The need for qualitative methodologies in cancer cachexia research

Background: Cancer cachexia is not well understood or managed in clinical practice (Delmore 2000; Poole and Froggatt 2002). Whilst a dedicated effort has been made towards understanding the biological processes of the syndrome, little attention has been paid to its multidimensional impact. This is despite previous qualitative research, enriching our understanding of the holistic impact of the syndrome which traditional quantitative methods could not have uncovered (Reid 2007).

Aim: The aim of this study is to determine the adequacy of the existing clinical knowledge base of cancer cachexia management.

Methods: A systematic critical review of the literature on cancer cachexia was undertaken.

Results: There is a need to develop protocols for care delivery, which move beyond a purely biological approach to care towards a more holistic approach. This can only be achieved by gaining the perspectives of those who are involved in care delivery to advanced cancer patients with cachexia and their families using qualitative methodologies.

Conclusions: Cancer cachexia is a complex, challenging syndrome, which must be understood from a holistic bio-psychosocial model of care in order to meet the multidimensional needs of this client population. The perspectives of those involved in care delivery is required in order to contribute to a knowledge base which will inform the development of interventions directed at empowering patients and their families to understand cancer cachexia and recognise it as part of the disease process.

Up close and personal: A qualitative study exploring the lived experience of older carers. Mental Health and Learning Disabilities Research. 8 (1). Pp.15-29.

This study explored the experiences of informal carers who were aged 65 years and over. It has been estimated that 15 per cent of those aged 65 or over provide some form of informal care in England. Despite a growing literature on the involvement of older people in research, there is a paucity of literature on the involvement of older carers. In this study, older carers were identified via a General Practice (GP) register in one urban medical practice. Data was collected through a series of focus groups, which were transcribed and analysed using
thematic analysis. Every carer aged 55 or over and registered with the medical practice was invited to take part in the study. Four female carers and one male carer took part in the study (age range 65-83). Themes that emerged during data analysis included, 1) managing things in an emergency, 2) feeling valued because they took part in the research and 3) the day-to-day reality of living with social exclusion. GP registers provide a valuable tool for identifying older
carers who may otherwise be difficult to engage in research. However, persuading GPs to engage with qualitative research may be a challenge.

The SPHERE Study: Secondary prevention of heart disease in general practice: protocol of a randomised controlled trial of tailored practice and patient care plans with parallel qualitative, economic and policy analyses. [ISRCTN24081411]

Background: The aim of the SPHERE study is to design, implement and evaluate tailored practice and personal care plans to improve the process of care and objective clinical outcomes for patients with established coronary heart disease (CHD) in general practice across two different health systems on the island of Ireland.CHD is a common cause of death and a significant cause of morbidity in Ireland. Secondary prevention has been recommended as a key strategy for reducing levels of CHD mortality and general practice has been highlighted as an ideal setting for secondary prevention initiatives. Current indications suggest that there is considerable room for improvement in the provision of secondary prevention for patients with established heart disease on the island of Ireland. The review literature recommends structured programmes with continued support and follow-up of patients; the provision of training, tailored to practice needs of access to evidence of effectiveness of secondary prevention; structured recall programmes that also take account of individual practice needs; and patient-centred consultations accompanied by attention to disease management guidelines.

Methods: SPHERE is a cluster randomised controlled trial, with practice-level randomisation to intervention and control groups, recruiting 960 patients from 48 practices in three study centres (Belfast, Dublin and Galway). Primary outcomes are blood pressure, total cholesterol, physical and mental health status (SF-12) and hospital re-admissions. The intervention takes place over two years and data is collected at baseline, one-year and two-year follow-up. Data is obtained from medical charts, consultations with practitioners, and patient postal questionnaires. The SPHERE intervention involves the implementation of a structured systematic programme of care for patients with CHD attending general practice. It is a multi-faceted intervention that has been developed to respond to barriers and solutions to optimal secondary prevention identified in preliminary qualitative research with practitioners and patients. General practitioners and practice nurses attend training sessions in facilitating behaviour change and medication prescribing guidelines for secondary prevention of CHD. Patients are invited to attend regular four-monthly consultations over two years, during which targets and goals for secondary prevention are set and reviewed. The analysis will be strengthened by economic, policy and qualitative components.

