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Assessment of caring and its effects in young people: development of the Multidimensional Assessment of Caring Activities Checklist (MACA-YC18) and the Positive and Negative Outcomes of Caring Questionnaire (PANOC-YC20) for young carers

Background  Many children, adolescents and young people are involved in caring for parents, siblings, or other relatives who have an illness, disability, mental health problem or other need for care or supervision. The aim was to develop two new instruments for use in research with young carers to assess caring activities and their psychological effects.

Thu, 07/20/2017 - 15:12

The interplay between social and cultural context and perceptions of cardiovascular disease

This paper seeks to explore the impact of social and cultural factors upon perceptions of the patients’ cardiovascular risk and intended lifestyle changes. Qualitative and quantitative research approaches were used. The sample was purposeful; matched groups of 10 first time post myocardial infarction (MI) patients, 10 informal (spouse, blood relative or partner) and 10 formal carers (nursing staff) were selected on a convenience basis. Personal interviews were conducted with participants, during which a semistructured questionnaire was completed.

Thu, 07/20/2017 - 15:12

Caring for older adults with diabetes mellitus: characteristics of carers and their prime roles and responsibilities

Aims: Expanding prevalence of diabetes has a major health impact on older people and the burden experienced by their informal carers. We report research which aimed to examine the burden on carers and highlight their input into diabetes care.; Methods: Of 98 diabetes patients aged over 59 years, 89 regularly received help with day-to-day activities or looking after from someone else and, of these, 83 carers consented to interview.

Thu, 07/20/2017 - 15:12

The relationship between patient characteristics and carer psychological status in home palliative cancer care

Goals: Despite being both providers and intended recipients of care, informal carers in cancer palliative care report high levels of distress and unmet needs. In order to develop supportive care strategies, this analysis aimed to identify which patient characteristics contribute to carer psychological distress and which coping strategies carers employ.; Patients and Methods: Informal carers attending two home palliative care services gave cross-sectional data regarding patient characteristics and their own psychological status using standardised measures.

Thu, 07/20/2017 - 15:12

The information needs of carers of adults diagnosed with epilepsy

Aim: The aim of the study was to explore the information needs of informal carers, and how information from health professionals can become more effective for families caring for people with epilepsy. Methods: A combined methodology was used, comprising an interview study and a survey. Twelve in-depth interviews with carers were carried out. The questionnaire was developed using the interview data, to which 70 carers responded. Results: Four main themes have been drawn from the study.

Thu, 07/20/2017 - 15:11

Informal carers of stroke survivors-factors influencing carers: a systematic review of quantitative studies

Purpose. Despite increasing evidence of adverse effects on informal carers of caring for stroke survivors, little is known about the characteristics of carers and survivors that influence carer outcomes. The purpose of this review is to summarize factors influencing outcomes in carers of stroke survivors. Methods. A systematic review of studies identified from English language medicine, nursing and psychology databases from 1996 - 2006 was carried out. Results. Thirty-nine studies were identified. Studies from Europe and the USA investigating negative carer outcomes dominated.

Thu, 07/20/2017 - 15:11

Malignant fungating wounds – The meaning of living in an unbounded body

Background: Malignant fungating wounds may have significant physiological, psychological and emotional consequences on patients and their families. This study focuses on understanding the lived experiences of patients with a malignant fungating breast wound and their informal carers.

Method: The methodological framework of interpretative phenomenological approach according to Heidegger was used. Nine patients were interviewed from January until November 2009.

Thu, 07/20/2017 - 15:11

Young carers as co-designers of a web-based support system: the views of two publics

Aim: The aim of the study was to reveal young carers' views of design of a web-based support system (WBSS) directed to them and the differences between their views and the views of project representatives (PRs), in a participatory design process.

Thu, 07/20/2017 - 15:11

Preference for place of death in Germany

Background: Dying in the preferred place is considered a key requirement for a “good death.” The aims of our study were to explore preferred places of death of deceased people and their bereaved relatives in Rhineland-Palatinate (Germany). We further wanted to assess the congruence between preferred and actual place of death.

Thu, 07/20/2017 - 15:11

Growing and gaining through caring for a loved one with dementia

Aim: To investigate the gains experienced by family caregivers of persons with dementia. Methods: Twelve respondents were recruited using purposive sampling from three institutions around Singapore. A qualitative design, guided by the grounded theory approach, was adopted and involved semi-structured, in-depth, face-to-face interviews. The interviews were recorded, transcribed and analyzed using open, axial and selective coding. Results: All caregivers interviewed reported having gained from caregiving.

Thu, 07/20/2017 - 15:10