Method: A postal questionnaire was distributed to carers across Wales on three occasions approximately 18 months apart. It included the SF-12v2 together with fixed-choice and open-ended questions relating to carer demographics, carer assessment, support needs, services received and care recipient’s medical condition. A sub-sample of these carers was invited to take part in face-to-face interviews to allow for more in-depth exploration of their circumstances.

Results: The carers with chronic conditions experienced a decline in their physical health over time whereas the physical health of carers without a chronic condition remained stable. There was also evidence of carers neglecting their own health because of their caring responsibilities. Despite their health problems, over time the carers with chronic conditions received no more support than other carers.

Discussion: This article indicates that there are carers who are themselves suffering from a physical condition or conditions that suggest they are in need of care. Despite these difficulties, these carers are caring for people with quite severe conditions, without any help above that available to other carers.

Methods: 2003 cross-sectional survey and medical record review of a random sample of diabetes patients (n = 4198) in 10 US health plans across the country and their physicians (n = 1217). We characterized physicians’ diabetes care PDM preferences and practices as ‘no patient involvement,’ ‘physician-dominant,’ ‘shared,’ or ‘patient-dominant’ and conducted multivariate analyses examining their effects on the following: (1) three diabetes care processes (annual hemoglobin A1c test; lipid test; and dilated retinal exam); (2) patients’satisfaction with physician communication; and (3) whether patients’ A1c, systolic blood pressure (SBP), and low-density lipoprotein cholesterol (LDL) were in control.

Results: Most physicians preferred ‘shared’ PDM (58%) rather than ‘no patient involvement’ (9%), ‘physiciandominant’ (28%) or ‘patient dominant’ PDM (5%). However, most reported practicing ‘physician-dominant’ PDM (43%) with most of their patients, rather than ‘no patient involvement’ (13%), ‘shared’ (37%) or ‘patient-dominant’ PDM (7%). After adjusting for patient and physician-level characteristics and clustering by health plan, patients of physicians who preferred ‘shared’ PDM were more likely to receive A1c tests [90% vs. 82%, AOR: 2.05, 95% CI: 1.03—3.07] and patients of physicians who preferred ‘patient-dominant’ treatment decision-making were more likely to receive lipid tests [60% vs. 50%, AOR: 1.58, 95% CI: 1.04—2.39] than those of providers who preferred ‘no patient involvement’ in treatment decision-making. There were no differences in patients’ satisfaction with their doctor’s communication or control of A1c, SBP or LDL depending on their physicians’ PDM preferences. Physicians’ self-reported PDM practices were not associated with any of the examined aspects of diabetes care in multivariate analyses.

Conclusions: Patients whose physicians prefer more patient involvement in decision-making are more likely than patients whose physicians prefer more physician-directed styles to receive some recommended risk factor screening tests, an important first step toward improved diabetes outcomes. Involving patients in treatment decision-making alone, however, appears not to be sufficient to improve biomedical outcomes.

Method: Participants were 257 people with motor neurone disease, Huntington’s disease, multiple sclerosis and Parkinson’s.

Results: High levels of cut backs in spending predicted economic pressure for all groups. Economic pressure predicted QOL at 12-month follow-up for all groups except Parkinson’s. For Parkinson’s, predictors of QOL were long duration of illness, illness-related expenses and cut backs in spending. Cut backs in spending, and not income or expenses, were the most important predictor of economic pressure. QOL was predicted by high levels of economic pressure for most of the illness groups.

Discussion: The implications of these findings are discussed. They suggest that cut backs in spending, as opposed to income and expenses, are important factors to focus on assisting people to adjust to the changes to their financial situation that frequently occurs after developing one of these progressive neurological illnesses.

Methods: Using a grounded theory approach, in-depth and follow-up interviews with 27 chronically ill people were conducted and analysed.

Results: From the perspective of people with chronic conditions, the main challenge in everyday medication management was to develop, maintain, and adjust routines. Routines were affected by the chronic illness trajectory and a variety of barriers. Developing and adjusting routines was further complicated by inadequate information and counselling, asymmetric relationships and communication with healthcare professionals, restrictive healthcare conditions, increasing complexities in medication regimens as well as healthcare professionals’ lack of interest in the problems of chronically ill people balancing their chronic condition and medication regimen in everyday life.

Discussion: Chronically ill persons have to deal with numerous difficulties in everyday medication management on their own. They are often overwhelmed by problems related to both their medication regimen and their routines in medication (self-) management. Thus, they require individualized long-term self-management support. Future research should address the dynamic nature of chronic illness trajectories and focus on later phases of chronic conditions.