Midwifery research by midwifery researchers: challenges and considerations

This paper will discuss some of the challenges which may be encountered by midwifery researchers when conducting research where the research setting is familiar or study participants are known to the researchers. The paper identifies some of the key challenges which should be considered such as researching in a familiar culture, perception of participants, sample selection, finding space in the setting and interview dynamics. Examples are provided from three previous qualitative research projects conducted by the authors in educational and clinical settings with both pre registration and post registration midwives (pre and post registration). Each of the key issues will be discussed highlighting specific issues relevant to each with further consideration of how these issues may impact on progress of the project, data collected and subsequent findings. Finally, these will be drawn together with recommendations for future research conducted by midwives or where the setting or participants are known to the researchers. Although the paper is focused on midwifery research the issues raised may bear relevance in other areas where the setting or participants are known to researchers.

The Self-conscious Researcher – Post-modern Perspectives of Participatory Research with Young People

Research in young people by young people is a growing trend and considered a democratic approach to exploring their lives. Qualitative research is also seen as a way of redistributing power; with participatory research positioned by many as a democratic paradigm of qualitative inquiry. Although participatory research may grant a view on another world, it is fraught with a range of relationships that require negotiation and which necessitate constant self-reflection. Drawing on experiential accounts of participatory research with young people, this paper will explore the power relationship from the perspective of the adult researcher, the young peer researcher and also that of the researched. It will explore the self-conscious exchange of power; and describe how it is relinquished and reclaimed with increasing degrees of compliance as confidence and security develops. Co-authored by a peer researcher and adult researchers, this paper will illustrate a range of practical examples of participatory research with young people, decode the power struggle and consider the implications. It will argue that although the initial stages of the research process are artificial, self-conscious and undemocratic it concludes that the end may justify the means with the creation of social agency knowledge, experience and reality.

Confined site construction: A qualitative review of issues regarding health and safety on-site

The construction industry is inherently hazardous, with a significant number of accidents and incidents occurring, particularly on confined construction sites. This research identifies, clarifies and tabulates the various managerial health and safety issues encountered on confined construction sites, based on a qualitative approach, to aid in the management of the complex health and safety concerns. The methodology is based on qualitative research incorporating case studies, interviews, causal loop diagrams and mind mapping. The key findings in the managerial issues in the management of health and safety on confined construction sites can be summarised as follows; (1) A lack of space, (2) Increased management of site personnel, (3) Overcrowding of the work place. The implication for the industry is that due to the sustained development of urban centres on a global scale, coupled with the increasing complexity of architectural designs, the majority of on-site project management professionals are faced with the onerous task of completing often intricate designs within a limited spatial environment, under strict health and safety parameters. The value of such research is to aid management professionals successfully identify the various managerial issues highlighted, resulting in the successful management of health and safety on a confined construction site.

Confined Site Construction: A qualitative investigation of critical issues affecting management of Health and Safety

The construction industry is inherently risky, with a significant number of accidents and disasters occurring, particularly on confined construction sites. This research investigates and identifies the various issues affecting successful management of health and safety in confined construction sites. The rationale is that identifying the issues would assist the management of health and safety particularly in inner city centres which are mostly confined sites. Using empiricism epistemology, the methodology was based on qualitative research approach by means of multiple case studies in three different geographical locations of Ireland, UK and USA. Data on each case study were collected through individual interviews and focus group discussion with project participants. The findings suggest that three core issues are the underlying factors affecting management of health and safety on confined construction sites. It include, (i) lack of space, (ii) problem of co-ordination and management of site personnel, and (iii) overcrowding of workplace. The implication of this is that project teams and their organisations should see project processes from a holistic point of view, as a unified single system, where quick intervention in solving a particular issue should be the norm, so as not to adversely affect interrelated sequence of events in project operations. Proactive strategies should be devised to mitigate these issues and may include detail project programming, space management, effective constructability review and efficient co-ordination of personnel, plant and materials among others. The value of this research is to aid management and operation of brownfield sites by identifying issues impacting on health and safety management in project process.

