4.5 Article

Active ingredients of a person-centred intervention for people on HIV treatment: analysis of mixed methods trial data

Journal

BMC INFECTIOUS DISEASES
Volume 18, Issue -, Pages -

Publisher

BMC
DOI: 10.1186/s12879-017-2900-0

Keywords

HIV; Palliative care; Mixed methods; RCT; Psychosocial

Funding

  1. Diana Princess of Wales Memorial Fund
  2. Medical Research Council [MR/K012126/1] Funding Source: researchfish

Ask authors/readers for more resources

Background: A new model of care is required to meet the changing needs of people living with HIV (PLWH), particularly in low and middle-income countries, where prevalence is highest. We evaluated a palliative care intervention for PLWH in Mombasa, Kenya. Although we found no effect on pain (primary outcome), there was a positive effect on mental health (secondary outcome) in the intervention group. To inform replication and implementation, we have determined the active ingredients of the intervention and their mechanisms of action. Methods: We conducted a randomised controlled trial (RCT) with qualitative exit interviews in HIV clinic attenders. The intervention was delivered over 5 months, with a minimum of 7 clinical contacts. Longitudinal quantitative data on components of care received were analysed using area under the curve and logistic regression. Qualitative data were analysed using inductive and deductive thematic analysis. Results: Quantitative data analysis identified that intervention patients received more weak opioid, laxatives, discussion about spiritual worries, emotional support from staff for themselves and their families, time to talk about worries, discussion about future and planning ahead. Qualitative data analysis found that patients reported that having time to talk, appropriate pain medication and effective health education was of therapeutic value for their psychological well-being. Integration of mixed method findings suggest that positive effect in quantitative measures of mental health and well-being are attributable to the active ingredients of: appropriate medication, effective health education and counselling, and having time to talk in clinical encounters. Mechanisms of action include symptom relief, improved understanding of illness and treatment, and support focused on articulated concerns. Conclusions: Routine care must provide opportunities and means for existing clinical staff to make routine appointments more person-centred. This approach enabled staff to identify and manage multidimensional problems and provide tailored health education and counselling.

Authors

I am an author on this paper
Click your name to claim this paper and add it to your profile.

Reviews

Primary Rating

4.5
Not enough ratings

Secondary Ratings

Novelty
-
Significance
-
Scientific rigor
-
Rate this paper

Recommended

Article Health Care Sciences & Services

Change in Activity of Palliative Care Services during the Covid-19 Pandemic: A Multinational Survey (CovPall)

Katherine E. Sleeman, Rachel L. Cripps, Fliss E. M. Murtagh, Adejoke O. Oluyase, Mevhibe B. Hocaoglu, Matthew Maddocks, Catherine Walshe, Nancy Preston, Lesley Dunleavy, Andy Bradshaw, Sabrina Bajwah, Irene J. Higginson, Lorna K. Fraser

Summary: The study identified factors associated with increased busyness in palliative care services during the Covid-19 pandemic. Providing community care and publicly managed services were better able to respond to escalating needs. Staff shortages, homecare services, nursing care at home, Covid-19 cases, and publicly managed services were all associated with increased busyness in the services.

JOURNAL OF PALLIATIVE MEDICINE (2022)

Article Medicine, General & Internal

Experiences of staff providing specialist palliative care during COVID-19: a multiple qualitative case study

Andy Bradshaw, Lesley Dunleavy, Ian Garner, Nancy Preston, Sabrina Bajwah, Rachel Cripps, Lorna K. Fraser, Matthew Maddocks, Mevhibe Hocaoglu, Fliss E. M. Murtagh, Adejoke O. Oluyase, Katherine E. Sleeman, Irene J. Higginson, Catherine Walshe

Summary: This study explores the experiences and impact of palliative care staff working during the COVID-19 pandemic. The findings reveal that infection control constraints hindered the ability of staff to provide care aligned with their core values, resulting in moral distress. Despite organizational and team support, the prolonged management of these constraints led to cumulative impacts of moral distress and sometimes burnout. Solidarity with colleagues and making valued contributions provided some moral comfort.

