Overcoming barriers to recruitment in health research.
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Biomedical Research↗
Biomedical subjects
Jenny Hewison
Publications and source records attributed to Jenny Hewison.
Understandings of Down's syndrome: a Q methodological investigation.
Down's syndrome has been, and continues to be, a central focus of prenatal testing technology. However, there has been surprisingly little examination of how parental understandings of the condition relate to prenatal testing choices. This study, carried out at the University of Leeds, uses Q methodology to identify 'competing equivalent stories' of Down's syndrome and to highlight the shared and distinct themes within these stories. Seventy-six people were selected as being likely to represent a diverse range of views about Down's syndrome, approximately half of whom had some known experience or expertise related either to the condition or to prenatal testing. The participants were asked to Q sort 50 propositions about Down's syndrome that were selected to reflect different views about the condition in terms of its impact on the affected person, on families with an affected child, and on society. Using Principal Components Analysis, five statistically independent factors were extracted that reflected a range of views towards, and experiences of, people with Down's syndrome. Despite a virtual consensus about the rights of existing people with Down's syndrome to healthcare, an education, and inclusion in their community, there were significant differences in how participants believed they personally would adjust to an affected child. Furthermore, whether or not people with Down's syndrome were seen to be within 'a continuum of normality' sheds light on how views about the condition may be linked to views about prenatal testing and termination of pregnancy. The study demonstrates that people hold complex and sometimes seemingly contradictory views about Down's syndrome, and that these are likely to influence their prenatal testing decisions. Antenatal settings currently provide little opportunity for people to discuss and explore their beliefs about disability. It is argued that this may affect the ability of some individuals to make decisions that are informed by their own views and values.
Decision Making↗
Attitudes towards prenatal diagnosis and termination of pregnancy for thalassaemia in pregnant Pakistani women in the North of England.
OBJECTIVES: Most births of children affected with beta-thalassaemia major in the United Kingdom are to parents of Pakistani origin. A popular explanation for this is that Pakistanis decline termination of pregnancy on religious grounds. However, various factors influence people's attitudes towards prenatal diagnosis and termination of pregnancy, which have not been investigated in a UK Pakistani sample. This study is aimed at exploring the attitudes of pregnant Pakistani women towards prenatal diagnosis and termination of pregnancy for beta-thalassaemia major in the North of England. METHODS: Forty-three pregnant women tested for thalassaemia carrier status were interviewed following receipt of their test results. Interviews were analysed using the grounded theory approach. RESULTS: Findings showed: (1) women's awareness of and attitudes towards prenatal diagnosis; (2) the relationship between attitudes towards prenatal diagnosis and termination of an affected foetus; (3) the relationship between attitudes towards termination of pregnancy and religious beliefs, perceptions of severity of the condition, influence of significant others, and (4) the impact of gestational age at the time of the offer of termination of pregnancy. CONCLUSIONS: Pakistani women's attitudes towards prenatal diagnosis and termination of pregnancy are influenced by various factors, and therefore their religion should not be taken as a proxy for their attitudes either for or against termination of pregnancy.
Abortion, Eugenic↗
The influence of faith and religion and the role of religious and community leaders in prenatal decisions for sickle cell disorders and thalassaemia major.
OBJECTIVES: Religion is believed to have a significant impact on individuals from minority ethnic groups when making decisions about prenatal genetic screening, prenatal diagnosis and termination of pregnancy. This study aimed to explore the views of individuals from South-Asian and African-Caribbean communities towards termination of pregnancy for sickle cell disorders and thalassaemia major and the influence of (1) faith and religion, (2) perceived severity of the conditions, and (3) religious and community leaders. METHODS: The study explored the views of (1) individuals from four faith communities (Pakistani Muslims, Indian Hindus, Indian Sikhs, African-Caribbean Christians), using eight focus groups, and (2) parents of children with sickle cell disorders and thalassaemia major, using two focus groups and three interviews. RESULTS: Participants' accounts suggest that they generally considered religion and faith as an important factor in the decision-making process, but the perceived severity of the condition would play a more important role. Religious and community leaders were believed to have little role to play in the decision-making process. CONCLUSION: The findings emphasise the importance of recognising diversity within different faith groups and moving away from stereotypical views based on people's ethnicity or religion, and to consider the beliefs and preferences of individuals.
