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.

Providing Palliative Care for the Child with Cancer: The Experience of GPs

Background Childhood cancers are rare and general practitioners (GPs) have limited experience in caring for these children and even less in providing their palliative care. Most families prefer that their child is cared for at home in the palliative phase of their illness, with professional support from those known to them (Chambers and Oakhill 1995, Vickers and Carlisle 2000, Craft and Killen 2007). A community based qualitative study examined the experiences of ten GPs following their involvement in the care of a child with cancer receiving palliative care within the family home. Methods Data collection was through 1:1 in-depth interviews and facilitated case discussion supported by field notes and grounded theory analysis (chronological comparative data analysis identifying generated themes). Social worlds theory was used as a framework to aid examination, and facilitate critical understanding, of the experiences of the GPs. Findings This presentation focuses on five of the findings relating to the experiences of the GP; the impact of minimal contact; lack of knowledge and experience, uncertain role, out of hours service provision and the emotional toll. Findings highlighted that GPs often have to re-establish their role at the child’s transition to palliative care. Factors hindering the GP in this process include a deficit of specialist knowledge and experience of paediatric palliative care and lack of role clarity. Conclusions/points of interest Strategies for enhancing the role of the Macmillan team in supporting GPs have been identified by this study, such as enhanced collaborative working. Findings have also provided further confirmation of the substantial variation in out of hours medical palliative care provision; with evidence that some GPs work beyond their remit in providing informal out of hours care. This presentation details the findings of one aspect (the experiences of GPs) of a wider study that explored the experiences of 54 community based health professionals (GPs, community nurses and allied health professionals) who had been involved in caring for a dying with cancer receiving palliative care at home (Neilson 2009).

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.

Evaluating the efficiency of community-based HIV testing and counseling strategies in sub-Saharan Africa

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

What is best for Esther? Building improvement coaching capacity with and for users in health and social Care-A case study

While coaching and customer involvement can enhance the improvement of health and social care, many organizations struggle to develop their improvement capability; it is unclear how best to accomplish this. We examined one attempt at training improvement coaches. The program, set in the Esther Network for integrated care in rural Jonkoping County, Sweden, included eight 1-day sessions spanning 7 months in 2011. A senior citizen joined the faculty in all training sessions. Aiming to discern which elements in the program were essential for assuming the role of improvement coach, we used a case-study design with a qualitative approach. Our focus group interviews included 17 informants: 11 coaches, 3 faculty members, and 3 senior citizens. We performed manifest content analysis of the interview data. Creating will, ideas, execution, and sustainability emerged as crucial elements. These elements were promoted by customer focusembodied by the senior citizen trainershared values and a solution-focused approach, by the supportive coach network and by participants' expanded systems understanding. These elements emerged as more important than specific improvement tools and are worth considering also elsewhere when seeking to develop improvement capability in health and social care organizations.

Minimum Data Set (MDS) Section Q Education: Helping People Return to the Community, February 12, 2014

Explanation of Minimum Data Set (MDS), implementation of Section Q, overview of the program, local contacts and functions, Referral Agency information, role and assistance provided by Long-Term care Ombudsman

Whistleblowing process in Finnish health care

Wrongdoing in health care is harmful action that jeopardizes patient safety and can be targeted at the patient or employees. Wrongdoing can vary from illegal, unethical or unprofessional action to inappropriate behavior in the workplace. Whistleblowing can be considered as a process where wrongdoing is suspected or oberved in health care by health care professionals and disclosed to the party that can influence the wrongful action. Whistleblowing causes severe harm to the whistleblower and to the object of whistleblowing complaint, to their personnel life and working community. The aim of this study was to analyze whistleblowing process in Finnish health care. The overall goal is to raise concern about wrongdoing and whistleblowing in Finnish health care. In this cross-sectional descriptive study the data were collected (n = 397) with probability sampling from health care professionals and members of The Union of Health and Social Care Professionals in Finland Tehy. The data were collected with questionnaire: “Whistleblowing -väärinkäytösten paljastaminen terveydenhuollossa” developed for this study and by using Webropol questionnaire -software during 26.6.-17.7.2015. The data were analyzed statistically. According to the results of this study health care professionals had suspected (67 %) and observed (66 %) wrongdoing in health care, more often than once a month (30%). Mostly were suspected (37 %) and observed (36%) inadequacy of the personnel and least violence toward the patient (3 %). Wrongdoing was whistle blown (suspected 29 %, observed 40 %) primarily inside the organization to the closest supervisor (76 %), face-to-face (88 %). Mostly the whistle was blown on nurses’ wrongdoing (58 %). Whistleblowing act didn’t end the wrongdoing (52 %) and whistleblowing had negative consequences to the whistleblower such as discrimination by the manager (35 %). Respondents with work experience less than ten years (62 %), working in temporary position (75 %) or in management position (88 %) were, more unwilling to blow the whistle. Whistleblowing should be conducted internally, to the closest manager in writing and anonymously. Wrongdoing should be dealt between the parties involved, and written warning should ensue from wrongdoing. According to the results of this study whistleblowing on wrongdoing in health care causes negative consequences to the whistleblower. In future, attention in health care should be paid to preventing wrongdoing and enhancing whistleblowing in order to decrease wrongdoing and lessen the consequences that whistleblowers face after blowing the whistle.

