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Johnson, F., Frygner Holm, S. & Hess Engström, A. (2024). Experiences of digital physiotherapy during pregnancy and after childbirth: A qualitative study. Internet Interventions, 38, Article ID 100768.
Open this publication in new window or tab >>Experiences of digital physiotherapy during pregnancy and after childbirth: A qualitative study
2024 (English)In: Internet Interventions, ISSN 2214-7829, Vol. 38, article id 100768Article in journal (Refereed) Published
Abstract [en]

Background

Pelvic girdle pain, low back pain, and pelvic floor dysfunction can affect women's mobility, quality of life, and well-being during pregnancy and the postpartum period. Digital interventions for treating perinatal depression and lifestyle changes have been studied. Research on digital physiotherapy for musculoskeletal issues related to pregnancy and the postpartum period is sparse.

Methods

This qualitative study involved in-depth, semi-structured interviews with 19 participants, of whom six were pregnant and 13 had given birth. Participants were recruited from a private clinic in Sweden through convenience sampling and had received digital physiotherapy prior to the interviews. An interview guide with questions exploring participants' experiences of digital physiotherapy, including its impact on musculoskeletal issues and daily life, and their motivation for seeking digital healthcare was used. Data were analyzed using a qualitative content analysis with an inductive approach.

Results

The analysis resulted in two main categories: Finding a new way into physiotherapy treatment and Personalized progress through tailored physiotherapy. These main categories encompassed four generic categories: Convenience and dissatisfaction motivators for digital physiotherapy, A dual experience – appreciated but not always comprehensive, Being involved in the rehabilitation process, and Perceived physical and mental improvements after digital physiotherapy.

Conclusion

Digital physiotherapy was well-accepted and perceived as beneficial for managing musculoskeletal symptoms during pregnancy and after childbirth. High accessibility and flexibility were considered advantages. However, inability to undergo a physical assessment was a challenge. Digital physiotherapy may be recommended as a complement to usual care, particularly for women with limited access to a physiotherapist specialized in women's health. Future studies exploring digital physiotherapy's efficacy for musculoskeletal issues during pregnancy and after childbirth are highly recommended.

Place, publisher, year, edition, pages
Elsevier, 2024
Keywords
Women's health, Physiotherapy, Qualitative research, Pelvic pain, Pelvic floor disorder, Digital health
National Category
Physiotherapy Gynaecology, Obstetrics and Reproductive Medicine
Identifiers
urn:nbn:se:uu:diva-538211 (URN)10.1016/j.invent.2024.100768 (DOI)001301224300001 ()
Available from: 2024-09-11 Created: 2024-09-11 Last updated: 2025-02-11Bibliographically approved
Witt, S., Quitmann, J., Höglund, A. T., Russ, S., Kaman, A., Escherich, G. & Frygner Holm, S. (2023). Effects of a Pretend Play Intervention on Health-Related Quality of Life in Children With Cancer: A Swedish–German Study. Journal of Pediatric Hematology/Oncology Nursing, 40(3), 158-169
Open this publication in new window or tab >>Effects of a Pretend Play Intervention on Health-Related Quality of Life in Children With Cancer: A Swedish–German Study
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2023 (English)In: Journal of Pediatric Hematology/Oncology Nursing, ISSN 2752-7530, Vol. 40, no 3, p. 158-169Article in journal (Refereed) Published
Abstract [en]

Background: Cancer diagnosis can lead to massive physical, emotional, and social burdens on children and their families. Although children have the right to be informed and participate in their care, research shows that children's views are often not considered in care situations. Thus, it is essential to strengthen children's communication and self-efficacy (SE) to convey desires and needs. The present study explores whether a play intervention is associated with improved health-related quality of life (HrQoL) and SE for communication in care situations. We hypothesize that HrQoL and SE for communication will increase from the beginning to after the pretend play intervention.

Methods: Children with cancer from Germany and Sweden were enrolled. The pretend play intervention consisted of six to 10 play sessions. A heterogenic selection of questionnaires was used to measure children's HrQoL and SE before the first pretend play session and after the last play intervention.

Results: Nineteen families were included in the presented analyses, including 14 self-reports of children and 19 proxy reports of parents. We found improvements in child-reported communication, and emotional and psychosocial well-being using generic and cancer-specific HrQoL measurements. Further, children's SE in care situations improved during the play intervention. Parents also reported minor improvements in the physical dimensions in both generic and chronic‐generic HrQoL, along with improvements in independence.

Discussion: Overall, the cancer-specific pretend play intervention offers young children with cancer a secure environment and can contribute to their well-being, and communication skills, during or after cancer treatment. 

