A multicentre randomized controlled trial of an empowerment-inspired intervention for adolescents starting continuous subcutaneous insulin infusion : a study protocol

Background. Continuous subcutaneous insulin infusion (CSII) treatment among children with type 1 diabetes is increasing in Sweden. However, studies evaluating glycaemic control in children using CSII show inconsistent results. Omitting bolus insulin doses using CSII may cause reduced glycaemic control among adolescents. The distribution of responsibility for diabetes self-management between children and parents is often unclear and needs clarification. There is much published support for continued parental involvement and shared diabetes management during adolescence. Guided Self-Determination (GSD) is an empowerment-based, person-centred, reflection and problem solving method intended to guide the patient to become self-sufficient and develop life skills for managing difficulties in diabetes self-management. This method has been adapted for adolescents and parents as Guided Self-Determination-Young (GSD-Y). This study aims to evaluate the effect of an intervention with GSD-Y in groups of adolescents starting on insulin pumps and their parents on diabetes-related family conflicts, perceived health and quality of life (QoL), and metabolic control. Here, we describe the protocol and plans for study enrolment. Methods. This study is designed as a randomized, controlled, prospective, multicentre study. Eighty patients between 12-18 years of age who are planning to start CSII will be included. All adolescents and their parents will receive standard insulin pump training. The education intervention will be conducted when CSII is to be started and at four appointments in the first 4 months after starting CSII. The primary outcome is haemoglobin A1c levels. Secondary outcomes are perceived health and QoL, frequency of blood glucose self-monitoring and bolus doses, and usage of carbohydrate counting. The following instruments will be used to evaluate perceived health and QoL: Disabkids, 'Check your health', the Diabetes Family Conflict Scale and the Swedish Diabetes Empowerment Scale. Outcomes will be evaluated within and between groups by comparing data at baseline, and at 6 and 12 months after starting treatment. Results and discussion. In this study, we will assess the effect of starting an insulin pump together with the model of Guided Self-Determination to determine whether this approach leads to retention of improved glycaemic control, QoL, responsibility distribution and reduced diabetes-related conflicts in the family. Trial registration: Current controlled trials: ISRCTN22444034

The quality of the physical environment and its association with activities and well-being among older people in residential care facilities

The physical environment can influence older people’s health and well-being, and is often mentioned as being an important factor for person-centred care. Due to high levels of frail health, many older people spend a majority of their time within care facilities and depend on the physical environment for support in their daily life. However, the quality of the physical environment is rarely evaluated, and knowledge is sparse in terms of how well the environment meets the needs of older people. This is partly due to the lack of valid and reliable instruments that could provide important information on environmental quality. Aim: The aim of this thesis was to study the quality of the physical environment in Swedish care facilities for older people, and how it relates to residents’ activities and well-being. Methods: The thesis comprises four papers where both qualitative and quantitative methods were used. Study I involved the translation and adaptation of the Sheffield Care Environment Assessment Matrix (SCEAM) into a Swedish version (S-SCEAM). Several methods were used including forward and backward translation, test of validity via expert consultation and reliability tests. In Study II, S-SCEAM was used to assess the quality of the environment, and descriptive data were collected from 20 purposively sampled residential care facilities (RCFs). Study III was a comparative case study conducted at two RCFs using observations, interviews and S-SCEAM to examine how the physical environment relates to older people’s activities and interactions. In study IV, multilevel modeling was used to determine the association between the quality of the physical environment and the psychological and social well-being of older people living in RCFs. The data in the thesis were analysed using qualitative content analysis, and descriptive, bivariate and multilevel statistics. Results: A specific result was the production of the Swedish version of SCEAM. The instrument contains 210 items structured into eight domains reflecting the needs of older people. When using S-SCEAM, the results showed a substantial variation in the quality of the physical environment between and within RCFs. In general, private apartments and dining areas had high quality, whereas overall building layout and outdoor areas had lower quality. Also, older people’s safety was supported in the majority of facilities, whereas cognitive support and privacy had lower quality. Further, the results showed that environmental quality in terms of cognitive support was associated with residents’ social well-being. Specific environmental features, such as building design and space size, were also noted, through observation, as influencing residents’ activities, and several barriers were found that seemed to restrict residents’ full use of the environment. Conclusions: This thesis contributes to the growing evidence-based design field. The S-SCEAM can be used in future research on the association between the environment and people’s health and well-being. The instrument could also serve as a guide in the planning and design process of new RCFs.

The effectiveness of proactive telephone support provided to breastfeeding mothers of preterm infants : study protocol for a randomized controlled trial

