Patient participation from the perspective of staff members working in spinal cord injury rehabilitation.

STUDY DESIGN: Qualitative method, semi-structured interviews. OBJECTIVES: The aims of this study were to explore the meaning of patient participation from the perspective of staff members working with spinal cord injury (SCI) rehabilitation, and what they saw as requisites for and constraints to patient participation. SETTING: Swedish spinal injury unit. METHODS: Interviews with 13 staff members at a spinal unit were conducted individually and analyzed by means of content analysis. RESULTS: One category describing patient participation emerged from the interviews: Patient - a team member. Four categories were extracted as requisites: Communication; information and knowledge; routines; respecting the patient as a unique person; and an open climate. Three categories of constraints were identified: Understaffing and new staff members; patients' inability to grasp information; and structures and fragmented responsibilities. CONCLUSIONS: The informants were unanimous in stating that the patient is an integral and natural member of the rehabilitation team. Recognizing the person with SCI as a team member acknowledges and endorses the patient as a person with capabilities to participate in his or her rehabilitation. The patient as a person also means that he or she has unique needs and preferences, which the staff members must accommodate. This is also fundamental in a person-centered approach. Therefore, the viewpoints of the informants may be useful for other settings to enhance person centeredness and patient participation.

Patients' experiences and feelings before undergoing peripheral percutaneous transluminal angioplasty.

The use of interventional radiology as treatment has increased dramatically and peripheral arterial disease (PAD) is now a common indication for vascular interventions such as percutaneous transluminal angioplasty (PTA).(1) PAD seriously impairs quality of life, and patients experience a lack of control over the disease. The aim of this study was to identify patients who are predominantly anxious or calm before PTA treatment and to explore reasons for these feelings. The study includes both individual interviews, a shortened version of a Swedish Mood Adjective Check List (MACL), and an overall assessment of the perceived degree of calmness-anxiety. Forty-two patients were included in the study. The 'anxious' group showed a significantly lower mood in all scales of the MACL compared with the 'calm' group. Reasons for feeling calm were a sense of being safe and high expectations. Reasons for feeling anxious were represented by a sense of despair and apprehension about the PTA. The main reason for feeling calm was related to trust in their caregivers and an ability to foresee upcoming events. The main reason for feeling anxious before the PTA was fear of a negative outcome and being unsure of treatment options. Greater knowledge and a better understanding of their disease and treatment options would support patients' ability to accept reasons for waiting before using invasive treatment. Moreover, this could decrease their anxiety and increase their feeling of being in control of their situation.

A sense of home in residential care.

Moving into a residential care facility requires a great deal of adjustment to an environment and lifestyle entirely different from that of one's previous life. Attachment to place is believed to help create a sense of home and maintain self-identity, supporting successful adjustment to contingencies of ageing. The purpose of this study was to deepen our understanding of processes and strategies by which older people create a sense of home in residential care. Our findings show that a sense of home in residential care involves strategies related to three dimensions of the environment - attachment to place, to space and attachment beyond the institution - and that the circumstances under which older people manage or fail in creating attachment, consist of psychosocial processes involving both individual and shared attitudes and beliefs. Assuming that attachment is important to human existence regardless of age, attention must be paid to optimize the circumstances under which attachment is created in residential care, and how nursing interventions can help speed up this process due to the frail and vulnerable state of most older residents.

Coping in relation to perceived threat of the risk of graft rejection and Health-Related Quality of Life of organ transplant recipients.

