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Mothers’ challenges and experiences of children with cerebral palsy: a qualitative meta-synthesis

By:
Open Access
|Jun 2024

Figures & Tables

Figure 1.

Search strategies for PubMed.
Search strategies for PubMed.

Figure 2.

Flow diagram for selection process.
Note: CINAHL, Cumulative Index to Nursing and Allied Health Literature; CP, cerebral palsy.
Flow diagram for selection process. Note: CINAHL, Cumulative Index to Nursing and Allied Health Literature; CP, cerebral palsy.

Inclusion and exclusion criteria applied to the literature search_

Inclusion criteriaExclusion criteria
Mothers were aged 18 years or above, Children with CP were aged between 0-18 years
Qualitative studies focus on:
Psychological, physical, social challenges faced by mothers of children with CP.Other caregivers’ and health personnel’s experience of the mother role
Mothers’ experiences from first learning of the diagnosis to the whole caring process.Review articles, official reports, book reviews, theoretical articles, dissertations, conference abstracts, and editorials
Mothers’ change and growth in the caring experience.

Themes and subthemes_

ThemesSubthemes
Negative emotionsShock and denialGuilt and blameWorry and sadnessAnxious and uncertainUnfair for childrenDilemmaHelplessness
Burden and challengesPhysical challengesFinancial burdenLimited social participationCareer choices
Social supportFamily supportMarital problemsSocial supportEducation problemsSocial discriminationEnvironment challenges
Actively growing and expectationSelf-regulationReturn to societyAccept and releaseCoordination and investment

Characteristics of included studies_

Author/yearLocation of studyAimSampleData methodsCore findingQuality appraisal (%)
Vadivelan et al.15Tertiary Care Center, Tamil NaduTo understand the physical, psychosocial, financial, and other stressors among caregivers of children with CP10 mothers of children with CPThematic content analysis, semi-structured interview5 main themes
  • Individual stressors

  • Interpersonal stressors

  • Community stressors

  • Environmental stressors

  • Health system and policy stressors

80
Mokhtari and Abootora.16Saba Private Rehabilitation Center, LranTo investigate the experiences of Iranian mothers of children suffering from CP8 mothers of children with CPHermeneutic phenomenology, semi-structured interviews4 main themes
  • Life world existential: Lived body

  • Life world existential: Lived space

  • Life world existential: Lived time

  • Life world existential: Lived relationship

60
Marian et al.17Hospital, NamibiaTo reveal the experience of mothers of children born with CP12 mothers of children with CPPhenomenological, explorative and contextual design, Indepth interviews4 main themes
  • The emotional experiences of mothers

  • Social Support

  • Community acceptance

60
Mohamed Madi and Mandy.18Medical City, Saudi ArabiaTo explore the perceptions of disability among mothers of children with CP6 mothers of children with CPEthnographic, focus groups3 main themes
  • Culture and religion

  • Motherhood and disability

  • Community stigma and discrimination

60
Kurtuncu et al.19Rehabilitation Center, TurkeyTo determine the difficulties experienced by mothers of children with CP and their needs15 mothers of children with CPPhenomenological approach, semi-structured interviews9 main themes
  • Difficult to accept diagnosis

  • Family relationship

  • Relationships between children

  • Care difficulties

  • Educational difficulties

  • Worries About the future

  • Expectations for the future

  • Availability of social support

  • Sexual life

60
Dalvand et al.20Participants’ homes/clinics/school/community, IranTo explore occupations of mothers of children with CP16 mothers of children with CPContent analysis methodology, semi-structured interviews4 main themes
  • Coping with self-care problems

  • Efforts to gain treatment follow-up

  • Coping challenges of educational care

  • Limited parental personal leisure time

60
Dehghan et al.21Clinics, IranTo explore the experience of social participation of mothers of children with CP14 mothers of children with CPContent analysis method, semi-structured interviews.3 main themes
  • Polarization of positive and negative feelings

  • Challenges to mothers’ social activity

  • Striving to engage in society

60
Glasscock.22Clinics, USATo describe the lived experience of being the mother of a child with CP15 mothers of children with CPPhenomenological methods, audiotaped interviews.4 main themes
  • Caregiver burden

  • Family/social support

  • Women’s/mothers’ roles

  • Socioeconomics

70
Huang et al.23Hospital, Taiwan, ChinaTo describe challenging caregiving experiences for mothers providing care for children with CP15 mothers of children with CPHermeneutic phenomenological approach, in-depth interviews and journaling methods4 main themes
  • Experiencing burden as a sole primary caregiver

  • Managing the challenges by balancing demands

  • Being marginalized by others

  • Encountering limited or no professional support

80
Singogo et al.24Townships, Zambia.To explore the challenges of mothers who cared for children with CP16 mothers of children with CPExploratory methodology, semi-structured individual interviews.5 main themes
  • Physical challenges experienced by the mothers

  • Social isolation

  • Perceived causes of CP

  • Physical access challenges

  • Marital problems and challenges with the health care system

70
Milbrath et al.25Care Institution, BrazilTo get to know the adaptation process experienced by a woman, motivated by the birth of a child with CP6 mothers of children with CPDescriptive and exploratory methodology, semi-structured interview.2 main themes
  • Experiencing being a woman-mother of a child with CP

  • Supporting networks necessary to the woman-mother of a child with special needs

50
Power et al.26Clinic, IrishTo study the effect of the child’s communication difficulties on the mother’s life3 mothers of children with CPGrounded theory, semi-structured interview.5 main themes
  • Hardships experienced by the mother

  • Emotional investment in the child’s communication progress

  • Laboring to get the child’s communication going

  • Being consumed with the child’s communication

  • Hardships experienced by the child

60
Huang et al.27Hospital, Taiwan, ChinaTo describe mothers’ experience of learning that their child has been diagnosed with CP15 mothers of children with CPPhenomenological methodology, in-depth interviews and journaling methods.4 main themes
  • Feeling out of control and powerless

  • Mistrusting healthcare professionals

  • Release and confirmation

  • Feeling blamed for not following traditional practices

80
DOI: https://doi.org/10.2478/fon-2024-0018 | Journal eISSN: 2544-8994 | Journal ISSN: 2097-5368
Language: English
Page range: 169 - 179
Submitted on: Apr 5, 2023
Accepted on: Sep 26, 2023
Published on: Jun 26, 2024
Published by: Shanxi Medical Periodical Press
In partnership with: Paradigm Publishing Services
Publication frequency: 4 times per year

© 2024 Meng-Yun Peng, Yi-Fu Lu, published by Shanxi Medical Periodical Press
This work is licensed under the Creative Commons Attribution 4.0 License.