Health care professionals' experiences and enactment of person-centered care at a multidisciplinary outpatient specialty clinic.

INTRODUCTION: Person-centered care (PCC) appears particularly suitable for patients with complex diseases and in multidisciplinary care. However, previous research tends to focus on each profession and condition separately. PURPOSE: We studied how health care professionals (HCPs) understand PCC, and whether their clinical practice is aligned with their theoretical understanding, when starting clinical practice at a novel multidisciplinary clinic. METHODS: In total, 16 semi-structured interviews with HCPs and 31 non-participatory observations of outpatient meetings and other activities at the clinic such as team meetings were conducted at a multidisciplinary, integrated outpatient clinic in Sweden. All patients had simultaneous diabetes mellitus, chronic kidney disease and established cardiovascular disease. The clinic employed a PCC approach. Data were analyzed using an inductive thematic approach. RESULTS: Two key findings emerged. First, PCC requires a holistic view of the patient at all times during care, with everything focused on the patient. This requires that the HCPs know the patient well enough as an individual to be able to tailor the care together with them. Second, working with a PCC philosophy leads to transformed roles for HCPs in patient meetings, with more active involvement by the patient and often also their next of kin. The observations, in comparison with the interviews, showed that not all HCPs applied their views on PCC in patient meetings. Observations showed that some patient meetings were less person-centered than others, potentially due to stress or lack of time. CONCLUSION: PCC require HCPs to have a holistic view of the patients and a deeper understanding of their situation, as individuals. Working with PCC also leads to a more coaching, supportive role of the HCPs.

Gender differences in quality of life after stroke and TIA: a cross-sectional survey of out-patients.

AIMS AND OBJECTIVES: To explore how a stroke or a transient ischemic attack affects quality of life and to identify gender differences. BACKGROUND: The negative effect of a stroke on the patients' quality of life has previously been studied, while the effect on patients with transient ischemic attack (TIA) is more unknown, especially in relation to gender. As poor quality of life may have a negative effect on rehabilitation it is important to investigate quality of life in this group. DESIGN: A descriptive cross-sectional survey. METHODS: All stroke and transient ischemic attack patients appointed to the out-patient stroke clinic between May 2008-August 2009 were asked to complete the Nottingham Health Profile. RESULTS: Of 1048 patients, 379 (50%) of the stroke patients and 117 (40%) of the patients with transient ischemic attack completed the form within the first months after onset. Female stroke patients were significantly more negatively affected in all domains except the social domain than were male stroke patients. Female transient ischemic attack patients were significantly more negatively affected in all domains than were male transient ischemic attack patients. Male stroke patients had a significantly more negatively affected quality of life than male transient ischemic attack patients in the emotional, energy, social and total domains, while female stroke patients and female transient ischemic attack patients were equally negatively affected. CONCLUSIONS: This study shows that female stroke patients are more negatively affected in their quality of life than male stroke patients and that female transient ischemic attack patients are as affected as female stroke patients. This indicates that female patients with both stroke and TIA need more attention concerning their life situation. RELEVANCE TO CLINICAL PRACTICE: Increased knowledge about how transient ischemic attack patients are affected, indicate that this group need support postdischarge to the same extension as stroke patients.

Quality of life in chronic disease: a comparison between patients with heart failure and patients with aphasia after stroke.

OBJECTIVES: This study aimed to describe the impact of heart failure and of stroke with aphasia on quality of life (QoL) and to compare the different domains of QoL in these groups. BACKGROUND: The prevalence of chronic conditions has increased during the last decades, and chronic diseases such as stroke and heart failure may have a great impact on QoL. DESIGN: Comparative study of patients from two randomised controlled studies. METHOD: Seventy-nine patients with heart failure and 70 patients with aphasia after stroke were evaluated concerning the severity of their disease and by QoL, as measured with the Nottingham Health Profile, in the acute phase and after six months. RESULTS: The severity of the disease improved between baseline and six month for both groups. Correlations between New York Heart Association (NYHA) class and all QoL domains were seen in patients with heart failure after six months. The degree of aphasia correlated to mobility, social, emotional and total score after six month. QoL in patients with heart failure was more affected in the domains of sleep and energy in the acute phase and in the energy domain at six months. CONCLUSION: Although low energy is more frequent among patients with heart failure, both groups report poor QoL. Improvement in severity of the disease is not necessarily accompanied by improvement in QoL. RELEVANCE TO CLINICAL PRACTICE: Nottingham Health Profile can easily be used as a screening instrument, aiming to identify patients at risk for adverse effects on QoL. A better understanding of the subjective QoL of patients with chronic disease is fundamental for health care professionals to be able to identify and support vulnerable patients.

Predictors of life situation among significant others of depressed or aphasic stroke patients.