The Self-Conscious Researcher - Post-modern Perspectives of Participatory Research with Young People

Research in young people by young people is a growing trend and considered a democratic approach to exploring their lives. Qualitative research is also seen as a way of redistributing power; with participatory research positioned by many as a democratic paradigm of qualitative inquiry. Although participatory research may grant a view on another world, it is fraught with a range of relationships that require negotiation and which necessitate constant self-reflection. Drawing on experiential accounts of participatory research with young people, this paper will explore the power relationship from the perspective of the adult researcher, the young peer researcher and also that of the researched. It will explore the self-conscious exchange of power; and describe how it is relinquished and reclaimed with increasing degrees of compliance as confidence and security develops. Co-authored by a peer researcher and adult researchers, this paper will illustrate a range of practical examples of participatory research with young people, decode the power struggle and consider the implications. It will argue that although the initial stages of the research process are artificial, self-conscious and undemocratic it concludes that the end may justify the means with the creation of social agency knowledge, experience and reality.

The stress process in palliative cancer care:A qualitative study on informal caregiving and its implication for the delivery of care

Objective: The primary objective of this study was to examine how the comprehensive nature of the Stress Process Model could elucidate on the stressors associated with caring for a palliative cancer patient. Method: A qualitative research strategy involving home-based face-to-face interviews with 12 bereaved family caregivers was used to examine the caregiving experience. Results: The primary stressors associated with caring for the palliative cancer care patients stemmed from care recipient symptoms and personal care needs. The absence of adequate support from the formal health care delivery system was a consistent message from all participants. There was evidence of financial stress primarily associated with the purchase of private home care to supplement formal care. In contrast, the resources that family caregivers relied on to moderate the stressful effects of caregiving included extended family, friends, and neighbors. While the stress of direct caregiving was high, the study revealed that formal care was also a significant source of stress for family caregivers. Conclusion: It was concluded that an appropriately financed, integrated system of care that followed a person-centered philosophy of care would best meet the needs of the patient and his or her family. © The Author(s) 2010.

Research Review: Teenage pregnancy and parenthood: the role of fathers

From the research available in America and Britain it would appear that the men who father children by teenage mothers tend to be a few years older than their teenage partners, although a minority may be significantly older. With regard to the factors associated with fatherhood there are striking similarities to the literature on teenage mothers. Like teenage mothers young fathers tend to be from low socio-economic backgrounds, experience lower educational attainment and fewer employment opportunities than their childless peers. Similarly they tend to experience greater psychological and emotional difficulties and may have a history of delinquent behaviour.

These young fathers are involved in a variety of relationships with teenage mothers, few of which result in marriage and many of which result in the breakdown of cohabitation or the termination of the relationship. This pattern of increasing relationship breakdown over time is related to decreasing paternal contact with children in both America and Britain. Often conflictual relationships with teenage mothers or maternal grandparents and a lack of financial resources are cited by young fathers as barriers to their continued involvement and contact with their children. However, the mothers are much more likely to cite paternal disinterest as the reason for a lack of paternal involvement and there is some indication that mothers and fathers have different views on the level of practical involvement expected from fathers. While most of quantitative data on the subject provides a rather negative picture of paternal involvement, qualitative research highlights how many young fathers genuinely want to be involved with their children and would have more contact and input if they could.

While much less is known about the support provided to young fathers in comparison with their female counterparts, there is some suggestion that the support and role expectations provided by the paternal grandmother may influence how involved young fathers are. There is also some indication that a sizeable minority of young men may receive no such support from their family and may also be treated with hostility or ignored by the maternal grandparents. Young fathers also report limited or no contact with midwives, health visitors and social workers.

Factors affecting collaboration between general practitioners and community pharmacists:a qualitative study

Although general practitioners (GPs) and community pharmacists (CPs) are encouraged to collaborate, a true collaborative relationship does not exist between them. Our objective was to identify and analyze factors affecting GP-CP collaboration.