JOURNAL OF THE ROYAL SOCIETY OF MEDICINE (2022)

Article Health Care Sciences & Services

Understanding the impact of the Covid-19 pandemic on delivery of rehabilitation in specialist palliative care services: An analysis of the CovPall-Rehab survey data

Joanne Bayly, Andy Bradshaw, Lucy Fettes, Muhammed Omarjee, Helena Talbot-Rice, Catherine Walshe, Katherine E. Sleeman, Sabrina Bajwah, Lesley Dunleavy, Mevhibe Hocaoglu, Adejoke Oluyase, Ian Garner, Rachel L. Cripps, Nancy Preston, Lorna K. Fraser, Fliss E. M. Murtagh, Irene J. Higginson, Matthew Maddocks

Summary: This study found that rehabilitation services in palliative care during the Covid-19 pandemic mostly shifted to remote provision, with many team members being on sick leave, redeployed, or furloughed. Free text responses were categorized into four themes showing how rehabilitation services adapted and reconfigured to the challenges posed by Covid-19, affecting both clinicians' and patients' capacity to participate in rehabilitation programs.

PALLIATIVE MEDICINE (2022)

Article Respiratory System

Optimising breathlessness triggered services for older people with advanced diseases: a multicentre economic study (OPTBreathe)

Deokhee Yi, Charles C. Reilly, Gao Wei, Irene J. Higginson

Summary: This study found that breathlessness services were cost-effective compared to usual care, resulting in cost savings and improved quality of life. Additionally, tailoring service attributes to individual preferences increased the uptake of these services.

THORAX (2023)

Article Medicine, General & Internal

Which patients received a ReSPECT form, what was documented and what were the patient outcomes? A protocol for a retrospective observational study investigating the impact of the COVID-19 pandemic on the implementation of the ReSPECT process

Adam McDermott, Claire A. Woodall, Charlotte Chamberlain, Lucy Selman, Lucy Victoria Pocock

Summary: This study aims to investigate the implementation of the ReSPECT program in the UK during the COVID-19 pandemic and analyze the clinical recommendations and outcomes for patients. The findings of this study will contribute to the evidence base on the equity and potential benefits of implementing the ReSPECT program.

BMJ OPEN (2022)

Review Multidisciplinary Sciences

How are public engagement health festivals evaluated? A systematic review with narrative synthesis

Susannah Martin, Charlotte Chamberlain, Alison Rivett, Lucy E. Selman

Summary: The evaluation of public engagement health festivals is important, but there has been no comprehensive synthesis of its practice. This systematic review found that higher quality studies had specific evaluation aims, used a wider variety of evaluation methods, and had independent evaluation teams. However, the sample profiles for evaluation often had gender bias and were not ethnically representative. Patient involvement in event delivery supported learning and engagement.

PLOS ONE (2022)

Article Health Care Sciences & Services

Translation and cross-cultural adaptation of the Integrated Palliative Care Outcome Scale in Hindi: Toward capturing palliative needs and concerns in Hindi speaking patients

Tushti Bhardwaj, Rachel L. Chambers, Harry Watson, Irene J. Srividya, Irene J. Higginson, Mevhibe B. Hocaoglu

Summary: This study aimed to translate and culturally adapt the Integrated Palliative Care Outcome Scale (IPOS) into Hindi. Through a standardized methodology, the Hindi IPOS was developed and found to have face and content validity for clinical practice and research. The availability of the Hindi IPOS has implications beyond Indian palliative care settings, as it provides millions of Hindi speakers with a tool to communicate their palliative care needs in their mother tongue.

PALLIATIVE MEDICINE (2023)

Article Health Care Sciences & Services

'Sadly I think we are sort of still quite white, middle-class really' - Inequities in access to bereavement support: Findings from a mixed methods study

Lucy E. Selman, Eileen Sutton, Renata Medeiros Mirra, Tracey Stone, Emma Gilbert, Yansie Rolston, Karl Murray, Mirella Longo, Kathy Seddon, Alison Penny, Catriona R. Mayland, Donna Wakefield, Anthony Byrne, Emily Harrop

Summary: Voluntary and community sector bereavement services are crucial for bereavement support in the UK. However, many needs were not met, particularly among minority ethnic, sexual minority, deprived, and male groups before and during the COVID-19 pandemic. The pandemic had a disproportionate impact on minority ethnic communities, leading to disrupted care and mourning practices. While online provision improved access, it also excluded certain individuals. Positive interventions, such as collecting demographic data and improving outreach and language accessibility, can help address these inequities in accessing bereavement support.