Place, publisher, year, edition, pages
Sage Publications, 2023
Keywords
pediatric cancer, care setting, health-related quality of life, pediatric nursing
National Category
Medical and Health Sciences
Research subject
Ethics
Identifiers
urn:nbn:se:uu:diva-496343 (URN)10.1177/27527530221121726 (DOI)000923142700001 ()
Funder
Swedish Childhood Cancer Foundation, 2018-0071
Available from: 2023-02-10 Created: 2023-02-10 Last updated: 2023-09-29Bibliographically approved
Norbäck, K., Höglund, A. T., Godskesen, T. & Frygner Holm, S. (2023). Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals' perceptions and experiences.. BMC Medical Ethics, 24(1), 23, Article ID 23.
Open this publication in new window or tab >>Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals' perceptions and experiences.
2023 (English)In: BMC Medical Ethics, E-ISSN 1472-6939, Vol. 24, no 1, p. 23-, article id 23Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Research is crucial to improve treatment, survival and quality of life for children with cancer. However, recruitment of children for research raises ethical challenges. The aim of this study was to explore and describe ethical values and challenges related to the recruitment of children with cancer for research, from the perspectives and experiences of healthcare professionals in the Swedish context. Another aim was to explore their perceptions of research ethics competence in recruiting children for research.

METHODS: An explorative qualitative study using semi-structured interviews with key informants. Seven physicians and ten nurses were interviewed. Interviews were analysed using inductive qualitative content analysis.

RESULTS: The respondents' ethical challenges and values in recruitment mainly concerned establishing relationships and trust, meeting informational needs, acknowledging vulnerability, and balancing roles and interests. Ensuring ethical competence was raised as important, and interpersonal and communicative skills were highlighted.

CONCLUSION: This study provides empirical insight into recruitment of children with cancer, from the perspectives of healthcare professionals. It also contributes to the understanding of recruitment as a relational process, where aspects of vulnerability, trust and relationship building are important, alongside meeting informational needs. The results provide knowledge on the complexities raised by paediatric research and underpin the importance of building research ethics competence to ensure that the rights and interests of children with cancer are protected in research.

Place, publisher, year, edition, pages
BioMed Central (BMC), 2023
Keywords
Assent, Ethical challenges, Ethics, Healthcare professionals, Informed consent, Paediatric oncology, Qualitative research, Research recruitment, Shared decision-making
National Category
Nursing Medical Ethics Ethics
Research subject
Ethics; Pediatrics
Identifiers
urn:nbn:se:uu:diva-500405 (URN)10.1186/s12910-023-00901-4 (DOI)000949309100001 ()36918868 (PubMedID)2-s2.0-85150245004 (Scopus ID)
Funder
Swedish Childhood Cancer Foundation, PR2019-0107
Available from: 2023-04-17 Created: 2023-04-17 Last updated: 2025-12-08Bibliographically approved
Höglund, A. T., Witt, S., Quitmann, J. H. & Frygner Holm, S. (2023). Parent Perceptions of a Pretend Play Intervention for Their Children With Cancer. Journal of Nursing Research, 31(1), Article ID e253.
Open this publication in new window or tab >>Parent Perceptions of a Pretend Play Intervention for Their Children With Cancer
2023 (English)In: Journal of Nursing Research, ISSN 1682-3141, Vol. 31, no 1, article id e253Article in journal (Refereed) Published
Abstract [en]

BackgroundAlthough the rate of survival in childhood cancer today is close to 85%, a cancer diagnosis can still turn the world upside down for both children and parents. Often, children in oncology care are frustrated about their inability to control events and activities around them. Therapeutic pretend play has been suggested as a means to encourage children to express and handle emotions in a safe environment.PurposeThis study was developed to describe and explore parents' experiences of a pretend play intervention that consisted of six to eight play sessions with a play facilitator administered to their children undergoing cancer treatment.MethodsA descriptive qualitative method was used, including individual interviews with 15 parents.ResultsThree main categories were developed, including (a) experiences of joining the project, (b) perceptions of the play intervention, and (c) reflections on effects and implications, with subcategories evolved for each category. The parents experienced that the play sessions helped improve their children's communication skills and made them more capable of participating in their care. They appreciated that the intervention focused on the child's well-being and saw it as a positive break in their child's cancer treatment. It also helped them better reflect on their own situation.Conclusions/Implications for PracticeAccording to the parents' experiences, pretend play can be a helpful tool for improving children's participation in their cancer care that strengthens their autonomy, emotional repertoire, and communication skills. However, the results also highlighted that some of the children did not fully understand the information provided about this study, which weakened the validity of their consent to participate. Thus, more work is needed on developing age-appropriate information to obtain participation consent from children. In addition, more knowledge is needed regarding how to appropriately include children with cancer in research in an ethically acceptable way.

