When doctors and parents disagree on how to treat a sick child the emotional and financial costs can be huge

First paragraph: When a child is sick and parents and doctors disagree about what to do next, who is best placed to make that decision? This is a tricky but not uncommon question – with a number of recent high-profile legal cases highlighting the limits of parents’ rights to decide what treatments should be offered.https://theconversation.com/when-doctors-and-parents-disagree-on-how-to-treat-a-sick-child-the-emotional-and-financial-costs-can-be-huge-12467

Reducing healthcare conflict: outcomes from using the conflict management framework

Objective To test a new conflict management framework (CMF) to help staff identify and de-escalate conflict between staff and patients/families. Design Before/after study that reports staff quality of life, frequency/severity of conflicts and qualitative interviews on using the framework. Data were collected from May 2017 to September 2017. Setting A paediatric oncology department day-patient and 23-bed inpatient ward. Intervention A two-stage CMF used by staff during daily handovers to identify and then manage conflict cases with families. Results Staff found the CMFto be helpful in identifying and de-escalating conflicts. The number of conflicts reported decreased by 64% from baseline to follow-up. Communication regarding conflict identification improved. Reports of staff burn-out decreased between the two time-points (n=55 at baseline, n=31 at follow-up; p=0.001). Scores on compassion and secondary traumatic stress did not change. Conclusions The CMF substantially reduces the incidence of conflicts and is an acceptable approach for staff. Continued use of the framework would require it to be fully integrated into the working of the ward, which would need to include senior medical buy-in. Further refinements to the framework have been made and will be tested in four UK sites in 2018/2019

Prostate cancer: Exploring the reasons for timing of presentation and diagnosis. Summary Report

There has been little research looking specifically at the reasons for the timing of when men are diagnosed with prostate cancer. This study investigated the profile of men diagnosed in Greater Glasgow over a two-year period (2008-9). This report explores the experiences of men before they were diagnosed and includes what triggered them or prevented them from presenting their symptoms to a healthcare professional. The study is based on clinical information of the patient population, a postal survey and interview data

When a friend dies the impact can be as traumatic as losing a family member

First paragraph: The death of a friend is a loss that most people face at some point in their lives – often many times. But it is a grief that may not be taken seriously by employers, doctors or others. The so-called hierarchy of grief, a scale used to determine who is considered a more legitimate mourner than others, puts family members at the top. For this reason, the death of a close friend can feel shunted to the periphery and has been described as a disenfranchised grief.https://theconversation.com/when-a-friend-dies-the-impact-can-be-as-traumatic-as-losing-a-family-member-11647

The role and value of family therapy for people living with cancer: a rapid review of recent evidence

Purpose of review: Cancer impacts the whole family and relational system, not just the individual with the diagnosis. The present article identifies and reviews publications in the field of family therapy and cancer since 2019, to describe the theoretical models and techniques applied, and the outcomes achieved. Recent findings: A search of databases and grey literature led to the identification of five articles from four studies. Four papers described primary research and one summarized a case example. Papers were published by teams in the USA, Sweden and Iceland. Each article described the benefits of adopting a family therapy approach on outcomes such as family communication, bereavement and decreased carer burden. Four papers described specialist family therapists delivering the interventions, and one used oncology nurses drawing on the theories and techniques of family therapy. Summary: The rarity of family therapy publications in the past year reflects the individual-level approach to cancer which permeates both medicine and talking therapies. The utility of family therapy could be further surfaced through more large-scale studies which thoroughly describe the unique theoretical basis and techniques, alongside outcomes for multiple people within the family system

Older people with learning disabilities affected by cancer: Involvement and engagement work to inform a research agenda: Final Report

