scholarly journals Perceptions of parents and healthcare professionals regarding minimal invasive tissue sampling to identify the cause of death in stillbirths and neonates: a qualitative study protocol

2018 ◽  
Vol 15 (1) ◽  
Author(s):  
Anam Feroz ◽  
Mohsina Noor Ibrahim ◽  
Shiyam Sunder Tikmani ◽  
Sayyeda Reza ◽  
Zahid Abbasi ◽  
...  
2021 ◽  
Vol 18 (1) ◽  
Author(s):  
Manoja Kumar Das ◽  
Narendra Kumar Arora ◽  
Gurkirat Kaur ◽  
Prikanksha Malik ◽  
Mahisha Kumari ◽  
...  

Abstract Background Minimal invasive tissue sampling (MITS) has emerged as a suitable alternative to complete diagnostic autopsy (CDA) for determination of the cause of death (CoD), due to feasibility and acceptability issues. A formative research was conducted to document the perceptions of parents, community and religious leaders on acceptability of MITS. Methods This qualitative study was conducted at and around the Safdarjung Hospital, Delhi, India. Participants for in-depth interview included the parents who had either child or neonatal death or stillbirth and the key community and religious representatives. The focus group discussions (FGDs) involved community members. Process of obtaining consent for MITS was observed. Data were analyzed inductively manually for emerging themes and codes. Results A total of 104 interviews (parents of deceased children, neonates or stillbirths, n = 93; community members, n = 8 and religious leaders, n = 7), 8 FGDs (n = 72) were conducted and process of obtaining consent for MITS (n = 27) was observed. The participants were positive and expressed willingness to accept MITS. The key determinants for acceptance of MITS were: (1) understanding and willingness to know the cause of death or stillbirth, (2) experience of the healthcare received and trust, (3) the religious and sociocultural norms. Parents and community favored for MITS over CDA when needed, especially where in cases with past stillbirths and child deaths. The experience of treatment, attitude and communication from healthcare providers emerged as important for consent. The decision making process was collective involving the elders and family. No religious leader was against the procedure, as both, the respect for the deceased and need for medical care were satisfied. Conclusions Largely, MITS appeared to be acceptable for identifying the causes of child deaths and stillbirths, if the parents and family are counseled appropriately considering the sociocultural and religious aspects. They perceived the quality of care, attitude and communication by the healthcare providers as critical factors for acceptance of MITS.


Author(s):  
Anam Feroz ◽  
Anum Shiraz Ali ◽  
Mohsina Noor Ibrahim ◽  
Elizabeth M. McClure ◽  
Shiyam Sunder Tikmani ◽  
...  

Abstract Background Pakistan is considered to be one of the riskiest places in the world for childbirth as measured by its high stillbirth and neonatal mortality rates. Complete diagnostic autopsy remains the gold standard to determine the cause of death (CoD); however, it is not routinely implemented due to religious objections, sociocultural beliefs, limited resources and low demand from physicians and families. Recently, minimally invasive tissue sampling (MITS) using needle biopsies of multiple tissues to obtain tissue for histological examination and organism identification with PCR has been developed and promoted to determine CoD in low-resource areas. To ensure successful implementation of MITS, it is important to understand health professionals’ attitudes and perceptions related to MITS. Methods A qualitative study was conducted at the National Institute of Child Health (NICH), Karachi, Pakistan. Focus group discussions (FGDs) and Key-informant interviews (KIIs) were conducted with health professionals including doctors, nurses, trainees, clinicians, bioethics experts and public health experts to explore their perceptions and views on acceptability of MITS. Data were analyzed using NVivo 10 software. Results A total of 12 interviews (FGDs = 4; KIIs = 8) were conducted. Four overarching themes were identified: (I) acceptability of MITS; (II) perceived benefits of the MITS procedure; (III) factors facilitating the implementation of MITS; and (IV) health system requirements for implementing the MITS procedure. Generally, MITS was considered as a positive development for the health system. Diagnostic accuracy and identification of less common causes of death were highlighted as two main benefits of the MITS procedure. The study highlighted a number of facilitators for the acceptability of MITS including effective counseling, building trust with parents, fast procedure time, and approaching families within a few hours of death. In addition, lack of skilled staff, poorly equipped healthcare facilities and the potential high cost to conduct MITS were identified as challenges for the implementation of MITS. Conclusions This formative research provided a unique opportunity to explore health professionals’ views and attitudes towards the MITS procedure. Such insights are crucial to ensure successful implementation and integration of a new technique into the existing health system. The research identified the factors influencing the acceptability of MITS among health professionals in Pakistan. The study also informed factors that could help facilitate the implementation of the MITS procedures in the context of Pakistan and similar settings.


BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e044059
Author(s):  
Hongxia Shen ◽  
Rianne M J J van der Kleij ◽  
Paul J M van der Boog ◽  
Wenjiao Wang ◽  
Xiaoyue Song ◽  
...  

ObjectivesTo support the adaptation and translation of an evidence-based chronic kidney disease (CKD) self-management intervention to the Chinese context, we examined the beliefs, perceptions and needs of Chinese patients with CKD and healthcare professionals (HCPs) towards CKD self-management.DesignA basic interpretive, cross-sectional qualitative study comprising semistructured interviews and observations.SettingOne major tertiary referral hospital in Henan province, China.Participants11 adults with a diagnosis of CKD with CKD stages G1–G5 and 10 HCPs who worked in the Department of Nephrology.ResultsFour themes emerged: (1) CKD illness perceptions, (2) understanding of and motivation towards CKD self-management, (3) current CKD practice and (4) barriers, (anticipated) facilitators and needs towards CKD self-management. Most patients and HCPs solely mentioned medical management of CKD, and self-management was largely unknown or misinterpreted as adherence to medical treatment. Also, the majority of patients only mentioned performing disease-specific acts of control and not, for instance, behaviour for coping with emotional problems. A paternalistic patient–HCP relationship was often present. Finally, the barriers, facilitators and needs towards CKD self-management were frequently related to knowledge and environmental context and resources.ConclusionsThe limited understanding of CKD self-management, as observed, underlines the need for educational efforts on the use and benefits of self-management before intervention implementation. Also, specific characteristics and needs within the Chinese context need to guide the development or tailoring of CKD self-management interventions. Emphasis should be placed on role management and emotional coping skills, while self-management components should be tailored by addressing the existing paternalistic patient–HCP relationship. The use of electronic health innovations can be an essential facilitator for implementation.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Nakimuli Esther ◽  
Ssentongo Julius ◽  
Mwaka Amos Deogratius

Abstract Background In the low- and middle-income countries, most patients with esophageal cancer present with advanced stage disease and experience poor survival. There is inadequate understanding of the factors that influence decisions to and actual health-seeking, and adherence to treatment regimens among esophageal cancer patients in Uganda, yet this knowledge is critical in informing interventions to promote prompt health-seeking, diagnosis at early stage and access to appropriate cancer therapy to improve survival. We explored health-seeking experiences and adherence to treatment among esophageal cancer patients attending the Uganda Cancer Institute. Methods We conducted an interview based qualitative study at the Uganda Cancer Institute (UCI). Participants included patients with established histology diagnosis of esophageal cancer and healthcare professionals involved in the care of these patients. We used purposive sampling approach to select study participants. In-depth and key informant interviews were used in data collection. Data collection was conducted till point of data saturation was reached. Thematic content analysis approach was used in data analyses and interpretations. Themes and subthemes were identified deductively. Results Sixteen patients and 17 healthcare professionals were included in the study. Delayed health-seeking and poor adherence to treatment were related to (i) emotional and psychosocial factors including stress of cancer diagnosis, stigma related to esophageal cancer symptoms, and fear of loss of jobs and livelihood, (ii) limited knowledge and recognition of esophageal cancer symptoms by both patients and primary healthcare professionals, and (iii) limited access to specialized cancer care, mainly because of long distance to the facility and associated high transport cost. Patients were generally enthused with patient – provider relationships at the UCI. While inadequate communication and some degree of incivility were reported, majority of patients thought the healthcare professionals were empathetic and supportive. Conclusion Health system and individual patient factors influence health-seeking for symptoms of esophageal cancer and adherence to treatment schedule for the disease. Interventions to improve access to and acceptability of esophageal cancer services, as well as increase public awareness of esophageal cancer risk factors and symptoms could lead to earlier diagnosis and potentially better survival from the disease in Uganda.


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