Caring in Community Care

Research focus

The group’s research encompasses community care in the context of ageing, e-Health and mental health from a caring science and public health perspective. Social support including care by informal or family caregivers is a crucial and integral component of care of older persons in a society. The focus of the research group is to address multidimensional challenges of ageing globally, including support to family caregivers, their health and support using e-health solutions. Use of m-Health in community settings, e.g., health and social care services for older persons in primary care setting is a major research focus of the group.

Ageing and family caregiving: Global population is ageing as never before. Human ageing is complex with multidimensional health challenges of older persons. Organisation of primary health care is set up at different levels in Sweden, such as the county and municipality level, to meet the needs of older persons in the community.  Social support including care by informal or family caregivers is a crucial and integral component of care of older persons in a society. The focus of the research group is to address multidimensional challenges of ageing including support to family caregivers, their health and support through mHealth solutions.

e-Health in community care: Given the rapidly increasing digital literacy in Sweden and globally, e-Health offers a practical platform for health care professionals, by using electronic processes and communication, in providing timely support to populations across the life span including adolescents, youth, young and older adults and as well as family caregivers. Use of e-Health in community settings in both urban and rural areas, e.g., care services for older persons at municipalities, schools, youth clinics, and particularly from the perspective of health promotion and disease prevention is an evolving research focus of the group.

The research group Caring in Community Care consists of researchers in various stages of their career. It is a multi-disciplinary group representing, geriatric nursing, public health, gerontology, family nursing, psychology and palliative care.

Ongoing projects

Care of Family Caregivers of Persons with Dementia (CAFCA): Support through Mobile Application to Alleviate Stress and Improve Quality of Life

[Research team: Zarina N Kabir (PI), Hanne Konradsen, Cecilia Moberg, Åsa Dorell, Aber Sharon Kagwa, Sofia Vikström]

The aim of this study is to assess the effectiveness of providing professional support through a mobile application (app) in reducing stress depressive symptoms, and loneliness thus improving quality of life of family caregivers of persons with dementia living at home in Sweden. Financed by the Kamprad Foundation and Strategic Research Program in Health Care Sciences (SFO-V), this intervention study is conducted in urban and rural parts of Sweden in collaboration with Umeå University and Royal Institute of Technology, Stockholm.

GEDOC: Receiving care for Covid-19 at a Geriatric Clinic – Experiences of Patients and relatives

[Research Team: Ewa Stenwall, Anne-Marie Boström och Nana Waldréus]

The overall purpose of the GEDOC project is to follow up the experiences of older patients in hospital care during Covid-19 pandemic. The project will also describe how their relatives experienced the situation during this period.

Symptom Experiences in Persons with Heart Failure 

[PI: Nana Waldréus] 

Thirst in persons with heart failure- an international study

In collaboration with several countries worldwide, the Thirst Distress Scale for patients with Heart Failure (TDS-HF) has been translated into 20 different languages. Data will be collected on thirst and factors related with thirst.

Thirst, appetite, fatigue, symptom burden and quality of life in older persons with heart failure

A project in collaboration with heart failure centres in Sweden is conducted to describe thirst, appetite, symptom burden, symptom clusters and health-related quality of life in persons with heart failure. One of the studies focuses specifically on fatigue. An intervention study will be planned to reduce fatigue as part of doctoral education (NW co-supervisor).

Fluid intake in patients with heart failure

As part of a planned doctoral project, studies will describe fluid intake in patients with heart failure, thirst experience and an intervention study will be planned to determine fluid intake on cardiac function, physical capacity, thirst and quality of life (NW co-supervisor).

Self-Care in Persons with Heart Failure

[PI: Nana Waldréus]

The purpose of the studies is to describe self care in older, frail persons with heart failure using both quantitative and qualitative methods.

Telephone delivered psychoeducational intervention: a model for reduction of psychophysical burden among homebound dementia caregivers in east and west coasts of Malaysia

[Research Team at KI: Zarina Nahar Kabir (Co-PI), Åsa Craftman, Marie Tyrell]

This study will assess the efficacy of the telephone delivered psychoeducational intervention by health care professionals on reduction of caregiving burden, depressive symptoms, and enhancing caregiving self-efficacy and caregiver’s quality of life of family caregivers to persons with dementia. A single-blinded randomized controlled trial with family caregivers of dementia patients is being conducted in east and west coasts of Malaysia. The psychoeducational intervention has been adopted to the socio-cultural context of Malaysia and delivered by the health care professionals over the phone over a period of 3 months.

