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Pennacchia, J. M., Østvik, J., Dutia, I., Walsh, M., Coghill, D., Granlund, M. & Imms, C. (2025). Assessing mental health of people with complex communication needs: A systematic review. Journal of Communication Disorders, 113, Article ID 106494.
Open this publication in new window or tab >>Assessing mental health of people with complex communication needs: A systematic review
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2025 (English)In: Journal of Communication Disorders, ISSN 0021-9924, E-ISSN 1873-7994, Vol. 113, article id 106494Article in journal (Refereed) Published
Abstract [en]

Mental health is “a state of wellbeing” as per the World Health Organisation. People with disabilities generally experience poorer wellbeing than those without disabilities. Instruments which assess wellbeing or its three core components (emotional, psychological, social) may be less accessible or appropriate for people with complex communication needs (CCN). This study aimed to identify and describe instruments used to measure wellbeing in people with CCN. A systematic review following PRISMA guidelines was conducted. Six databases were searched to identify studies where wellbeing was measured in people with CCN. Two reviewers extracted data to describe the studies, participants, instrument(s) used, and adaptations applied. Instrument items were then mapped to indicators of mental health. Twenty-six studies were included. Participants’ receptive language ranged normal to profoundly impaired and they used a variety of expressive communication methods. Twenty-two different instruments were identified; ten of which were quality-of-life measures. Adaptations were made to instruments in eight studies, mostly to administration procedures. Item mapping revealed that while some wellbeing indicators were represented within the included instruments, coverage was insufficient to consider any instrument a “measure of wellbeing” for this population. Some instruments had features which made them more appropriate for people with CCN: ensuring communication access; recognising the relative importance of wellbeing indicators to an individual; collecting information from multiple sources when using proxy-report; and acknowledging environmental factors. Research is required to develop or adapt an instrument for valid and reliable measurement of wellbeing in people with CCN, ensuring the instrument addresses their communication access needs.

Place, publisher, year, edition, pages
Elsevier, 2025
Keywords
Augmentative and alternative communication, Communication, Disability, Measurement, Mental health, Wellbeing
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:hj:diva-67068 (URN)10.1016/j.jcomdis.2025.106494 (DOI)39823774 (PubMedID)2-s2.0-85214895836 (Scopus ID)HOA;intsam;994374 (Local ID)HOA;intsam;994374 (Archive number)HOA;intsam;994374 (OAI)
Available from: 2025-01-20 Created: 2025-01-20 Last updated: 2025-01-24Bibliographically approved
Danielsson, H., Imms, C., Ivarsson, M., Almqvist, L., Lundqvist, L.-O., King, G., . . . Granlund, M. (2024). A systematic review of longitudinal trajectories of mental health problems in children with neurodevelopmental disabilities. Journal of Developmental and Physical Disabilities, 36(2), 203-242
Open this publication in new window or tab >>A systematic review of longitudinal trajectories of mental health problems in children with neurodevelopmental disabilities
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2024 (English)In: Journal of Developmental and Physical Disabilities, ISSN 1056-263X, E-ISSN 1573-3580, Vol. 36, no 2, p. 203-242Article, review/survey (Refereed) Published
Abstract [en]

To review the longitudinal trajectories – and the factors influencing their development – of mental health problems in children with neurodevelopmental disabilities. Systematic review methods were employed. Searches of six databases used keywords and MeSH terms related to children with neurodevelopmental disabilities, mental health problems, and longitudinal research. After the removal of duplicates, reviewers independently screened records for inclusion, extracted data (outcomes and influencing factors), and evaluated the risk of bias. Findings were tabulated and synthesized using graphs and a narrative. Searches identified 94,662 unique records, from which 49 publications were included. The median publication year was 2015. Children with attention deficit hyperactivity disorder were the most commonly included population in retrieved studies. In almost 50% of studies, trajectories of mental health problems changed by < 10% between the first and last time point. Despite multiple studies reporting longitudinal trajectories of mental health problems, greater conceptual clarity and consideration of the measures included in research is needed, along with the inclusion of a more diverse range of populations of children with neurodevelopmental disabilities.