Abortion, Eugenic↗
Antenatal thalassaemia carrier testing: women's perceptions of "information" and "consent".
OBJECTIVES: To explore the attitudes of a sample of pregnant women in the UK towards informed consent for antenatal thalassaemia carrier testing and perceived pre-test information needs for such testing. SETTING: The study was conducted in two cities in the North of England, where participants were recruited via Midwifery and Genetic services. METHOD: In all, 110 Pakistani women tested and not found to be thalassaemia carriers completed a questionnaire, 14 of whom were also interviewed. Thirty-six women identified as carriers or possible carriers completed a questionnaire and were interviewed. The questionnaires assessed whether women were aware that they had been tested for thalassaemia carrier status, whether they were asked for their consent for such testing, and their pre-test information preferences. The interviews explored women's beliefs about "informed consent" in more depth. RESULTS: Women had received little or no pre-test information and said that they would have preferred to be informed that they were being tested, but they did not expect, or express a desire, to be asked for their informed consent. CONCLUSION: While information was important to women, consenting was not. Overall, women discussed "information" and "consent" as two separate issues, thus challenging assumptions around the term informed consent. Women wanted pre-test information because they wanted to know more about the tests that they would be having, not to use it to make decisions about whether to have the tests.
Adolescent↗
Applying decision analysis to facilitate informed decision making about prenatal diagnosis for Down syndrome: a randomised controlled trial.
OBJECTIVE: To evaluate decision analysis as a technique to facilitate women's decision-making about prenatal diagnosis for Down syndrome using measures of effective decision-making. DESIGN: Randomised controlled trial in a UK hospital's prenatal diagnosis clinic. INTERVENTION: Routine versus routine consultation structured by decision analysis. PARTICIPANTS: 117/132 women receiving a screen-positive maternal serum screening result participated (58 routine, 59 decision analysis). METHODS: Consultations were audio tape-recorded, transcribed and coded; questionnaires were completed after the consultation and one month later after receipt of a diagnostic test and/or the 19-week scan result. MAIN MEASURES: Test decision, subjective expected utilities, knowledge, informed decision-making, risk perception, decisional conflict, anxiety, perceived usefulness and directiveness of consultation information. RESULTS: 48/59 in the decision-aided group and 47/58 in the routine group underwent prenatal diagnosis. Informed decision-making was higher, perceived risk more realistic and decisional conflict over time lower in the decision analysis group. Decision analysis had no impact on knowledge or SEU scores, and was no more or no less directive, useful or anxiety provoking than the routine care. Consultations were six minutes longer. CONCLUSIONS: Decision analysis consultations enable women to make more informed prenatal diagnosis decisions. Professionals will need training to use this technique effectively.
Anxiety↗
Psychological aspects of integrated testing.
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Decision Making↗
The impact of head and neck cancer and facial disfigurement on the quality of life of patients and their partners.
BACKGROUND: Psychological and physical stresses from head and neck cancer can be substantial for patients and partners. There is minimal research exploring treatment impact, particularly facial disfigurement after surgery. MATERIALS AND METHODS: Twenty-eight surgery and radiotherapy/brachytherapy/chemoradiation patients and 25 of their partners were compared with 23 radiotherapy/brachytherapy patients and 19 partners. Participants completed the Hospital Anxiety and Depression Scale, Psychosocial Adaptation to Illness Scale, Dyadic Adjustment Scale, and European Organisation for Research and Treatment of Cancer Quality Of Life Scale, including the Head and Neck Cancer module. The Dropkin Disfigurement and Dysfunction scale classified surgical impairment. RESULTS: Partners reported greater distress than patients on some scales. Patients did not have a lower quality of life compared with normal populations and other cancer patients. However, on the EORTC they did and were comparable to a normed sample of head and neck cancer patients. Treatment modality was not predictive of psychological vulnerability. DISCUSSION: Head and neck cancer patients do not necessarily experience poor quality of life. The disease can have a significant impact on partners.
Adaptation, Psychological↗
Understanding why decision aids work: linking process with outcome.
