The Lived Experience of Parents of Children with Sickle Cell Disease: A Qualitative Study

Ali, Raeda M. Abu; Razeq, Nadin M. Abdel

doi:10.4236/ojn.2017.711097

Cited by 13 publications

(12 citation statements)

References 24 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Preventive programs such as genetic screening for SCD or carrier state before marriage or pregnancy is one of the most effective means of reducing the burden of SCD [ 26 ]. Unfortunately, Ali and Razeq noted that caregivers of children with SCD in their study did not know their carrier status, until the first diagnosis of their children [ 27 ]. One reason for the inadequate knowledge on the cause of SCD could be the inadequacy of genetic counseling, which is intended to provide empirical information about genetics to help individuals understand the impact of a genetic diagnosis on their life and that of their children.…”

Section: Discussionmentioning

confidence: 99%

Sickle Cell Disease in Children: Knowledge and Home-Based Management Strategies among Caregivers at a Tertiary Facility in Northern Ghana

Ajinkpang

Anim-Boamah

Bimpong

et al. 2022

BioMed Research International

View full text Add to dashboard Cite

Sickle cell disease (SCD) is a serious genetic and inherited disorder. It has a physical, psychological, and socioeconomic impact on affected individuals including children and families. Globally, about 275,000 children are born annually with SCD, with an estimated 85% of these births being in Africa. In Ghana, an estimated 2% of infants that were screened were affected by SCD. Although extensive studies have been conducted on the burden on parents of children with SCD, little is known about how parents manage the disease among their children at home in our setting. This qualitative study explored the knowledge of caregivers of children with SCD, how they recognize/monitor complications of the disease and management strategies at home. An explorative qualitative study using the nonprobability purposive method was used to interview fourteen (14) caregivers of children with SCD who were recruited from the Tamale Teaching Hospital. In-depth interviews using an interview guide was used. A tape recorder was used to record each interview yielding a total of fourteen (14) audios. Audiotapes were transcribed verbatim. Data collected during these interviews were analyzed using inductive thematic content analysis. Caregivers have adequate knowledge of the signs and symptoms of SCD, its complications, and the various types their children have but fall short of knowledge on the cause of SCD. Knowledge acquired on SCD does not translate into caregivers’ ability to effectively identify and monitor crises or complications at home. Home management strategies used by caregivers’ were both pharmacological and nonpharmacological, and some used the combination to manage pain and monitor the health of their children. Even though the majority have used traditional medicine before, they prefer orthodox interventions which they consider more effective.

show abstract

Section: Discussionmentioning

confidence: 99%

Sickle Cell Disease in Children: Knowledge and Home-Based Management Strategies among Caregivers at a Tertiary Facility in Northern Ghana

Ajinkpang

Anim-Boamah

Bimpong

et al. 2022

BioMed Research International

View full text Add to dashboard Cite

show abstract

“…Furthermore, this causes inconveniences for the family or caretakers of the patient, particularly since most of the patients hail from poor families and come from distant villages and towns. A recent study from Jordan has shown that caregivers, mainly parents, of SCD pediatric patients indeed suffer from many psychological and physical hardships [36]. Parents of these children, particularly the mothers, endure enormous strains and difficulties.…”

Section: Discussionmentioning

confidence: 99%

Management of Sickle Cell Disease Pain among Adolescent and Pediatric Patients

et al. 2019

View full text Add to dashboard Cite

Management of sickle cell pain in adolescent and pediatric patients is inadequate, and the employment of proper management guidelines and practices are highly variable among different regions and populations. APPT, the multidimensional adolescent pediatric pain tool, promotes optimal pain management and introduces best practical guidelines for pain management. The goal of this study is to assess pain and pain management among young patients diagnosed with sickle cell disease (SCD) by introducing the APPT as a tool for pain management, and analyze factors contributing to pain management. Information relevant to demographic data, SCD characteristics, APPT assessment, and satisfaction of patients regarding pain management were collected using a structured questionnaire. Results showed that SCD is highly associated with gender (p = 0.022), consanguinity (p = 0.012), and number of surgeries (p = 0.013). Most patients (58.9%) indicated the involvement of more than six body areas affected during pain crisis. Severe pain was described by more than half the patients (55.6%), while moderate pain was reported by 31.1%. Most patients described their pain by sensory, affective, and temporal words. The number of painful areas, pain intensity, and use of descriptive pain words was correlated and interpreted by age, BMI, school absence, and number of surgeries. Results of this study could provide guidance to healthcare providers to improve current practices for SCD pain management in order to improve health outcomes and patients’ satisfaction.

show abstract

“…Although the surgery is done in Ghana, it is often a challenge due to perceived toxicity, lack of suitable donors and the cost involved. 6 7 …”

Section: Introductionmentioning

confidence: 99%

Burden experienced by informal caregivers of children with sickle cell disease (SCD): a qualitative exploratory study at Tamale Teaching Hospital, Ghana

et al. 2023

View full text Add to dashboard Cite

ObjectiveThis study sought to explore the burden experienced by informal caregivers in caring for their children with sickle cell disease (SCD).DesignA qualitative exploratory design was employed in the study using in-depth interviews.SettingThe study was conducted at the sickle cell clinic of the Tamale Teaching Hospital, Ghana.ParticipantsData were gathered from 15 purposively selected informal caregivers, whose children with SCD received care at the sickle cell clinic of the Tamale Teaching Hospital, using a semistructured in-depth interview guide in May–June 2021. Their responses were audio-taped, transcribed and analysed using the reflexive thematic analysis approach.ResultsFive major themes emerged from data analysis. These were: the burden of children’s ill-health; financial burden; employment challenges; psychosocial burden and determinants of caregivers’ burden. These burdens destabilised the personal lives, financial standing, social relationships, and employment of caregivers in general and that of other immediate family members, thus, impacting family processes and health.ConclusionsHealth professionals must devise strategies for counselling, early diagnosis and effective management of children with SCD across Ghana. The Ministry of Health must subsidise medications and laboratory services for children with SCD to help minimise the financial burden on caregivers. Further, counselling and psychological support services must be established in hospitals to assist caregivers to cope effectively.

show abstract

The Lived Experience of Parents of Children with Sickle Cell Disease: A Qualitative Study

Cited by 13 publications

References 24 publications

Sickle Cell Disease in Children: Knowledge and Home-Based Management Strategies among Caregivers at a Tertiary Facility in Northern Ghana

Sickle Cell Disease in Children: Knowledge and Home-Based Management Strategies among Caregivers at a Tertiary Facility in Northern Ghana

Management of Sickle Cell Disease Pain among Adolescent and Pediatric Patients

Burden experienced by informal caregivers of children with sickle cell disease (SCD): a qualitative exploratory study at Tamale Teaching Hospital, Ghana

Contact Info

Product

Resources

About