The effectiveness of community-based interventions to improve maternal and infant health in the Northeast of Brazil

EMOND, Alan et al. The effectiveness of community-based interventions to improve maternal and infant health in the Northeast of Brazil. Revista Panamericana de Salud Pública/ Pan American Journal of Public Health , v.12, n.2, p.101-110, 2002

Connecting: the use of information and communication technologies by older adults in a retirement community

This is a long-term study of the use of information and communication technologies by 30 older adults (ages 70–97) living in a large retirement community. The study spanned the years of 1996 to 2008, during which time the research participants grappled with the challenges of computer use while aging 12 years. The researcher, herself a ‘mature learner,’ used a qualitative research design which included observations and open-ended interviews. Using a strategy of “intermittent immersion,” she spent an average of two weeks per visit on site and participated in the lives of the research population in numerous ways, including service as their computer tutor. With e-mail and telephone contact, she was able to continue her interactions with participants throughout the 12-year period. A long-term perspective afforded the view of the evolution, devolution or cessation of the technology use by these older adults, and this process is chronicled in detail through five individual “profiles.” Three research questions dominated the inquiry: What function do computers serve in the lives of older adults? Does computer use foster or interfere with social ties? Is social support necessary for success in the face of challenging learning tasks? In answer to the first question, it became clear that computers were valued as a symbol of competence and intelligence. Some individuals brought their computers with them when transferred to the single-room residences of assisted living or nursing care facilities. Even when use had ceased, their computers were displayed to signal that their owners were or had once been keeping up to date. In answer to the second question, computer owners socialized around computing use (with in-person family members or friends) more than, or as much as, they socialized through their computers in the digital realm of the Internet. And in answer to the third question, while the existence of social support did facilitate computer exploration, more important was the social support network generated and developed among fellow computer users.

Whistleblowing process in Finnish health care

Wrongdoing in health care is harmful action that jeopardizes patient safety and can be targeted at the patient or employees. Wrongdoing can vary from illegal, unethical or unprofessional action to inappropriate behavior in the workplace. Whistleblowing can be considered as a process where wrongdoing is suspected or oberved in health care by health care professionals and disclosed to the party that can influence the wrongful action. Whistleblowing causes severe harm to the whistleblower and to the object of whistleblowing complaint, to their personnel life and working community. The aim of this study was to analyze whistleblowing process in Finnish health care. The overall goal is to raise concern about wrongdoing and whistleblowing in Finnish health care. In this cross-sectional descriptive study the data were collected (n = 397) with probability sampling from health care professionals and members of The Union of Health and Social Care Professionals in Finland Tehy. The data were collected with questionnaire: “Whistleblowing -väärinkäytösten paljastaminen terveydenhuollossa” developed for this study and by using Webropol questionnaire -software during 26.6.-17.7.2015. The data were analyzed statistically. According to the results of this study health care professionals had suspected (67 %) and observed (66 %) wrongdoing in health care, more often than once a month (30%). Mostly were suspected (37 %) and observed (36%) inadequacy of the personnel and least violence toward the patient (3 %). Wrongdoing was whistle blown (suspected 29 %, observed 40 %) primarily inside the organization to the closest supervisor (76 %), face-to-face (88 %). Mostly the whistle was blown on nurses’ wrongdoing (58 %). Whistleblowing act didn’t end the wrongdoing (52 %) and whistleblowing had negative consequences to the whistleblower such as discrimination by the manager (35 %). Respondents with work experience less than ten years (62 %), working in temporary position (75 %) or in management position (88 %) were, more unwilling to blow the whistle. Whistleblowing should be conducted internally, to the closest manager in writing and anonymously. Wrongdoing should be dealt between the parties involved, and written warning should ensue from wrongdoing. According to the results of this study whistleblowing on wrongdoing in health care causes negative consequences to the whistleblower. In future, attention in health care should be paid to preventing wrongdoing and enhancing whistleblowing in order to decrease wrongdoing and lessen the consequences that whistleblowers face after blowing the whistle.

