Individualized blended care for patients with colorectal cancer: the patient's view on informational support.

PURPOSE: The number of colorectal cancer patient survivors is increasing. Information and support during and after treatment are requested by patients, but questions remain on what to provide. The aim of this study was to understand what informational needs colorectal cancer patients and survivors have, with a focus on the potential support given by patient peers and the use of blended care. METHODS: A qualitative study using focus groups was conducted with patients diagnosed at the same hospital at least one year prior to the initiation of the study. The focus group interviews were transcribed verbatim and analyzed using deductive content analysis. RESULTS: The need for informational support varied over time and depended on individual patient characteristics. Timing was crucial and patients requested options of blended care and informational support after treatment cessation. The patients felt alone after treatment and requested assistance in communication with their next-of-kin. They also identified the value of peer support, especially to contextualize knowledge provided by healthcare. CONCLUSION: This study showed a need for focus on individualized informational support. Blended care through integrating communication with peers online could be one way to support patients, both to enable shared decision-making as well as to provide person-centered care.

Flawed communications: Health professionals' experience of collaboration in the care of frail elderly patients.

AIMS: Frail elderly patients who have multiple illnesses do not fare well in modern health care systems, mainly due to a lack of care planning and flawed communication between health professionals in different care organisations. This is especially noticeable when patients are discharged from hospital. The aim of this study was to explore health care professionals' experience of obstacles and opportunities for collaboration. METHODS: Health professionals were invited to participate in three focus groups, each consisting of a hospital physician, a primary care physician, a hospital nurse, a primary care nurse, a municipal home care nurse or an assistant officer, a physical or occupational therapist and a patient or a family member representative. These individual people were then asked to discuss the obstacles and opportunities for communication between themselves and with the patients and their relatives when presented with the case report of a fictitious patient. Content analysis was used to identify categories. RESULTS: Several obstacles were identified for effective communication and care planning: insufficient communication with patients and relatives; delayed collaboration between care-givers; the lack of an adequate responsible person for care planning; and resources not being distributed according to the actual needs of patients. The absence of an overarching responsibility for the patient, beyond organisational borders, was a recurring theme. These obstacles could also be seen as opportunities. CONCLUSIONS: Obstacles for collaboration were found on three levels: societal, organisational and individual. As health care professionals are well aware of the problems and also see solutions, management for health care should support employees' own initiatives for changes that are of benefit in the care of frail elderly patients with multiple illnesses.

Patients´ Variations of Reflection About and Understanding of Long-Term Illness- Impact of Illness Perception on Trust in Oneself or Others.

BACKGROUND: Patients' understanding of their illness is of great importance for recovery. Lacking understanding of the illness is linked with the patients' level of reflection about and interest in understanding their illness. OBJECTIVE: To describe patients' variations of reflection about and understanding of their illness and how this understanding affects their trust in themselves or others. METHOD: The study is based on the "Illness perception" model. Latent content analysis was used for the data analysis. Individual, semi-structured, open-ended and face-to-face interviews were conducted with patients (n=11) suffering from a long-term illness diagnosed at least six months prior to the interview. Data collection took place in the three primary healthcare centres treating the participants. RESULTS: The results show variations in the degree of reflection about illness. Patients search for deeper understanding of the illness for causal explanations, compare different perspectives for preventing complication of their illness, trust healthcare providers, and develop own strategies to manage life. CONCLUSION: Whereas some patients search for deeper understanding of their illness, other patients are less reflective and feel they can manage the illness without further understanding. Patients' understanding of their illness is related to their degree of trust in themselves or others. Patients whose illness poses an existential threat are more likely to reflect more about their illness and what treatment methods are available.

Strategies for healthcare professionals to facilitate patient illness understanding.