Place, publisher, year, edition, pages
Springer, 2024
Keywords
Adolescents, Children, Disability, Longitudinal, Mental health, Trajectories
National Category
Pediatrics Psychology
Identifiers
urn:nbn:se:hj:diva-60425 (URN)10.1007/s10882-023-09914-8 (DOI)000989885900001 ()2-s2.0-85159692027 (Scopus ID)HOA;intsam;881199 (Local ID)HOA;intsam;881199 (Archive number)HOA;intsam;881199 (OAI)
Funder
Swedish Research Council, 2018-05824
Available from: 2023-05-24 Created: 2023-05-24 Last updated: 2024-04-10Bibliographically approved
Shi, L. J., Granlund, M., Zhao, Y. & Huus, K. (2024). Construct validity of the simplified Chinese version of the instrument ‘Picture My Participation’. Scandinavian Journal of Occupational Therapy, 31(1), Article ID 2348816.
Open this publication in new window or tab >>Construct validity of the simplified Chinese version of the instrument ‘Picture My Participation’
2024 (English)In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 31, no 1, article id 2348816Article in journal (Refereed) Published
Abstract [en]

Background

Preliminary evidence of the content validity of the simplified Chinese version of ‘Picture My Participation’ (PMP-C; Simplified) items and reliability of the subscale attendance for the effectiveness of the use with children and youth in mainland China has been collected. However, evidence of construct validity for the instrument is not yet available.

Aim

To explore the construct validity of the attendance scale in PMP-C (Simplified).

Methods

A cross-sectional study using convenience sampling was conducted using PMP-C (Simplified) with a picture-supported interview for 290 children and youths aged 5–21 with and without ID in urban and rural areas of mainland China. Exploratory factor analysis (EFA) was performed using the principal component analysis (PCA) to analyse the resulting data.

Results

The EFA extracted five factors with eigenvalues greater than one and the cumulative contribution rate of factors accounted for 51.62% of the variance. All items had factor loadings above 0.50. The five subcomponents included: organised activities, social activities, taking care of others, family life activities and personal care and development activities.

Conclusion

The results of the factor analysis support the construct validity of the PMP-C (Simplified) attendance scale. It provides further psychometric evidence that PMP-C (Simplified) is a sound measure to assess participation for children and youths in mainland China.

Place, publisher, year, edition, pages
Taylor & Francis, 2024
Keywords
China, disabled children, participation, everyday activities, self-report
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-62533 (URN)10.1080/11038128.2024.2348816 (DOI)001217900800001 ()38728597 (PubMedID)2-s2.0-85192806825 (Scopus ID)GOA;;62533 (Local ID)GOA;;62533 (Archive number)GOA;;62533 (OAI)
Note

Included in doctoral thesis in manuscript form.

Available from: 2023-09-25 Created: 2023-09-25 Last updated: 2024-05-23Bibliographically approved
Yang, Y.-J., Granlund, M., Tao, F.-B., Tao, S.-M., Zou, L.-W., Enskär, K., . . . Hong, J.-F. (2024). Exploring the relationship between depressive symptoms, problematic smartphone use, and cumulative risk factors in nursing students: A cross sectional study. Acta Psychologica, 249, Article ID 104430.
Open this publication in new window or tab >>Exploring the relationship between depressive symptoms, problematic smartphone use, and cumulative risk factors in nursing students: A cross sectional study
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2024 (English)In: Acta Psychologica, ISSN 0001-6918, E-ISSN 1873-6297, Vol. 249, article id 104430Article in journal (Refereed) Published
Abstract [en]

Background: No single risk factor is decisive in shaping an individual's healthy development. This study aimed to analyze the relationship between depressive symptoms and a cumulative risk index comprising individual, family, and social variables among nursing students.

Methods: We enrolled 1716 Chinese nursing students from three universities in a paperless survey that assessed a range of individual, family, and social risk factors associated with depressive symptoms. Multiple risk analysis was conducted to create a composite risk score for each individual. A test for trend was employed to assess the relationship between the multiple risk classification and depressive symptoms individually. Additionally, a 2-step cluster analysis and χ2 tests were used to examine the relationship between the different clusters and the level of depressive symptoms.

