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Being young and physically impaired: voicing the needs and challenges of children, adolescents, and their carers in northeastern Tanzania
Umeå University, Faculty of Medicine, Department of Epidemiology and Global Health.ORCID iD: 0000-0002-9234-7364
2025 (English)Doctoral thesis, comprehensive summary (Other academic)Alternative title
Att vara ung och leva med rörelsenedsättning : att ge röst åt behoven och utmaningarna för barn, ungdomar och deras vårdgivare i nordöstra Tanzania (Swedish)
Abstract [en]

Background: In Tanzania, 13% of families have a member with a disability, presenting unique challenges for entire household. Despite its complexity, disability is often overlooked in development and research agendas. However, disability has gained significant attention over the past decade, particularly with its integration in the 2030 sustainable development goals that were adopted by all United Nations member states in 2015. These goals are intended to promote inclusion and equal opportunities for all, including young people with disabilities. Nevertheless, young people with physical disabilities face considerable barriers to participation in society, driven by negative norms, discrimination, and stigma. This population remains underrepresented in research, and there is a significant gap in public health knowledge, particularly in resource-poor settings. This thesis aims to describe and explore the needs and challenges associated with being young and having a physical disability, drawing on the perspectives of children, adolescents, and young adults with disabilities – along with their families and carers – in northeastern Tanzania.

Methods: The research was conducted in the Kilimanjaro region of northeastern Tanzania, using both qualitative and quantitative methods. A quantitative survey was completed by the primary carers (aged 18 years or older) of 212 children and adolescents with physical disabilities, aged between 2 and 18 years. The data collected during the survey were analysed in Studies I and III. The SurveyCTO software was used to collect data electronically via a questionnaire. The questionnaire was developed based on the International Classification of Functioning, Disability, and Health (ICF) framework. Statistical analysis (Studies I and III) was performed using IBM SPSS version 28. For the qualitative aspect of the research, Study II employed constructivist grounded theory, while Study IV analysed the experiences of adolescents and young adults regarding inclusion using reflexive thematic analysis.

Results: Children and adolescents with physical disabilities have significant difficulties with walking, self-care, and participating in social activities, household chores, and schooling. Furthermore, they were reported needing assistive devices, therapeutic exercises, and nutritional support. Regarding essential services, most families lived near health facilities that did not provide rehabilitation services. Additionally, a quarter of the children and adolescents with physical disabilities had never received any rehabilitation service. More than two thirds did not have health insurance. The carers faced psychological challenges, with over half of the 212 carers surveyed reporting poor psychological wellbeing, and 42% and 38% describing symptoms of anxiety and depression, respectively. Support from extended family members was linked to better psychological wellbeing and a lower likelihood of experiencing anxiety and depression. Support systems, particularly via social networks, were crucial in helping families meet basic needs and ensure the safety of vtheir children. The adolescents and young adults, however, reported feeling marginalised, facing significant barriers to full societal integration, and experiencing an uncertain future with little hope.

Conclusion: This thesis found significant activity limitations among children and adolescents with physical disabilities in areas such as walking, self-care, communication, and participation in social activities, household chores, and schooling. Access to essential services, particularly healthcare, is inadequate, or in many cases impossible to access. Adolescents and young adults face both present and future barriers to full inclusion in society, and families are constantly adapting to meet the challenging needs of their children, with carers experiencing a considerable psychological burden. To address these challenges, it is crucial for the Ministry of Health to strengthen rehabilitation services within primary healthcare settings. Health-insurance reforms are also necessary to ensure the societal inclusion of young people with disabilities. Public-awareness campaigns that highlight the potential of people with disabilities and promote inclusion are crucial for supporting social networks and challenging negative societal norms. 

Place, publisher, year, edition, pages
Umeå: Umeå University, 2025. , p. 66
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 2349
Keywords [en]
Physical disability, adolescents, young adults, challenges, disability related needs, rehabilitation, carers, Tanzania, Kilimanjaro region, young people
National Category
Public Health, Global Health and Social Medicine
Research subject
Public health; Social Medicine
Identifiers
URN: urn:nbn:se:umu:diva-237922ISBN: 978-91-8070-644-5 (print)ISBN: 978-91-8070-645-2 (electronic)OAI: oai:DiVA.org:umu-237922DiVA, id: diva2:1953870
Public defence
2025-05-22, Alicante, NUS By 5B. Plan 3, Umeå Universitetssjukhus, Umeå, 09:00 (English)
Opponent
Supervisors
Available from: 2025-04-30 Created: 2025-04-23 Last updated: 2025-04-25Bibliographically approved
List of papers
1. Children and adolescents with physical disabilities: describing characteristics and disability-related needs in the Kilimanjaro region, north-eastern Tanzania – a cross-sectional survey
Open this publication in new window or tab >>Children and adolescents with physical disabilities: describing characteristics and disability-related needs in the Kilimanjaro region, north-eastern Tanzania – a cross-sectional survey
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2023 (English)In: BMJ Open, E-ISSN 2044-6055, Vol. 13, no 1, article id e064849Article in journal (Refereed) Published
Abstract [en]

Objectives: To describe the characteristics and disability-related needs of children and adolescents with physical disabilities in the Kilimanjaro region, North-Eastern Tanzania.