AIMS AND OBJECTIVES: To describe how healthcare professionals facilitate patient illness understanding. BACKGROUND: Healthcare professionals and patients differ in their illness understanding. If the information provided by healthcare professionals is not adapted to the patient's daily life, it may be unusable for the patient. Previous research has found that healthcare professionals should individualise the information to enable the patient to apply the knowledge to the personal situation and to develop illness understanding. However, little is known of how healthcare professionals can facilitate patient illness understanding. METHOD: A qualitative descriptive study based on individual, semi-structured, open-ended and face-to-face interviews was conducted with healthcare professionals (n = 11) concerning how they facilitate patients illness understanding. Three health centres were involved during the period of March to November 2014. The interviews were analysed with qualitative content analysis. RESULTS: The result identified a continuous and collaborative process with three strategies used by healthcare professionals to facilitate the patient's illness understanding: (i) assess the patient's illness understanding, (ii) interact with the patient to develop illness understanding and (iii) support the patient's personal development for illness understanding. The steps in the process depend on each other. CONCLUSIONS: The results of our analysis indicate that healthcare professionals can use the continuous and collaborative process to enhance the patient's self-care ability and turn his or her knowledge into action for improving illness understanding. RELEVANCE TO CLINICAL PRACTICE: The three continuous and collaborative process strategies involving pedagogical approaches can create conditions for healthcare professionals to obtain a holistic view of the patient's life and to be a key resource for person-centred care.

Illness perceptions of fatigue and the association with sense of coherence and stress in patients one year after myocardial infarction.

AIMS AND OBJECTIVES: To explore the associations between illness perceptions of fatigue, sense of coherence and stress in patients one year after myocardial infarction. BACKGROUND: Post-myocardial infarction fatigue is a stressful symptom that is difficult to cope with. Patients' illness perceptions of fatigue guide professionals in predicting how individuals will respond emotionally and cognitively to symptoms. Individuals' sense of coherence can be seen as a coping resource in managing stressors. DESIGN: A cross-sectional study design was used. METHOD: One year post-myocardial infarction, a total of 74 patients still experiencing fatigue completed four questionnaires: the Multidimensional Fatigue Scale Inventory-20, the Brief Illness Perception Questionnaire, the Sense of Coherence scale (sense of coherence-13) and a single-item measure of stress symptoms. Descriptive statistics, correlations and stepwise regression analysis were carried out. RESULTS: Strong negative associations were found between illness perceptions of fatigue, sense of coherence and stress. Sense of coherence has an impact on illness perceptions of fatigue. Of the dimensions of sense of coherence, comprehensibility seemed to play the greatest role in explaining illness perceptions of fatigue one year after myocardial infarction. CONCLUSION: To strengthen patients' coping resources, health-care professionals should create opportunities for patients to gain individual-level knowledge that allows them to distinguish between common fatigue symptoms and warning signs for myocardial infarction. RELEVANCE TO CLINICAL PRACTICE: There is a need to improve strategies for coping with fatigue. It is also essential to identify patients with fatigue after myocardial infarction, as they need explanations for their symptoms and extra support.

Psychometric analysis of the Multidimensional Fatigue Inventory in a sample of persons treated for myocardial infarction.

BACKGROUND AND PURPOSE: Fatigue after myocardial infarction is a frequent and distressing symptom in the early recovery phase. The purpose of this study is to psychometrically evaluate the Multidimensional Fatigue Inventory (MFI-20). METHODS: The MFI-20 was evaluated using Rasch analysis. RESULTS: The result showed that the MFI-20 can be used to obtain a global score reflecting an underlying unidimensional trait of fatigue; a transformation of the summarized raw scale scores into interval scale scores could be made. Also, 4 of the 5 original dimensions separately fitted the Rasch model. CONCLUSIONS: Calculation of a global score increases the possibility of identifying persons experiencing fatigue after myocardial infarction, and using the MFI-20 dimension scores increases the possibility of determining each person's specific fatigue profile.

Fatigue two months after myocardial infarction and its relationships with other concurrent symptoms, sleep quality and coping strategies.

