Facilitators and barriers to applying a national quality registry for quality improvement in stroke care

BACKGROUND: National quality registries (NQRs) purportedly facilitate quality improvement, while neither the extent nor the mechanisms of such a relationship are fully known. The aim of this case study is to describe the experiences of local stakeholders to determine those elements that facilitate and hinder clinical quality improvement in relation to participation in a well-known and established NQR on stroke in Sweden. METHODS: A strategic sample was drawn of 8 hospitals in 4 county councils, representing a variety of settings and outcomes according to the NQR's criteria. Semi-structured telephone interviews were conducted with 25 managers, physicians in charge of the Riks-Stroke, and registered nurses registering local data at the hospitals. Interviews, including aspects of barriers and facilitators within the NQR and the local context, were analysed with content analysis. RESULTS: An NQR can provide vital aspects for facilitating evidence-based practice, for example, local data drawn from national guidelines which can be used for comparisons over time within the organisation or with other hospitals. Major effort is required to ensure that data entries are accurate and valid, and thus the trustworthiness of local data output competes with resources needed for everyday clinical stroke care and quality improvement initiatives. Local stakeholders with knowledge of and interest in both the medical area (in this case stroke) and quality improvement can apply the NQR data to effectively initiate, carry out, and evaluate quality improvement, if supported by managers and co-workers, a common stroke care process and an operational management system that embraces and engages with the NQR data. CONCLUSION: While quality registries are assumed to support adherence to evidence-based guidelines around the world, this study proposes that a NQR can facilitate improvement of care but neither the registry itself nor the reporting of data initiates quality improvement. Rather, the local and general evidence provided by the NQR must be considered relevant and must be applied in the local context. Further, the quality improvement process needs to be facilitated by stakeholders collaborating within and outside the context, who know how to initiate, perform, and evaluate quality improvement, and who have the resources to do so.

Internal validity of the Swedish Maternal Health Care Register

Background: The Swedish Maternal Health Care Register (MHCR) is a national quality register that has been collecting pregnancy, delivery, and postpartum data since 1999. A substantial revision of the MHCR resulted in a Web-based version of the register in 2010. Although MHCR provides data for health care services and research, the validity of the MHCR data has not been evaluated. This study investigated degree of coverage and internal validity of specific variables in the MHCR and identified possible systematic errors. Methods: This cross-sectional observational study compared pregnancy and delivery data in medical records with corresponding data in the MHCR. The medical record was considered the gold standard. The medical records from nine Swedish hospitals were selected for data extraction. This study compared data from 878 women registered in both medical records and in the MHCR. To evaluate the quality of the initial data extraction, a second data extraction of 150 medical records was performed. Statistical analyses were performed for degree of coverage, agreement and correlation of data, and sensitivity and specificity. Results: Degree of coverage of specified variables in the MHCR varied from 90.0% to 100%. Identical information in both medical records and the MHCR ranged from 71.4% to 99.7%. For more than half of the investigated variables, 95% or more of the information was identical. Sensitivity and specificity were analysed for binary variables. Probable systematic errors were identified for two variables. Conclusions: When comparing data from medical records and data registered in the MHCR, most variables in the MHCR demonstrated good to very good degree of coverage, agreement, and internal validity. Hence, data from the MHCR may be regarded as reliable for research as well as for evaluating, planning, and decision-making with respect to Swedish maternal health care services.

Kangaroo Mother Care in a Mozambican perinatal ward : a clinical case study

Kangaroo mother care (KMC) was first introduced in Mozambique in 1984. The aim of this study was to describe Mozambican mothers’ experiences of going through admission, passing from an intensive care ward to a nursery ward with their premature baby, undergoing KMC training before early discharge. A clinical case study was conducted, involving naturalistic observations and a face-to-face interview with 41 mothers participating to complete a questionnaire. Descriptive statistics and manifest content analysis were used in this study. The results show that the mothers were of low socio-economic standing and felt that they did not have enough information on KMC. The hierarchical organization within the hospital setting as well as communalistic behaviours influenced the mothers’ support of KMC, including information, communication, relationships and actions. The conclusion is that there is an important challenge for trained neonatal nurses to improve the guidelines for KMC and to empower mothers and their families to adopt KMC.