Background: Although breast milk has numerous benefits for infants' development, with greater effects in those born preterm (at < 37 gestational weeks), mothers of preterm infants have shorter breastfeeding duration than mothers of term infants. One of the explanations proposed is the difficulties in the transition from a Neonatal Intensive Care Unit (NICU) to the home environment. A person-centred proactive telephone support intervention after discharge from NICU is expected to promote mothers' sense of trust in their own capacity and thereby facilitate breastfeeding. Methods/design: A multicentre randomized controlled trial has been designed to evaluate the effectiveness and cost-effectiveness of person-centred proactive telephone support on breastfeeding outcomes for mothers of preterm infants. Participating mothers will be randomized to either an intervention group or control group. In the intervention group person-centred proactive telephone support will be provided, in which the support team phones the mother daily for up to 14 days after hospital discharge. In the control group, mothers are offered a person-centred reactive support where mothers can phone the breastfeeding support team up to day 14 after hospital discharge. The intervention group will also be offered the same reactive telephone support as the control group. A stratified block randomization will be used; group allocation will be by high or low socioeconomic status and by NICU. Recruitment will be performed continuously until 1116 mothers (I: 558 C: 558) have been included. Primary outcome: proportion of mothers exclusively breastfeeding at eight weeks after discharge. Secondary outcomes: proportion of breastfeeding (exclusive, partial, none and method of feeding), mothers satisfaction with breastfeeding, attachment, stress and quality of life in mothers/partners at eight weeks after hospital discharge and at six months postnatal age. Data will be collected by researchers blind to group allocation for the primary outcome. A qualitative evaluation of experiences of receiving/providing the intervention will also be undertaken with mothers and staff. Discussion: This paper presents the rationale, study design and protocol for a RCT providing person-centred proactive telephone support to mothers of preterm infants. Furthermore, with a health economic evaluation, the cost-effectiveness of the intervention will be assessed. Trial registration: NCT01806480

Från ord till handling : En kvalitativ studie om värdegrund och socialt innehåll för äldre på särskilt boende

Socialstyrelsens brukarundersökning visar att äldre som bor på särskilt boende är mest missnöjda med de aktiviteter och den sociala samvaron som verksamheten erbjuder. Äldreomsorgen bygger på den nationella värdegrunden som innefattar att den äldre ska få leva ett värdigt liv och känna välbefinnande, men det är inte klart hur denna värdegrund påverkar personalens arbetssätt eller de sociala aktiviteter som erbjuds. Vår studie angriper denna fråga. Fem särskilda boenden var representerade både från kommunala och privata vårdgivare i två olika kommuner. Semistrukturerade intervjuer genomfördes med de särskilda boendes enhetschefer, som sedan transkriberades och tematiskt analyserades. Vårt resultat tyder på att den nationella värdegrunden inom äldreomsorgen tolkas olika på alla de särskilda boendena. Alla enhetschefer la stor vikt på personcentrerad vård, men trots det så erbjöd man liknade sociala aktiviteter ofta då som gruppaktivitet. Resultaten diskuterar vi med hänvisning till Aktivitetsteorin och Gerotranscendenceteorin.

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.

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.

Sjuksköterskans upplevelse av att ge personcentrerad vård till personer med demenssjukdom : En litteraturstudie

Background: Dementia impairs cognitive functions, such as memory and speech, changing a person’s life forever. Providing person-centred care to these persons intend to retain their identities, dignity and autonomy. Such care demands time, devotion and good knowledge of the caring nurse. Dementia is expected to increase in the future and therefore nurses will have to face new challenges. Aim: To describe nurses’ experience of providing person-centred care for people with dementia. Method: A literature review of 15 articles, published between 2009-2016, that have been read and analysed through content-analysis. Results: Nurses experience a positive change in their attitudes, when providing person-centred care to people with dementia, as they gained better understanding of their patients’ dignity and integrity. Education, training and support from management were seen as key factors for providing up-to-date care. Time was viewed as a hindrance for person-centred care, and often led to nurses prioritizing other routines. Two common outcomes of person-centred care were increased satisfaction as well as emotional burnout. Conclusion: Since dementia is increasing and nurses find person-centred care time-consuming, there is a risk of such care becoming poor. To prevent this nurses need good leadership and education.

Personcentrerad omvårdnad vid demens : En deskriptiv kvalitativ studie

Bakgrund: Demens är en av de stora folksjukdomarna och vårdpersonal möter dessa personer med demens både inom akutsjukvård och kommunal vård. På slutet av sitt liv bor de flesta personer som drabbats av demens på institution. Personcentrerad vård beskrivs vara gynnsamt i vården av personer med demens och personalens erfarenhet av detta har stor betydelse. Syfte: Syftet var att studera sjuksköterskors, enhetschefers och undersköterskors erfarenhet av personcentrerad omvårdnad inom kommunal hälso och sjukvård. Metod: Designen var en deskriptiv studie med kvalitativ ansats som har analyserats med hjälp av en induktiv innehållsanalys. Deltagarna som inkluderades i intervjustudien kom från samma kommun. Det var tio personer och bestod av fyra sjuksköterskor, fyra undersköterskor och två enhetschefer. De valdes ut av verksamhetschefen där inklusionskriteriet var att ha arbetat med personer med demens i minst fem år. Resultat: I resultatet framkom fyra kategorier och 12 subkategorier. Personcentrerad omvårdnad ansågs relevant i samband med god omvårdnad av personer med demens. I arbetet med personcentrerad vård var fokus att; anpassa sig till personen med demens, att se till dennes identitet och personlighet. Vidare lades vikt vid anhörigas deltagande, bemötande och ett gemensamt arbetssätt, vilket bestod av att identifiera behov och se personen bakom sjukdomen. Slutsats: Resultatet visade att de flesta intervjupersonerna hade liknande erfarenheter i att arbeta med personer med demens. Det framkom i studien att bemötandet hade stor betydelse i omvårdnaden. Fokus i personcentrerad omvårdnad var de redovisade kategorierna och dess innehåll och ansågs betydelsefull och nödvändig för att personer med demens får ett så bra och värdigt liv som möjligt efter sjukdomsdebuten.