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      Caregivers’ Experiences with Caring for a Child Living with HIV/AIDS: A Qualitative Study in Northern Ghana

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          Abstract

          With the advent of Anti-Retroviral Therapy, Human Immune Virus, and Acquire Immuno-Deficiency Syndrome is increasingly becoming a chronic disease as life expectancy among People Living With HIV/AIDS has increased. For Children Living With HIV/AIDS the role of the caregivers becomes essential as caregivers’ decisions affect CLWH health. However, the experiences of these caregivers are often unnoticed while all interventions are directed at PLWH. This study aimed at exploring the experiences of caregivers of CLWH in some selected hospitals in northern Ghana. This study employed a qualitative descriptive phenomenological approach. Purposive sampling technique was used to recruit 9 participants from 3 public hospitals in the Tamale Metropolis of Ghana. Data was manually analyzed using the approach of Collaizi and the findings were presented in themes and sub-themes. We conducted individual face to face interviews in English and Dagbani from September to November 2019. These interviews were conducted at the convenience of the participants in hospitals and at their homes. They were introduced to the study while awaiting to take antivirals for their CLWH. Five themes emerged: changed family dynamics, discovery of diagnosis, reaction to diagnosis, disclosure, stigma and discrimination, and burden and challenges of care. Caregivers were severely impacted by caring for CLWH and traumatized by changed family dynamics which exposed them to many difficulties. Stigma was widely perpetrated by immediate family members and majority reacted badly to their children HIV-positive status with fear, shame, guilt and even suicidal ideation.

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          Development of an inventory of goals using the International Classification of Functioning, Disability and Health in a population of non-ambulatory children and adolescents with cerebral palsy treated with botulinum toxin A

          Background In the management of hypertonicity in children with cerebral palsy (CP), goals should be clearly identified in order to evaluate the effectiveness of botulinum toxin A (BoNT-A) treatment, specifically in non-ambulatory children and adolescents, Gross Motor Function Classification System (GMFCS), level IV or V. A retrospective chart review (Mesterman et al., 2013) identified the need for the development of a set of specific and meaningful goals linked to the International Classification of Functioning, Disability and Health (ICF) for future goal setting and evaluation in this population. Our objective is to create an inventory of goals based on the ICF framework that captures the needs and values of families with children with CP. Methods This cross-sectional observational study recruited parents of twenty children and youths with CP in GMFCS levels IV or V (mean age 11.2 years, SD 4.3, 13 males) who were assessed for BoNT-A treatment at the Spasticity Management Clinic at McMaster Children’s Hospital (Hamilton, ON). A previous inventory of goals was developed by a group of experts at a national botulinum toxin conference held in January 2014 (Montreal, Canada). The inventory of goals was further refined by asking the parents to select goals from the inventory list that they would like their child to accomplish after receiving BoNT-A treatment, and asking healthcare professionals for clarity and phrasing of goals in the inventory list. Results All parents identified body structure and function goals, with more than 75% of parents selecting reduction in muscle tone and increased range of movements in the upper and lower extremities. More than 50% of parents identified activity goals related to ease of caregiving. Two activity goals and three participation goals were missing from the inventory. Participation goals were identified by less than 5% of parents. Conclusion The inventory may be a helpful tool to facilitate a discussion about goal setting between healthcare professionals and families in the context of BoNT-A treatment. A future study is needed to conduct qualitative interviews to better understand the information that families may require about setting goals during BoNT-A treatment and to evaluate the usefulness of the inventory. Electronic supplementary material The online version of this article (10.1186/s12887-017-0974-x) contains supplementary material, which is available to authorized users.
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            Quantifying Thematic Saturation in Qualitative Data Analysis

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              Is task-shifting a solution to the health workers’ shortage in Northern Ghana?

              Objective To explore the experiences and perceptions of health workers and implementers of task-shifting in rural health facilities in Upper East Region, Ghana. Methods Data was collected through field interviews. A total of sixty eight (68) in-depth interviews were conducted with health workers’ in primary health care facilities (health centres); Four in-depth interviews with key persons involved in staff management was conducted to understand how task-shifting is organised including its strengths and challenges. The health workers interview guide was designed with the aim of getting data on official tasks of health workers, additional tasks assigned to them, how they perceive these tasks, and the challenges associated with the practice of task-shifting. Findings Task-shifting is a practice being used across the health facilities in the study area to help reduce the impact of insufficient health workers. Generally, health workers had a comprehensive training that supported the organisation of task-shifting. However, staff members’ are sometimes engaged in tasks above their level of training and beyond their actual job descriptions. Adequate training is usually not provided before additional tasks are assigned to staff members. Whilst some health workers perceived the additional tasks they performed as an opportunity to learn new skills, others described these as stressful and overburdening. Conclusion Task-shifting has the potential to contribute to addressing the insufficient health workforce, and thereby improving health delivery system where the procedures are well defined and staff members work in a coordinated and organised manner. The provision of adequate training and supervision for health workers is important in order to improve their expertise before additional tasks are assigned to them so that the quality of care would not be compromised.
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                Author and article information

                Journal
                Glob Pediatr Health
                Glob Pediatr Health
                GPH
                spgph
                Global Pediatric Health
                SAGE Publications (Sage CA: Los Angeles, CA )
                2333-794X
                23 March 2021
                2021
                : 8
                : 2333794X211003622
                Affiliations
                [1 ]Tamale Regional/Central Hospital, Tamale, Ghana
                [2 ]Kwame Nkrumah University of Science and Technology, Kumasi, Ghana
                [3 ]University for Development Studies, School of Nursing and Midwifery, Tamale, Ghana
                [4 ]Midwifery Training College, Upper West Rgion, Tumu-Ghana
                Author notes
                [*]Gideon Awenabisa Atanuriba, Department of Pediatrics, Tamale Regional/Central Hospital, Post Office Box TL 2649, Tamale, Ghana. Email: atanuriba@ 123456gmail.com
                Author information
                https://orcid.org/0000-0002-5674-5613
                https://orcid.org/0000-0003-4534-2568
                Article
                10.1177_2333794X211003622
                10.1177/2333794X211003622
                7995303
                33816712
                4ce25d9c-2e81-4a7c-9138-434271ce3a09
                © The Author(s) 2021

                This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License ( https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

                History
                : 19 February 2021
                : 19 February 2021
                : 24 February 2021
                Categories
                Original Research Article
                Custom metadata
                January-December 2021
                ts1

                experiences,caregivers,hiv/aids,clwh
                experiences, caregivers, hiv/aids, clwh

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