Life situations and the care burden for stroke pa­tients and their informal caregivers in a prospective cohort study

Background. The purpose of this study was to analyse whether the parallel life situation between stroke patients and their informal caregivers (dyads) shown in cross-sectional studies prevails also in a longitudinal perspective. Methods. A total of 377 Swedish stroke patients, aged ‡65 years, and their 268 informal caregivers were followed from hospital admission and one year on. Analyses were based on patient interviews, functional ability (MMSE) score, Nottingham Health Profile (NHP) score, Hospital Anxiety and Depression (HAD) score, self-rated health score, and the Gothenburg Quality of Life (GQL) activity score. Similar information was obtained by postal questionnaires from informal caregivers, also including information on the nature and amount of assistance provided and on Caregiver Burden (CB) score. Results. Before index admission informal caregivers provided care on average 5 h per week and after discharge 11 h per week (P < 0.0001). Support volume was associated with patient sex (more for men), low patient’s functional ability, low received municipal social service support, closeness of patient–caregiver relation, and short distance to patient’s home. Significant positive associations within the dyads were found for HAD anxiety score (P < 0.0001), total NHP score (P < 0.0001), and GQL activity score (P < 0.0001) after adjustment for patient’s age, sex, functional ability, and patient–caregiver relationship. CB score increased with amount of informal caregiver support, patient’s age, and with low functional ability and low amount of municipal social service support. All these associations were constant across time. Conclusions. There was an association within the dyads regarding anxiety score, NHP score, and activity score. CB score was generally high.

Translating and testing the Alberta Context Tool for use among nurses in Swedish elder care

Background. There is emerging evidence that context is important for successful transfer of research knowledge into health care practice. The Alberta Context Tool (ACT) is a Canadian developed research-based instrument that assesses 10 modifiable concepts of organizational context considered important for health care professionals’ use of evidence. Swedish and Canadian health care have similarities in terms of organisational and professional aspects, suggesting that the ACT could be used for measuring context in Sweden. This paper reports on the translation of the ACT to Swedish and a testing of preliminary aspects of its validity, acceptability and reliability in Swedish elder care. Methods. The ACT was translated into Swedish and back-translated into English before being pilot tested in ten elder care facilities for response processes validity, acceptability and reliability (Cronbach’s alpha). Subsequently, further modification was performed. Results. In the pilot test, the nurses found the questions easy to respond to (52%) and relevant (65%), yet the questions’ clarity were mainly considered ‘neither clear nor unclear’ (52%). Missing data varied between 0 (0%) and 19 (12%) per item, the most common being 1 missing case per item (15 items). Internal consistency (Cronbach’s Alpha > .70) was reached for 5 out of 8 contextual concepts. Translation and back translation identified 21 linguistic- and semantic related issues and 3 context related deviations, resolved by developers and translators. Conclusion. Modifying an instrument is a detailed process, requiring time and consideration of the linguistic and semantic aspects of the instrument, and understanding of the context where the instrument was developed and where it is to be applied. A team, including the instrument’s developers, translators, and researchers is necessary to ensure a valid translation. This study suggests preliminary validity, reliability and acceptability evidence for the ACT when used with nurses in Swedish elder care.

Unfulfilled rehabilitation needs and dissatisfaction with care 12 months after a stroke : an explorative observational study

BACKGROUND: People who have suffered a stroke commonly report unfulfilled need for rehabilitation. Using a model of patient satisfaction, we examined characteristics in individuals that at 3 months after stroke predicted, or at 12 months were associated with unmet need for rehabilitation or dissatisfaction with health care services at 12 months after stroke. METHODS: The participants (n = 175) received care at the stroke units at the Karolinska University Hospital, Sweden. The dependent variables "unfulfilled needs for rehabilitation" and "dissatisfaction with care" were collected using a questionnaire. Stroke severity, domains of the Stroke Impact Scale (SIS), the Sense of Coherence scale (SOC) and socio demographic factors were used as independent variables in four logistic regression analyses. RESULTS: Unfulfilled needs for rehabilitation at 12 months were predicted by strength (SIS) (odds ratio (OR) 7.05) at three months, and associated with hand function (SIS) (OR 4.38) and poor self-rated recovery (SIS) (OR 2.46) at 12 months. Dissatisfaction with care was predicted by SOC (OR 4.18) and participation (SIS) (OR 3.78), and associated with SOC (OR 3.63) and strength (SIS) (OR 3.08). CONCLUSIONS: Thirty-three percent of the participants reported unmet needs for rehabilitation and fourteen percent were dissatisfied with the care received. In order to attend to rehabilitation needs when they arise, rehabilitation services may need to be more flexible in terms of when rehabilitation is provided. Long term services with scheduled re-assessments and with more emphasis on understanding the experiences of both the patients and their social networks might better be able to provide services that attend to patients' needs and aid peoples' reorientation; this would apply particularly to those with poor coping capacity.

