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Anderzen-Carlsson, AgnetaORCID iD iconorcid.org/0000-0001-7352-8234
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Publications (10 of 134) Show all publications
Nafees, Z., Ferreira, J., Guadagno, E., Wray, J., Anderzen-Carlsson, A. & Poenaru, D. (2024). Adaptation, Translation, and Validation of a Patient-Reported Experience Measure for Children and Young People for the Canadian Context. Journal of Pediatric Surgery, Article ID S0022-3468(24)00062-9.
Open this publication in new window or tab >>Adaptation, Translation, and Validation of a Patient-Reported Experience Measure for Children and Young People for the Canadian Context
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2024 (English)In: Journal of Pediatric Surgery, ISSN 0022-3468, E-ISSN 1531-5037, article id S0022-3468(24)00062-9Article in journal (Refereed) Epub ahead of print
Abstract [en]

BACKGROUND: Patient-reported experience measures (PREMs) evaluate children's and young people's (CYP) perceptions of care. An important PREM developed with and for children was created in London, UK. Given the absence of similar North American instruments, we aimed to adapt, translate, and linguistically validate this instrument for use in a Canadian pediatric outpatient setting.

METHODS: A qualitative design was used, involving CYP and their parents/caregivers. Phase 1 entailed the English survey adaptation using think-aloud testing, revision, and cognitive testing. Phase 2 involved translation into French, revision and back-translation, and cognitive testing. Phase 3 encompassed a cross-validation of the English and French versions of the adapted instrument.

RESULTS: Fifty-five children in 3 age groups (8-11y, 12-13y, 14-16y) participated in creating the Canadian PREM. In Phases 1 and 2, 41 children participated in reviewing and updating specific questions in the instrument, resulting in adjustments and revisions based on their feedback. In Phase 3, 14 bilingual children linguistically validated the PREM instrument.

CONCLUSIONS: This study reports the development of the first Canadian PREM specifically tailored to children. By incorporating the perspectives and preferences of CYP in clinical practice, this approach has the potential to amplify the delivery of patient-centered care for this vulnerable population and ensure that the needs and voices of CYP are acknowledged.

LEVEL OF EVIDENCE: V, Therapeutic.

Place, publisher, year, edition, pages
Elsevier, 2024
Keywords
Patient centered care, Perception of care, Qualitative design, Vulnerable populations
National Category
Nursing
Identifiers
urn:nbn:se:oru:diva-111652 (URN)10.1016/j.jpedsurg.2024.01.030 (DOI)38369398 (PubMedID)
Note

This work was supported by grants from the National Natural Science Foundation of China (82371429, 82071200, 82173599), National Ministry of Science and Technology (SQ2021AAA010157), Shanghai Municipal Science and Technology Major Project (2018SHZDZX01 and ZJ LAB).

Available from: 2024-02-21 Created: 2024-02-21 Last updated: 2024-02-21Bibliographically approved
Leibring, I., Kihlgren, A. & Anderzen-Carlsson, A. (2024). Fear, coping and support: from the perspective of children aged 10-17-year old having acute lymphoblastic leukemia. International Journal of Qualitative Studies on Health and Well-being, 19(1), Article ID 2310147.
Open this publication in new window or tab >>Fear, coping and support: from the perspective of children aged 10-17-year old having acute lymphoblastic leukemia
2024 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 19, no 1, article id 2310147Article in journal (Refereed) Published
Abstract [en]

Purpose: To describe experiences of fear, coping, and support in 10-17-year-old children under treatment for acute lymphoblastic leukaemia (ALL).

Methods: A longitudinal descriptive qualitative design was adopted. Ten children participated in one to three interviews each (24 interviews in all). Interviews were analysed using a matrix-based qualitative method.

Results: The variety of fears described related to uncertainty, pain and medical procedures, bodily changes and loss of control, complications, professionals' attitudes, affected school results, and social isolation. Children used various strategies to deal with fear: some more general, to cope with the whole situation, and others more related to specific events such as treatment and tests. The most reported strategies we labelled Accepting the situation, Positive thinking, and Being an active agent. Less favourable strategies were also reported. Health care professionals, families, and friends offered valuable, but different kinds of, support.

Conclusions: Children aged 10 to 17 undergoing treatment for ALL experience various fears. Each experience is individual and changes over time, but there are common patterns. Most children used problem-solving or emotional-regulation strategies, but withdrawal was also reported. Even children who can deal with fear need support from their health care professionals, families, and friends.

