A Cross-European Study of Informal Carers' Needs in the Context of Caring for Older People, and their Experiences with Professionals Working in Integrated Care Settings.

INTRODUCTION: Informal carers are increasingly relied on for support by older people and the health and social care systems that serve them. It is therefore important that health and social care professionals are knowledgeable about and responsive to informal carers' needs. This study explores informal carers' own needs within the context of caregiving; and examines, from the informal carers' perspective, the extent to which professionals assess, understand and are responsive to informal carers' needs. METHODS: We interviewed (2016-2018) 47 informal carers of older people being served by 12 integrated care initiatives across seven countries in Europe. The interviews were thematically coded inductively and analysed. RESULTS: Informal carers reported that professionals treated them with respect and made efforts to assess and respond to their needs. However, even though professionals encouraged informal carers to look after themselves, informal carers' needs (e.g., for respite, healthcare) were insufficiently addressed, and informal carers tended to prioritize older people's needs over their own. DISCUSSION AND CONCLUSION: Informal carers need better support in caring for their own health. Health professionals should have regular contact with informal carers and proactively engage them in ongoing needs assessment, setting action plans for addressing their needs, and identifying/accessing appropriate support services. This will be important if informal carers are to continue their caregiving role without adverse effects to themselves.

Implementing a national non-communicable disease policy in sub-Saharan Africa: Experiences of key stakeholders in Ghana.

Introduction: Comprehensive national non-communicable disease (NCD) policy development and implementation are crucial for preventing and controlling the increasing NCD burden, particularly in the Africa region where the largest increase in NCD related mortality is expected by 2030. Yet, even where national NCD policies exist, effective implementation remains hindered for reasons not clearly elucidated. This study explored the experiences of key health stakeholders at national and sub-national levels with implementing a national NCD policy in Ghana. Methods: This was an explanatory, cross-sectional and grounded theory study using in-depth interview guides to collect primary data from 39 purposively sampled health policymakers and implementing officials at the national and sub-national levels in Ghana. A thematic approach was used in data analysis. Results: Several interwoven factors including poor policy awareness, poor coordination and intersectoral engagements and inadequate funding for NCD programs and activities are key challenges thwarting the effective implementation of the national NCD policy in Ghana. At the sub-national levels, inadequate clarity and structure for translating policy into action and inadequate integration further affect operationalizing of the national NCD policy. Conclusion: The findings call for policymakers to adopt a series of adaptive measures including sustainable NCD financing mechanisms, effective intersectoral coordination, policy sensitisation and capacity building for implementing health professionals, which should be coupled with governmental and global resource investment in effective implementation of national NCD policies to make sustained population level gains in NCD control in Ghana and in other resource constrained settings.

Illness representations and coping practices for self-managing hypertension among sub-Saharan Africans: A comparative study among Ghanaian migrants and non-migrant Ghanaians.

OBJECTIVE: Hypertension (HTN) control is a major obstacle among sub-Saharan African populations partly due to poor self-management. We explored and compared how persons' social and physical context shapes their illness representations regarding HTN and the coping strategies they develop and adapt to mitigate challenges in self-managing HTN. METHODS: A cross sectional multisite qualitative study using semi-structured interviews among 55 Ghanaians with HTN living in The Netherlands and urban and rural Ghana. A thematic approach was used in data analysis. RESULTS: Family HTN history, personal experiences with HTN and outcomes of using biomedical and traditional treatments shaped participants' illness representations and coping strategies. Migrants and urban non-migrants modified medication schedules and integrated taking medication into daily routine activities to cope with experienced side effects of taking antihypertensive medication while rural non-migrants used traditional remedies and medicines to mitigate experienced medication side effects and/or in search for a cure for HTN. CONCLUSION: Contextual factors within participants' social and physical environments shape their illness representations and coping strategies for HTN though interactive phrases. PRACTICE IMPLICATIONS: Health professionals should harness the relationships within peoples' social and physical environments, encourage implementation of family-wide behavioural changes and involve family and communities in HTN treatment to enhance patients' self-management of HTN.

Lay community perceptions and treatment options for hypertension in rural northern Ghana: a qualitative analysis.