The most serious risk connected with transplantations besides infection is graft rejection. Organ transplant recipients (OTRs) perceive graft rejection as a stress factor and a threat. The primary aim of the present study was to examine types of coping used to handle the threat of the risk of graft rejection among OTRs and to investigate relations between coping and perceived threat as well as Health-Related Quality of Life (HRQoL). A second aim was to test the General Coping Questionnaire (GCQ) for reliability in relation to the threat of the risk of graft rejection. Three different questionnaires, the Perceived Threat of the Risk of Graft Rejection (PTGR), GCQ and the SF-36, were mailed to 229 OTRs between 19 and 65 years old. Patients were transplanted with a kidney, a liver or a heart and/or a lung. All patients with follow-up time of 1 year ± 3 months and 3 years ± 3 months were included. With an 81% response rate, the study comprised of 185 OTRs. The differences between the transplanted organ groups in their use of coping were small. Likewise, coping related weakly with sex, age, time since transplantation and whether they had experienced graft rejections or not. The respondents tended in general to use more of the 'positive' coping (strategies related to positive well-being). The measured coping in relation to the perceived threat of the risk of graft rejection seem to be relatively stable over time and quite independent of demographic and clinical variables.

Psychometric evaluation of a coping questionnaire in two independent samples of people with diabetes.

The study examines internal item/scale structure and concurrent validity of a newly developed 48-item questionnaire [General Coping Questionnaire (GCQ)] that measures 10 aspects of coping with chronic illness (self-trust, problem-reducing actions, change of values, social trust, minimization, fatalism, resignation, protest, isolation and intrusion). The tests were performed in two independent samples of persons with diabetes mellitus. The first sample consisted of 119 subjects with type I diabetes and the second sample of 184 subjects with type II diabetes. Concurrent validity was examined by comparisons with measures of health-related quality of life (SF-36), a measure of metabolic control (HbA1c) and incidence of diabetic complications. The item/scale structure was found to be similar and very good in both samples. The 10 dimensions correlated as expected with the measure of mental health, although the 'negative' dimensions of the GCQ correlated higher compared with the 'positive' dimensions. Weaker relations with metabolic control were also found in one of the samples. These tests provide further evidence that GCQ is a well-structured, relevant and reliable instrument for assessing coping reactions in chronic somatic conditions.

The organ transplant symptom and well-being instrument - psychometric evaluation.

BACKGROUND: There is a need for instruments combining measurements of symptom distress and well-being in the organ transplant population. OBJECTIVES: The aim of this study was to describe the development and initial psychometric evaluation of a measure of symptoms and well-being in organ transplant recipients labelled the Organ Transplant Symptom and Well-being instrument (OTSWI) and to provide descriptive data on these matters. METHOD: In this cross sectional survey, the study sample (n=185) completed several measures including demographic information, the Short form- 36 items (SF-36), and the OTSWI to assess concurrent validity by exploring relationships between OTSWI and measures of health related quality of life (HRQOL). The expected scale dimensionality of the OTSWI questionnaire was examined both by the confirmatory multi-trait analysis program and by explorative principal component analysis (with oblique, varimax rotation). Scale reliability was further estimated using the Cronbach's alpha. RESULTS: There were eight factors built up from twenty of the initial fifty one items and were labelled fatigue, joint and muscle pain, cognitive functioning, basic activities in daily life, sleeping problems, mood, foot pain and economy. For the remaining twenty-one items no consistent and meaningful factors could be found leading to relevant symptoms acting as single items. All eight factors had satisfying internal convergent validity as well as good item-scale discriminatory validity or 'success rate'. DISCUSSION: Results support the internal consistency, reliability and concurrent validity of the OTSWI as an instrument to measure symptom distress and well-being in relation to organ transplantation. (Word count 244).

Attitudes to organ donation among Swedish ICU nurses.