SOPHI- Selfcare in Older Persons with Heart failure Intervention

[PI: Nana Waldréus] 

The overall purpose of the SOPHI project is to evaluate the effects of a self-care program with individualized physical exercise in combination with dietary advice and symptom management for older, frail persons with heart failure. The project is an interprofessional teamwork and collaboration takes place between Karolinska University Hospital and Karolinska Institutet.

Future care for older adults in home care and care home – associations between home care staff perceived job strain and older persons’ experiences of the quality of home care services

Research team: Anne-Marie Boström (PI), Zarina Nahar Kabir, Nana Waldréus]

This project investigates the associations between perceived job strain of home care staff including work environment and older persons’ experiences of the quality of home care services provided by staff. A survey was conducted regarding job strain and work environment among home care staff in 5 municipalities. From these five municipalities data is complemented from the Brukarundersökning – the User survey conducted annually by the National Board of Health and Social Welfare in Sweden.

Perceived symptoms and coping strategies in carers to people with Lewy Body Dementia and Alzheimer´s disease

[PI: Ewa Stenwall]

The aim of this study is to investigate and describe the experiences of carers to people with Lewy Body Dementia and Alzheimer´s disease to identify similarities and differences between the symptoms and chosen coping strategies. The data collection is completed. Data analyses and writing of publications are ongoing.

Implementation of Evidence Based Knowledge in Home – Care

[Anne-Marie Boström (PI), Ewa Stenwall]

The goal of this project is to implement and evaluate a model (the KISAM model) for a strategic framework for promoting competence in continuing translation of evidence-based knowledge to improve the quality of care provided to persons in home care. The project is targeted to identify knowledge gap in care providers’ competence for practicing evidence-based knowledge translation on a routine basis. This project is investigating a strategic framework for the practice of translating research based knowledge into care for older adults. The data collection is finished. Data analyses and writing of publications are ongoing. 

Older Persons’ Exercise and Nutrition (OPEN) study

[PI: Anne-Marie Boström]

The aim of the OPEN study is to evaluate the effects of the sit-to-stand exercise, in combination with a protein-rich nutritional supplement, on physical function and independence in frail older persons living in nursing homes. The older person’s perceptions and experiences of the intervention and the staff’s experiences of supporting the older person to complete the intervention will also be explored. The data collection is completed. Data analyses and dissemination activities are ongoing. The study protocol for the OPEN study was published in 2018.

Rapid Response Research on COVID19 in Bangladesh

[PI at KI: Zarina N Kabir]

The study is conducted in Bangladesh and aims to investigate i) the socio-demographic factors associated with COVID19 infections; ii) post-recovery consequence of COVID19 on mental and physical health of patients; iii) knowledge, attitude and practice in relation to Coronavirus and COVID19 among family members of COVID19 patients and frontline health workers in Bangladesh. The project is result of a collaboration with a humanitarian organisation in Bangladesh, Sajida Foundation 

Assessment of Long COVID among previously hospitalized cases with COVID like symptoms based on clinical and biochemical evidence in Bangladesh: A follow up study

[PI at KI: Zarina N Kabir]

To define and assess the burden of ‘Long COVID’ based on clinical signs, symptoms, and biochemical evidence among previously hospitalized cases with COVID like symptoms in Bangladesh. The project is result of a collaboration with a humanitarian organisation in Bangladesh, Sajida Foundation 

Transitions related to early onset dementia. From diagnosis to end of life.

[PhD student: Malin Aspö, Co-supervisor: Berit Seiger Cronfalk]

The overall objective for the project is to increase knowledge and understanding on how to facilitate transitions for people living with early onset dementia. We aim to do so by identifying critical points during the disease trajectory and describe individuals’ experiences of going through transitions that are inherent to dementia. The main part of the project consists of a longitudinal study, collecting data by means of yearly interviews and questionnaires assessing quality of life among younger persons with dementia during a period of five years from receiving the diagnosis. One study in the project is focusing on the perspective of family members of persons with early onset dementia, living at nursing homes.