Summary: The Cancer Care Research Centre (CCRC) works with people affected by cancer to find out about their experiences of cancer and what they think about the treatment and care they have had. The CCRC has 16 Advisory Groups of people affected by cancer across Scotland. These groups help the Centre develop research plans by discussing their experiences and views of cancer services. This project worked with adults with learning disabilities affected by cancer. Four people with learning disabilities met with the researchers to talk about their experiences of cancer. Three people had a family member with cancer. One person had breast cancer and talked about her care. By speaking to the researchers, these people advised the researchers on the important issues to research for people with learning disabilities affected by cancer. The project found that new research should focus on: communication in hospitals between professionals and people with learning disabilities; how families cope when someone gets cancer; how to support people with learning disabilities, their families and staff when someone is very ill or dies from cancer; how many people with learning disabilities develop cancer

People with cancer and an intellectual disability: an international issue with local significance

Introduction: The workshop "People with cancer and an intellectual disability: an international issue with local significance" took place in Edinburgh on February 22nd 2008. The workshop was organised by the Centre for the Older Person's Agenda, Queen Margaret University and the Cancer Care Research Centre, University of Stirling. The workshop aims were to engage in a sharing of knowledge and experience and through discussion to drive forward change by creating agendas for policy, practice and research. The objectives were to: 1. present a range of current perspectives on policy, practice and research in cancer care for people with intellectual disabilities; sharing international perspectives; 2. identify and explore key issues; 3. share current practice and research concerns based on practitioner and personal experiences of cancer care; 4. to identify what a community of researcher, policy makers and practitioners would look like; 5. develop practice and research agendas with action plans for taking such agendas forward. The programme for the day revolved around five presentations and two group discussions. See appendix 1 for a copy of the programme, appendix 2 for a list of delegates and appendix 3 for copies of the presentations. This report is organised according to the main themes that emerged from the presentations and discussion sessions. They are linked to the four objectives outlined above and the overall aim of developing an international and comparative understanding of these issues

Attitudes toward assisted-death services, perceived supporting norms, and emotional distress

This paper summarises three studies examining the association between (un)favourable attitudes toward assisted-death services and emotional distress in contexts where the service is proposed, as well as the moderating role of norms supporting assisted-death services. In three studies, the participants (i.e., community members, veterinarians, and health practitioner students) reported their level of distress after exposure to scenarios of assisted-dying that are relevant to their respective contexts. We found that supportive norms (i.e., perception that referent group support the action) could reduce emotional distress from considering assisted-death contexts. In addition, in two studies, supportive norms were also found to strengthen the impact of attitudes, such that unfavourable attitudes toward assisted-death services were associated with emotional distress more strongly when norms supported the practice. We conceptualize assisted-death distress as a possible indicator of practitioner well-being risk, as well as a marker of practitioner and community acceptance of (or resistance to) the behaviour. https://mc.manuscriptcentral.com/omega OMEGA-Journal of Death and DyingOutput Status: Forthcomin

Multiple myeloma in people of working age in Czechia, Germany, and Poland: findings from a qualitative interview study

Purpose The study sought to understand the experiences of working age adults with myeloma and their partner/family members, living in Czechia, Germany, and Poland. Methods Qualitative interviews were conducted with 36 working age adults living with myeloma, and three family members. Data were collected from May to October 2022. Thematic analysis was applied to the data. Results Healthcare and state support within each country are described. The degree of work engagement was informed by patients’ symptom burden, treatment needs, state financial aid, and family/financial obligations. Many did not conceptualise their status as involving ‘return to work’ as they had continued to be engaged with their jobs throughout. For some, remote working enabled them to manage treatments/side-effects and their job, while avoiding infection. In some cases, patients did not tell their employer or colleagues about their illness, for fear of discrimination. Conclusion While experiences varied between countries, common across accounts was a struggle to balance ongoing treatments with employment, at a time when participants were expected to finance their own households and maintain their income and roles. Implications for Cancer Survivors To improve quality of life, clinical discussions around treatment decision-making should take into account patients’ attitudes/approach to work, type of work engaged in, and other activities considered important to them. European Union and national cancer plans should set out optimum standards for employers, to ensure an equitable benchmark for how employees are supported. Such approaches would improve legal protections and better enforcement of employer policies to accommodate patients’ limitations in the workplace