AIMS AND OBJECTIVES: To present data on Swedish ICU nurses' attitudes to brain death and organ donation and to test a questionnaire designed to explore these issues in terms of validity and reliability. BACKGROUND: Previous studies have identified various barriers to organ donation. The single most important factor was the attitude of ICU staff. DESIGN: A 34-item instrument was developed to explore attitudes and experiences of organ donation. METHOD: The questionnaire was sent to 50% of ICU nurses in Sweden (n = 1013) and the response rate was 69% (n = 702). The expected scale dimensionality was examined both by explorative principal component analysis and confirmatory multi-trait analysis. Scale reliability was further estimated using Cronbach's alpha. Chi-squared test was used to compare proportions between ICU specialities and Pearson correlations were calculated to investigate relationships between each of the factors verified and the single items. RESULTS: The main findings were that less than half of the ICU nurses trusted clinical diagnosis of brain death without a confirmatory cerebral angiography. Twenty-five percent of the respondents indicated that mechanical ventilation was withdrawn to reduce the possible suffering of a person assumed to be clinically dead, without the issue of organ donation being raised. A total of 39% had experienced occasions when the question about organ donation was never raised with the relatives. Four factors were verified and labelled: personal attitudes to organ donation as a situation; Organisational attitudes to organ donation as a phenomenon; Environmental resources; and Personal wish to donate, which accounted for 70% of the variance. CONCLUSIONS: Swedish ICU nurses reported several barriers to organ donation. An action plan including education in brain death diagnostics, interpersonal relationships and interaction with relatives as well as regular follow-up regarding donation issues in various ICU settings would be useful. RELEVANCE TO CLINICAL PRACTICE: All nurses working in ICUs are obliged to participate in organ donation and are therefore included in these results.

Frail older persons' experiences of interinstitutional relocation.

This study examined the effects and experiences of an interinstitutional relocation on older persons' quality of life, wellbeing, and perceived person-centeredness. A pre-test/post-test mixed method design, with an equivalent reference group, was used to examine relationships between variables and to explore personal meaning. Results indicate a significantly larger deterioration in perceived person centeredness among those cognitively intact residents that moved compared to the non-movers. Interviews with moving residents revealed that the relocation was experienced as uncontrollable, un-affectable, and uncertain. However, no significant relocation effects were found from the proxy ratings of the cognitively impaired residents. Nursing interventions that involve, inform, and prepare older persons prior to interinstitutional relocation to enhance their sense of control of the move might minimize adverse relocation effects. Further research is needed on the effects of interinstitutional relocations, which procedures that should be used, as well as effects of preparatory interventions.

The perceived threat of the risk for graft rejection and health-related quality of life among organ transplant recipients.

AIMS: This study was primarily aimed for developing and testing a valid and reliable instrument that measures perceived threat of the risk for graft rejection after organ transplantation. A second aim was to report descriptive data regarding graft rejection and Health-Related Quality of Life. BACKGROUND: The most serious risk connected with transplantations besides infection is graft rejection. DESIGN: Non experimental, descriptive involving instrument development and psychometric assessment. METHOD: Questionnaires about perceived threat of the risk for graft rejection and Health-Related Quality of Life were mailed to 229 OTRs between 19-65 years old. The items were formed from a previous interview study. Patients were transplanted with a kidney, a liver or a heart and/or a lung. All patients with follow-up time of one year ± three months and three years ± three months were included. RESULTS: With an 81% response rate, the study comprised of 185 OTRs, who had received either a kidney (n = 117), a liver (n = 39) or heart or lung (n = 29). Three homogenous factors of perceived threat for graft rejection were revealed, labelled 'intrusive anxiety', 'graft-related threat' and 'lack of control'. Tests of internal consistency showed good item-scale convergent and discriminatory validity. A majority of the OTRs scored low levels for 'intrusive anxiety'. The kidney transplant recipients experienced more 'graft-related threat' by acute graft rejection than those transplanted with a liver, heart or lung. CONCLUSION: In conclusion, this study suggests that it is possible to measure the perceived threat of the risk for graft rejection in three homogenous factors. Relevance to clinical practice. The instrument perceived threat of the risk for graft rejection, might be usable to measure the impact of fear of graft rejection, to predict needs of pedagogical intervention strategies to reduce fear and to improve Health-Related Quality of Life related to graft rejection.

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.

Coping with myocardial infarction: evaluation of a coping questionnaire.