AIM: The aim of this study was to examine predictors of the life situation of the significant other of depressed or aphasic stroke patients. BACKGROUND: Depression and aphasia are common consequences of stroke, and both may put pressure on the significant other who have to deal not only with a possible physical handicap but also with communication and/or serious psychiatric difficulties. DESIGN: Descriptive, cross-sectional study. METHODS: The participants were significant others of 71 depressed and 77 aphasic stroke patients. Depression was diagnosed according to the Diagnostic and Statistical Manual of Mental Disorder, and degree of aphasia was diagnosed with the Amsterdam Nijmegen Everyday Language Test. Assessments of the life situation, state of depression and aggression, personality change and need of assistance were made through questionnaires issued to the significant others. RESULTS: Perceived need of assistance was the only common predictor of life situation of the significant other in both groups (p < 0.001). With respect to the aphasic patients, perceived personality change (p < 0.001) and living with the patient (p = 0.004) were factors that had a negative effect on the life situation of the significant other. CONCLUSIONS: This study highlights that the perception of the patient's need of assistance is an important factor in predicting the life situation among spouses of depressed as well as aphasic stroke patients. A comparison of the two groups to explain the life situation of the significant others revealed greater explanatory power for the aphasic group. RELEVANCE TO CLINICAL PRACTICE: Assessments of the spouses' perception as well as of the patients' factual situation may identify those significant others at risk. With this new approach, necessary steps may be taken to alleviate pressure on the significant other.

The impact of gender regarding psychological well-being and general life situation among spouses of stroke patients during the first year after the patients' stroke event: a longitudinal study.

BACKGROUND: The informal caregivers perceive lack of choice to take on the role of caregiving, receiving little or no preparation for the caregiving role at home. The typical informal caregiver is female, either a spouse or adult child of the care recipient, and seldom shares the responsibilities of caregiving with other family members. The spouses worry about the ill relative, but also about what consequences the disease might have for their own life. The worries seem to vary with gender and disease. There are, to our knowledge, few previous longitudinal studies that have focused on gender differences among spouses of stroke patients. OBJECTIVES: To explore gender differences among spouses in perceived psychological well-being and general life situation, during the first year after the patients' stroke event. DESIGN: Longitudinal study with three assessments regarding psychological well-being and general life situation during 1 year. SETTINGS: The study took place at a stroke ward, Stockholm, Sweden. PARTICIPANTS: Consecutively 80 female and 20 male spouses of stroke patients admitted to a stroke unit participated. METHODS: Data were analysed using analyses of variance. RESULTS: Female spouses have a negative impact on psychological well-being, while male spouses have a lower occurrence of emotional contacts in their social network. Consistently, the female spouses reported lower quality of life and well-being than the male spouses. CONCLUSIONS: This study generates the hypotheses that there are gender differences among spousal caregivers of stroke patients; female spouses are more negatively affected in their life situation due to the patients' stroke event than the male spouses. It is important to take the individual differences under consideration when designing a nursing intervention, to meet the different needs and demands of male and female caregivers. The interventions should focus on individual support, so that the caregivers can adapt to their new role and be comfortable and effective as informal caregivers.

Predictors of psychological health in spouses of persons affected by stroke.

AIM: To identify predictors of psychological health and examine if these predictors change over time in spouses of stroke patients during the first year after stroke. A second aim was to identify gender differences in psychological health among the spouses. BACKGROUND: The impact of burden in long-term caregivers may result in psychological consequences for the spouse. The rehabilitation process for the patient can be negatively affected by a stressed caregiver and result in long-term hospitalization. To identify spouses at risk for physical and psychological distress is, therefore, essential to support those in need. DESIGN: Longitudinal, comparative study. METHODS: One hundred spouses of stroke patients were assessed at baseline, as well as after six and 12 months, regarding psychological health, well-being, own illness, need of assistance from general practitioner and/or district nurse, social network and knowledge about stroke. Stepwise multiple regression analyses were conducted for baseline, six- and 12-month assessments, respectively, with psychological health as the dependent variable. RESULTS: General well-being and presence of illness in spouse were the most prominent predictors of psychological health, throughout the first year. CONCLUSIONS: Enhancing psychological health and preventing medical problems in the caregiver are essential considerations to enable patients with stroke-related disabilities to continue to live at home. RELEVANCE TO CLINICAL PRACTICE: Evaluating the situation for spouses of stroke patients is an important component when planning for the future care of the patient.

Post-stroke depression - effect on the life situation of the significant other.