Place, publisher, year, edition, pages
Taylor & Francis, 2024
Keywords
Children, acute lymphoblastic leukaemia, coping, fear, support
National Category
Pediatrics
Identifiers
urn:nbn:se:oru:diva-111470 (URN)10.1080/17482631.2024.2310147 (DOI)001157654400001 ()38324664 (PubMedID)2-s2.0-85184465285 (Scopus ID)
Funder
Swedish Childhood Cancer Foundation, PR2009-0016
Available from: 2024-02-08 Created: 2024-02-08 Last updated: 2024-02-20Bibliographically approved
Nordlind, A., Anderzen-Carlsson, A., Sundqvist, A.-S., Ängeby, K., Wray, J., Oldham, G. & Almblad, A.-C. (2024). Translation, cultural adaptation and validation of a patient-reported experience measure for children. Health Expectations, 27(1), Article ID e13924.
Open this publication in new window or tab >>Translation, cultural adaptation and validation of a patient-reported experience measure for children
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2024 (English)In: Health Expectations, ISSN 1369-6513, E-ISSN 1369-7625, Vol. 27, no 1, article id e13924Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: There is no national, validated, generic patient-reported experience measure (PREM) for children under 15 years of age in Sweden. A recent cross-sectional study found no consensus in how children's voices are heard in paediatric health care, as well as a lack of validated questionnaires.

AIM: The aim of this study is to translate, adapt and validate the six versions of the Children's and Young People's PREM for use in a Swedish health care context.

DESIGN: An exploratory sequential mixed-method design including cognitive interviews and content validity index (CVI) was used. The interviews focused on evaluating children's understanding of the questionnaire, and the CVI was used to further adjust the relevance of the questionnaire.

PARTICIPANTS: A convenience sample of 62 children participated in the cognitive interviews and an additional convenience sample of 42 children was included in the CVI testing. The children, aged 8-16 years, were attending routine visits at paediatric departments in a county hospital and a children's hospital in the mid-Sweden region between October 2020 and June 2022.

RESULTS: The translation, adaptation and validation process identified several issues regarding the understanding of the questionnaire in a Swedish context. Adaptations were made based on issues related to context, wording and the structure of the questions. CVI testing resulted in the removal of 3-10 questions in each of the different versions of the questionnaire.

CONCLUSION: The study has resulted in six face- and content-validated Swedish versions of the questionnaire ready for pilot testing. Although the versions of the original questionnaire were developed in collaboration with children in the United Kingdom, this did not mean that they could automatically be used in a Swedish health care context. This study confirms the importance of a rigorous process of adaptation and validation to ensure quality and applicability to children accessing health care in different countries.

PATIENT OR PUBLIC CONTRIBUTION: Children's views have guided the development of the original instrument and its adaptation to the Swedish health care context. Due to the strong patient involvement in the process of developing the Swedish versions of the questionnaire, the research group made a pragmatic decision to have no other patient contribution in the study.

Place, publisher, year, edition, pages
John Wiley & Sons, 2024
Keywords
PREM, children, cognitive interviews, content validity index, validation
National Category
Nursing
Identifiers
urn:nbn:se:oru:diva-110368 (URN)10.1111/hex.13924 (DOI)001116078000001 ()38062673 (PubMedID)2-s2.0-85178891713 (Scopus ID)
Funder
Region Värmland, 842361; 929558; 939096Region Örebro County, 917021Sven Jerring FoundationH.R.H. Crown Princess Lovisa's Association for Child Care, 2020-00549
Note

Funding Agencies:

Regional Research Council in Mid Sweden 850551, 939322

Available from: 2023-12-18 Created: 2023-12-18 Last updated: 2024-02-01Bibliographically approved
Imhagen, A., Karlsson, J., Jansson, S. P. O. & Anderzen-Carlsson, A. (2023). A lifelong struggle for a lighter tomorrow: A qualitative study on experiences of obesity in primary healthcare patients. Journal of Clinical Nursing, 32(5-6), 834-846
Open this publication in new window or tab >>A lifelong struggle for a lighter tomorrow: A qualitative study on experiences of obesity in primary healthcare patients
2023 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 32, no 5-6, p. 834-846Article in journal (Refereed) Published
Abstract [en]

AIM: To describe experiences of living with obesity before the start of a group-based lifestyle intervention.

BACKGROUND: Obesity is a chronic disease that affects a person's physical and psychological health. Increased knowledge of experiences of living with obesity is required.

DESIGN: A qualitative study with a descriptive design.

METHODS: Semi-structured individual interviews with 17 participants living with obesity (Body Mass Index 32-49) were conducted between October and November 2019. The interviews were analysed using qualitative content analysis. The COREQ checklist was followed.