AIMS AND OBJECTIVES: To explore fatigue levels two months after myocardial infarction and examine the associations with other concurrent symptoms, sleep quality and coping strategies. BACKGROUND: Fatigue has been found to be the most frequent and bothersome symptom after myocardial infarction, influencing health-related quality of life negatively. DESIGN: The present study was explorative and cross-sectional. The focus was on fatigue two months postmyocardial infarction, complemented with a comparative analysis of fatigue dimension levels. METHODS: The sample included 142 persons (mean age 63 years), treated for myocardial infarction, who responded to a questionnaire package measuring fatigue, depression, health complaints (symptoms), sleep quality and coping strategies. RESULTS: The main results showed that a global fatigue score two months postmyocardial infarction was associated with concurrent symptoms, such as breathlessness and stress, and coping strategies such as change in values, intrusion and isolation. In comparisons of present fatigue dimension levels (general fatigue, physical fatigue, reduced activity and mental fatigue) two months postmyocardial infarction with baseline measurements (first week in hospital), the results showed that levels of fatigue dimensions had decreased. In comparisons with levels of fatigue four months postmyocardial infarction in a reference group, we found lower levels of fatigue two months postmyocardial infarction. CONCLUSION: The present findings indicated that postmyocardial infarction fatigue is lowest two months postmyocardial infarction. This may thus be the right time to identify persons experiencing postmyocardial infarction fatigue, as timely fatigue relief support may prevent progression into a state of higher levels of fatigue. RELEVANCE TO CLINIC PRACTICE: Measuring fatigue two months postmyocardial infarction would enable healthcare professionals to identify persons experiencing fatigue and to introduce fatigue relief support. Tailored rehabilitation support should include stress management and breathlessness relief support. If maladaptive use of the coping strategies isolation and intrusion is observed, these strategies could be discussed together with the patient.

I've lost the person I used to be--experiences of the consequences of fatigue following myocardial infarction.

Fatigue has been found to be the most frequent and bothersome symptom after myocardial infarction (MI), influencing health-related quality of life negatively. Moreover, fatigue after MI has been described as incomprehensible due to its unpredictable occurrence and lack of relationship to physical effort. The aim of this study is therefore to explore persons' experiences of consequences of fatigue and their strategies for dealing with it 2 months after MI. In total, 18 informants, aged 42-75 years, participated in the study. Interviews were conducted and analysed using constructivist grounded theory methodology. Grounded in the data, the main consequence of fatigue, as illustrated in the core category, was: I've lost the person I used to be. It indicates a sense of reduced ability to manage daily life due to experiences of fatigue. The core category was developed from the four categories: involuntary thoughts, certainties replaced with question marks, driving with the handbrake on and just being is enough. Furthermore, attempts to relieve fatigue were limited. These findings indicate that patients with symptoms of fatigue should be supported in developing relief strategies, for example, rest and sleep hygiene as well as physical activity. In conclusion, the results show that fatigue can be understood in light of the concepts "comprehensibility" and "manageability." They also indicate that, working from a person-centered perspective, health-care professionals can support patients experiencing post-MI fatigue by giving them opportunities to straighten out the question marks and by inviting them to discuss involuntary thoughts and feelings of being restricted in their daily life functioning.

Fatigue after myocardial infarction - a two-year follow-up study.

AIMS AND OBJECTIVES: To investigate changes in self-reported fatigue and depression from four months to two years following a myocardial infarction, as well as to explore gender differences, identify the incidence of fatigue without coexisting depression and finally predict health-related quality of life at a two-year follow-up. BACKGROUND: Depression and fatigue are associated with decreased health-related quality of life after myocardial infarction. Although there is a close relationship between fatigue and depression, it has been shown that symptoms of fatigue can occur without coexisting depression. DESIGN: Quantitative and longitudinal design. METHODS: Participants (n = 155) were asked to complete the following questionnaires: the Hospital Anxiety and Depression Scale, the Multidimensional Fatigue Inventory-20 (MFI-20) and the Short Form Survey (SF-36) following myocardial infarction (after four months and two years). Descriptive statistics, paired t-tests and multiple regressions were carried out. RESULTS: In the entire group, self-reported fatigue had decreased from four months to two years after myocardial infarction. After two years, 18% of respondents reported depression together with fatigue and 30% reported fatigued without depression. Women scored higher than men on the fatigue dimensions reduced activity, reduced motivation and mental fatigue. Moreover, the physical dimension of health-related quality of life two years after myocardial infarction was predicted by experienced general fatigue at four months. CONCLUSION: Fatigue with or without coexisting possible/probable depression remains as a significant symptom two years after myocardial infarction in nearly half of the entire group. RELEVANCE TO CLINICAL PRACTICE: Fatigue is a problem following myocardial infarction. Therefore, systematic screening and early identification of patients experiencing symptoms of depression and fatigue after myocardial infarction are important for suitable care planning. In contemporary coronary care, strategies aimed at relieving fatigue should be developed.

