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Experiences of parents and stakeholders in caring for, and supporting children with special needs in Ghana.

ABSTRACT: We studied the caring, parenting, and support services for children with special needs in Ghana. Many of the study participants reported re-adjusting their lives in virtually every domain-social, economic, and emotional to deal with and manage the new realities. How parents navigate this space varied considerably from setting to setting. Regardless of individual and interpersonal resources, community, institutional, and policy circumstances seemed to exacerbate notions of disability. In many instances, parents had a low depth of suspicion about the precursors to disabling events in their children. Parents are constantly pursuing health care, including a cure for their children with disabilities. Views about "otherness" were noted, and these tended to undermine medical interpretations/explanations of disability generally, which in turn affected formal education and health-seeking for children. Institutional arrangements exist to encourage parents to invest in their children regardless of their perceived abilities. However, these do not seem to be sufficient, particularly for health and formal education. Programming and policy implications are highlighted.

SUBMITTER: Amo-Adjei J

PROVIDER: S-EPMC9983829 | biostudies-literature | 2023

REPOSITORIES: biostudies-literature

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Experiences of parents and stakeholders in caring for, and supporting children with special needs in Ghana.

Amo-Adjei Joshua J Essuman Ruth R Nurzhynska Anastasiia A Deliege Antoine A Sharma Geeta G Iddrisu Iddi I Nikoi Charity C

PloS one 20230303 3

We studied the caring, parenting, and support services for children with special needs in Ghana. Many of the study participants reported re-adjusting their lives in virtually every domain-social, economic, and emotional to deal with and manage the new realities. How parents navigate this space varied considerably from setting to setting. Regardless of individual and interpersonal resources, community, institutional, and policy circumstances seemed to exacerbate notions of disability. In many ins ...[more]

PMID: 36867593

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Project description:Background and aimsA high rate of children in mental health services have poor language skills, but little evidence exists on how mental health support is delivered to and received by children with language needs. This study looked at parental experiences, asking parents of children with speech, language and communication needs (SLCN) about their experiences seeking help for their children's mental health. We were particularly interested on the experiences of parents of children with Developmental Language Disorder (DLD), a specific SLCN that remains relatively unknown to the general public.MethodsWe conducted an online survey of 74 parents of children with speech, language and communication needs (SLCN). Survey respondents included parents of children with a range of difficulties, including DLD, autism, verbal dyspraxia, global intellectual delay, a history of hearing problems, and SLCN without a primary diagnosis. Survey respondents were asked what sources of support they had accessed for their child's mental health and to provide comments on what was good and what was not good about this support. We then conducted 9 semi-structured interviews of parents of children with DLD about their experiences. These were parents of children with DLD aged 7 to 17 years, from across a range of educational settings, and with a range of present mental health concerns.ResultsContent analyses of the survey responses from parents of children with SLCN highlighted three broad factors of importance to parents' experiences: relational aspects of care, organisational aspects of care, and professionals' knowledge. Thematic analyses of the interviews of parents of children with DLD identified 5 themes: the effects of language problems on the presentation of distress; the role of the school environment; the role of key professionals; standard approaches to mental health support might not be appropriate; and the role and impact on parents. Parents expressed concerns that their children's mental health problems and need for support would not be recognised, and felt interventions were not accessible, or delivered in a manner that was not comfortable for their children due to high reliance on oral language skills. Some parents were left feeling that there was no provision suitable for their children.ConclusionsParents of children with SLCN face barriers accessing support for their children's mental health, including a lack of professional knowledge about their children's language needs. Parents argued that language and communication needs can significantly affect the delivery and success of psychological therapies and interventions. Systematic research is needed to understand how to successfully adapt services to make them accessible to children and young people with language needs, and to ensure that mental health problems are detected in children with language difficulties. Increased knowledge about language disorders such as DLD, and access to speech and language therapy expertise, is needed amongst professionals who work to support children's mental health.

Project description:PurposeThe COVID-19 pandemic has resulted in a global health crisis of unparalleled magnitude. The direct risk to the health of children is low. However, disease-containment measures have society-wide impacts. This study explored the pandemic experiences of parents of children with oesophageal atresia/tracheo-oesophageal fistula (OA/TOF) in the UK.DesignA phenomenological approach underpinned use of an asynchronous online forum method, in collaboration with a patient support group. Data were evaluated using thematic analysis.ResultsThe online forum ran between 7 November and 18 December 2020 with 109 participants.Pandemic experiences were divided into themes relating to healthcare and disease containment. Participants described positive experiences with remote healthcare but identified limitations. Delays and cancellations led to escalation of care to an emergency level, slower developmental progress and feelings of being abandoned by services. Inpatient care was perceived as safe but caring alone was emotionally and practically challenging. Disease containment themes revealed anxiety regarding health risks, 'collateral' damage to well-being because of isolation, and an impact on finances and employment. Parents described a transition from worry about direct health risks to concern about the impact of isolation on socialisation and development. A process of risk-benefit analysis led some to transition to a more 'normal life', while others continued to isolate. Benefits to their child's health from isolation were reported.ConclusionsParents' experiences of caring for a child with OA/TOF during the pandemic were varied. Rapid adoption of telehealth has demonstrated the enormous potential of remote healthcare delivery but requires refinement to meet the needs of the individual. Future pandemic planning should aim to retain community healthcare services to avoid escalation of care to an emergency, manage chronic and developmental concerns, and support parental well-being. Accurate and consistent disease-specific information is highly valued by parents. Third sector organisations are ideally positioned to support this.

