Using the opinions of coronary heart disease patients in designing a health education booklet for use in general practice consultations.

Objective This study explored how coronary heart disease (CHD) patients’ views would inform the design of an information booklet aimed at providing patients and practitioners with a resource to help influence positively patients’ health behaviour outcomes. Methods Opinions of patients (N=23) with CHD about their information needs, particularly lifestyle advice, were explored using a qualitative approach in four general practices. This information was used in designing a booklet for a pilot study intervention aimed at promoting healthy lifestyle behaviours and medication adherence among people with CHD. Subsequent focus groups explored patients’ (N=17) opinions about the booklet’s ‘fitness for purpose’; semi-structured interviews with practitioners (N=10) examined their views on the booklet’s usefulness. Results In initial focus groups patients identified gaps in their information provision regarding coping with stress, available local community support and medication purpose. A booklet, prepared on the basis of previous literature, was modified to address these gaps. Pilot study patients were satisfied with the re-designed booklet and practitioners reported that its use in consultations enabled change implementation and facilitated patients’ understanding of connections between lifestyle and health outcomes. Conclusion Acknowledging the opinions of CHD patients in producing health information booklets which emphasised a patient centred approach supported practitioner-patient partnerships for choosing healthy lifestyle choices.

A Family Booklet About Comfort Care in Advanced Dementia:Three-Country Evaluation

Objectives: To evaluate a booklet on comfort care in dementia from the perspective of family with relevant experience, and assess nursing home resident and family factors associated with evaluations. Design: Retrospective study. Setting: Long term care facilities in French-speaking Canada, and the Netherlands and Italy.
Participants: Bereaved family (n = 138).
Measurements: An 8-item scale assessed the booklet's acceptability. Usefulness was rated on a 0 to 10 scale, and perceived usefulness referred to usefulness if family had had the booklet during the resident's stay. Families indicated preferred ways of obtaining, and the most appropriate time to get the booklet.
Results: Almost all families (94%) perceived the booklet as useful. Canadian and Dutch families evaluated the booklet's contents and format favorably, whereas Italian families' evaluations were less favorable. Almost all families endorsed roles for physicians or nurses and about half additionally accepted availability through own initiative, in print or through the Internet. Preference of timing was highly variable. Better acceptability, usefulness, and availability through own initiative were independently associated with non-Italian nationality, presence of more physical signs discussed in the booklet, feeling ill-prepared, and higher satisfaction with care. A preference of receiving the booklet early was more likely in Italian families, those without university education, and those involved with older residents.
Conclusion: The booklet is suitable to inform Dutch and Canadian families on comfort care in dementia, but implementation in Italy requires further consideration. The booklet may be integrated in advance care planning in long term care, and made available outside long term care settings to serve families who wish to be informed early. © 2012 American Medical Directors Association, Inc.
Keywords: Decision aid; decision making; advance care planning; palliative care; nursing homes; dementia.

Physicians' and Nurses' Perceived Usefulness and Acceptability of a Family Information Booklet about Comfort Care in Advanced Dementia

Background: Families of patients with advanced dementia need to be informed about the course of the dementia and comfort care. Conditional for health care providers educating families is their knowledge and comfort in family education. Methods: Perceived usefulness and acceptability of a Canadian family booklet explaining possible complications and comfort care in dementia was assessed by physicians and nurses caring for dementia patients in 14 nursing homes in Lombardy, Italy and 21 in the Netherlands. The practitioners received a questionnaire and translated versions adapted to local practice where needed. In 10 of 21 Dutch homes, physicians evaluated only the original Canadian version in English. A 15-item scale assessed the booklet's acceptability, for example, to inform families, or for educational purposes. Perceived usefulness referred to proportion of families of dementia patients for whom the booklet would be useful. A total of 168 evaluations were available for multivariable regression analyses. Results: The practitioners anticipated that the booklet would be useful for most families. Evaluation of the Dutch translation of the booklet was similar to the English version. Country (Netherlands) and profession (nurses) were independently associated with better acceptability. Usefulness was perceived as better by Italian respondents and nurses, but only in analyses unadjusted for the higher educational needs of these respondents. Conclusion: Overall, the concept of written information on comfort care was appreciated by practitioners of European countries differing in attitudes toward end-of-life care. A booklet may help practitioners, and in particular nurses, in providing comfort care for dementia patients and their families. © Copyright 2011, Mary Ann Liebert, Inc. 2011.

Educating families about end-of-life care in advanced dementia:Acceptability of a Canadian family booklet to nurses from Canada, France, and Japan

Background: The families of people with late-stage dementia need to be informed about the course of the dementia and the comfort/ palliative care option. A booklet was written for that purpose and can be provided to family members by physicians and nurses. Methods: The acceptability of the booklet for nurses was tested in Canada (French and English version), France (French Canadian version) and Japan (translated and adapted version). Results: Overall, 188 nurses completed a survey questionnaire. The booklet was accepted best in Canada and less so in France and Japan. Despite regional variation, the majority of the nurses perceived the booklet as useful for families. The French and Japanese nurses also reported a greater need for palliative care education in advanced dementia. Conclusion: The booklet may help nurses educate families about end-of-life issues in dementia palliative care, but local adaptation of the booklet content and physician engagement are necessary.