Methods: Data from the 1999 Spanish Survey on Disabilities, Deficiencies, and State of Health were used. The survey is a cross-sectional study based on a multi-stage stratified sample of all the non-institutionalized Spanish population aged over 14 years (n=59,101, 11% non-responders). Multivariate logistic regression analysis were used.

Results: 10.7% of the Spanish population suffer from an MHP. The highest prevalences were found in women, divorced/separated persons, those with a lower level of education and income, and those suffering from a chronic somatic problem. The number of days of daily activity lost was 2-fold greater among those with an MHP than among those with a chronic somatic problem. Greater use of mental health services was associated with loss of daily activity, having a higher level of education, invalidity or disability. The probability of MHP being referred from primary to mental healthcare is reduced if somatic comorbidity is present.

Conclusion: MHPs have a high prevalence and a significant repercussion on the patient’s life. An inverse relationship was found between certain risk factors for MHPs and the use of services, which suggests inequality. Problems of accessibility are identified.

Methods: A qualitative questionnaire was completed by students at the start of a primary healthcare rotation to determine existing impressions/understandings about chronic conditions. Following the revised teaching programme, a reflective essay about a home-visit to a person with chronic conditions was completed by students at the end of the rotation.

Results: Analysis of the questionnaire at the start of the rotation showed students have some knowledge of the differences between acute and chronic care, have rather negative impressions of what it means to have chronic conditions and know little of overall patient management including the work of an interdisciplinary team. Analysis of the reflective essays completed by students at the end of the rotation showed an increased understanding of chronic conditions, what it means to have a chronic condition and who supports management.

Discussion: A structured chronic conditions teaching programme including patient-as-teacher is an effective way of building knowledge and changing students’ impressions of what it means to have a chronic condition.

Methods: A narrative-based approach, with participants recruited from web sites and newsletters of two Ménière’s Societies (in the UK and in Victoria, Australia) and searches of a monthly newsletter, Spin, for letters related to the use of CAM therapies. A thematic approach to data analysis was undertaken.

Results: Twenty personal, written stories were obtained and 23 letters. Commonly, critical events or changes in the condition provided the catalyst to seek alternative treatment, and sometimes significant others (a GP, CAM practitioner, friends, family). The accounts illustrate a range and variety of journeys that participants travelled in locating satisfactory ways to manage the condition, and the essential ‘personal’ nature of the experience and perceived benefits. No single CAM solution or pathway was evident.

Discussion: The findings suggest the importance of ‘finding your own way’, having a positive outlook and being proactive in regaining control over one’s health, and the value of early recommendations to ‘perhaps try alternative/ CAM treatments’.

Methods: A qualitative approach was used and supplemented by quantitative data to examine self-care among kidney transplant recipients (n = 82), including a semi-structured interview and survey of physical activity.

Results: One-third of patients (33%) reported drinking the recommended 3 L of fluid each day. However, the majority (60%) reported not receiving this or any specific fluid intake recommendation. Twenty percent reported engaging in moderate to regular physical activity while 78% were sedentary. However, many reported that clinicians did not specify the amount of exercise (39%) or did not discuss exercise (15%). Attitudes towards fluid intake, exercise and maintaining a low-salt diet were mostly positive; patients expressed relatively more negative attitudes towards maintaining a low-cholesterol diet. Major barriers to fluid intake were not feeling thirsty, difficulty breaking the habit of limiting fluid intake formed while on dialysis, feeling full and limited access to fluids. Patients devised creative strategies to initiate and maintain appropriate hydration, physical activity and dietary levels, including intentionally drinking when not thirsty, modifying the environment, tracking intake and relying on social supports.

Conclusions: Few kidney recipients practiced optimal self-care for fluid intake or physical activity. Most patients encountered barriers to self-care that should be ameliorated to assist patients with managing their transplant. Understanding barriers and strategies is essential for developing educational interventions.

Methods: Qualitative study of 33 adults with multiple chronic illnesses randomly sampled from an urban primary care clinic. Semi-structured interviews targeted retrospective accounts of illness onset, consequent loss, as well as current accounts of social support and adaptation. All interviews were audio-recorded, professionally transcribed and analysed according to established phenomenological procedures.

Results: Participants' responses revealed illness onset as a virtual cascade of medical, emotional and social hardships, leading to loss and subsequent adaptation through personal resilience and particularly, available social support. Participants also described patterns of adaptation punctuated by the felt need and rewards of providing care to others.

Discussion: The experience of multiple chronic illnesses has a distinct pattern of development and consequence, involving challenges to personal identity and the benefits of social support from and to others. Our results suggest that programmes addressing the needs of persons with multiple chronic conditions might tailor interventions in ways that maximally address their unique challenges.

