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.

Evaluation of communication behavior in persons with dementia during caregivers’ singing

The number of persons with dementia (PWD) is increasing rapidly worldwide. Cognitive impairments and communication difficulties are common among PWD. Therefore, gaining mutual togetherness in caring relation between PWD and their caregivers is important. This study was to investigate the effects of music therapeutic care (MTC) during morning care situations on improving verbal and nonverbal communication behaviors in people with dementia. An observation study with 10 PWD participating. Videotaped interactions (VIO) between PWD and their caregivers were conducted during eight weekly sessions, four recordings consisted of usual morning care and four recordings were of morning care with MTC intervention. The Verbal and Nonverbal Interaction Scale was used to analyze the recorded interactions at a later time. The unsociable verbal variable Cursing decreased significantly (P=.037) during MTC when compared with the baseline measurement. A significant (P=.000) reduction was observed for the unsociable nonverbal variable Does not respond to question. MTC significantly (P=.01) increased the mean score for the sociable nonverbal variable – Calm – relaxed. For sociable verbal communication, significant differences were observed for the variables Use coherent communication (P=.012), Use relevant communication (P=.009), Responds to questions (P=.000), Humming (P=.004), Singing (P=.000). MTC during morning care situations can be an effective non-pharmacological treatment, as well as nursing intervention in order to improve sociable communication behaviors, as well as reduce unsociable communication behaviors of PWDs

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.

A therapy dog's impact on daytime activity and night-time sleep for older persons with Alzheimer's disease : a case study

Background: Animal-Assisted Therapy using dogs have been described as having a calming effect, decrease sundowning and blood-pressure in persons with Alzheimer’s disease. The aim was to investigate how continuous and scheduled visits by a prescribed therapy dog affected daytime and night-time sleep for persons with Alzheimer’s disease. Methods: In this case study, registration of activity and sleep curves was conducted from five persons with moderate to severe Alzheimer’s disease living at a nursing home, over a period of 16 weeks using an Actiwatch. Data was analysed with descriptive statistics. Result: The study shows no clear pattern of effect on individual persons daytime activity and sleep when encounter with a therapy dog, but instead points to a great variety of possible different effects that brings an increased activity at different time points, for example during night-time sleep. Conclusions: Effects from the use of a Animal-Assisted Therapy with a dog in the care of persons with Alzheimer’s disease needs to be further investigated and analysed from a personcentred view including both daytime and nightime activities.

Can therapy dogs evoke awareness of one's past and present life in persons with Alzheimer's disease?

BACKGROUND: Persons with Alzheimer's disease (AD) sometimes express themselves through behaviours that are difficult to manage for themselves and their caregivers, and to minimise these symptoms alternative methods are recommended. For some time now, animals have been introduced in different ways into the environment of persons with dementia. Animal-Assisted Therapy (AAT) includes prescribed therapy dogs visiting the person with dementia for a specific purpose. AIM: This study aims to illuminate the meaning of the lived experience of encounters with a therapy dog for persons with Alzheimer's disease. METHOD: Video recorded sessions were conducted for each visit of the dog and its handler to a person with AD (10 times/person). The observations have a life-world approach and were transcribed and analysed using a phenomenological hermeneutical approach. RESULTS: The result shows a main theme 'Being aware of one's past and present existence', meaning to connect with one's senses and memories and to reflect upon these with the dog. The time spent with the dog shows the person recounting memories and feelings, and enables an opportunity to reach the person on a cognitive level. CONCLUSIONS: The present study may contribute to health care research and provide knowledge about the use of trained therapy dogs in the care of older persons with AD in a way that might increase quality of life and well-being in persons with dementia. IMPLICATIONS FOR PRACTICE: The study might be useful for caregivers and dog handlers in the care of older persons with dementia.

Palliativ omvårdnad i hemmet - de anhörigas upplevelse av delaktighet : En litteraturstudie

Bakgrund: Tack vare en mer avancerad hemsjukvård har den palliativa vården utvecklats, vilket gör det möjligt för fler människor att dö i det egna hemmet. Palliativ vård handlar inte endast om patienten, utan involverar även de anhöriga. Det övergripande målet för palliativ vård är att patienten och den anhörige upplever god livskvalitet till livets slut. De anhörigas närvaro är betydelsefull, inte endast för patienten utan även för vårdarna. De anhöriga befinner sig i en mycket påfrestande situation och det är viktigt att vårdare har kunskap om vad de anhöriga upplever och hur man kan stötta de anhöriga i deras situation. Syfte: Att belysa anhörigas upplevelser av delaktighet i samband med palliativ omvårdnad i hemmet. Metod: En litteraturstudie baserad på 11 vetenskapliga artiklar av kvalitativ ansats. Resultat: 2 kategorier framkom ur studien. Delaktighet ger anhöriga upplevelsen av att få vardagen att fungera och Anhörigas delaktighet bidrar till personcentrerad vård. Det blev en drastisk förändring i livet för de anhöriga. Det var inte bara hemmet som förändras i och med all teknisk utrustning och hjälpmedel som patienten behövde. De anhörigas livsförändringar gjorde att det sociala livet fick lida. Tankar kring existentiella frågor dök upp när man levde så nära inpå döden och det var viktigt för de anhöriga att vårdarna kunde se och lyssna även på deras behov. En god kommunikation var viktigt för att de anhöriga skulle våga prata om sina egna behov, tankar och åsikter. Slutsats: Det viktigaste för de anhöriga var att kommunikationen, stödet och informationen fungerade mellan alla parter. Fungerade dessa delar så byggdes en god relation mellan parterna och man fick en god tillit till vården. Samarbetet blev bättre och de anhöriga kände sig som en i teamet.