Developing an information booklet to meet the needs of intensive care patients and relatives

Changes in the economic climate and the delivery of health care require that pre-operative information programmes are effective and efficiently implemented. In order to be effective the pre-operative programme must meet the information needs of intensive care unit (ICU) patients and their relatives. Efficiency can be achieved through a structured pre-operative programme which provides a framework for teaching. The need to develop an ICU information booklet in a large teaching hospital in Northern Ireland has become essential to provide relevant information and improve the quality of service for patients and relatives, as set out in the White Paper, ‘Working for Patients’, (DoH, 1989). The first step in establishing a patient education programme was to ascertain patients' and relatives' informational needs. A ‘needs assessment’ identified the pre-operative information needs of ICU patients and their relatives (McGaughey, 1994) and the findings were used to plan and publish an information booklet. The ICU booklet provides a structure for pre-operative visits to ensure that patients and relatives information needs are met.

Adjustment to inflammatory bowel disease: The relative influence of illness perceptions and coping

Background: The Common Sense Model (CSM) of illness representations was used in the current study to examine the relative contribution of illness perceptions and coping strategies in explaining adjustment to inflammatory bowel disease (IBD). Methods: Participants were 80 adults consecutively attending an outpatients' clinic with a diagnosis of either Crohn's disease or ulcerative colitis. Respondents completed and returned a questionnaire booklet that assessed illness perceptions, coping, and adjustment. Adjustment was measured from the perspectives of psychological distress, quality of life, and functional independence. Results: Illness perceptions (particularly perception of consequences of IBD) were uniformly the most consistent variables explaining adjustment to IBD. Coping did not significantly add to predicting adjustment once illness perceptions were controlled for and therefore did not mediate the relationship between illness perceptions and adjustment, as proposed in the CSM. Conclusions: The results suggest the importance of addressing illness perceptions in developing appropriate psychological interventions for IBD.

Illness perceptions among carer - survivor dyads are related to psychological distress among Oesophageal cancer survivors

Objective

To examine the extent to which the illness perceptions of Oesophageal cancer survivors and the illness perceptions of their carers explain the survivors' levels of psychological distress (in terms of anxiety and depression symptoms) relative to demographic and biomedical variables and patients' coping strategies.

Method

Everyone registered with the Oesophageal Patients' Association in the UK was mailed a questionnaire booklet containing questions about medical and demographic variables, the Illness Perception Questionnaire-Revised, the Cancer Coping Questionnaire, and the Hospital Anxiety and Depression Scale. Patients were asked to pass a modified version of the Illness Perception Questionnaire-Revised to someone they identified as a carer. Complete responses were received from 317 dyads.

Results

Regression models indicated that the variables measured could explain 56% of the variance in anxiety and 54% of the variance in depression. Patients' illness perceptions explained the majority of this variance. Positive focus coping strategies were also found to be important in explaining psychological well-being. Some of the carers' illness perceptions made a significant contribution to the explanation of the patients' levels of psychological distress, and in some instances, carer perceptions were found to moderate the relationship between patients' perceptions and psychological distress.

Conclusion

The findings suggest that cognition-based interventions could potentially be most effective in minimizing emotional distress among survivors of Oesophageal cancer. This study also shows that these interventions could usefully be delivered at the level of the patient–carer dyad.

Psychological distress among family carers of oesophageal cancer survivors the role of illness cognitions and coping

Objective: The research aimed to determine the extent to which illness cognitions and coping explain psychological distress (fear of cancer recurrence, anxiety and depression symptoms) among family carers of survivors of oesophageal cancer.


Methods: Carers of patients registered with the Oesophageal Patients' Association in the UK were mailed a questionnaire booklet containing questions about medical and demographic variables, the Illness Perception Questionnaire-Revised, the Cancer Coping Questionnaire, the Concerns about Recurrence Scale and the Hospital Anxiety and Depression Scale.


Results: Complete responses were received from 382 family carers (75% male; mean (SD) age=62 (10.91) years). Regression models indicated that the variables measured could explain between 35 and 49% of the variance in psychological distress among carers. Illness cognitions (particularly perceptions of the cause of, consequences of and personal control over oesophageal cancer and the carer's understanding of the condition) explained the majority of this variance. Positive focus coping strategies were also found to be important in explaining psychological distress.


Conclusion: The results of this study are consistent with previous research demonstrating that illness cognitions are significant correlates of adaptive outcomes, thereby suggesting that cognition-based interventions could potentially be effective in minimizing emotional distress among family carers of oesophageal cancer survivors.