What is important for you? A qualitative interview study of living with diabetes and experiences of diabetes care to establish a basis for a tailored Patient-Reported Outcome Measure for the Swedish National Diabetes Register

OBJECTIVES: There is a growing emphasis on the perspective of individuals living with diabetes and the need for a more person-centred diabetes care. At present, the Swedish National Diabetes Register (NDR) lacks patient-reported outcome measures (PROMs) based on the perspective of the patient. As a basis for a new PROM, the aim of this study was to describe important aspects in life for adult individuals with diabetes. DESIGN: Semistructured qualitative interviews analysed using content analysis. SETTING: Hospital-based outpatient clinics and primary healthcare clinics in Sweden. PARTICIPANTS: 29 adults with type 1 diabetes mellitus (DM) (n=15) and type 2 DM (n=14). INCLUSION CRITERIA: Swedish adults (≥18 years) living with type 1 DM or type 2 DM (duration ≥5 years) able to describe their situation in Swedish. Purposive sampling generated heterogeneous characteristics. RESULTS: To live a good life with diabetes is demanding for the individual, but experienced barriers can be eased by support from others in the personal sphere, and by professional support from diabetes care. Diabetes care was a crucial resource to nurture the individual's ability and knowledge to manage diabetes, and to facilitate life with diabetes by supplying support, guidance, medical treatment and technical devices tailored to individual needs. The analysis resulted in the overarching theme 'To live a good life with diabetes' constituting the two main categories 'How I feel and how things are going with my diabetes' and 'Support from diabetes care in managing diabetes' including five different categories. CONCLUSIONS: Common aspects were identified including the experience of living with diabetes and support from diabetes care. These will be used to establish a basis for a tailored PROM for the NDR.

Unlicensed personnel administering medications to older persons living at home : a challenge for social and care services

BACKGROUND: Administration of medication to care recipients is delegated to home-care assistants working in the municipal social care, alongside responsibility for providing personal assistance for older people. Home-care assistants have practical administration skills, but lack formal medical knowledge. AIM: The aim of this study was to explore how home-care assistants perceive administration of medication to older people living at home, as delegated to them in the context of social care. METHODS: Four focus groups consisting of 19 home-care assistants were conducted. Data were analysed using qualitative content analysis. RESULTS: According to home-care assistants, health and social care depends on delegation arrangements to function effectively, but in the first place it relieves a burden for district nurses. Even when the delegation had expired, administration of medication continued, placing the statutes of regulation in a subordinate position. There was low awareness among home-care assistants about the content of the statutes of delegation. Accepting delegation to administer medications has become an implicit prerequisite for social care work in the municipality. CONCLUSIONS: Accepting the delegation to administer medication was inevitable and routine. In practice, the regulating statute is made subordinate and consequently patient safety can be threatened. The organisation of health and social care relies on the delegation arrangement to meet the needs of a growing number of older home-care recipients. IMPLICATIONS FOR PRACTICE: This is a crucial task which management within both the healthcare professions and municipal social care needs to address, to bridge the gap between statutes and practice, to create arenas for mutual collaboration in the care recipients' best interest and to ensure patient safety.

Older people's experience of utilisation and administration of medicines in a health- and social care context

BACKGROUND: People living at home who lack ability to manage their medicine are entitled to assistance to improve adherence provided by a home care assistant employed by social care. AIM: The aim was to describe how older people with chronic diseases, living at home, experience the use and assistance of administration of medicines in the context of social care. DESIGN: A qualitative descriptive study. METHODS: Ten participants (age 65+) living at home were interviewed in the participants' own homes. Latent content analysis was used. FINDINGS: The assistance eases daily life with regard to practical matters and increases adherence to a medicine regimen. There were mixed feelings about being dependent on assistance; it interferes with self-sufficiency at a time of health transition. Participants were balancing empowerment and a dubious perception of the home care assistants' knowledge of medicine and safety. Physicians' and district nurses' professional knowledge was a safety guarantee for the medicine process. CONCLUSIONS: Assistance eases daily life and medicine regimen adherence. Dependence on assistance may affect self-sufficiency. Perceived safety varied relating to home care assistants' knowledge of medicine. RELEVANCE TO CLINICAL PRACTICE: A well-functioning medicine assistance is crucial to enable older people to remain at home. A person-centred approach to health- and social care delivery is efficient and improve outcome for the recipient of care.

Reactions of Persons with Dementia to Caregivers Singing in Morning Care Situations

Music therapeutic caregiving', when caregivers sing for or together with persons with severe dementia during care situations, has been suggested as a way to reduce problematic behaviors in dementia care. The present study implemented this technique as an intervention in dementia care. Six caregivers participated in group interviews about their experiences of morning care situations without and with'Music therapeutic caregiving'. Through a qualitative content analysis two themes emerged.'Being in a different reality' was based on'usual' morning care situations. The caregivers' experienced the persons with dementia as absent-minded; communication and cooperation were difficult. The second theme,'Being present', was based on morning care situations with the intervention. The caregivers described communication as enhanced; the persons with dementia expressed themselves more appropriately, making cooperation possible. The results indicate that'Music therapeutic caregiving' might lead to a more positive experience of the person with dementia and seems to increase receptivity to caregiving.