• Grieving a disrupted biography: an interpretative phenomenological analysis exploring barriers to the use of mindfulness after neurological injury or impairment

      Finlay, K. A.; Hearn, J.H.; Chater, Angel M.; University of Reading; Manchester Metropolitan University; University of Bedfordshire (Biomed Central, 2021-08-24)
      Mindfulness has demonstrated strong utility for enhancing self-management and health outcomes in chronic illness. However, sensation-focused mindfulness techniques may not be appropriate for clinical populations with neurological injury. This study aimed to identify how expert mindfulness teachers with sensory loss/impairment naturalistically adapt and experience mindfulness. We aimed to highlight the rationale for and barriers to mindfulness practice when living with sensory loss. A qualitative, semi-structured interview design was used, analysed via Interpretative Phenomenological Analysis (IPA). Eight (5 females, 3 males) mindfulness teachers with neurological injury were recruited via a national registry of Mindfulness for Health teachers. Interviews (range: 50-93 min) were completed, transcribed verbatim and analysed idiographically for descriptive, linguistic and conceptual themes, before a cross-case analysis was completed. Two superordinate themes were identified: (1) Overcoming a disrupted biography; and (2) Proactive self-management. These themes considered the challenge of reconciling, through grief, a past health status with the present reality of living with sensory loss due to Spinal Cord Injury, Multiple Sclerosis or Functional Neurological Disorder. Mindfulness was experienced as a method by which proactive choices could be made to maintain control and autonomy in health, reducing perceptions of suffering, psychological distress, cognitive reactivity and rumination. Mindfulness was found to support the self-management of health after neurological injury/impairment. Mindfulness meditation presented an initial challenge as trauma and grief processes were (re-)activated during mindfulness sessions. However, mindfulness was found to support the resolution of these grief processes and encourage adaptive approach-based coping and acceptance of health and neurological impairment/injury.
    • Inequalities and outcomes: end stage kidney disease in ethnic minorities

      Wilkinson, Emma; Brettle, Alison; Waqar, Muhammad; Randhawa, Gurch; University of Bedfordshire; University of Salford (Biomed Central, 2019-06-26)
      Background The international evidence about outcomes of End Stage Kidney Disease (ESKD) for ethnic minorities was reviewed to identify gaps and make recommendations for researchers and policy makers. Methods Nine databases were searched systematically with 112 studies from 14 different countries included and analysed to produce a thematic map of the literature. Results Reviews (n = 26) highlighted different mortality rates and specific causes between ethnic groups and by stage of kidney disease associated with individual, genetic, social and environmental factors. Primary studies focussing on uptake of treatment modalities (n = 19) found ethnic differences in access. Research evaluating intermediate outcomes and quality of care in different treatment phases (n = 35) e.g. dialysis adequacy, transplant evaluation and immunosuppression showed ethnic minorities were disadvantaged. This is despite a survival paradox for some ethnic minorities on dialysis seen in studies of longer term outcomes (n = 29) e.g. in survival time post-transplant and mortality. There were few studies which focussed on end of life care (n = 3) and ethnicity. Gaps identified were: limited evidence from all stages of the ESKD pathway, particularly end of life care; a lack of system oriented studies with a reliance on national routine datasets which are limited in scope; a dearth of qualitative studies; and a lack studies from many countries with limited cross country comparison and learning. Conclusions Differences between ethnic groups occur at various points and in a variety of outcomes throughout the kidney care system. The combination of individual factors and system related variables affect ethnic groups differently indicating a need for culturally intelligent policy informed by research to prevent disadvantage.
    • A qualitative study of healthcare professionals’ experiences of providing maternity services for Muslim women in the UK

