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.

The Mixed Fortunes of Irish Unions: Living with the Paradoxes of Social Partnership

We assess the fortunes of Irish unions since 1980 and, in particular, focus on the period of national social partnership since 1987. We argue that, structurally, unions have been weakened by a sharp decline in union density levels. In addition, labor law reform has not been as permissive as unions desired. However, on the other hand, we highlight that union membership in Ireland has never been higher and unions exert a strong influence over many areas of government policy. In conclusion, we argue that continuing with social partnership is the most viable option for Irish unions, though significant gains in union power are unlikely to happen.

Living with children diagnosed with Autism Spectrum Disorder: Parental and professional views

The number of children diagnosed with an autistic spectrum disorder (ASD) is rising and is now thought to be as high as 1:100. While the debate about best treatment continues, the effects of having a child diagnosed with ASD on family life remain relatively unexplored. This article, by Karola Dillenburger of Queens University Belfast, Mickey Keenan of the University of Ulster, Alvin Doherty from the Health Service Executive Western Region, Tony Byrne of Parents’ Education as Autism Therapists (PEAT) and Stephen Gallagher of the University of Ulster, sets out to adjust that balance. Drawing upon data from a comprehensive study of parental needs, these authors argue that parental and professional views do not always concur; that families make extraordinary sacrifices; that siblings are affected; and that parents are under tremendous stress. Parents argue that educational and social service supports are not efficient and that they are forced to rely largely on support from within the family or from friends. In particular, some important differences between parental and professional perceptions became apparent in relation to interventions based on Applied Behaviour Analysis (ABA). The authors of this article propose that these differences need to be taken seriously by teachers and other professionals as well as by policy-makers.

Clinical pharmacy-led disease and medicine management programme for patients with COPD

center dot The concept of self-management plans for patients with chronic obstructive pulmonary disease (COPD) is derived from their success in asthma management.

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