The negative effects of emotional distress on the recovery following myocardial infarction make it important to study coping strategies in this situation. The present study aimed to evaluate the psychometric properties and the validity of a 10 dimensions questionnaire labelled The General Coping Questionnaire (GCQ). The structure of the questionnaire was based on a previous interview study with 26 persons with different diseases. The 10 dimensions are called self-trust, problem-reducing actions, change of values, social trust, minimization, fatalism, resignation, protest, isolation and intrusion. The present study comprised 114 first-time myocardial infarction patients (37 women, 77 men). Five months after myocardial infarction, they answered questions about health-related quality of life, health complaints, sense of coherence and the GCQ. A multi-trait/multi-item analysis showed good item-scale convergent and discriminatory validity when the GCQ was reduced from 47 to 40 items. In conclusion, the results showed that the 40-item GCQ is a well-structured and reliable questionnaire for measuring coping strategies in myocardial infarction patients.

Health-related quality of life in patients undergoing allogeneic stem cell transplantation after reduced intensity conditioning versus myeloablative conditioning.

The aim of this prospective study was to describe health-related quality of life (HRQOL) in patients during the first year after stem cell transplantation (SCT) who were undergoing reduced intensive conditioning (RIC) compared with patients undergoing myeloablative conditioning (MAC). Fifty-seven patients (25 for MAC and 32 for RIC) were enrolled in the study. HRQOL was assessed at 6 occasions during the first year after SCT using European Organization for Research and Treatment of Cancer Quality of Life Questionnaire and the 19-item treatment-specific module High-Dose Chemotherapy. Both groups reported most symptoms and worst functioning 1 month after SCT, but there were substantial differences. The MAC group deteriorated considerably in 20 symptom scales compared with 8 in the RIC group (score differences <10; P values ranged from .001 to .05). Dry mouth, sore mouth, appetite loss, and change of taste were among the most frequent symptoms in both groups. Thereafter, the functioning improved and the symptom scores decreased and returned to baseline in both groups, except dry mouth, which remained a worse problem for the MAC group. Overall, the RIC group regained health and QOL faster than the MAC group did. However, there were no significant differences in global QOL between the groups 1 year after SCT.

The effects of refurbishment on residents' quality of life and wellbeing in two Swedish residential care facilities.

This study was conducted to follow a refurbishment aimed at enhancing the supportiveness of the physical environment in two Swedish residential care facilities. Significant differences between intervention and equivalent reference groups were found for quality of life (p=0.007) and wellbeing (p=0.02, 0.01) indicating a deterioration for the intervention group. These results suggest that residential care facilities residents are more frail and sensitive to change than has been assumed. This needs to be considered when facilities accommodating the elderly need refurbishment. It also indicates that interior design features alone have little importance for the care climate in nursing homes.

Perceptions of experiences of graft rejection among organ transplant recipients striving to control the uncontrollable.

AIM: To investigate perceptions of graft rejection and different methods to obtain knowledge about graft rejection among adult organ transplant recipients. BACKGROUND: Rejection is the most common cause of graft loss and graft dysfunction in clinical transplantation. Little is known about the recipients' own explanation models related to graft rejection. DESIGN: Phenomenography. METHOD: A strategic selection included patients who had undergone a kidney, liver, heart or lung transplant. Sixteen patients, six males and 10 females, aged 21-63 years with a follow-up time of between three months and 10 years were interviewed. RESULTS: The result comprised five domains of variations in perceptions of graft rejection: the abstract threat to life; the concrete threat to health; trust in the body; striving to control the threat; and one's identity. The inner perspective and personal explanation models involved threat, fear, trust, control and identity adjustment. Different approaches had the same purpose; 'striving to control the uncontrollable'. CONCLUSION: Learning about graft rejection revealed security, lack of security and uncertainty. RELEVANCE TO CLINICAL PRACTICE: The inner perspective of graft rejection in this result leads to several clinical implications in terms of patient education and recipients' differing ways of obtaining knowledge about graft rejection. We suggest that patient's education should be tailored in a different way, offering support and advice in line with their personal models of explanation of graft rejection as a complement to the explanation from the biomedical model of disease.

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.

Health-related quality of life during adjuvant treatment for breast cancer among postmenopausal women.