RESULTS: The analysis resulted in one main theme: Struggling for a lighter tomorrow and three subthemes: Suffering, Resilience and Need for support in making changes. For the majority of the participants, living with obesity was a lifelong struggle involving suffering on different levels. Yet despite this, the participants had not given up and hoped for a better life. They showed a degree of resilience and motivation, and a perceived ability to achieve lifestyle changes. However, there was a pronounced need for support to help them achieve this.

CONCLUSION: Living with obesity is complex and carries a risk of medical complications as well as psychosocial suffering. Healthy lifestyle habits to achieve better health and to lose weight should be encouraged, taking patient resources into account. Patients also need help in handling weight stigmatisation, and both healthcare professionals and society must engage with this.

RELEVANCE TO CLINICAL PRACTICE: Obesity is a chronic disease, and patients need ongoing support. Therefore, care for patients with obesity in primary health care must be further developed. Patient resources and strengths have to be acknowledged and encouraged in the process of helping them adopt healthy lifestyle habits. The findings of this study can contribute to ending weight stigmatisation by increasing the knowledge of living with obesity.

Place, publisher, year, edition, pages
John Wiley & Sons, 2023
Keywords
Experiences, lifestyle, nursing, obesity, primary health care, qualitative research
National Category
Nursing
Identifiers
urn:nbn:se:oru:diva-99525 (URN)10.1111/jocn.16379 (DOI)000804990000001 ()35655375 (PubMedID)2-s2.0-85131172733 (Scopus ID)
Note

Funding agency:

University Health Care Research Center, Region Örebro County, Örebro, Sweden

Available from: 2022-06-15 Created: 2022-06-15 Last updated: 2024-01-02Bibliographically approved
Sundqvist, A.-S., Wahlqvist, M., Anderzen-Carlsson, A. & Olsson, E. (2023). An integrative review of interventions for children and adolescents with deafblindness. In: : . Paper presented at Nordic Conference in Nursing Research, Reykjavik, Iceland, 2-4 October, 2023.
Open this publication in new window or tab >>An integrative review of interventions for children and adolescents with deafblindness
2023 (English)Conference paper, Poster (with or without abstract) (Other academic)
National Category
Pediatrics Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:oru:diva-109649 (URN)
Conference
Nordic Conference in Nursing Research, Reykjavik, Iceland, 2-4 October, 2023
Available from: 2023-11-09 Created: 2023-11-09 Last updated: 2023-11-09Bibliographically approved
Arvidsson Lindvall, M., Appelros, P., Forsberg, A. & Anderzen-Carlsson, A. (2023). Experiences of living with balance limitations after first-ever stroke. In: : . Paper presented at World Physiotherapy Congress, WCPT, Geneva, Switzerland, 2019.
Open this publication in new window or tab >>Experiences of living with balance limitations after first-ever stroke
2023 (English)Conference paper, Poster (with or without abstract) (Refereed)
Abstract [en]

Background:  

Stroke is the leading cause of serious, long-term disability among adults. Balance control after stroke may be affected due to motor impairment such as muscle weakness, spasticity and impaired sensory function and also cognitive deficits may affect balance control. The balance limitations affect walking and independence in activities of daily living. Having good balance has been described as an important factor in outdoor walking and for participation in exercises. Studies in which persons with stroke describe their experience of balance in everyday life are scarce.

Purpose:  

The aim of the present presentation is to describe experiences of living with balance limitations in everyday life after first-ever stroke.

Methods:  

Twenty persons initially agreed to participate; however, one person later declined further participation, thus giving a sample size of 19 participants (10 females and 9 men), aged between 42-92 years. The inclusion criteria were: having had a first-ever stroke and having self-reported impaired balance, unaffected speech, independence in toileting and dressing, and walking ability indoors and outdoors with or without a walking aid. A qualitative data collection through individual interviews was conducted. Data was analysed by means of an inductive content analysis covering both the manifest and the latent content of the transcribed interviews.

Results:  

The participants' experiences of balance and its influence in everyday life, are presented in two themes. The first theme “Feeling dizzy and unstable is a continuous challenge”, revolves around participants' descriptions of balance as a constant feeling of dizziness and unsteadiness. The second theme “Feeling trust and confidence despite dizziness and unsteadiness” is about perceived abilities and feelings of confidence about still being able to do things oneself, despite the dizziness and unsteadiness.

Conclusion(s):  

All participants experienced the balance limitations as a continuous challenge in everyday life, yet they also felt trust and confidence and experienced that they still managed their everyday life. In future research it would be of interest to establish which strategies can make persons with stroke feel in balance in relation to fear of falling.

