Search

A longitudinal study of 43 families referred to a Clinical Genetic Service was undertaken to ascertain the needs and expectations of the service, from the client's perspective. Previous studies have mainly focussed on changes in knowledge or reproductive patterns as outcomes for genetic counselling. Clients were interviewed before contact with the genetic service, after the consultation, and six months later. At each interview, psychological questionnaires to assess Need for Cognitive Closure (Webster & Kruglanski, 1994), anxiety (Spielberger et aI, 1970) and the impact of the genetic condition on the family (Horowitz et aI, 1979) were used. Statistical analyses of these tools revealed that the Need for Closure is a stable entity, and that genetic counselling does not significantly influence anxiety in the client. A grounded theory approach was used to analyse the data, and the theory presented includes the client's need for certainty, the client's prior lay knowledge, and assimilation of scientific information into the family knowledge base. Clients had little prior knowledge of genetics, but had constructed lay explanations for the inheritance of the condition in their family. Scientific information was tested against the family history for validity, and where there was apparent conflict, the scientific explanation was sometimes rejected. Results of this study indicate that the majority of families are not seeking information for reproductive decision-making, but as a; means of obtaining certainty, via a diagnosis, a prognosis, or a test result. Clients defined the most important outcomes as alterations in their psychological ability to deal with the situation in their family. In this cohort, certainty was seen as helpful in enabling the client to cope, and failure to obtain certainty influenced the outcome adversely. Implications for clinical practice include the need to address the client's need for certainty, to explore the family's lay explanations as part of the genetic counselling process, and to relate explanations directly to the family experience.

In this thesis I report an investigation into the psychological, emotional and social impact of British military foreign postings on accompanying spouses. I adopted an ethnographic methodology utilising a four phase mixed method approach consisting of one quantitative and three qualitative components. The thesis was based on research data collected in Phase 1 from a systematic review of British and US military research focusing on the experiences of accompanying spouses on overseas postings. Data from Phase 2 focused on the experiences from 34 British military spouses based in one location in southern Europe and were collected via individual interviews or focus groups. In Phase 3 data were collated via an online forum from 13 other British military spouses, who had experienced postings to alternative worldwide locations, rather than the single one identified in Phase 2. The final phase represented the study’s quantitative component, which further examined the findings from the previous qualitative phases through 136 responses to an online survey. The systematic review highlighted that the impact of a foreign posting could be detrimental to the military spouse’s well-being particularly if support resources were inadequate. Thematic analysis of data from Phases 2 and 3 corroborated the importance of support networks on international postings, but also identified the fundamental influence of individual differences and personal meaning-making of the military spouse. Ultimately, in Phase 4 multiple linear regression analysis determined that a person’s level of tough-mindedness, their self-efficacy and available instrumental support were all significant predictors of the perceived level of support provided by the British military. Overseas relocations are not beneficial for all military spouses. To have a greater understanding of this impact, it is necessary to examine and combine principles in the domains of sociology and psychology. The outcome of this then feeds into adjustment theories and contributes to the field of healthcare practice. Nonetheless, the military are in a constructive position to maximise the effectiveness of support resources alongside health professionals to provide the holistic support that military spouses may need. Specifically, regular informal checks from a healthcare professional or a support worker to assess the well-being of the military spouse could help early identification of any coping problems. This together with cross-cultural awareness training and a greater involvement of the military spouse throughout the relocation process could enhance their foreign posting experience.

Informed consent for pharmacogenomic testing in people with a learning disability Background Advances in genomic healthcare will enable medication to be tailored to each individual’s needs, based on subtle genetic variations. This will result in individuals being asked to consent to genetic testing for this purpose. The recent political agenda for social change has emphasised the right of people with learning disabilities to have more autonomy and make their own decisions. There have also been significant changes in the way healthcare practitioners relate to their patients, with a shift away from paternalism towards shared decision-making. Research Aim The aims of the study were (1) to explore the information needs of people with mild to moderate learning disabilities with respect to pharmacogenomic tests and (2) to identify ways of facilitating informed consent. Methods An integrative literature review was conducted to identify research on informed consent to healthcare interventions in people with learning disabilities (Phase 1). Subsequent phases (Phases 2-4) of the study were conducted using an ethnographic approach. Phase 2 involved observation of six participants with learning disabilities undergoing a routine blood test consultation in general practice. This was followed by Phase 3, in which semi-structured interviews with 14 participants with learning disabilities were conducted. In Phase 4, three different methods were used: focus groups with carers (four paid carers, five family carers), an on-line bulletin board for healthcare professionals (five participants) and interviews with six key informants from the field of learning disability. Findings The data showed consent procedures were often inadequate and there was inconsistent knowledge of mental capacity law amongst health professionals. Provision of information to patients prior to a blood test was variable, but interviews with people with learning disabilities revealed the fact that this information may not be wanted by them. People with learning disabilities viewed pharmacogenomic tests as similar to other blood tests and would want access to them. The attitudes of paid carers and family carers differed in terms of decision-making opportunities for people with learning disabilities. Conclusions Healthcare practitioners, carers and people with learning disability need to be familiar with the principles of the Mental Capacity Act to facilitate valid consent in the healthcare context. Healthcare practitioners also need to be made aware of developments in pharmacogenomics if it is to become part of routine health care. Finally, this study demonstrated the value of qualitative research in exploring the knowledge and attitudes of people with learning disability.

The effect of psychosocial information resources on the psychological impact of genetic testing for patients Background: The genetic testing process has been shown to have a profound psychosocial impact on patients and families, yet research suggests that there is a lack of practical and helpful psychosocial information written to support decision-making. Ideally, this should be available for use both before and after genetic testing and should be easily accessed through genetic clinics. The development of pre-written leaflets or on-line resources which draw on the experiences and advice of families who have been through similar experiences, and are readily available through genetic clinics, might be one way of helping families make necessary adjustments. Aim: The aim of this study was to develop information resources for a) people undergoing carrier testing, and b) parents of children with undiagnosed conditions, and to pilot the use of these resources with service users. Methods: A systematic literature review was conducted to identify key themes to inform the content of the resources. To build on these findings, in-depth interviews were conducted with 11 people who had undergone carrier testing and 14 parents of children without a diagnosis. Interview data were analysed using the grounded theory method. A grey literature search of existing patient information was also conducted. These three phases informed the content of information resources. The development process also included input from genetic specialists, patient group representatives and interviewees. Finally, a pilot study was conducted through three genetic centres to assess the feasibility of a study testing the use of the resources. Findings: The participants in this study were striving for empowerment: carriers sought reproductive empowerment; parents developed empowerment strategies in order to advocate for their child. Moreover, a theory named ‘reconstructing the meaning of being a parent’ was constructed to describe the experience of parenting a child for whom no clear care pathway existed. The importance of providing timely information was identified as being a key factor in supporting parents during their search for a diagnosis. A new model was built to summarise the overarching experience of participants in this study. Conclusions: Empowerment was identified as a dynamic and multi-faceted construct. Health professionals and support groups can help facilitate the empowerment process through the provision of timely psychosocial information. This is particularly important in an age when patients are expected to take greater control than ever before over decisions affecting their healthcare.