Methods: Semi-structured interviews were conducted with 12 parents having a child with DMD. A qualitative/ phenomenological approach was utilized to analyse the essential aspects of this experience.

Results: We show that the experience of parental hope emerges from the cognitive appraisal of DMD. The child's illness can be perceived in three ways: as a severe loss, a call to adapt or a way to rediscover the child. Each of these appraisals leads to different ways of hoping. Parents can hope for a cure, the child's well-being or to see their child becoming a whole person. Hope can help parents absorb the initial crisis, sustain their adaptation or prepare for the fatal outcome.

Discussion: Previous research has demonstrated that cognitive appraisal plays a central role in psychosocial adaptation to illness. Our research indicates that perception can also shape the nature of hope and suggests that health professionals should pay particular attention to the nature of parental hope. The fabric of parental hope can give an indication of how parents are coping and adjusting.

Methods: 449 patients with chronic illness (depression, asthma, diabetes and cardiac disease) were approached at outpatient clinics in Turin and asked to complete Italian translations of the BMQ and the Medication Adherence Report Scale.

Results: 427 patients consented to participate in the study. The BMQ demonstrated good internal consistency, with Cronbach's alphas of 0.78 (Necessity subscale) and 0.72 (Concerns subscale). Participants were divided into four attitudinal groups based on their responses to the BMQ: 59% Accepting (high Necessity, low Concerns), 29% ambivalent (high Necessity, high Concerns), 8% Indifferent (low Necessity, low Concerns) and 4% Skeptical (low Necessity, high Concerns). Those in the Accepting group reported the highest adherence to medication and those in the Skeptical group the lowest (p50.01).

Discussion: The BMQ has been successfully translated and validated in Italian. This study provides support for the Necessity—Concerns Framework in explaining medication non-adherence in chronic illness. Interventions that address low perceived need for treatment and concerns about potential adverse effects of treatment are likely to facilitate optimal use of medicines.

Method: A national workshop of representatives of eight medical schools from the CCSM special interest group (SIG) of the Australian and New Zealand Association on Medical Education met in September 2004, to consider curriculum content in CCM and CCSM.

Results: The workshop recommended that the Committee of Deans of Australian Medical Schools and the Commonwealth Department of Health and Ageing consider the identification and possible development of a specific curriculum for CCM and CCSM within the curricula of Australian Medical Schools.

Discussion: Consideration needs to be given to the changing nature of medical practice and that as part of this; doctors of the future will need skills in team participation, continuity of care, self-management support and patient-centered collaborative care planning. Doctors will also need skills to assist patients to better adhere to medical management, lifestyle behaviour change and risk factor reduction, if optimal health outcomes are to be achieved and costs are to be contained.

Methods: Two-hundred sixty-two mothers participated in this survey research; 171 who have either multiple sclerosis (MS) or rheumatoid arthritis (RA), and a comparison group of 91well mothers. Mothers completed questionnaires inquiring about (a) their coping strategies, (b) levels of pain, fatigue and physical functioning, and (c) if they were currently experiencing an exacerbation of their chronic illness.

Results: Well mothers reported using more self-care when parenting while experiencing pain. Mothers with RA were more likely to set boundaries around their behaviour. Women with MS who were experiencing an exacerbation changed their coping strategies to include more child activities and encourage more mature child behaviour when compared to women with RA who were experiencing an exacerbation.

Discussion: From the perspective of relational coping theory, mothers consider their own pain while simultaneously attending to their responsibilities as a parent. Previous research has suggested that women may withdraw or reduce their parenting activities when they are in pain and this study supported the previous research, especially for women with RA.

Methods: Studies were identified using existing reviews, electronic databases and through hand searching journals. After inclusion and exclusion criteria were applied data were extracted from 18 studies. These were summarized in a narrative synthesis supported by summary tables.

Results: All studies described interventions to support self-care, many targeted at people with arthritis. All used patient education, usually delivered to groups by a range of professionals. The majority of studies reported some significant positive outcomes, most frequently changes in physical functioning, illness knowledge and increased self-efficacy. The average age of participants was 60.

Discussion: This review shows that self-care interventions have had positive effects for older participants but it remains unknown how best to support self-care in participants over 75, a group of people with long-term conditions who may have different needs.

Methods: Thirty individuals with RA were recruited online. Subjects were a subset of participants in the treatment arm of a waiting-list controlled study testing the effectiveness of a 10-week, online, SM education and peer support program. Primary outcomes were process variables describing social activity in the online environment during active treatment. Qualitative review of discussion board posts was undertaken to gain insight into participants' perceptions of social interactions.

