Providing psychological support for adults living with cancer. End of Life Care

http://endoflifejournal.stchristophers.org.uk/article/providing-psychological-support-for-adults-living-with-cancer

Chernobyl: Living with Risk and Uncertainty

The nuclear accident in Chernobyl in 1986 is a dramatic example of the type of incidents that are characteristic of a risk society. The consequences of the incident are indeterminate, the causes complex and future developments unpredictable. Nothing can compensate for its effects and it affects a broad population indiscriminately. This paper examines the lived experience of those who experienced biographical disruption as residents of the region on the basis of qualitative case studies carried out in 2003 in the Chernobyl regions of Russia, Ukraine and Belarus. Our analysis indicates that informants tend to view their future as highly uncertain and unpredictable; they experience uncertainty about whether they are already contaminated, and they have to take hazardous decisions about where to go and what to eat. Fear, rumours and experts compete in supplying information to residents about the actual and potential consequences of the disaster, but there is little trust in, and only limited awareness of, the information that is provided. Most informants continue with their lives and do what they must or even what they like, even where the risks are known. They often describe their behaviour as being due to economic circumstances; where there is extreme poverty, even hazardous food sources are better than none. Unlike previous studies, we identify a pronounced tendency among informants not to separate the problems associated with the disaster from the hardships that have resulted from the break-up of the USSR, with both events creating a deep-seated sense of resignation and fatalism. Although most informants hold their governments to blame for lack of information, support and preventive measures, there is little or no collective action to have these put in place. This contrasts with previous research which has suggested that populations affected by disasters attribute crucial significance to that incident and, as a consequence, become increasingly politicized with regard to related policy agendas.

Working across boundaries to improve health outcomes: a case study of a housing support and outreach service for homeless people living with HIV

This paper reports the findings of an evaluation of the ‘Housing Support, Outreach and Referral’ service developed to support people living with HIV who were homeless or at risk of homelessness. The service was set up as part of the Supporting People Health Pilot programme established to demonstrate the policy links between housing support services and health and social care services by encouraging the development of integrated services. The paper considers the role of housing support in improving people's health, and considers the challenges of working across housing, health and social care boundaries. The evaluation of the health pilot employed two main sources of data collection: quarterly project evaluation reports, which collected process data as well as reporting progress against aims and objectives, and semi-structured interviews with professionals from all key stakeholder groups and agencies, and with people who used services. Over the course of 15 months, 56 referrals were received of which 27 were accepted. Fifteen people received tenancy support of whom 12 were helped to access temporary accommodation. At the end of the 15 months, all of the tenancies had been maintained. In addition, 18 people registered with a general practitioner and 13 registered with an HIV clinic. Interviews with professionals emphasised the importance of the local joint working context, the involvement of the voluntary sector and the role of the support workers as factors that accounted for these outcomes. Those using services placed most emphasis on the flexibility of the support worker role. Importantly, interviews with professionals and those using services suggest that the role of support worker incorporates two dimensions – those of networker/navigator as well as advocate – and that both dimensions are important in determining the effectiveness of the service.

Active carers: living with chronic obstructive pulmonary disease

It has long been recognised that the majority of care provided in chronic illness comes not from health and social care professionals, but from family and friends. One such illness is chronic obstructive pulmonary disease (COPD), a leading cause of morbidity and mortality in the developed world.To explore the specific care needs of informal caregivers of patients with advanced COPD, interviews were conducted with seven active family caregivers. Interviews were taped, transcribed and content analysed to obtain the caregivers' needs. Results confirm that family caregivers provide direct care with little support and assistance. Participants reported restricted activities of daily living and some emotional distress. There were knowledge deficiencies among caregivers relating to the COPD illness trajectory and little awareness of the potential of palliative care. Family caregivers need social and professional support while caring for a patient at home. This would help to ensure that their physical and emotional health does not suffer. There is a need to devise interventions to ensure family caregivers are supported.

I can't get a breath: experiences of living with advanced chronic obstructive pulmonary disease

This study aims to explore the potential for palliative care among people living with advanced chronic obstructive pulmonary disease (COPD). Individual semi-structured interviews (n=13) were conducted with people who had a diagnosis of advanced COPD and were on optimal tolerated drug therapy, with their breathing volume (forced expiratory volume at less than 30%) or were on long-term oxygen therapy or non-invasion ventilation. Participants raised concerns about the uncertain trajectory of the illness and reported unmet palliative care needs with poor access to palliative care services. For most people, palliative care was associated with end of life; therefore, they were unwilling to discuss the issue. There was a wide acceptance that, medically, nothing more could be done. Findings also suggest that patients had unmet palliative care needs, requiring information and support. The research suggests the need for palliative care to be extended to all (regardless of diagnosis), with packages of care developed to target specific needs.