General self-efficacy and health-related quality of life after myocardial infarction.

Fatigue after myocardial infarction (MI) has been found to be distressing. A person's self-efficacy will influence his/her health behavior and plays an active role in tackling illness consequences. This study investigated associations between fatigue, disturbed sleep, general self-efficacy, and health-related quality of life (HRQoL) in a sample of 145 respondents admitted to hospital for MI two years earlier. The aim was to identify the predictive value of general self-efficacy and to elucidate mediating factors between self-efficacy and HRQoL. General self-efficacy measured four months after MI was positively related to HRQoL after two years. In tests of indirect effects, fatigue meditated the effects between self-efficacy and the physical and the mental dimension of HRQoL, respectively. The indirect effect of disturbed sleep went through that of fatigue. To conclude, patients who suffer from post-MI fatigue may need support aimed at helping them increase their self-efficacy as well as helping them adapt to sleep hygiene principles and cope with fatigue, both of which will have positive influences on HRQoL.

Validation of the Revised Illness Perception Questionnaire (IPQ-R) in a sample of persons recovering from myocardial infarction--the Swedish version.

When people's health is threatened, they generally develop illness perceptions to make sense of their illness. The Illness Perception Questionnaire (IPQ-R), developed by Moss-Morris et al (2002), has been widely used in many countries to measure such representations. However, since studies in this crucial research area are lacking in Sweden a Swedish version of IPQ-R was validated with a focus on the seven subscales: timeline acute/chronic, timeline cyclical, consequences, personal control, treatment control, illness coherence and emotional representations. Using confirmatory factor analysis, the aim of the present study was to validate the internal structure of the Swedish version in a sample of 202 persons (144 men and 58 women) who had been diagnosed with myocardial infarction four months earlier. Additionally, inter-correlations among the seven subscales and external concurrent validity were also investigated. The results of confirmatory factor analysis revealed that, in line with the English version of the IPQ-R, the specified seven-factor model had a satisfactory fit. One item was however not considered reliable and was therefore excluded from the instrument. The internal consistency (Cronbach's alpha coefficients) and the inter-factor correlations were relatively similar to those reported in the validation study of the original English IPQ-R. In tests of concurrent validity, the seven IPQ-R subscales were, as hypothesized, mainly associated with external variables. To conclude, the Swedish version of the IPQ-R's seven dimensions, with one item removed, (total 37 items) was found to be a reliable and valid measure of illness perception.

Fatigue after myocardial infarction: relationships with indices of emotional distress, and sociodemographic and clinical variables.

Fatigue and depressive symptoms are relatively common among patients recovering from myocardial infarction (MI). The symptoms of depression and fatigue overlap. The present study aimed at identifying patient fatigue and at examining the incidence of fatigue, particularly without coexisting depression, after MI. The sample comprised 204 consecutive patients who had completed the questionnaires Hospital Anxiety and Depression Scale and the Multidimensional Fatigue Inventory-20 after MI (1 week and 4 months). The results showed that fatigue had decreased after 4 months compared with the time of MI onset. Compared with the general population, patients reported significantly higher levels of fatigue. Furthermore, fatigue was associated with depression, but 33% of the sample reported fatigue without coexisting depression after 4 months. In order to prevent or treat patients' symptoms of fatigue after MI, the concepts of fatigue and depression should be assessed separately so as to exclude overlapping effects.

Illness perceptions after myocardial infarction: relations to fatigue, emotional distress, and health-related quality of life.