The aim of this study was to describe the life situation among 'significant others' to patients with post-stroke depression, and to identify associations between the life situation of the significant others and patient characteristics. Seventy-one dyads consisting of patients with a diagnosed post-stroke depression and their significant others were included. The patients were assessed for depression with the Montgomery-Asberg Depression Rating Scale and diagnosed according to the DSM-IV. The assessments of significant others included their own life situation and proxy assessments of the patients' state of depression, anger, change of personality, and need of assistance. Significant others of male stroke patients reported a more negative impact on their life situation, than did significant others of female stroke patients (p = 0.04). There was a significant association between the patient's level of depression and physical function [activities of daily living (ADL)], with those with less impaired ADL having more major depression than those with more impaired ADL (p = 0.007). This study indicates that major post-stroke depression is more common among patients with limited functional deficits. This highlights the importance of assessment for depression also among seemingly recovered stroke patients in order to treat and support those in need. This study also stresses the importance of identifying different needs of the significant others in order to provide appropriate support in their caregiving role.

Predictors of quality of life among spouses of stroke patients during the first year after the stroke event.

BACKGROUND: Stroke, a disease with severe consequences for patients and their families, often lead to psychosocial stress, and a decline in the quality of life (QoL) among carers. Predicting the QoL is essential in the development of effective nursing support interventions. AIM: The aim of the present study was to identify predicting factors for the general QoL among spouses of stroke patients, and to determine whether these predictors change during the first year after the patient's stroke event. DESIGN: One hundred spouses were followed three times during 1 year regarding QoL, own illness, economic situation, well being, life situation, sense of coherence, social network and the patients' ability in activities of daily living (ADL). Stepwise multiple linear regression analyses were conducted for the baseline, 6- and 12-month assessments respectively, with the present QoL as the dependent variable. RESULTS: Over time during the first year after the patients' stroke event, there were significant differences in the spouses perceived general QoL. Life situation and economic situation were the only predictors of the spouses' QoL, which emerged during the entire year after the patient's stroke event, while well being, education, own illness, social network and ADL ability (patient) emerged at one or two occasions. CONCLUSION: The psychosocial factors -- life situation, well being, social network, education and economy -- are important in predicting QoL among spouses of stroke patients, and these predicting factors change over time. Determining the predictors at an early stage, and continuously over time, will help to focus clinical nursing interventions on the spouses' changing needs.

Spouse's life situation after partner's stroke event: psychometric testing of a questionnaire.

AIM: This paper reports a study to validate and test the reliability of a questionnaire constructed to evaluate the life situation of spouses after their partners have had a stroke. BACKGROUND: Stroke is a disease with great consequences for survivors and their families. Most survivors return home after the hospitalization and rehabilitation due to the stroke event. Relatives, primarily spouses, often feel obligated to care for the survivor at home, providing emotional support or assisting the person in activities of daily living. More specific information is needed about the spouse's life situation after the stroke event in order to develop effective supportive strategies. METHODS: Psychometric testing of the Life Situation Questionnaire was undertaken with 99 spouses of stroke survivors. The 13-item questionnaire consists of four subscales: 'Worries', 'Powerlessness', 'Personal adjustment' and 'Social isolation'. RESULTS: Item analysis showed that each item correlated with its own subscale (r = 0.63-0.78). The instrument had high internal consistency, with Cronbach's alphas of 0.80-0.86 and reasonable high congruent validity when correlated with a Wellbeing instrument, with a correlation of 0.59 (P = 0.001). Exploratory factor analysis confirmed the subscales, accounting for 77% of the variance. CONCLUSION: The Life Situation Questionnaire is a valid and reliable instrument, and could serve as an assessment tool after a stroke event to identify family caregivers who have problems in their life situations and need support from healthcare services.

The impact of a nurse-led support and education programme for spouses of stroke patients: a randomized controlled trial.

AIMS AND OBJECTIVES: The aim of the present study was to determine the impact of a nurse-led support and education programme for improving the spouses' perceived general quality of life, life situation, general well-being and health state. BACKGROUND: Stroke is a disease with great consequences for the patients and their families. The spouses often feel obligated to care for the patient, providing psychological and physical support and having to cope with the patient's physical and cognitive impairments. This might lead to increased problems, as family members struggle to adapt to their new roles and responsibilities. DESIGN AND METHODS: Longitudinal, randomized controlled trial. One hundred spouses were randomly assigned to intervention or control groups, 50 in each group. The intervention group participated in a support and education programme, six times during six months, led by stroke specialist nurses. Both groups were followed for 12 months. RESULTS: No significant differences were found, between intervention and control groups, over time. In the sub analyses, we found that the group attending 5-6 times had a significant decrease in negative well-being and increased quality of life over time, while the group attending fewer times had a significant decrease in positive well-being and health state, similar to the control group, which also had a significant decrease in negative and general well-being. CONCLUSIONS: A support and education programme might have a positive effect on spouses' well-being, on condition that they attend at least five times. RELEVANCE TO CLINICAL PRACTICE: To facilitate the spouses' role as informal caregivers to the stroke patients, further development of the support and education programme used in the present study is needed, including empowerment approach and implementation of coping strategies.