OBJECTIVE: Adherence to hypertension treatment is a major public health challenge for low and middle-income countries particularly in sub-Saharan Africa. One potential reason could be the discordance between lay and medical explanatory models of hypertension and its treatment. Understanding community perceptions and practices may contribute to improving hypertension control as they present insights into psychosocial and cultural factors that shape individual behaviour. We explore community perceptions regarding hypertension and its treatment in rural northern Ghana and how they differ from medical understanding. DESIGN: This was a qualitative study using semi-structured interviews and focus group discussions to collect data, which were analysed using a thematic approach. SETTING: A multisite study conducted in four rural communities in two regions of northern Ghana. PARTICIPANTS: We conducted 16 semi-structured interviews and eight focus group discussions with community leaders and members, respectively. RESULTS: Three major themes were identified: community perceptions, treatment options and community support for people with hypertension. Community perceptions about hypertension include hypertension perceived as excess blood in the body and associated with spiritual or witchcraft attacks. Traditional medicine is perceived to cure hypertension completely with concurrent use of biomedical and traditional medicines encouraged in rural communities. Community members did not consider themselves at risk of developing hypertension and reported having inadequate information on how to provide social support for hypertensive community members, which they attributed to low literacy and poverty. CONCLUSION: There is a substantial mismatch between communities' perceptions and medical understanding of hypertension and its treatment. These perceptions partly result from structural factors and social norms shaped by collective processes and traditions that shape lay beliefs and influence individual health behaviour. Socioeconomic factors also thwart access to information and contribute to inadequate social support for persons with hypertension. These findings highlight the need for a public health approach to hypertension control targeting families and communities.

[Long-term informal care in Spain: challenges, views and solutions]. / Cuidados informales de larga duración en España: retos, miradas y soluciones.

Caring for chronic illnesses at all ages represents a growing social and public health problem. Due to insufficient public coverage in Spain, around 80% of long-term care is provided by the sick person's social network. Based in ethnographic research on chronicity carried out between 2009 and 2013 in Spain, this article analyzes the problem of long-term informal care for middle-aged adults with chronic diseases. The results highlight the factors that condition, enhance or limit informal care: the personal, domestic and family situation of the sick person; the cyclical course of chronic diseases; and the social response to illness. The limitations of the informal care model suggest the need to listen to the voices of those affected in order to understand their real needs and adapt official programs oriented towards chronicity accordingly.

Cuidados informales de larga duración en España: retos, miradas y soluciones / Long-term informal care in Spain: challenges, views and solutions

RESUMEN El cuidado de la enfermedad crónica a todas las edades representa un problema social y de salud pública en aumento. En España, debido a la insuficiente cobertura estatal, cerca del 80% de los cuidados de larga duración los realiza la red social del enfermo. A partir de una investigación etnográfica sobre cronicidad, desarrollada entre 2009 y 2013 en el estado español, este artículo analiza la problemática de los cuidados informales de larga duración sobre la base de las narrativas de adultos de mediana edad con enfermedades crónicas. Los resultados señalan los factores que condicionan, favorecen o limitan el cuidado informal: la situación personal, doméstica y familiar del enfermo; el curso cíclico de la enfermedad crónica; y la respuesta social a la enfermedad. Las limitaciones del modelo de cuidado informal emplazan a escuchar las voces de los afectados para conocer sus necesidades reales y adecuar los planes y programas de atención a la cronicidad.

ABSTRACT Caring for chronic illnesses at all ages represents a growing social and public health problem. Due to insufficient public coverage in Spain, around 80% of long-term care is provided by the sick person's social network. Based in ethnographic research on chronicity carried out between 2009 and 2013 in Spain, this article analyzes the problem of long-term informal care for middle-aged adults with chronic diseases. The results highlight the factors that condition, enhance or limit informal care: the personal, domestic and family situation of the sick person; the cyclical course of chronic diseases; and the social response to illness. The limitations of the informal care model suggest the need to listen to the voices of those affected in order to understand their real needs and adapt official programs oriented towards chronicity accordingly.

Evidencias y Narrativas en la atención sanitaria / Evidence and Narratives in healthcare

Este livro é resultado da reflexão coletiva do X Colóquio REDAM (Red de Antropologia Medica) que teve com titulo "De la evidencia a la narrativa en la atención sanitaria: biopoder y relatos de aflicción", realizado em junho de 2013. Tendo como objetivo destacar as narrativas da "construcción de la prueba en biomedicin", na publicação entendidas como uma questão estratégica.

Evidencias y Narrativas en la atención sanitaria / Evidence and Narratives in healthcare

Este livro é resultado da reflexão coletiva do X Colóquio REDAM (Red de Antropologia Medica) que teve com titulo "De la evidencia a la narrativa en la atención sanitaria: biopoder y relatos de aflicción", realizado em junho de 2013. Tendo como objetivo destacar as narrativas da "construcción de la prueba en biomedicin", na publicação entendidas como uma questão estratégica.