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Beyond diagnosis and survivorship: findings from a mixed-methods study of a community-based cancer support service

This consumer-led research investigated the client experiences and the individual and community benefits of a community-based cancer support service operating in a regional setting. The study included cross-sectional surveys, focus group discussions and key-informant interviews. In total, 114 clients, 28 carers and 20 therapists were surveyed; three client focus groups were conducted and five directors and staff were interviewed. For many clients and carers, the warm welcome experienced at first contact sets the tone for a long-term association with the organisation.

Thu, 08/30/2018 - 13:27

Working with Families Affected by Mental Distress: Stakeholders' Perceptions of Mental Health Nurses Educational Needs

Family and informal caregivers provide a substantial amount of care and support to people who experience mental health problems. The aim of this study was to explore mental health nurses', students' and service users' perceptions of the knowledge, skills and attitudes that are required by mental health nurses to work with families and carers using a qualitative methodology. Three themes emerged from the data: Knowledge of the family and how mental distress affects the family; working with the family – support and education; and valuing the role of the family.

Fri, 08/17/2018 - 16:22

Recognition of preclinical signs of dementia: A qualitative study exploring the experiences of family carers and professional care assistants

Aims and objectives: To identify preclinical signs of dementia by exploring the experiences of family caregivers and professional care assistants. Background: Dementia results in disability, emotional strain and financial loss for people with dementia, family members and nations. Informal identification of social and behavioural risk signifiers could facilitate timely interventions with potential to delay onset of serious disability. Design: A retrospective qualitative approach using a naturalistic interpretive design was used.

Fri, 08/17/2018 - 15:58

“You don't look for it”—A study of Swiss professionals’ awareness of young carers and their support needs

While political and public interest in providing support for family carers is growing, so called young carers and young adult carers—young persons under the ages of 18 and 25 respectively—mostly remain unrecognised. Yet, this vulnerable group is in need of special attention and support from professionals in order to get along with the situation of an ill family member and the caring duties they perform.

Wed, 08/15/2018 - 15:07

Spinal cord injury and long-term carers: Perceptions of formal and informal support

The grounded theory study from which this paper is drawn explored the experiences of partners and other long-term family carers living with, and supporting, a person with a spinal cord injury over long periods of time. Eleven (11) female carers with between eight and 33 years of living with, and supporting, a family member with a spinal cord injury were purposively recruited to the study. The study identified a number of key issues for long-term carers in this context.

Wed, 07/04/2018 - 16:50

Considerations in developing and delivering a non-pharmacological intervention for symptom management in lung cancer: the views of health care professionals

Background: A respiratory distress symptom cluster has recently been identified in lung cancer associated with breathlessness, cough and fatigue, and the study reported here is part of a wider body of work being undertaken to develop a novel non-pharmacological intervention (NPI) for the management of this symptom cluster. The current paper reports the views of health care professionals (HCPs) involved with cancer care regarding the most appropriate ways of developing and delivering such a novel intervention.

Thu, 07/20/2017 - 15:23

'The web is not enough, it's a base'--an explorative study of what needs a web-based support system for young carers must meet

The aim of this study was to gain knowledge about the specific needs that a web-based support system for young carers (YCs) must meet. Twelve young people with experience of caring for and supporting a close friend, partner or relative with mental illness (MI) were interviewed about their life situation, support needs and opinions about a hypothetical web-based support system. The transcribed interviews were analysed using content analysis.

Thu, 07/20/2017 - 15:20

The use of telecare for people with chronic obstructive pulmonary disease: implications for management

Aim  To evaluate the telecare service offered by Home Care teams to patients with chronic obstructive pulmonary disease (COPD).

Background  The use of telecare aims to support older people in remaining independent at home, reducing hospital admissions and improving the quality of life for older people and their informal carers. In the redesign of managed care for people with COPD using telecare, an evaluation of the implementation process is necessary.

Thu, 07/20/2017 - 15:19

Development and psychometric properties of the Glasgow Depression Scale for people with a learning disability

Background There is no reliable and valid self-report measure of depressive symptoms for people with learning disabilities. Aims To develop a scale for individuals with learning disability, and a supplementary scale for carers. Method Items were generated from a range of assessment scales and through focus groups. A draft scale was piloted and field tested using matched groups of people with or without depression, and their carers.

Thu, 07/20/2017 - 15:19

Family voices: life for family carers of people with intellectual disabilities in Ireland

Background: Families in Ireland remain the main providers of support for people with Intellectual disabilities, and the aim of this study was to map their life experiences whilst involving their family members as co-researchers.

Materials and Method: This qualitative, participatory study involved 10 focus groups attended by 70 parents and siblings of people with intellectual disabilities. Data were analysed using thematic analysis.

Thu, 07/20/2017 - 15:18