Place, publisher, year, edition, pages
Wolters Kluwer, 2023
National Category
Nursing Medical Ethics
Research subject
Ethics
Identifiers
urn:nbn:se:uu:diva-489808 (URN)10.1097/jnr.0000000000000532 (DOI)000922008100002 ()
Funder
Swedish Childhood Cancer Foundation, PR2013-0123
Available from: 2022-12-05 Created: 2022-12-05 Last updated: 2023-03-17Bibliographically approved
Norberg Wieslander, K., Höglund, A. T., Frygner Holm, S. & Godskesen, T. (2023). Research ethics committee members’ perspectives on paediatric research: a qualitative interview study. Research Ethics, 19(4), 494-518
Open this publication in new window or tab >>Research ethics committee members’ perspectives on paediatric research: a qualitative interview study
2023 (English)In: Research Ethics, ISSN 1747-0161, E-ISSN 2047-6094, Vol. 19, no 4, p. 494-518Article in journal (Refereed) Published
Abstract [en]

Research ethics committees (RECs) have a crucial role in protecting children in research. However, studies on REC members’ perspectives on paediatric research are scarce. We conducted a qualitative study to explore Swedish scientific REC members’ perspectives on ethical aspects in applications involving children with severe health conditions. The REC members considered promoting participation, protecting children and regulatory adherence to be central aspects. The results underscored the importance of not neglecting ill children’s rights to adapted information and participation. REC members supported a contextual and holistic approach to vulnerability and risk, which considers the child’s and parents’ psychological wellbeing and the child’s integrity, both short and long term. The ethical complexity of paediatric research requires continuous ethical competence development within RECs.

Place, publisher, year, edition, pages
Sage Publications, 2023
Keywords
paediatric research, research ethics, human research ethics committee, ethical review board, recruitment, informed consent, assent, qualitative research
National Category
Medical Ethics
Research subject
Ethics; Medical Science; Pediatrics
Identifiers
urn:nbn:se:uu:diva-504898 (URN)10.1177/17470161231179663 (DOI)001003835000001 ()2-s2.0-85162648546 (Scopus ID)
Funder
Swedish Childhood Cancer Foundation, PR2019-0107
Available from: 2023-06-16 Created: 2023-06-16 Last updated: 2025-12-08Bibliographically approved
Godskesen, T., Frygner Holm, S., Höglund, A. T. & Eriksson, S. (2023). YouTube as a source of information on clinical trials for paediatric cancer. Information, Communication and Society, 26(4), 716-729
Open this publication in new window or tab >>YouTube as a source of information on clinical trials for paediatric cancer
2023 (English)In: Information, Communication and Society, ISSN 1369-118X, E-ISSN 1468-4462, Vol. 26, no 4, p. 716-729Article in journal (Refereed) Published
Abstract [en]

Little is known about the information parents of children with cancer find when searching for clinical trials information on YouTube. Thus, this study aimed to analyse the content, quality and reliability of YouTube videos focused on clinical trials for paediatric cancer. A descriptive cross-sectional design was used, and YouTube was searched using the phrases ‘clinical trials for children with cancer’ and ‘paediatric cancer clinical trials’. Videos that met inclusion criteria were assessed using the instruments Global Quality Scale and DISCERN. About half of the examined videos were in the GQS excellent-quality group and exhibited a total of 84,804 views. The mean time for videos was 5.7 minutes, they originated from the US or UK, were uploaded after 2016, and had a cancer centre/foundation or children hospital as video source. Half of them were focusing on early experimental trials and had a positive tone. Twenty percent were classified as useful without serious shortcomings, almost 50% as misleading with serious shortcomings, and 30% as inappropriate sources of information. In conclusion, most YouTube videos on paediatric cancer trials are not very informative and fall short of what could ethically be required regarding their facilitation of informed decision-making.