BACKGROUND AND RESEARCH OBJECTIVE: : Health-related quality of life (HRQoL) is impaired in patients after a myocardial infarction (MI), and fatigue and depression are common health complaints among these patients. Patients' own beliefs about their illness (illness perceptions) influence health behavior and health outcomes. The aim of the present study was to examine illness perception and its association with self-reported HRQoL, fatigue, and emotional distress among patients with MI. SUBJECTS AND METHODS: : The sample consisted of 204 patients who had had MI and who completed the questionnaires during the first week in the hospital and 4 months after the MI. The questionnaires used were the Illness Perception Questionnaire, Multidimensional Fatigue Inventory, Hospital Anxiety and Depression Scale, and the Short Form Health Survey (SF-36). RESULTS: : Patient's illness perception changed over time from a more acute to a more chronic perception of illness, and beliefs in personal and treatment control of MI had decreased. Furthermore, these negative beliefs were associated with worse experiences of fatigue and lowered HRQoL. CONCLUSIONS: : Patients' illness perceptions influence health outcomes after an MI. Supporting MI patients in increasing their perception of personal control could be a primary nursing strategy in rehabilitation programs aimed at facilitating health behavior, decreasing experiences of fatigue, and increasing HRQoL.

Physical activity six months after a myocardial infarction.

In the present study, we wished to explore physical activity in middle-aged patients 6 months after a myocardial infarction and to compare the patients' self-reported activity level with pedometric measures of footsteps/day. The sample comprised 89 patients with myocardial infarction, aged

Patients' illness perception four months after a myocardial infarction.

AIMS AND OBJECTIVES: The aim of this study was to explore patients' illness perception of myocardial infarction four months after a myocardial infarction. BACKGROUND: An important task for research on recovery from myocardial infarction is to understand the factors that influence an individual's adherence to secondary preventive strategies. Perceptual, cognitive and motivational factors have been found to influence adherence to a secondary preventive regimen. METHOD: Twenty-five patients were interviewed four months after a myocardial infarction. In accordance with grounded theory methodology, data collection and analysis were carried out simultaneously. RESULTS: The findings can be understood in light of two core categories: 'trust in oneself ' vs. 'trust in others'; belief in one's own efforts to control the illness; and 'illness reasoning', lines of thought about illness identity. In searching for relationships, six categories describing variation in illness perceptions of a myocardial infarction emerged: (i) 'sign of a chronic condition - feasible to influence'; (ii) 'sign of a chronic condition - uncontrollable'; (iii) 'acute event that can recur - feasible to influence'; (iv) 'acute event that can recur - uncontrollable'; (v) 'unthinkable acute event'; and (vi) 'non-recurring acute event'. CONCLUSION: The more reflective patients perceived the heart attack as a sign of a chronic condition; they also devoted time for reasoning about the possible causes of their illness. This is in contrast to patients who were less reflective and viewed their myocardial infarction as an acute event, which they avoided thinking about. The findings contribute to our understanding of variation in illness perceptions. RELEVANCE TO CLINICAL PRACTICE: The examination of how individuals perceive myocardial infarction may help health-care professionals individualize secondary preventive strategies, thereby improving adherence to health-care regimens. Nurse-patient discussions could begin with identification of the patient's variations of reflectiveness concerning his/her illness.

Living with incomprehensible fatigue after recent myocardial infarction.

AIM: This paper is a report of a study of what fatigue means to patients with recent myocardial infarction (MI) and how they manage to deal with the consequences of this symptom. BACKGROUND: After MI, fatigue is a frequent and distressing symptom. In nursing practice and in everyday conversations, the term 'tiredness' has a broad meaning that is often used synonymously with fatigue. Fatigue may be defined as a state along an adaptation continuum with tiredness and exhaustion as distinct states at the ends of the continuum. METHOD: In accordance with a constructivist grounded theory method, 19 patients were interviewed four months after having a MI. The informants were chosen from a larger sample of patients admitted to a coronary care unit during the period October 2005 to September 2006. FINDINGS: Living with incomprehensible fatigue was identified as the central theme, which described what fatigue meant to patients 4 months after their MI and how they handled it. The core category was labelled incomprehensible fatigue. Two of the categories refer to consequences: being restricted and feeling defeated and one category describes management: fumbling coping strategies. Finally, one category concerns the outcome: moderate relief of fatigue. CONCLUSION: Nursing interventions could focus on identifying and reducing stressors as well as on increasing patients' ability to cope with stressors. Further research should focus on identifying stressors and useful coping strategies after MI, knowledge that could be used to prevent aggravation of fatigue.