Results: The mean scores of depressive symptoms increased significantly as the number of risk factors increased, regardless of their combination. As the number of risk factors increased, the proportion of nursing students in the normal group decreased, while the proportion in the group with depressive symptoms of varying severity tended to increase (P < 0.001). A high-risk cluster characterized by poor sleep quality combined with problematic smartphone use was associated with higher levels of depressive symptoms (P < 0.001).

Conclusion: Based on these findings that cumulative exposure to multiple risk factors is more harmful than cumulative exposure to fewer risk factors, then interventions that isolate only one risk factor are less likely to be effective than those that are multifaceted.

Place, publisher, year, edition, pages
Elsevier, 2024
Keywords
Cluster analysis, Cumulative risk factors, Depressive symptoms, Nursing students
National Category
Substance Abuse Psychology
Identifiers
urn:nbn:se:hj:diva-66116 (URN)10.1016/j.actpsy.2024.104430 (DOI)001302144100001 ()39178496 (PubMedID)2-s2.0-85201760129 (Scopus ID)HOA;intsam;969828 (Local ID)HOA;intsam;969828 (Archive number)HOA;intsam;969828 (OAI)
Available from: 2024-09-04 Created: 2024-09-04 Last updated: 2024-09-11Bibliographically approved
Hsieh, Y.-H., Granlund, M., Hwang, A.-W. & Hemmingsson, H. (2024). Feasibility of an eye-gaze technology intervention for students with severe motor and communication difficulties in Taiwan. Augmentative and Alternative Communication: AAC, 40(3), 196-207
Open this publication in new window or tab >>Feasibility of an eye-gaze technology intervention for students with severe motor and communication difficulties in Taiwan
2024 (English)In: Augmentative and Alternative Communication: AAC, ISSN 0743-4618, E-ISSN 1477-3848, Vol. 40, no 3, p. 196-207Article in journal (Refereed) Published
Abstract [en]

Eye-gaze technology provides access to a computer through the control of eye movements, thus allowing students with severe motor and communication difficulties to communicate and participate in curriculum activities and leisure; however, few studies have investigated whether any challenges exist to its implementation. This study examines the feasibility for teachers, parents, and therapists of applying an eye-gaze technology intervention for students with severe motor and communication difficulties in everyday settings. A mixed-method design was applied, focusing on the acceptability, demands, implementation, and practicality of the technology applications. Data was collected from 16 participants who assisted five students using eye-gaze technology in a previous 6-month intervention. The intervention comprised (a) use of eye-gaze devices with individualized content; and (b) services including training in use, team meetings, and bi-monthly support on implementation problems. The results showed that the participants perceived the technology as appropriate to enhance interaction and understanding of the students' learning and communication messages. Portable and easy-to-adjust systems were crucial to apply eye-gaze technology in different contexts. Improving eye-gaze services was required to afford in-service education, follow-up services, and loaning programs for sustainable implementation. The facilitators and barriers could guide researchers and practitioners to enhance the implementation of eye-gaze technology.

Place, publisher, year, edition, pages
Taylor & Francis, 2024
Keywords
Acceptability, gaze-controlled computer, implementation, participation, students with severe disabilities
National Category
Human Computer Interaction Occupational Therapy
Identifiers
urn:nbn:se:hj:diva-63269 (URN)10.1080/07434618.2023.2288837 (DOI)001123540400001 ()38085526 (PubMedID)2-s2.0-85179656221 (Scopus ID)HOA;intsam;926111 (Local ID)HOA;intsam;926111 (Archive number)HOA;intsam;926111 (OAI)
Funder
Clas Groschinski Memorial Foundation
Available from: 2024-01-10 Created: 2024-01-10 Last updated: 2024-09-05Bibliographically approved
Ullenhag, A., Imms, C., Anaby, D., Kramer, J. M., Girdler, S., Gorter, J. W., . . . Granlund, M. (2024). How can we reach long-lasting inclusive participation for all?: A vision for the future. Child Care Health and Development, 50(2), Article ID e13249.
Open this publication in new window or tab >>How can we reach long-lasting inclusive participation for all?: A vision for the future
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2024 (English)In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 50, no 2, article id e13249Article in journal (Refereed) Published
Abstract [en]

In 2022, an international conference was held focusing on ‘participation’. We shared current evidence, identified knowledge gaps and worked together to understand what new knowledge and community and practice changes were needed. This brief communication is a summary of the conference delegates' discussions. We present the key assumptions we make about participation and propose what is needed to create change for societies, communities, families and individuals. While we have some robust evidence to support participation approaches, more is needed, and it is everyone's responsibility to build an inclusive society where participation for all is the reality. 