Results: Participants spent a large proportion of logged-in time accessing educational materials and community-level activity was vibrant, with members utilizing the discussion board and e-mail. The Chat feature was less well-used. Discussion board posts regarding RAHelp were very positive, especially in regard to perceived supportiveness and bonding among participants, and a sense of feeling uniquely understood by others who have RA. Concern arose in response to periods in which the discussion board was `too quiet.'

Discussion: Our work complements the emerging literature supporting acceptance and utility of Internet-based programming as a venue for SM education and social interaction among individuals with chronic illness.

Methods: A prospective longitudinal study. Data were collected online at baseline, 6 and 12 months. The intervention was an asynchronous 6-week chronic-disease self-management programme offered online. We measured seven health status measures (health distress, self-rated health, illness intrusiveness, disability, fatigue, pain and shortness of breath), four behaviours (aerobic exercise, stretching exercise, stress management and communications with physician), and five utilization measures (GP visits, pharmacy visits, PT/OT visits, emergency visits and hospitalizations). We also measured self-efficacy and satisfaction with the health care system.

Results: A total of 568 completed baseline data: 546 (81%) completed 6 months and 443 (78%) completed 1 year. Significant improvements (p<0.01) were found at 6 months for all variables except self-rated health, disability, stretching, hospitalizations and nights in hospital. At 12 months only decrease in disability, nights in hospital and hospitalizations were not significant with reduction in visits to emergency departments being marginally significant (p = 0.012). Both self-efficacy and satisfaction with the health care system improved significantly.

Discussion: The peer-led online programme conditions appears to decrease symptoms, improve health behaviours, self-efficacy and satisfaction with the health care system and reducing health care utilization up to 1 year.

Methods: A sample of 368 subjects (162 men and 206 women) was randomly selected from patients with type 2 diabetes attending outpatient clinics in King Abdullah University Hospital (KAUH). D-39 was translated using backward forward translation method. Individual D-39 items were recoded, summed and transformed to a 0 to 100-scale. Acceptability, item level validity, scale level validity and reliability were evaluated.

Results: The mean (SD) of D-39 subscales ranged from 26.9 (22.4) for `Social burden' to 50.5 (21.1) for `Energy and Mobility'. Inter item correlations within each scale were moderate to strong. All item-scale correlations exceeded the minimum correlation of 0.40 for adequate item internal consistency. Item discriminat validity was demonstrated since items correlated higher with their own scale than with other scales. For all scales, Cronbach's alpha coefficient exceeded the minimum criterion of 0.7.

Conclusions: Arabic version of D-39 is a reliable and valid instrument to measure quality of life among patients with diabetes in Jordan.

Methods: A secondary analysis of five longitudinal interview studies using a constant comparative method. Patients experienced different types of acupuncture — traditional (based on Chinese medicine) and Western-style (based on biomedicine) in a variety of settings in the UK and Australia.

Results: The markedly different experiences of acupuncture treatment were best characterized in relation to the concept of holism. Being treated `as a whole person' was associated with traditional acupuncture in both private and NHS practice, but not within a research trial setting. In the trial, both patients and practitioners `played their part' in a scientific experiment. Holism was especially important to people with several health problems.

Discussion: The findings suggests that the experience of holistic care, in the sense of `being treated as a whole person' is dependent on four factors: (a) the therapeutic theory that underpins the treatment; (b) structural factors such as time and setting; (c) the intention of the practitioner; and (d) the intention and needs of the patient.

Methods: This was a cross-sectional comparison study. Participants with T1DM or CFRD completed a questionnaire that assessed symptoms suggestive of hypoglycaemia and diabetes-specific HRQoL, and recorded episodes of low blood sugars in a prospective diary. Comparisons of responses were conducted, and Pearson product correlations were determined between HRQoL scores and other continuous variables. HRQoL scores were compared between the groups after adjusting for confounding factors.

Results: Diabetes in cystic fibrosis (CF) patients had a less negative impact on HRQoL than in T1DM patients. Both groups experienced hypoglycaemia, but loss of consciousness or needing help was more common in T1DM patients. Symptoms suggestive of hypoglycaemia were less of a problem for CFRD patients in terms of severity, with T1DM patients having more neuroglycopenic symptoms.

Discussion: Although the same percentage of patients in both groups reported experiencing hypoglycaemia, severity (e.g. symptoms and loss of consciousness) was higher for those with T1DM. Symptoms of hypoglycaemia appear to have a significant impact on HRQoL, and could account for the worse HRQoL in T1DM patients.