Modelling the development of an online learning resource by health care professionals

The aim of this study was to model the process of development for an Online Learning Resource (OLR) by Health Care Professionals (HCPs) to meet lymphoedema-related educational needs, within an asset-based management context. Previous research has shown that HCPs have unmet educational needs in relation to lymphoedema but details on their specific nature or context were lacking. Against this background, the study was conducted in two distinct but complementary phases. In Phase 1, a national survey was conducted of HCPs predominantly in community, oncology and palliative care services, followed by focus group discussions with a sample of respondents. In Phase 2, lymphoedema specialists (LSs) used an action research approach to design and implement an OLR to meet the needs identified in Phase 1. Study findings were analysed using descriptive statistics (Phase 1), and framework, thematic and dialectic analysis to explore their potential to inform future service development and education theory. Unmet educational need was found to be specific to health care setting and professional group. These resulted in HCPs feeling poorly-equipped to diagnose and manage lymphoedema. Of concern, when identified, lymphoedema was sometimes buried for fear of overwhelming stretched services. An OLR was identified as a means of addressing the unmet educational needs. This was successfully developed and implemented with minimal additional resources. The process model created has the potential to inform contemporary leadership theory in asset-based management contexts. This doctoral research makes a timely contribution to leadership theory since the resource constraints underpinning much of the contribution has salience to current public services. The process model created has the potential to inform contemporary leadership theory in asset-based management contexts. Further study of a leadership style which incorporates cognisance of Cognitive Load Theory and Self-Determination Theory is suggested. In addition, the detailed reporting of process and how this facilitated learning for participants contributes to workplace education theory

FAMILY CHARACTERISTICS, STATE PROGRAM EFFECTIVENESS, AND REPORT OF INADEQUATE CARE AMONG FAMILIES OF YOUNG CHILDREN WITH HEARING LOSS

Approximately 1.6 per 1,000 newborns in the U.S. are born with hearing loss. Congenital hearing loss poses a risk to their speech, language, cognitive, and social-emotional development. Early detection and intervention can improve outcomes. Every state has an Early Hearing Detection and Intervention program (EHDI) to promote and track screening, audiological assessments and linkage to early intervention. However, a large percentage of children are “lost to system (LTS),” meaning that they did not receive recommended care or that it was not reported. This study used data from the 2009-2010 National Survey of Children with Special Health Care Needs and data from the 2011 EHDI Hearing Screening and Follow-Up Survey to examine how 1) family characteristics; 2) EHDI program effectiveness, as determined by LTS percentages; and 3) the family conditions of education and poverty are related to parental report of inadequate care. The sample comprised 684 children between the ages of 0 and 5 years with hearing loss. The results indicated that living in states with less effective EHDI programs was associated with an increased likelihood of not receiving early intervention services (EIS) and of reporting poor family-centered communication. Sibling classification was associated with both receipt of EIS and report of unmet need. Single mothers were less likely to report increased difficulties accessing care. Poor and less educated families, assessed separately, who lived in states with less effective EHDI programs, were more likely to report non-receipt of EIS and less likely to report unmet need as compared to similar families living in states with more effective programs. Poor families living in states with less effective programs were more likely to report less coordinated care than were poor families living in states with more effective programs. This study supports the conclusion that both family characteristics and the effectiveness of state programs affect quality of care outcomes. It appears that less effective state programs affect disadvantaged families’ service receipt report more than that of advantaged families. These findings are important because they may provide insights into the development of targeted efforts to improve the system of care for children with hearing loss.

Exploring Health in Military Families: Does Continuity of Care Influence Patient Satisfaction?

To ensure mission-readiness for military members, support for their families is essential. Military family health and health care satisfaction has been a neglected area of study in this population. Satisfaction can be defined in terms of patient-, provider-, and practice-level factors and is influenced by continuity of care, which is often poor in transient military populations. Using a modified patient satisfaction survey, this study found that both the number of moves and assigned providers were significantly associated with continuity of care in military spouses. Further, continuity of care was a significant predictor of satisfaction with military health care.

Diversity in intermediate care

This paper discusses the evolution of intermediate care and presents some interim observations from a survey of providers in England being conducted as part of a national evaluation of intermediate care. Telephone interviews covering various issues concerning the level of provision and style of delivery of intermediate care have been conducted with 70 services to date. Data from these are used to discuss the progress, range and nature of intermediate care in relation to clinician viewpoints and academic and official literature on the subject. Intermediate care ‘on the ground’ is a multiplicitous entity, with provision apparently evolving in accordance with the particularities of local need. Whilst protocols for medical involvement in intermediate care generally appear to be well established, there are some tensions concerning integration of services in a locality, care management processes and questions of flexibility and inclusiveness in relation to eligibility criteria. The definitive version is available at www.blackwell-synergy.com