Social networks

My research program considers family relationships across the life course: in early life, with a focus on disease prevention -- leveraging genetic risk information and relationships to motivate health-promoting behaviors -- and in later life, with a focus on informal caregiving -- identifying characteristics of those most vulnerable to, or resilient from, caregiver stress. It is fortuitous, if not tragic, then, that my research and personal worlds collided during my mother's final 8 months of life.

The authors explains how a growing UK-wide network, tide-together in dementia everyday, is ensuring that the expertise of carers influence dementia policy, research and practice. The network, created by carers for carers, does not provide direct support to services to people affected by dementia, so it's members are able to give completely impartial and independent feedback based soley on their lived experiences as carers. (Edited publisher abstract)

Objectives: Providing care for a person with dementia or other chronic illness at home often places stress on the primary caregiver. In an Irish population, ~67% of carers reported experiencing extreme physical or mental tiredness. This study aimed to identify factors that influence carer burden and identify the sub-populations of carers who are most susceptible to burden.

Background/Aims: Despite reporting high levels of burden, supporters of people with young onset dementia (YOD) underuse formal community services. Previous quantitative studies in YOD are of limited utility in guiding service design because they did not consider important contextual barriers to service use. The aim of this study was to identify all relevant barriers and describe the service features considered most important to improving uptake by people with YOD and their supporters.

AIMS AND OBJECTIVES: To explore the resources that patients diagnosed with type 2 diabetes drew upon to manage the disease in their daily lives. BACKGROUND: Type 2 diabetes is a disease affecting Australian adults at a rate described as an 'epidemic'. Treatment usually focuses on patient self-management, which may require daily blood sugar monitoring, oral medications or injectable therapies, and regulating diet and exercise.

Background: The new public health palliative care movement calls for a move away from an individualised model of caregiving to a whole of community approach which will increase expectations on community carers. In order to avoid carer isolation, exploitation and potential burnout there is then a very real need to understand environments and relationships which support collective community caregiving.

Head and neck cancer is a serious form of cancer that can generate substantial physical and psychosocial morbidity. Informal caregivers can help patients to manage head and neck cancer and its emotional impacts, both during and after treatment. Caregivers, however, can experience considerable stress as a result of their caring activities. Supportive relationships can protect caregivers from psychosocial strain.

OBJECTIVE: To assess burden and life satisfaction in family members of patients with severe traumatic brain injury (sTBI) at 1 and 2 years post-injury, examine if change in burden can be predicted by family member and patient demographics, patient's functional status, family members social network or level of burden at 1 year. METHODS: Prospective national multicenter study. Self-report from family members, patient data collected from a national cohort study on patients with sTBI. 80 family members participated. MAIN OUTCOME MEASURE: The Caregiver Burden Scale (CBS), life satisfaction.

Family caregivers of people with amyotrophic lateral sclerosis (ALS) live stressful lives in which they spend most of their time caring for their loved ones and managing difficult situations, thereby reducing the time spent in taking care of themselves. This situation may last several years. Previous literature has widely highlighted that this situation reduces caregivers’ quality of life and increases their psychological distress and risk of health problems, but there is a lack of studies that focus on psychological interventions for these situations.

This paper reviews recent research on care-giver networks and the concepts and approach that they apply, with particular reference to the support networks of the primary care-givers of older people with Alzheimer's disease. It makes the case for an integrated approach to the explanation of the various combinations of formal and informal support that are found. It argues that more attention needs to be given to transformations in care-giver networks over time, and that this will require more development of both theoretical perspectives and analytical tools.