Implications:

In physical therapy practice, the experiences of balance limitations after stroke from the person with stroke add valuable information to various assessments. By asking the person about their abilities and challenges in daily living, rehabilitation interventions can be more individualized and based on the person's actual condition and their wishes and needs.

Keywords
stroke, balance experience, qualitative method
National Category
Occupational Therapy Physiotherapy Neurology
Identifiers
urn:nbn:se:oru:diva-109619 (URN)
Conference
World Physiotherapy Congress, WCPT, Geneva, Switzerland, 2019
Funder
The Swedish Stroke Association, 2017Region Örebro County, OLL-636861
Available from: 2023-11-07 Created: 2023-11-07 Last updated: 2024-01-03Bibliographically approved
Rinde, E. R., Anderzen-Carlsson, A., Jahnsen, R. B. & Andersen, R. D. (2023). "I have to obey my pain": children's experiences of pain burden in cerebral palsy. Disability and Rehabilitation, 1-9
Open this publication in new window or tab >>"I have to obey my pain": children's experiences of pain burden in cerebral palsy
2023 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, p. 1-9Article in journal (Refereed) Epub ahead of print
Abstract [en]

PURPOSE: To explore pain experiences of children with cerebral palsy, and how it influences their everyday life.

METHOD: Fourteen children with CP between eight and seventeen years old were included, using a purposeful sampling strategy. They had different experiences of pain, and different degrees of physical and cognitive impairments. Sixteen individual semi-structured interviews were carried out, and analyzed using inductive thematic analysis.

RESULTS: Data analysis resulted in the main theme "I have to obey my pain" and four themes were identified. Experiences regarding pain varied ("My pain is mine alone"). Both pain itself and the use of cognitive strategies to cope with pain involved a mental struggle ("Pain brings me down"). The children had to make adjustments to manage their pain ("I want to participate, but I have to rest"). The most important help was to be understood, but adults also provided valuable help with interventions like stretching, medication and adjustment of activity levels ("Others can help me").

CONCLUSION: Pain was a determining feature in the lives of these children with CP. The wide variety of experiences and challenges emphasized the need for tailored management strategies developed together with each child and their parents.

IMPLICATIONS FOR REHABILITATION

  • Children with cerebral palsy had varied experiences of pain, and health professionals need to tailor their pain management approaches to the individual child.
  • Health services should offer pain education to expand children's repertoire of pain management strategies.
  • When a child's pain influences their daily activities, health services must ensure that the school is informed of the child's situation, and able to make necessary adjustments.
  • Health professionals should strive to include children's own descriptions whenever possible to make sure children feel heard and believed.
  • Even children with communicative and cognitive impairments were able to self-report when necessary adjustments in the communication situation were made.
Place, publisher, year, edition, pages
Taylor & Francis, 2023
Keywords
Pain, cerebral palsy, children, interview study, lived experiences
National Category
Nursing Pediatrics
Identifiers
urn:nbn:se:oru:diva-105219 (URN)10.1080/09638288.2023.2191012 (DOI)000959134800001 ()36987867 (PubMedID)2-s2.0-85151966404 (Scopus ID)
Available from: 2023-03-30 Created: 2023-03-30 Last updated: 2023-12-08Bibliographically approved
Sundqvist, A.-S., Wahlqvist, M., Anderzen-Carlsson, A. & Olsson, E. (2023). Interventions for children with deafblindness: An integrative review. Child Care Health and Development, 49(3), 407-430
Open this publication in new window or tab >>Interventions for children with deafblindness: An integrative review
2023 (English)In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 49, no 3, p. 407-430Article, review/survey (Refereed) Published
Abstract [en]

BACKGROUND: Deafblindness is a rare condition, and its prevalence has been reported to be approximately one in 27,000 new-borns worldwide. For individuals with deafblindness, lifelong interventions and support are needed to be able to develop communication, be active and preserve a good quality of life. Since little is known about what kind of support and interventions can be offered to children with deafblindness, the aim was to summarize and disseminate research findings regarding this topic.

METHODS: Integrative review principles were employed. Systematic searches in eight databases and additional manual searches were conducted. The inclusion criteria were as follows: original studies published between 2000 and 2021 examining either interventions for children between 0-18 years of age with deafblindness or interventions aimed at children with deafblindness but offered to their relatives or professionals working with them. Studies on support for family members were also sought. Study characteristics were described, and key findings were synthesized into categories based on their similarities.

