There is much room for improvement in the TBI community care in the UK. Our findings support the development of a holistic service that can address the multifactorial problems which the patients with TBI and their families face.
With an ageing population, there are increasing numbers of experienced family carers (FCs) who could provide peer support to newer carers in a similar care situation. The aims of this paper are to: (i) use a cross-sectional study design to compare characteristics of volunteers and recipients of a peer support programme for FCs of people with dementia, in terms of demographic background, social networks and psychological well-being; and (ii) use a longitudinal study design to explore the overall impact of the programme on the volunteers in terms of psychological well-being. Data were collected from programmes run in Norfolk, Northamptonshire, Berkshire and four London boroughs between October 2009 and March 2013. The volunteer role entailed empathic listening and encouragement over a 10-month period. Both carer support volunteers (N = 87) and recipient FCs (N = 109) provided baseline demographic information. Data on social networks, personal growth, self-efficacy, service use and well-being (SF-12; EuroQol Visual Analogue Scale; Hospital Anxiety and Depression Scale; Control, Autonomy, Self-Realisation, Pleasure-19) were collected prior to the start of the intervention (N = 43) and at either 3- to 5 month or 10 month follow-up (N = 21). Volunteers were more likely than recipients of support to be female and to have cared for a parent/grandparent rather than spouse. Volunteers were also more psychologically well than support recipients in terms of personal growth, depression and perceived well-being. The longitudinal analysis identified small but significant declines in personal growth and autonomy and a positive correlation between the volunteers' duration of involvement and perceived well-being. These findings suggest that carers who volunteer for emotional support roles are resilient and are at little psychological risk from volunteering.
Whilst positive and negative aspects of general volunteering have been noted in the literature, little is known about the experience of volunteering to provide peer support to carers of people with dementia. The present study explored the impact of participating in a carer supporter programme in the context of previous caring experiences. Eight carer supporters, who had participated in the programme for at least 5 months, took part in semi-structured interviews to elicit rich, extended narratives of their experiences. Narrative analysis of the interview transcripts covered structural, thematic and wider socio-cultural components. The results indicated that most carer supporters naturally reflected on the positive impact of having shared experiences with the newer carers. Emotional and practical gains from participating in the programme were highlighted, as well as a greater sense of connection with others, extending to a wider social and organisational network. However, carer supporters also reflected on the negative emotions that could be evoked. The findings of the study indicate that the carer supporter role has potential to facilitate new roles, activities and social identities, but participation needs to be considered in relation to potentially stressful transitional points throughout the caring career. Role definition issues also need further consideration.
The syndromic primary immunodeficiencies are disorders in which not only the immune system but also other organ systems are affected. Other features most commonly involve the ectodermal, skeletal, nervous, and gastrointestinal systems. Key in identifying syndromic immunodeficiencies is the awareness that increased susceptibility to infections or immune dysregulation in a patient known to have other symptoms or special features may hint at an underlying genetic syndrome. Because the extraimmune clinical features can be highly variable, it is more difficult establishing the correct diagnosis. Nevertheless, correct diagnosis at an early age is important because of the possible treatment options. Therefore, diagnostic work-up is best performed in a center with extensive expertise in this field, having immunologists and clinical geneticists, as well as adequate support from a specialized laboratory at hand. This paper provides the general pediatrician with the main clinical features that are crucial for the recognition of these syndromes.
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