Design: A cross-sectional community survey was conducted from November 2020 to June 2021. Trained research assistants interviewed primary children’s carers using a questionnaire based on the International Classification of Functioning, Disability and Health-Children and Youth Framework. Data were analysed using IBM SPSS Statistics V.27. The Pearson χ2 test was used to examine differences between age, gender and self-reported needs. The independent t-test assessed difference in needs according to age and gender.

Setting: Kilimanjaro region, Tanzania.

Participants: Children and adolescents, aged 2–18 years, with physical disabilities (n=212).

Results: Almost 40% had severe speech (n=84) and joint mobility (n=79) impairments, and more than half (n=124) had severe or complete difficulties walking. In aspects of self-care (caring for body parts, toileting, dressing, eating and drinking), most had severe and complete difficulties. Almost 70% (n=135) of households were located near health facilities without rehabilitation services. About one-quarter (n=51) had never received rehabilitation services. More than 90% (n=196) needed assistive devices, and therapeutic exercises (n=193). Over three-quarters needed nutritional supplements (n=162).

Conclusion: Children and adolescents with physical disabilities in North-Eastern Tanzania have impaired speech and joint mobility, and difficulties in communication, self-care and walking. Rehabilitation services essential for addressing these impairments and activity limitations are either scarce or inaccessible. Action is needed to facilitate urban and rural access to rehabilitation services in order to improve the well-being of children and adolescents with physical disabilities.

Place, publisher, year, edition, pages
BMJ Publishing Group Ltd, 2023
National Category
Pediatrics
Research subject
Public health
Identifiers
urn:nbn:se:umu:diva-203833 (URN)10.1136/bmjopen-2022-064849 (DOI)000924512900004 ()36592996 (PubMedID)2-s2.0-85145491645 (Scopus ID)
Funder
Familjen Erling-Perssons StiftelseUmeå University
Available from: 2023-01-20 Created: 2023-01-20 Last updated: 2025-04-23Bibliographically approved
2. Adaptive adjustment to the needs of families caring for children and adolescents with physical disabilities in north-eastern Tanzania: a grounded-theory study
Open this publication in new window or tab >>Adaptive adjustment to the needs of families caring for children and adolescents with physical disabilities in north-eastern Tanzania: a grounded-theory study
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2024 (English)In: Global Health Action, ISSN 1654-9716, E-ISSN 1654-9880, Vol. 17, no 1, article id 2354009Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Family interactions, which are always multi-faceted, are complicated further by family members with disabilities. In resource-poor settings, policies and programmes that address the needs of and challenges faced by families are often inaccessible or unavailable. Approximately 13% of the families in Tanzania have at least one member with a disability, yet family-centred research on caring for disabled children and adolescents is scarce in this context.

OBJECTIVE: The aim is to explore the needs and challenges faced by families that care for children and adolescents with physical disabilities in the Kilimanjaro Region of north-eastern Tanzania.

METHODS: This qualitative study had a constructivist grounded-theory design. In-depth interviews, using a semi-structured interview guide based on the social-capital framework, were conducted with 12 female participants aged between 24 and 80. A conceptual model of family needs, inspired by Maslow's hierarchy of needs, informed the analysis.

RESULTS: Challenging needs were grouped into five categories, which were linked to Maslow's hierarchy of needs and related to the central concept of 'adaptive adjustment': (1) 'barely surviving'; (2) 'safety needs in jeopardy'; (3) 'sociocultural protection'; (4) 'self-esteem far beyond reach', and (5) 'dreaming of self-actualisation'.

CONCLUSION: Families caring for children and adolescents with physical disabilities in north-eastern Tanzania have needs that extend beyond the available and accessible resources. Families can adjust and adapt by avoiding certain situations, accepting the reality of their circumstances and exploring alternative ways of coping. A sustainable support system, including social networks, is essential for meeting basic needs and ensuring safety.

Place, publisher, year, edition, pages
Taylor & Francis, 2024
Keywords
adaptive adjustment, challenging needs, Paediatrics, physical disabilities, public health
National Category
Public Health, Global Health and Social Medicine
Identifiers
urn:nbn:se:umu:diva-225943 (URN)10.1080/16549716.2024.2354009 (DOI)001238292100001 ()38832537 (PubMedID)2-s2.0-85195017237 (Scopus ID)
Funder
Familjen Erling-Perssons Stiftelse
Available from: 2024-06-12 Created: 2024-06-12 Last updated: 2025-04-23Bibliographically approved
3. Psychological wellbeing among carers of children and adolescents with physical disabilities in North-Eastern Tanzania: a cross-sectional survey study
Open this publication in new window or tab >>Psychological wellbeing among carers of children and adolescents with physical disabilities in North-Eastern Tanzania: a cross-sectional survey study
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2024 (English)In: Frontiers in Public Health, E-ISSN 2296-2565, Vol. 12, article id 1437716Article in journal (Refereed) Published
Abstract [en]