Project description:IntroductionClinical management of rare diseases often fails to acknowledge the challenges faced by caregivers. Whilst management of phenylketonuria (PKU) may not be considered as dire as other conditions, most studies primarily concentrate on clinical issues, dietary adherence, or the quality of life of the PKU patients, leaving caregivers in the background. The aim of the study was to evaluate the psychosocial effects of PKU on family caregivers.MethodsBetween October 30th, 2022 and February 28th, 2023, we collected data from caregivers of children with PKU using an anonymous, self-administered, computer-assisted online questionnaire. The survey was distributed among to patients during their regular visits to five Polish PKU treatment centers.ResultsA total of 159 Polish caregivers of children with PKU completed the survey. This research shows that while women caregivers were more likely to be unemployed due to their responsibilities for childcare (50.3% compared to 0% for men), and men caregivers were more likely to be employed full-time (93.8% compared to 40.6% for women), the former reported higher emotional engagement in caregiving (88.1% vs 56.3% respectively). Significantly, unemployed mothers reported higher levels of loneliness, helplessness, and emotional control problems, and lacked psychological/emotional support more often than employed mothers. This research also shows a statistically significant positive correlation between mothers' education level and financial situation (p < 0.05) and education level and professional activity (p < 0.01). Additionally, a significant positive correlation was found between perceived financial situation and feeling of happiness (p < 0.001), and between financial situation and professional activity (p < 0.001). Finally, a significant positive correlation was observed between feeling of happiness and professional activity (p < 0.05).ConclusionsAccording to our findings, there is a link between subjective happiness, financial situation, and professional activity among female caregivers. The relationship between these factors goes beyond just the income earned from work. The results of our study imply that there could even be a therapeutic advantage for working mothers. It is crucial to recognize the emotional difficulties that employed mothers may experience while taking care of a child with PKU, and to provide them with the necessary assistance and resources to meet their needs. Additionally, our results may provide a foundation for redefining the support system for caregivers in Poland.

Project description:BackgroundBiting objects was a parafunctional oral habit among children with special care needs. Chewing or biting toothbrushes could expedite the process of toothbrush wear. However, few studies evaluated the deterioration levels of toothbrushes used by children with special needs. This study aimed to assess the deterioration level of toothbrushes used by children with special care needs, and collect parents' feedbacks to improve the design of children's toothbrushes.MethodsThe cross-sectional study recruited 277 children who had special care needs. Children's toothbrushing behaviors, background information, and parents' comments on toothbrushes were obtained. Toothbrush deterioration was assessed by bristle wear and bite mark scores. Higher scores indicated severe deterioration.ResultsThree hundred twenty-one toothbrushes were collected. Children who used 2 to 6 toothbrushes in a 3-month period showed higher toothbrush deterioration scores than children who used a single toothbrush. Over 40% children's toothbrushes presented excessive wear. Excessive wear was associated with social skills and parents' education background. Distinct bite marks tended to exist on toothbrushes which had been used by children who showed challenging behaviors during toothbrushing (OR = 1.96, 95%CI1.15-3.32, p < 0.05). Approximately 27% parents reported that children's toothbrushes should be modified. Parents recommended that the size of toothbrush heads, the angle of handles, and the texture/length/distribution/diameter of bristles should be adjusted. Besides, ideal toothbrushes should be able to provide verbal or visual instructions to children, motivate children to brush teeth, simplify toothbrushing procedure, and protect children who had toothbrush-biting habits.ConclusionsExcessive wear and distinct bite marks can be found on toothbrushes that had been used by children with special care needs. Toothbrush deterioration was associated with children's social skills, toothbrushing behaviors, and parents' educational attainment. The commercially available toothbrushes should be modified to meet the additional needs of young children.

Dataset Information

Experiences of parents and stakeholders in caring for, and supporting children with special needs in Ghana.

Publications

Experiences of parents and stakeholders in caring for, and supporting children with special needs in Ghana.

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