Place, publisher, year, edition, pages
Taylor & Francis, 2023
Keywords
YouTube; social media; clinical trials; paediatric cancer; e-learning
National Category
Medical Ethics
Identifiers
urn:nbn:se:uu:diva-453112 (URN)10.1080/1369118X.2021.1974515 (DOI)000693941300001 ()
Available from: 2021-09-14 Created: 2021-09-14 Last updated: 2023-05-22Bibliographically approved
Frygner-Holm, S., Igelström, H. & Demmelmaier, I. (2022). Development, preliminary validation and reliability testing of SEDA - Self-Efficacy in Daily Activities for children with pain. Physiotherapy Theory and Practice, 38(4), 561-571
Open this publication in new window or tab >>Development, preliminary validation and reliability testing of SEDA - Self-Efficacy in Daily Activities for children with pain
2022 (English)In: Physiotherapy Theory and Practice, ISSN 0959-3985, E-ISSN 1532-5040, Vol. 38, no 4, p. 561-571Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Self-efficacy can affect a child's ability to perform important activities, infuse him/her with a sense of control and is likely an integral target for successful treatment in pediatric pain rehabilitation. Modern physical therapy treatment includes behavioral aspects and valid measures of self-efficacy are important for both research and clinical practice. In this study, the aim was to develop and perform preliminary testing of a self-efficacy scale for children and adolescents with pain.

METHODS: Children and adolescents participated, along with researchers and healthcare staff, in developing the Self-Efficacy in Daily Activities (SEDA) measure. A total of 109 children and adolescents seeking physical therapy treatment for pain lasting longer than 3 months responded to the SEDA. Pain and pain-related disability were assessed using the Functional Disability Inventory (FDI). Exploratory analyzes for testing validity and reliability - principal component analyses (PCA), intraclass correlation coefficients (ICCs) and bivariate correlations - were performed.

RESULTS: The PCA revealed a 16-item SEDA and a three-component scale. The components represented self-efficacy for physical activities, self-efficacy for personal care and self-efficacy for daily exertion. Validity correlation analyses showed moderate association between SEDA and FDI, -0.72 (p < .01), and low correlation with pain intensity, -0.29 (p = .03).

CONCLUSIONS: The 16-item SEDA has satisfactory psychometric properties in children moderately affected by long-term pain. Further validation of the SEDA in other populations and confirmatory analyses are warranted.

Place, publisher, year, edition, pages
Augusta: Taylor & Francis, 2022
Keywords
Pain, children, measure, self-efficacy
National Category
Physiotherapy
Identifiers
urn:nbn:se:uu:diva-459827 (URN)10.1080/09593985.2020.1771797 (DOI)000549615100001 ()32603242 (PubMedID)
Available from: 2021-11-29 Created: 2021-11-29 Last updated: 2025-02-11Bibliographically approved
Mascalzoni, D., Biasiotto, R., Borsche, M., Brüggemann, N., De Grandi, A., Goegele, M., . . . Hicks, A. A. (2021). Balancing scientific interests and the rights of participants in designing a recall by genotype study. European Journal of Human Genetics, 29(7), 1146-1157
Open this publication in new window or tab >>Balancing scientific interests and the rights of participants in designing a recall by genotype study
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2021 (English)In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 29, no 7, p. 1146-1157Article in journal (Refereed) Published
Abstract [en]

Recall by genotype (RbG) studies aim to better understand the phenotypes that correspond to genetic variants of interest, by recruiting carriers of such variants for further phenotyping. RbG approaches pose major ethical and legal challenges related to the disclosure of possibly unwanted genetic information. The Cooperative Health Research in South Tyrol (CHRIS) study is a longitudinal cohort study based in South Tyrol, Italy. Demand has grown for CHRIS study participants to be enrolled in RbG studies, thus making the design of a suitable ethical framework a pressing need. We here report upon the design of a pilot RbG study conducted with CHRIS study participants. By reviewing the literature and by consulting relevant stakeholders (CHRIS participants, clinical geneticists, ethics board, GPs), we identified key ethical issues in RbG approaches (e.g. complexity of the context, communication of genetic results, measures to further protect participants). The design of the pilot was based on a feasibility assessment, the selection of a suitable test case within the ProtectMove Research Unit on reduced penetrance of hereditary movement disorders, and the development of appropriate recruitment and communication strategies. An empirical study was embedded in the pilot study with the aim of understanding participants' views on RbG. Our experience with the pilot study in CHRIS allowed us to contribute to the development of best practices and policies for RbG studies by drawing recommendations: addressing the possibility of RbG in the original consent, implementing tailored communication strategies, engaging stakeholders, designing embedded empirical studies, and sharing research experiences and methodology.