Introduction: Caring for physically disabled children, particularly in contexts where resources are often insufficient or absent, exposes primary carers to significant psychological strain. The lack of structured mechanisms to address this psychological burden poses a considerable threat to the wellbeing of both carers and the children with disabilities under their care. However, research on the psychological wellbeing of carers in Tanzania is scarce. This study aimed to evaluate the psychological wellbeing and symptoms of anxiety and depression, along with associated factors, of carers of children, and adolescents with physical disabilities in the Kilimanjaro region.

Methods: A cross-sectional survey was conducted from November 2020 to June 2021 in the Kilimanjaro region, involving 212 carers. The Swahili versions of the WHO-5 Wellbeing Index and Hopkins Symptoms Check List-25 were used to assess psychological wellbeing and symptoms of anxiety and depression. Data were analysed using IBM SPSS Statistics V.28. Multivariable linear and binary logistic regression were used to assess the associations.

Results: More than four fifths (81%) of the carers were parents, and most of these parents were mothers (92%). Of the 212 carers, more than half (51%) exhibited poor psychological wellbeing, 42% had symptoms of anxiety, and 38% symptoms of depression. Notably, poor psychological wellbeing was significantly associated with symptoms of anxiety and depression. Results of a multivariable regression analysis indicated that extended family support was associated with better psychological wellbeing and lower odds of symptoms of anxiety and depression. A higher estimated monthly income was associated with better psychological wellbeing, and lower odds of symptoms of depression. Access to rehabilitation for the child was associated with improved psychological wellbeing and decreased likelihood of symptoms of anxiety.

Conclusion: Many carers of children, and adolescents with physical disabilities in Tanzania are at high risk of having poor psychological wellbeing, and symptoms of anxiety and depression. Support from extended-family networks is crucial in promoting good psychological wellbeing. The government in Tanzania should improve rehabilitation services, especially in disadvantaged rural areas, and integrate mental-health screening for carers in both rehabilitation programmes and primary healthcare.

Place, publisher, year, edition, pages
Frontiers Media S.A., 2024
Keywords
adolescents, anxiety, carers, children, depression, physical disability, psychological wellbeing, Tanzania
National Category
Public Health, Global Health and Social Medicine Nursing
Identifiers
urn:nbn:se:umu:diva-231368 (URN)10.3389/fpubh.2024.1437716 (DOI)001338626900001 ()39444961 (PubMedID)2-s2.0-85207405553 (Scopus ID)
Funder
Familjen Erling-Perssons Stiftelse
Available from: 2024-11-11 Created: 2024-11-11 Last updated: 2025-04-23Bibliographically approved
4. Listening to the voices of adolescents and young adults with physical disabilities: exploring experiences of inclusion in the Kilimanjaro region, northeastern Tanzania
Open this publication in new window or tab >>Listening to the voices of adolescents and young adults with physical disabilities: exploring experiences of inclusion in the Kilimanjaro region, northeastern Tanzania
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(English)Manuscript (preprint) (Other academic)
Abstract [en]

Purpose: To explore the experiences of adolescents and young adults with physical disabilities regarding societal inclusion in the Kilimanjaro region of northeastern Tanzania.

Materials and methods: This qualitative study employed in-depth interviews and a semi-structured interview guide to interview 17 purposively selected adolescents and young adults with physical disabilities. Reflective thematic analysis was used to develop themes and sub-themes.

Results: The phenomenon of 'inclusion' was explored in relation to three main themes: (1) ‘Excluded from society’; (2) ‘Barriers to being part of society’; and (3) ‘Hope and uncertainty about the future’. The interplay between these themes illustrates the participants’ experiences of moving from the present towards the future.

Conclusion: Adolescents and young adults with physical disabilities in northeastern Tanzania face significant challenges in terms of societal inclusion. Societal barriers, which hinder their ability to interact with others in society and create uncertainty about the future, prevent their full inclusion. Hope for a more inclusive society is supported by an accessible and accommodating educational system. Interventions, such as large-scale campaigns to promote inclusion, are essential for fostering a more inclusive society in Tanzania.

Keywords
Adolescents, young adults, inclusion, Tanzania, physical disabilities
National Category
Public Health, Global Health and Social Medicine
Research subject
Public health
Identifiers
urn:nbn:se:umu:diva-237833 (URN)
Funder
Familjen Erling-Perssons Stiftelse
Note

Alternative title: "Listening to the voices of adolescents and young adults with physical impairments: exploring experiences on inclusiveness in the Kilimanjaro region, northeastern Tanzania"

Available from: 2025-04-22 Created: 2025-04-22 Last updated: 2025-04-23Bibliographically approved

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Swai, Elia Asanterabi

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12345672 of 21
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