Place, publisher, year, edition, pages
John Wiley & Sons, 2024
Keywords
childhood disability, disability, interventions, participation, rehabilitation
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:hj:diva-63923 (URN)10.1111/cch.13249 (DOI)001189850900001 ()38523460 (PubMedID)2-s2.0-85188475795 (Scopus ID)HOA;intsam;944428 (Local ID)HOA;intsam;944428 (Archive number)HOA;intsam;944428 (OAI)
Available from: 2024-04-02 Created: 2024-04-02 Last updated: 2024-04-02Bibliographically approved
Hsieh, Y.-H., Granlund, M., Odom, S. L., Hwang, A.-W. & Hemmingsson, H. (2024). Increasing participation in computer activities using eye-gaze assistive technology for children with complex needs. Disability and Rehabilitation: Assistive Technology, 19(2), 492-505
Open this publication in new window or tab >>Increasing participation in computer activities using eye-gaze assistive technology for children with complex needs
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2024 (English)In: Disability and Rehabilitation: Assistive Technology, ISSN 1748-3107, E-ISSN 1748-3115, Vol. 19, no 2, p. 492-505Article in journal (Refereed) Published
Abstract [en]

PURPOSE: Eye-gaze assistive technology offers children with severe motor and communication difficulties the opportunity to access and control a computer through eye movements. The aim of this study was to examine the impact of eye-gaze assistive technology intervention on participation in computer activities and technology usability among children with complex needs in Taiwan.

MATERIALS AND METHODS: This study involved a multiple baseline design across individuals. The participants were four children aged three to six years with severe motor and communication difficulties and low eye-control skills. The six-month intervention consisted of two collaborative team meetings and 12 individual supports to facilitate the use of eye-gaze assistive technology at home or in educational environments. Participation in computer activities (diversity, frequency, and duration) was repeatedly measured through a computer use diary. Other outcomes included assessments of goal achievements and parents/teachers' ratings on children's performance in computer activities.

RESULTS: The young children increased the diversity of their computer activities and their frequency and duration of computer use from baseline to the intervention phase. The children attained six of eight predefined goals related to play, communication, and school learning. Parents and teachers perceived the children's changes in performance as meaningful.

CONCLUSION: This study strengthens the evidence that eye-gaze assistive technology is useful in everyday contexts for children with complex needs in Taiwan. The findings add knowledge that children with weak eye-control skills increased participation in computer activities as a result of the eye-gaze assistive technology.

Implications for Rehabilitation

  • Eye-gaze assistive technology (EGAT) as an access method to control a computer can provide opportunities for children with severe motor and communication difficulties to participate in computer activities.
  • Children with severe motor and communication difficulties and low eye-control skills with sufficient practice can learn to use EGAT for communication and learning, with support from stakeholders and collaborative service.
  • EGAT could be introduced for children with complex needs at early ages as a means of using computers for play, communication, and school learning, which could be helpful for later education and learning.
  • Stakeholders in educational environments could include EGAT in educational computer systems so that pupils with severe motor and communication difficulties could interact with a computer, thereby enhancing their engagement and learning.
Place, publisher, year, edition, pages
Taylor & Francis, 2024
Keywords
Communication, computer usage, eye-gaze controlled computer, learning, participation, play, severe motor and speech impairments
National Category
Pediatrics
Identifiers
urn:nbn:se:hj:diva-58038 (URN)10.1080/17483107.2022.2099988 (DOI)000828584600001 ()35861506 (PubMedID)2-s2.0-85134621223 (Scopus ID)HOA;intsam;822870 (Local ID)HOA;intsam;822870 (Archive number)HOA;intsam;822870 (OAI)
Funder
Clas Groschinski Memorial FoundationKempe-Carlgrenska FoundationStiftelsen Folke Bernadottes minnesfondHelge Ax:son Johnsons stiftelse
Available from: 2022-07-25 Created: 2022-07-25 Last updated: 2024-02-22Bibliographically approved
Østvik, J., Granlund, M. & Seim, A. R. (2024). Mental health and mental health problems among users of AAC: a scoping review. Augmentative and Alternative Communication: AAC
Open this publication in new window or tab >>Mental health and mental health problems among users of AAC: a scoping review
2024 (English)In: Augmentative and Alternative Communication: AAC, ISSN 0743-4618, E-ISSN 1477-3848Article, review/survey (Refereed) Epub ahead of print
Abstract [en]