Decision aids help patients make treatment choices. There is little empirical evidence to explain how they work. The results from this randomised controlled trial comparing routine with decision-aided consultations in the prenatal diagnosis for Down's syndrome context are used to describe the strategies employed during decision making, to assess the impact of a decision aid on decision processes, and to investigate decision process and outcome associations. Data were elicited from two content analyses of consultation transcripts and questionnaires assessing knowledge, anxiety, decisional conflict, reasons, and information usefulness. 68/106 women completed measures at consultation and follow-up. Decision-aided women employed more cognitive and emotional strategies during decision making. More negative evaluations during decision making were associated with better outcomes. Decision-aided consultations facilitated the employment of strategies associated with more effective choices. These consultations take longer and elicit greater expressions of negative affect, so may be less rewarding encounters for health professionals.
Adult↗
When a little knowledge is a dangerous thing...: a study of carers' knowledge about dementia, preferred coping style and psychological distress.
OBJECTIVES: The aim of this study was to improve understanding of the relationship between carers' existing knowledge about dementia, their coping style and psychological morbidity. METHOD: Fifty carers and patients attending day services were recruited. Carers were given questionnaires to assess knowledge of dementia, preferred coping style, anxiety, depression and strain. RESULTS: The results indicated that carers who demonstrated more knowledge about the biomedical aspects of dementia were more anxious (p < 0.05). Furthermore, carers who had a preferred coping style of monitoring for threat relevant information were more anxious (p < 0.005). CONCLUSIONS: Understanding more about those factors that are associated with knowledge about dementia will help to identify profiles of carers who are in need of education and in matching individually tailored interventions to carers with specific learning needs.
Adaptation, Psychological↗
Thalassaemia carrier testing in Pakistani adults: behaviour, knowledge and attitudes.
OBJECTIVES: To describe beta-thalassaemia (thalassaemia) carrier testing behaviour (whether tested or intentions of testing) amongst a sample of UK Pakistani adults; their level of knowledge about thalassaemia, and their attitudes toward thalassaemia carrier testing. METHOD: In a cross-sectional design semi-structured interviews, data were obtained from 59 Pakistani adults including 19 parents of children with thalassaemia; 20 of their relatives, and 20 'lay' adults. The outcome measures include: knowledge of thalassaemia and genetic inheritance, carrier testing behaviour, attitudes toward carrier testing and source of information about thalassaemia. RESULTS: Knowledge about carriers and inheritance of thalassaemia was low. Intention to have carrier testing was low in those participants who had not been tested. Participants generally had positive attitudes toward carrier testing. Relatives and lay adults most frequently identified a thalassaemia family member as their source of information about thalassaemia, and only seven parents identified 'a health service source' as their source of information. CONCLUSION: Pakistani adults have insufficient knowledge to be aware of their risk of carrying a gene that may result in the birth of a child with thalassaemia. This finding may explain in part why intention to have carrier testing was low. Although thalassaemia is discussed in families where the disease is present, it is unlikely that information about its inheritance is discussed. Further empirical evidence is needed to improve the quality of information disseminated by both professionals and non-professionals to ensure Pakistani adults are able to make informed decisions about carrier testing, prenatal diagnosis and termination of pregnancy.
Journal Article↗
Social support: gender differences in cancer patients in the United Kingdom.
Social support is an important aspect of psychological functioning during diagnosis and treatment of cancer. Gender has been found to influence support preferences, and previous research suggests that women are more likely to seek and utilize support by comparison to men. This qualitative study explores how patients perceive the support they receive. It also examines patient preferences and satisfaction with information and emotional support provided by staff. Eleven melanoma patients (6 men and 5 women) and 5 breast cancer patients participated in a semistructured interview. Thematic analysis suggests that gender is central to patients' satisfaction and preference for support. Whereas women expected staff to provide information and emotional support, men felt that emotional support from staff was inappropriate and perceived information as supportive in helping them deal with their emotions. Men were also more satisfied with support generally, and women perceived staff to have less time to provide support. Breast cancer patients were more satisfied with access to and the nature of support available to them. Findings suggest that female melanoma patients would benefit from similar services. Meeting the support needs of men appears less clear. If support were available as part of a structured care plan, it is possible that men would also utilize support. Future research is required to gain greater understanding of men's support needs.
Adaptation, Psychological↗