Massage following stroke among older patients

[PI: Berit Seiger Cronfalk]

The aim of the project is to examine the physiological and psychological effects of soft massage treatment (tactile massage) after stroke in geriatric patients, i.e., persons 65 years or older. The long-term goal is to improve care, treatment and function after stroke in older people. Research question: Does soft massage affect measurable psychological and physiological effects on symptoms and post-stroke function in patients 65 years and older? Preliminary results indicate that touching through stimulation of CT-fibres and soft massage can have normalizing effects on pulse and blood pressure as well as to contribute to pain relief, improved sleep, decreased anxiety, and increased well-being compared to the control group.

Stress Alleviating Mobile Application for Caregivers (SAMAC): A Feasibility Study

[Research team: Zarina N Kabir (PI), Hanne Konradsen, Cecilia Moberg]

The study aimed to assess feasibility of providing professional support via a mobile application, Stress Alleviating Mobile Application for Caregivers (SAMAC), by collecting views of caregivers of persons with dementia on its use to alleviate stress. Specific objectives of the study included: to explore caregivers’ views on stress alleviation through a mobile application; explore caregivers’ preference of the features of the SAMAC; test the feasibility of the use of the SAMAC for 8 weeks; test usability of health assessment measures in the SAMAC by caregivers. This project is the result of collaboration with the Faculty of Nursing at the Hong Kong Polytechnic University.

Translating Research in Elder Care (TREC)

[Responsible at KI: Anne-Marie Boström]

TREC is a Canadian research program led by Professor Carole Estabrooks, University of Alberta, Edmonton, Canada. The aim of the program is to develop solutions for improving the quality of care provided to nursing home residents, enriching the work life of their caregivers, and enhancing system efficiency. TREC is a research partnership of researchers, knowledge users, policy makers, and citizens which aims to produce knowledge that improves elder care. Read more [https://trecresearch.ca/]

External funding

CIMED- Centrum för Innovativ Medicin

Forte

Kamprad Foundation

Karolinska Institutet Engagement Grant

Karolinska Institutet Verify Impact Grant

Karolinska Institutet and Hong Kong Polytechnic University Collaborative Grant

Division of Nursing Strategic Grant

Strategic Research Area-Health Care Science, Karolinska Institutet

Research group leader

Group members

Collaboration

Sajida Foundation

Completed projects

Families in Nursing Care

[Research team: Hanne Konradsen (PI), Anne-Marie Boström, Zarina Nahar Kabir]

The study aimed to explore nurses' attitudes towards involving families in nursing care. Data was collected in Sweden, Canada and China using social media as a tool to recruit sample of nurses across the countries. This study was conducted in collaboration with Hong Kong University of Technology and University of Toronto. Furthermore, a study exploring changes in nurses’ attitudes in a Swedish context from 2011 to 2019 were analysed in collaboration with Linnaeus University and resulted in two publications.

In Conversation with a Frontline Worker of a Care Home in Sweden

Research team: Zarina N Kabir, Hanne Konradsen, Anne-Marie Boström]

As the world heard the historic declaration of the COVID-19 outbreak as a pandemic in March 2020, countries had to act rapidly with no previous experience to draw upon. Unlike many countries, Sweden did not impose a lockdown but advised its citizens on precautionary measures, including forbidding visits to care homes. To explore how the pandemic was experienced in the first few months by the frontline workers who found themselves in the midst of the storm, we engaged in a dialogue with one such nurse. This project documented personal experience of a nurse working at a care home in Stockholm during the pandemic.

SAMAC in Denmark

[Research team: Hanne Konradsen (PI), Zarina Nahar Kabir]

The aim of this study is to explore caregivers’ and dementia coordinators’ experiences of using technology in dementia care in everyday life. The study will furthermore be used to evaluate the possibility of conducting a study in Denmark, testing the same mobile app SAMAC. This project is the result of collaboration with the University of Copenhagen.

Family living with heart failure: An international study focusing on family functioning, family health and social support from nurses

[PI: Hanne Konradsen]

The aim was to examine if family functioning and family health in patients with heart failure and their partners was associated with their own and their partners’ perceived social support from nurses. The aims of the project were i) to explore the experiences of family functioning in relation to heart failure among Iranian immigrant families, and ii) to compare the family functioning, family health and social support from nurses among Danish, Icelandic and Iranian patients with heart failure and their family members.