Functional communication is crucial for mental health and for coping with mental health problems. People with disabilities are at increased risk of mental health problems, and people who use augmentative and alternative communication (AAC) are reported to be at greater risk of depression and anxiety than people without impairments. This scoping review summarizes existing knowledge about the mental health and mental health problems of people who use AAC. The review includes nine publications, published between 2001 and 2022. These mainly report on adults and elderly people who use AAC. Four of the nine publications included people who use AAC due to acquired impairments. None of the studies reported the prevalence of mental health problems and only a few addressed factors of positive mental health. The results indicate a shortage of theoretical accounts for most of the publications included, and the publications are not built on each other. The scarcity of knowledge is discussed in relation to the idea that the need for communicative support is a need based on communicative functioning rather than any diagnostic category and thus not visible in much of the health literature based on diagnostic categories. Several implications for practice and research are suggested.

Place, publisher, year, edition, pages
Taylor & Francis, 2024
Keywords
Mental health, augmentative and alternative communication, mental health problems, scoping review, well-being
National Category
Psychiatry
Identifiers
urn:nbn:se:hj:diva-66897 (URN)10.1080/07434618.2024.2434680 (DOI)001382102000001 ()39710864 (PubMedID)2-s2.0-85212831489 (Scopus ID)HOA;intsam;991255 (Local ID)HOA;intsam;991255 (Archive number)HOA;intsam;991255 (OAI)
Available from: 2025-01-06 Created: 2025-01-06 Last updated: 2025-01-06
Taljedal, T., Granlund, M., Osman, F., Selinus, E. N. & Fangstrom, K. (2024). Parenting children with disabilities in Sweden: a cluster-analysis of parenting stress and sufficiency of informal and formal support. Frontiers in Psychology, 15, Article ID 1389995.
Open this publication in new window or tab >>Parenting children with disabilities in Sweden: a cluster-analysis of parenting stress and sufficiency of informal and formal support
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2024 (English)In: Frontiers in Psychology, E-ISSN 1664-1078, Vol. 15, article id 1389995Article in journal (Refereed) Published
Abstract [en]

Objective To investigate patterns of parenting stress and access to sufficient informal and formal support among parents of children with disabilities. To explore whether child cognitive level, conduct problems and the need of language interpretation in contacts between parents and professionals are associated with patterns of parenting stress and support.Method Parents (N = 140) of children with disabilities in Sweden completed a questionnaire about parenting stress and support. Patterns of three variables-parenting stress and access to sufficient informal and formal support-were investigated using cluster analysis. The relationship of child cognitive level, level of conduct problems and of language interpretation needs between parents and professionals to cluster membership was explored using multinomial logistic regression.Results Five different clusters of parenting stress and support emerged. Parents in cluster 1 had lower than sample mean ratings on all three variables. Cluster 2 had elevated parenting stress, cluster 3 had elevated insufficient informal support and cluster 4 had elevated insufficient formal support. Cluster 5 had elevated ratings on all three variables. Greater child cognitive difficulties increased the likelihood of parent membership in cluster 2 (elevated stress), cluster 3 (elevated insufficient informal support), or cluster 5 (elevated ratings on all variables). Child conduct problems increased the likelihood of membership in cluster 2 (elevated stress) or cluster 5 (elevated ratings on all variables). No relationship between language interpretation needs and cluster membership was found.Conclusions Patterns of parenting stress and sufficiency of support, and their associations with child characteristics, vary substantially. However, families of children with conduct problems experiencing elevated parenting stress in combination with insufficient informal and formal support, may be particularly vulnerable. The results of the current study highlight the clinical importance of exploring and identifying individual parenting stressors and perceived levels of support, to be able to adapt services to better suit a variety of needs, and thus promote equitable care.