PALLIATIVE MEDICINE (2023)

Letter Respiratory System

Effect of listening to breathing recordings on self-reported breathlessness: a public experiment

Natasha Lovell, Simon N. Etkind, Joanna M. Davies, Wendy Prentice, Irene J. Higginson, Katherine E. Sleeman

EUROPEAN RESPIRATORY JOURNAL (2023)

Article Health Care Sciences & Services

Deaths at home, area-based deprivation and the effect of the Covid-19 pandemic: An analysis of mortality data across four nations

Javiera Leniz, Joanna M. Davies, Anna E. Bone, Mevhibe Hocaoglu, Julia Verne, Stephen Barclay, Fliss E. M. Murtagh, Lorna K. Fraser, Irene J. Higginson, Katherine E. Sleeman

Summary: The number and proportion of home deaths in the UK increased during the Covid-19 pandemic, with evidence of socioeconomic inequality. The increase in home deaths was lowest for people living in the most deprived areas, showing a deprivation gradient. Further research is needed to understand the reasons for this change and if the inequality has been sustained. Overall rating: 7 points.

PALLIATIVE MEDICINE (2023)

Review Respiratory System

Meditative movement for breathlessness in advanced COPD or cancer: a systematic review and meta-analysis

Claire M. Nolan, Lisa Jane Brighton, Yihan Mo, Joanne Bayly, Irene J. Higginson, William D. -C. Man, Matthew Maddocks

Summary: This systematic review examined the effect of meditative movement on breathlessness, quality of life, exercise capacity, functional performance, and psychological symptoms in advanced disease. The results showed that meditative movement did not improve breathlessness, quality of life, or exercise capacity in people with advanced COPD or cancer.

EUROPEAN RESPIRATORY REVIEW (2023)

Article Respiratory System

A randomised, controlled, feasibility trial of an online, self-guided breathlessness supportive intervention (SELF-BREATHE) for individuals with chronic breathlessness due to advanced disease

Charles C. Reilly, Matthew Maddocks, Trudie Chalder, Katherine Bristowe, Irene J. Higginson

Summary: SELF-BREATHE is a digital breathlessness intervention that aims to improve the lives of people with chronic breathlessness. This study found that SELF-BREATHE was feasible to deliver and acceptable to patients, with users reporting improved breathlessness during daily life.

ERJ OPEN RESEARCH (2023)

Article Nutrition & Dietetics

Growth Profiles of Children and Adolescents Living with and without Perinatal HIV Infection in Southern Africa: A Secondary Analysis of Cohort Data

Andrea M. Rehman, Isaac Sekitoleko, Ruramayi Rukuni, Emily L. Webb, Grace McHugh, Tsitsi Bandason, Brewster Moyo, Lucky Gift Ngwira, Cynthia Mukwasi-Kahari, Celia L. Gregson, Victoria Simms, Suzanne Filteau, Rashida A. Ferrand

Summary: Impaired linear growth and slower pubertal growth can be associated with perinatal HIV infection. A study in southern Africa found that a significant proportion of HIV-infected adolescents experienced growth faltering during their adolescent period, with females showing an increase in body fat percentage. Older males and those with chronic lung disease were more likely to have stunted growth. Improvements in height-for-age scores were observed in some profiles over a year.

NUTRIENTS (2023)

Article Public, Environmental & Occupational Health

Prolonged grief during and beyond the pandemic: factors associated with levels of grief in a four time-point longitudinal survey of people bereaved in the first year of the COVID-19 pandemic

Emily Harrop, Renata Medeiros Mirra, Silvia Goss, Mirella Longo, Anthony Byrne, Damian J. J. Farnell, Kathy Seddon, Alison Penny, Linda Machin, Stephanie Sivell, Lucy E. Selman

Summary: This longitudinal study investigated the prevalence of Prolonged Grief Disorder (PGD) in UK individuals bereaved during the COVID-19 pandemic. The study found higher than expected levels of PGD, with social isolation, lack of social support, and support from healthcare professionals playing significant roles in the development of prolonged grief symptoms.

FRONTIERS IN PUBLIC HEALTH (2023)

Article Health Care Sciences & Services

Engaging and supporting the public on the topic of grief and bereavement: an evaluation of Good Grief Festival

Lucy E. Selman, Nicholas Turner, Lesel Dawson, Charlotte Chamberlain, Aisling Mustan, Alison Rivett, Fiona Fox

Summary: The Good Grief Festival successfully attracted a large online audience and had a positive impact on engagement, confidence, and community-building. The evaluation findings suggest that festivals of this nature can play a central role in increasing public awareness of death and grief within a public health approach.

PALLIATIVE CARE & SOCIAL PRACTICE (2023)

No Data Available