Surviving but stigmatised:Making sense of living with Burkholderia cepacia

Infection control policies recommend segregation of people with Cystic Fibrosis (CF) according to bacterial status. This involves isolating those people with cepacia from all other CF patients in order to prevent additional infection. These policies are reliant on the understanding and adherence of those colonised with cepacia. Service user reports suggest that emotions like anxiety and anger are aroused when those with cepacia are faced with cross infection measures (UK CF Trust, 2009). No studies to date investigate this anecdotal emotional reaction. This research was conducted to ask what it is like to live with cepacia, using in depth interviews. A phenomenological approach was used. Three themes that appeared to characterise the experience of living with cepacia were identified: (1) Lost Identity: cepacia can challenge one’s self identity, and along with cross infection measures lead to feeling objectified and even alienated from the CF group identity. (2) Status: Condemned: being colonised with cepacia brings with it knowledge of a certain type of restricted future, and an imagined death. There is loss of normality and hope. (3) I Am Cepacia: making decisions about preventing cross infection is influenced by medical knowledge as well as human emotions and social information; therefore adherence to these measures is fluid and contextual. These themes have real world clinical implications for all CF services, where preventing the spread of cepacia is paramount. Responsibility for cross infection is a burden and requires knowledge and understanding from both those living with and without cepacia. We need to see beyond the bacteria to the person.

Older Women Living with Domestic Violence: Coping Resources and Mental Health and Wellbeing

Background: Domestic violence represents a serious public health issue for women and their children worldwide. International evidence suggests that women aged over 50 who are victims of domestic violence are suffering in silence because the problem is ignored by professionals and policy makers. More UK research is needed to identify the extent of the problem, and services to meet the needs of older women.

Study aims: To bridge this gap by seeking to gain a deeper, systematic understanding of how ‘older women’ cope with domestic violence and how it effects their wellbeing, using a theoretical framework of ‘salutogenesis’ to consider coping resources used in lifelong abuse.

Methods: The study recruited a convenience sample of eighteen older women who are currently, or had been in an abusive relationship. A semi-structured interview schedule was used to discuss the personal nature, of domestic violence in their lives, and the pattern of abuse over time and its effects on their wellbeing, ways of coping and sources of support, barriers to reporting and accessing support, and experiences in seeking help.

Results: Living in a domestically violent context has extremely negative effects on older women’s wellbeing. Living with a perpetrator of long-term violence is predisposing these women to extremely negative health outcomes such as Post Traumatic Stress Disorder, anxiety and depression. Three-quarters of the women defined themselves as in poor mental health and were using pathogenic coping mechanisms, such as excessive and long-term use of alcohol, prescription and non-prescription drugs and cigarettes. This negative coping increased the likelihood of these women experiencing addiction to drugs and alcohol dependence and endangering their health and wellbeing in the longer term. Conclusions Public health interventions can work well from a ‘salutogenic’ perspective by finding ways to promote healthy behaviours that increase older women’s sense of wellbeing and coping. The application of this theoretical framework offers the potential for new knowledge to contribute to the discourse about wellbeing in older women dealing with domestic violence.

At Home in Care: Children living with birth parents on a Care Order

This study explored the processes, background information, and perceived reasons why children and young people returned home while remaining in care, in the five HSC Trusts in Northern Ireland. The research also focused on understanding the functions the Care Order had for social services, the birth parents, and young people involved.
It was found that on 31st March 2009, there were 193 children/young people living with their birth parents on a Care Order in Northern Ireland. This is eight per cent of the total population of Looked After children, and is lower than had been anticipated from governmental statistics. In total, the case files of 47 of these young people (24% of them) were reviewed, and interviews were conducted with ten of them and their birth parent/s.
The analysis revealed that the majority of them had in common a parental background history of alcohol abuse and domestic violence, and most return breakdowns in the study were related to continuing parental alcohol and/or drugs misuse. While some children had a planned return home after parents had engaged in supports and completed assessments, many young people had returns that were not planned, as they initiated the move themselves, or previous foster placements had broken down and there were no alternative placements identified for them. Many of these young people essentially ‘voted with their feet’, and social services were required to ensure that they remained safe in often less than optimal circumstances.
After returning home, for many, Care Orders remained for initially unintended lengthy periods because of the risks posed by parents’ intermittent alcohol abuse and their lifestyle, contact issues, and parents’ desire to ensure that their children were able to access the supports that they needed. Thus, Care Orders at home tended to serve two main functions: to either monitor and/or support the placement.

Living with adversity: A qualitative study of families with multiple and complex needs

No abstract available