Place, publisher, year, edition, pages
Frontiers Media S.A., 2024
Keywords
disabled children, parenting stress, informal support, formal support, person-oriented analysis
National Category
Psychology
Identifiers
urn:nbn:se:hj:diva-65447 (URN)10.3389/fpsyg.2024.1389995 (DOI)001246957800001 ()38882520 (PubMedID)2-s2.0-85195890335 (Scopus ID)GOA;;959698 (Local ID)GOA;;959698 (Archive number)GOA;;959698 (OAI)
Funder
Swedish Research Council, 2018-05824
Available from: 2024-06-27 Created: 2024-06-27 Last updated: 2024-06-27Bibliographically approved
Kilgour, G., Lu, A., Kozelj, N., Tracy, J., Hickey, L., Granlund, M., . . . Imms, C. (2024). Participating together in CP-ACHIEVE: Experiences, opportunities and reflections from a collaborative research team of people with lived experience of cerebral palsy and health care professionals. Childhood, 31(3), 407-426
Open this publication in new window or tab >>Participating together in CP-ACHIEVE: Experiences, opportunities and reflections from a collaborative research team of people with lived experience of cerebral palsy and health care professionals
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2024 (English)In: Childhood, ISSN 0907-5682, E-ISSN 1461-7013, Vol. 31, no 3, p. 407-426Article in journal (Refereed) Published
Abstract [en]

The Australian Centre for Health, Independence, Economic participation and Value Enhanced care for adolescents and young adults with Cerebral Palsy (CP-ACHIEVE) is a Centre of Research Excellence (CRE), funded for 5-year by the National Health and Medical Research Council of Australia. The vision of CP-ACHIEVE is an Australia where people with cerebral palsy receive excellent healthcare throughout their lives and live in, and contribute to, supportive communities that welcome and enable their participation. CP-ACHIEVE began with the ethical commitment to bring together people with lived experience of cerebral palsy, researchers, and health professionals to develop and conduct research informed by, and relevant to, people with cerebral palsy and their allies. From inception, co-research and collaboration with (not 'to' or 'about') young people with cerebral palsy (10 to 30 years of age) and their families has been central to our work. In this paper, we describe the CP-ACHIEVE values, structure and strategy for this approach, and its implementation at each stage of the research process. We then provide an example of the strategy in action, using a qualitative exploration of CP-ACHIEVE's Participation Theme team's experiences of collaboration and involvement as co-researchers. Active participation in research for young people with lived experience of cerebral palsy and their families is a fundamental human right, based on their right to be active agents in decisions that affect them. In this paper we explore how our collaborative approach, and the integration of diverse views, has enhanced the relevance, quality, usefulness, and translation of our research. We also describe (i) the structural elements of our research group that have facilitated our work together, (ii) our challenges, and (iii) how the ownership of our research by people with cerebral palsy is driving future research directions and empowering involvement of people with lived experience beyond CP-ACHIEVE. We offer this knowledge and our experiences to assist other research teams in their journeys towards collaborative research alongside people with lived experience of disability.

Place, publisher, year, edition, pages
Sage Publications, 2024
Keywords
Cerebral palsy, participation, collaborative research, co-research, involvement, patient and public involvement, children, young people
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-66087 (URN)10.1177/09075682241269682 (DOI)001293991300001 ()2-s2.0-85202465341 (Scopus ID)HOA;intsam;969083 (Local ID)HOA;intsam;969083 (Archive number)HOA;intsam;969083 (OAI)
Available from: 2024-09-02 Created: 2024-09-02 Last updated: 2025-01-12Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0001-9597-039X

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