine studies were included for synthesis. Data extraction was conducted on each report by two researchers. Methods Framework synthesis was employed using VIPS framework, using Values, Individualised, Perspective and Social and psychological as concepts to guide synthesis. The VIPS framework has previously been used for exploring approaches to caring for people with dementia. Quality appraisal was conducted using Critical Appraisal Skills Programme (CASP) and NVivo facilitated sensitivity analysis to ensure confidence in the findings. Results Key themes, derived from VIPS, included a number of specific subthemes that examined: infrastructure and care pathways, person-centred approaches to care, how the person interacts with their environment and other patients, and family involvement in care decisions. The synthesis identified barriers to appropriate care for the person with dementia. These include ineffective pathways of care, unsuitable environments, inadequate resources and staffing levels and lack of emphasis on education and training for staff caring for people with dementia. Conclusions This review has identified key issues in the care of people with dementia in the acute setting: improving pathways of care, creating suitable environments, addressing resources and staffing levels and placing emphasis on the education for staff caring for people with dementia. Recommendations are made for practice consideration, policy development and future research. Leadership is required to instil the values needed to care for this client group in an effective and personcentred way. Qualitative evidence synthesis can inform policy and in this case, recommends VIPS as a suitable framework for guiding decisions around care for people with dementia in acute settings.