RESULTS: Of the 6,268 identified original studies, 32 were included. The key outcomes from the included studies were synthesized into three categories, with two categories illustrating the goal/intention of the intervention (social interaction and communication, motivation and participation) and one focusing on or identifying the action taken to benefit the child (adaptation of the educational environment). Social interaction and communication was the dominant category, covering 24 of the 32 included studies.

CONCLUSIONS: This review concludes that there is a limited number of evaluated interventions for children with deafblindness. In many cases, the interventions were adapted to the individual child's needs, and most of them were found within the area of social interaction and communication. More research is needed to strengthen the level of evidence for interventions for children with deafblindness.

Place, publisher, year, edition, pages
John Wiley & Sons, 2023
Keywords
Adolescents, children, deafblindness, dual sensory loss, integrative review, interventions, rehabilitation
National Category
Pediatrics
Identifiers
urn:nbn:se:oru:diva-101247 (URN)10.1111/cch.13060 (DOI)000860109800001 ()36099547 (PubMedID)2-s2.0-85138734106 (Scopus ID)
Funder
Örebro UniversityRegion Örebro County
Available from: 2022-09-23 Created: 2022-09-23 Last updated: 2023-12-08Bibliographically approved
Rinde, E. R., Anderzen-Carlsson, A., Jahnsen, R. B. & Andersen, R. D. (2023). "Pain is one piece of a complex jigsaw puzzle": experiences of raising a child with cerebral palsy who has pain. Disability and Rehabilitation
Open this publication in new window or tab >>"Pain is one piece of a complex jigsaw puzzle": experiences of raising a child with cerebral palsy who has pain
2023 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165Article in journal (Refereed) Epub ahead of print
Abstract [en]

Purpose: To explore experiences of parenting a child with CP and pain.

Method: Fourteen mothers and one father of children (9-16) with CP were included. All children had pain regularly, but the frequency and intensity of their pain experiences varied. Their motor function varied from GMFCS level I to V. Cognitive abilities varied from normal to moderate cognitive deficits. All children could express themselves verbally. Semi structured individual interviews were carried out, and results were developed using inductive thematic analysis.

Results: The analysis resulted in the main theme "My child's pain is just one piece of a complex jigsaw puzzle". The main theme was developed by four mutually exclusive, but related themes: "My child's struggle burdens me", "Pain and CP direct our everyday life", "I want to be in control, but cannot always be" and "We are the only ones who understand the complexity".Conclusion: Parents of children with CP experience pain as one aspect of a bigger picture. They need help and support to cope with their child's pain, and professional helpers need to address the complexity pain is a part of.

IMPLICATIONS FOR REHABILITATION: Parents of children with cerebral palsy (CP) experience their child's pain as one piece in a jigsaw puzzle, and counseling needs to address the complexity rather than the separate parts of the picture.Health professionals should support parents in evaluation and management of their child's pain, as a feeling of competence in pain management is important to reduce parental stress.Health professionals should inform themselves about the life situation of parents whose child with CP has pain, and encourage them to seek practical support and apply for relevant support schemes that can make their everyday life easier.Parents of children with CP should be encouraged to take part in a diagnosis-specific support group, where they can meet with others in a similar situation, in order to reduce their feeling of being alone with their challenges.

Place, publisher, year, edition, pages
Taylor & Francis, 2023
Keywords
Childhood cerebral palsy, lived experience, pain, parenting
National Category
Nursing
Identifiers
urn:nbn:se:oru:diva-110374 (URN)10.1080/09638288.2023.2290199 (DOI)001118653200001 ()38069685 (PubMedID)2-s2.0-85179967565 (Scopus ID)
Note

Funding Agency:

Telemark Hospital Trust

Available from: 2023-12-18 Created: 2023-12-18 Last updated: 2024-02-05Bibliographically approved
Hjaldahl, J., Granberg, S., Widén, S. & Anderzen-Carlsson, A. (2023). Utilization of Audiological Rehabilitation Interventions: Contextual Factors that Matter. In: : . Paper presented at American Academy of Audiology (AAA) HearTech), Seattle, USA, April 19-22, 2023.
Open this publication in new window or tab >>Utilization of Audiological Rehabilitation Interventions: Contextual Factors that Matter
2023 (English)Conference paper, Oral presentation with published abstract (Other academic)
National Category
Occupational Health and Environmental Health
Identifiers
urn:nbn:se:oru:diva-107006 (URN)
Conference
American Academy of Audiology (AAA) HearTech), Seattle, USA, April 19-22, 2023
Available from: 2023-07-06 Created: 2023-07-06 Last updated: 2023-07-06Bibliographically approved
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Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0001-7352-8234

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