Place, publisher, year, edition, pages
Springer Nature, 2021
National Category
Medical Genetics and Genomics Medical Ethics
Identifiers
urn:nbn:se:uu:diva-454181 (URN)10.1038/s41431-021-00860-7 (DOI)000650059300001 ()33981014 (PubMedID)
Funder
NordForsk, 81105German Research Foundation (DFG), FOR2488
Available from: 2021-09-27 Created: 2021-09-27 Last updated: 2025-02-10Bibliographically approved
Frygner Holm, S., Åsenlöf, P., Ljungman, G. & Söderlund, A. (2021). Physical therapists' experiences of learning and delivering a complex behavioral medicine intervention to adolescents with pain. Physiotherapy Theory and Practice, 37(5), 583-593
Open this publication in new window or tab >>Physical therapists' experiences of learning and delivering a complex behavioral medicine intervention to adolescents with pain
2021 (English)In: Physiotherapy Theory and Practice, ISSN 0959-3985, E-ISSN 1532-5040, Vol. 37, no 5, p. 583-593Article in journal (Refereed) Published
Abstract [en]

The objective was to study physical therapists' (PTs') experiences of learning and delivering a complex intervention, a tailored behavioral medicine treatment (BMT) targeting adolescents with pain in primary care. Method: An explorative study with qualitative approach, using content analysis. Three primary care PTs delivering the treatments in a randomized controlled study were interviewed regarding their views on the BMT. Results: The participating PTs considered learning about and delivering the BMT as challenging but rewarding. The biopsychosocial approach, tailoring of the treatment and dialogues with parents were identified as key aspects of the BMT program. The process of formulating a functional behavioral analysis was perceived as strenuous. The supervision of the PTs throughout the study was regarded as crucial and necessary for learning about and providing tailored BMT. Conclusion: Learning about and delivering BMT targeting adolescents with persistent pain is fruitful but laborious and demanding according to three PTs experienced with treatment of pediatric pain in primary care. Extensive education and long periods of supervision seem to be crucial for success and safe delivery according to protocol.

Place, publisher, year, edition, pages
Taylor & FrancisTAYLOR & FRANCIS INC, 2021
Keywords
Behavioural medicine, children, pain, primary care
National Category
Physiotherapy
Identifiers
urn:nbn:se:uu:diva-445216 (URN)10.1080/09593985.2019.1639232 (DOI)000478435700001 ()31305232 (PubMedID)
Funder
Swedish Research Council, 2009-1069-67688-62Gillbergska stiftelsen
Available from: 2021-06-14 Created: 2021-06-14 Last updated: 2025-02-11Bibliographically approved
Frygner-Holm, S., Russ, S., Quitmann, J., Ring, L., Zyga, O., Hansson, M. G., . . . Höglund, A. T. (2020). Pretend Play as an Intervention for Children With Cancer: A Feasibility Study. Journal of Pediatric Oncology Nursing, 37(1), 65-75
Open this publication in new window or tab >>Pretend Play as an Intervention for Children With Cancer: A Feasibility Study
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2020 (English)In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 37, no 1, p. 65-75Article in journal (Refereed) Published
Abstract [en]

Children with cancer suffer from symptoms and burdensome treatments that often cause distress to children and their families. Mortality is one aspect of cancer diagnosis, while another is the quality of life and well-being during and after the treatment. By supporting children's communication, self-efficacy and coping ability in the care situation, children are given the possibilities for increased independence and participation and are allowed to develop an influence over their care. The aim of this study was to develop and evaluate the feasibility and acceptability of an adult-facilitated pretend play intervention for children with cancer. Five children with ongoing treatment for cancer were invited to a play intervention that consisted of six to eight sessions of structured pretend play aimed at increasing participation, independence, and well-being. A mixed method design was used to evaluate the feasibility and acceptability of the play intervention. Measures were collected before and after interventions, and in conjunction with every play session. Results suggest that the children enjoyed the play intervention. Findings indicate small improvements regarding self-efficacy in care situations and equal or increased quality of life for participants. A main finding was that no adverse events or increased worrying was reported in conjunction with play sessions. Therefore, the intervention is regarded as safe, feasible, and acceptable as reported by participants and their primary caregivers and a possible means of increasing participation and independence in children with a cancer diagnosis.

Place, publisher, year, edition, pages
Sage Publications, 2020
Keywords
Intervention, pediatric oncology, pretend play, self-efficacy
National Category
Cancer and Oncology Pediatrics
Research subject
Oncology; Pediatrics; Psychology
Identifiers
urn:nbn:se:uu:diva-399071 (URN)10.1177/1043454219874695 (DOI)000498992800006 ()31540566 (PubMedID)
Funder
Swedish Childhood Cancer Foundation, PR2013-0123
Available from: 2019-12-12 Created: 2019-12-12 Last updated: 2024-02-26Bibliographically approved
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Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-0609-5683

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