Anne Grinyer

The Narrative Correspondence Method: What a Follow-Up Study Can Tell Us about the Longer Term Effect on Participants in Emotionally Demanding Research:

The author has based this article on qualitative data gathered from the parents of young adults with cancer who, over the previous 4 years, had contributed narrative accounts to a research project on the experience of caring for a young adult son or daughter with the illness. In the follow-up study, she sought to understand the longer term effect of research participation on the parents. Results show that the parents valued their involvement, and many had found the process of writing therapeutic. Their feelings of isolation had been reduced, and overall, they believed they had benefited from contributing. However, there is also an acknowledgment of the emotional demands caused by recalling painful memories for research purposes. Participants experienced the outcomes of the research as significant and interpreted resulting publications as a lasting memorial to their son or daughter.

The importance of place of death in young adults with terminal cancer.

This paper addresses issues relating to place of death in young adults with terminal cancer, through the perspectives of their parents. Evidence suggests that the majority of terminally ill cancer patients would prefer the option of a home death, but little is known about preferences among young adult cancer patients and their families. Through retrospective reflection by bereaved parents of young adults with cancer, this paper aims to understand the importance of place of death to this age group. The empirical data drawn on in this paper consist of accounts written by the parents of 13 young adults who died of cancer. A death at home is reported as a strongly held preference of the majority of young adults, and was supported by their parents. Eight of the 13 young adults were able to die at home, another wished to do so but died in a hospice. However, narratives describing death in places other than home signal that home may not always be the preferred or ‘best’ place to die. Life-stage factors do appear to play a role in determining both preference for, and the actual achievement of, a death at home, but if life stage issues are understood and respected a ‘good’ death can take place in other environments.

A bereavement group for parents whose son or daughter died from cancer: how shared experience can lessen isolation

Abstract This article analyses the content of a session of a bereavement support group for parents whose teenage or young adult son or daughter had died from cancer. It considers how the group works, how people come to believe that they share a similar grief and how they ‘co-write’ a narrative about what they perceive as their shared grief. The analysis suggests strongly that this is a forum where ways of managing grief and loss can be supported through sharing with others who have not only been through a similar experience but one which may not be well understood by others. The bereaved parents felt that others who had not endured the loss of a child would find some of the manifestations of their grief and how they commemorated their child difficult to understand. There was both an explicit and implicit acknowledgment amongst group members that the group provided a safe place where what might be perceived as dysfunctional grief could be recognised and validated as ‘normal’ by other members. The conclusion is that the loss of a child sets bereaved parents apart from other bereaved people, their ‘normality’ has to be reconfigured and membership of such a group, if it is well facilitated, can assist in the grieving process and lessen isolation.

The late effects of mantle field radiotherapy: The information and support needs of women survivors of Hodgkin's disease

PURPOSE To improve understanding of the information and support needs of women at risk from breast cancer after earlier treatment with mantle field radio therapy for Hodgkins disease. METHOD A multiple case study approach presenting the detailed accounts of three participants has been used to represent the issues raised by a wider sub-set of 15 Hodgkins disease survivors. These women were participants in a larger qualitative study of 50 long term survivors of adolescent cancer. They were interviewed in depth either face to face or via the telephone. Data were analysed using methods of data reduction, display and conclusion drawing, three case studies were then purposively selected to illustrate key themes in the wider data set. KEY RESULTS Discovering the risk of late effect breast cancer, particularly via the media, caused shock. Reliable information was difficult to locate and the support needs of the women were not met by medical services. The impact of the new risk was exacerbated by the earlier cancer experience. CONCLUSION Information on the risk of late effects to cancer survivors regarded as trustworthy is not easy to access. When the risk of a treatment related malignancy is identified there must be a reliable way of informing both those at risk and primary health care physicians who then need to take into account the cancer history of the patient and its ongoing effect on their emotional vulnerability.

The study of mental distress and the (re)construction of identities in men and women with experience of long-term mental distress

This article explores the possibility of using a theoretical framework drawn from disability studies in the field of mental health, and the study of identity (re)construction in the recovery process. In this PhD project, 33 narratives were analysed using framework analysis. The analysis showed that disablism was present and powerful in the participants’ lives, and also showed how disablism shaped how the participants thought and felt about themselves. As Carol Thomas argues, when analysing disablism one should also focus on who we are and are prevented from being, as disabled people. The conclusion is that processes of oppression were central when it comes to understanding the (re)construction of identities. A disability studies perspective is thus relevant in the field of mental distress, and can be used to enhance the understanding of the process of identity (re)construction.

When a hospice is not a haven

Abstract There has been little research conducted with terminally ill patients in the UK to date. This case study describes statements made by a palliative care patient during a face-to-face interview while he was being treated in a hospice. His comments illustrate his unhappiness within the hospice environment to an extent that could compromise his holistic management in this setting. We would suggest that the important aspects of patient care include not just the major palliation issues of symptom control and good communications, but also attention to the rituals of daily living of individuals pertaining to the environment. The atmosphere of the hospice, as experienced by patients through their interactions with staff members within the care setting, is seen to be a significant factor for good holistic care. Hospices may need to be more aware of the impact that every member of staff, both clinical and non-clinical, can make at each patient contact. Becoming more alert to the likes and dislikes of each patient as regards the substance of these contacts may allow hospices to avoid institutionalized care practices and instead to individualize the care they offer to a greater number of their patients.

AZT kill or cure? The social essences of scientific authority

This paper examines differing institutional responses to and interpretation of the same scientific and medical data, and looks at the way in which policies, ostensibly based upon these interpretations, are presented to public audiences. The case study concerns the use of AZT as a prophylactic for injured health care workers. Data was collected from personal in depth interviews in two health authorities and telephone interviews with a further 35 health authorities. Observations include the fact that widely different interpretations of scientific data by scientific and medical experts is likely to be presented to the lay audience in terms of scientific certainty, based on an institutional need for certainty and consensus. Contrary to conventional perspectives which would suggest that scientific knowledge was completed in its expert arena, then applied in different settings, this analysis suggests that the scientific knowledge is socially ‘completed’ or ‘closed’ in each of the different situations in which it is interpreted into practice. Ideal models of both the science and of organisational working practice, appear to have been used as the basis of these different constructions.

The ‘lost tribe’ reconsidered: Teenagers and young adults treated for cancer in adult settings in the UK

PURPOSE Although the UK has pioneered the development of specialist adolescent cancer units, the majority of teenagers and young adults (TYAs) continue to be treated at their local hospital or at a cancer centre alongside adults of all ages. This study aimed to elicit young peoples views on this experience of having cancer treatment in an adult setting. METHODS Seventeen participants who had been treated for cancer in an adult hospital between the ages of 15 and 24 were recruited via cancer charities and social media. Telephone interviews were conducted with the participants and the resulting data were analysed using thematic analysis. RESULTS Already feeling out of sync as a TYA with cancer, participants felt out of place in the adult setting. Four factors contributed to this negative experience: a lack of affinity with older patients; the challenging issues in the adult setting; the absence of empathy towards TYAs by staff; and the unsuitability of the environment for adolescents. CONCLUSION Staff working with TYAs with cancer in the adult setting should be aware of the potentially detrimental impact of this environment on this cohort of patients, and consider ways of adapting and modifying their approach.