The purpose of the present study was twofold: first, to describe changes of Health-Related Quality of Life (HRQoL) during the adjuvant treatment among postmenopausal women with breast cancer; second, in the same population to identify the best predictors of Overall Quality of Life (QoL) after treatment, from perceived functioning, symptoms, emotional distress and clinical/demographic variables measured at baseline. The study group was 150 women (> or = 55 years of age) scheduled for adjuvant chemotherapy (CT, n=75) or radiotherapy (RT, n=75). They were examined before (baseline), during and after completing the treatment. Data about QoL, perceived functioning, symptoms and emotional distress were collected with the European Organisation for Research and Treatment of Cancer (EORTC)-QLQ-C30, BR23 and Hospital Anxiety and Depression Scale (HADS) questionnaires. The general finding was that the adjuvant treatments were associated with decrease in overall QoL, physical and role functioning, anxiety and body image, as well as with increase in fatigue, dyspnoea, pain, nausea/vomiting, constipation and systemic therapy side effects measured over time. For women receiving CT, better emotional functioning and less pain at baseline predicted better overall QoL at the end of the treatment. For women receiving RT, better physical and emotional functioning, less breast symptoms and lower tumour stage at baseline predicted better overall QoL at the end of the treatment.

The impact of age on Health-Related Quality of Life (HRQoL) and symptoms among postmenopausal women with breast cancer receiving adjuvant chemotherapy.

BACKGROUND AND PURPOSE: Elderly women with breast cancer are often not given adjuvant chemotherapy (CT). One reason for this is that older women are believed to have more problems in tolerating side-effects of CT. The purpose of this study was to analyze the impact of age on health related quality of life (HRQoL) and symptoms in postmenopausal women with breast cancer undergoing adjuvant CT. PATIENTS AND METHODS: Eighty consecutive postmenopausal patients planned for CT were invited. Seventy-five agreed to participate (age 55-77 years). The patients completed two cancer-specific HRQoL questionnaires, The European Organisation for Research and Treatment of cancer (EORTC) EORTC-QLQ-C30, the EORTC-QLQ-BR23, and the Hospital Anxiety and Depression Scale (HADS) before, during, and 4 months after completion of treatment. The design was descriptional and longitudinal. Correlations were examined between age and change in HRQoL variables. RESULTS: No significant correlations were found between age and any of the assessed HRQoL domains or symptom scales, except for dyspnoea and sexual functioning. Age was inversely correlated to change in dyspnoea from baseline through follow-up, whereas older women perceived their sexual functioning significantly lower at baseline. CONCLUSION: The results indicate that among postmenopausal patients in the age range 55-77 years consecutively selected for adjuvant CT age was not a predictor of decreased HRQoL. This supports the argument that age should not be used in isolation in decisions about adjuvant CT for breast cancer in elderly women.

Psychometric properties of a Swedish version of the Kansas City Cardiomyopathy Questionnaire in a Chronic Heart Failure population.

BACKGROUND: Valid assessments of health-related Quality of Life (HRQL) are increasingly important in chronic, incurable conditions, such as chronic heart failure (CHF). AIMS: To evaluate the psychometric properties of a Swedish version of the Kansas City Cardiomyopathy Questionnaire (KCCQ) in hospitalized patients with decompensated CHF. METHOD AND RESULTS: The KCCQ and SF-36 were administered to patients (n=118) with CHF at baseline and then 1 (n=51) and 4 months (n=83) after admission. The Swedish version of the KCCQ appears to have acceptable convergent and discriminant validity for all suggested health domains. Cronbach's alpha and test-retest reliability met for most of the scales the minimum of 0.70. Known-groups comparison indicated that the KCCQ discriminated between patients differing in the New York Heart Association (NYHA) classification (criterion validity). The KCCQ was also more responsive to changes in the NYHA classification as compared with the SF-36. However, KCCQ has some weakness in the response distributions for two questions and the convergent validity in one question. CONCLUSION: Overall, the KCCQ is a valid and reliable instrument in a Swedish CHF population. It yields reliable and valid scores and is quite responsive to clinical change.

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.