      Hassan, Shaima Mohamed; Leavey, Conan; Rooney, Jane S.; Puthussery, Shuby (Biomed Central, 2020-07-10)
      Background: A growing Muslim population in the UK suggests the need for healthcare professionals (HCPs) to gain a better understanding of how the Islamic faith influences health related perceptions and healthcare seeking behaviour. Although some researchers have explored the experiences of Muslim women as recipients of healthcare, little attention has been paid to the challenges HCPs face as service providers on a day-to-day basis whilst caring for Muslim women. The aim of this study was to investigate HPCs lived experiences of providing maternity care for Muslim women. Method: Data was collected through twelve semi-structured one-to-one qualitative interviews with HCPs in a large National Health Service (NHS) maternity unit located in the North West of England. Interview participants included Community and specialist clinic (e.g. clinic for non-English speakers), Midwives in a variety of specialist roles (7), Gynaecology Nurses (2), Breastfeeding Support Workers (2) and a Sonographer (1). The audio-recorded interviews were transcribed and analysed thematically. Results: The majority of participants expressed an understanding of some religious values and practices related to Muslim women, such as fasting the month of Ramadhan and that pregnant and breastfeeding women are exempt from this. However, HCPs articulated the challenges they faced when dealing with certain religious values and practices, and how they tried to respond to Muslim women’s specific needs. Emerging themes included: 1) HCPs perceptions about Muslim women; 2) HCPs understanding and awareness of religious practices; 3) HCPs approaches in addressing and supporting Muslim women’s religious needs; 4) Importance of training in providing culturally and religiously appropriate woman-centred care. Conclusion: Through this study we gained insight into the day-to-day experiences of HCPs providing care provision for Muslim women. HCPs showed an understanding of the importance of religious and cultural practices in addressing the needs of Muslim women as part of their role as maternity care providers. However, they also identified a need to develop training programmes that focus on cultural and religious practices and their impact on women’s health care needs. This will help support HCPs in overcoming the challenges faced when dealing with needs of women from different backgrounds.
    • Stigma of living as an autism carer: a brief psycho-social support intervention (SOLACE). Study protocol for a randomised controlled feasibility study.

      Lodder, Annemarie; Papadopoulos, Chris; Randhawa, Gurch; University of Bedfordshire (Biomed Central, 2019-02-26)
      Stigma is prominent in the lives of autistic individuals and their families and contributes significantly to the challenges faced by families raising an autistic child. Parents and carers can feel blamed for their child's behaviour, feel socially excluded and isolated and suffer from low self-esteem and poor psychological well-being. This increases the risk of experiencing self-stigma which further exacerbates these and other negative consequences. Therefore, there is a need for interventions that help parents/family carers cope with autism-related stigma as well as prevent the internalisation of stigma. The primary objective of this study is to assess the feasibility and acceptability of a stigma support intervention for parents and carers of autistic children titled 'Stigma of Living as an Autism Carer (SOLACE)'. The secondary objective is to explore the preliminary impact of the intervention on the mental health of the parents and carers. tests for differences within the group. Other outcomes of interest are stigma, self-stigma, self-esteem, self-blame, social isolation, self-compassion and perceived responsibility and control. Results from the feasibility randomised controlled trial will be used to refine the study protocol and inform the design of an intervention for future use in a larger, powered trial. SOLACE could potentially improve the psychological well-being of parents/family carers of autistic children through increased resistance to stigma. ISRCTN Registry number ISRCTN61093625 (October 13, 2017).
    • Understanding healthcare self-referral in Nigeria from the service users' perspective: a qualitative study of Niger state

      Koce, Francis George; Randhawa, Gurch; Ochieng, Bertha; University of Bedfordshire; De Montfort University (Biomed Central, 2019-04-02)
      Background The by-pass of the primary level of care to the referral facilities has continued to raise concerns for the healthcare delivery system. About 60–90% of patients in Nigeria are reported to self-refer to a referral level of care. Thus, this study sought to identify the factors that influence service-users’ decision to self-refer to the secondary healthcare facilities in Nigeria by exploring the perceptions and experiences of the service-users. Methods Twenty-four self-referred service-users were interviewed from three selected secondary healthcare facilities (general hospitals) in Niger state, Nigeria. The interviews were tape-recorded, each lasting 20 min on average. This was subsequently transcribed and framework analysis was employed for the analysis. Results Various reasons were identified to have resulted in the bypass of the primary healthcare facilities in favour of the secondary level of care. The identified themes were organised based on the predisposing, enabling and need component of Andersen’s model. These themes included: patients understanding of the healthcare delivery system; perceptions about the healthcare providers; perceptions about healthcare equipment/ facilities; advice from relatives and friends; service-users’ expectations; access to healthcare facilities; regulations/ policies; medical symptoms; perceptions of severity of medical symptoms. Conclusions The findings from this study call for an evaluation of the current healthcare referral system, particularly in developing settings like Nigeria and consequently the need for developing a contextual model as applicable to individual settings. Therefore, a multifaceted approach is needed to address the current concerns to ensure patients utilise the appropriate level of care. This will ensure the primary healthcare facilities are not undermined and allow the referral levels of care to live up to their mandate.