Family burden in long-term diseases: a comparative study in schizophrenia vs. physical disorders

Magliano, Lorenza; Fiorillo, Andrea; Rosa, Corrado De; Malangone, Claudio; Maj, Mario

doi:10.1016/j.socscimed.2004.11.064

Cited by 217 publications

(204 citation statements)

References 50 publications

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“…Recently published evidence indicates they are up to 10 times more isolated than non-carers but are also significantly more socially isolated than carers of people with other health conditions. [6][7][8] Poor levels of physical health, including sleep difficulties,…”

Section: Challenges Faced By Carersmentioning

confidence: 99%

Understanding the needs of carers of people with psychosis in primary care

2016

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Section: Challenges Faced By Carersmentioning

confidence: 99%

Understanding the needs of carers of people with psychosis in primary care

2016

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“…100 A study comparing family support available to people with schizophrenia with those with physical conditions found the former had much lower levels of social support available in emergencies. 101 A literature review outlined how social networks influence a number of practices of self-care in long-term illness, including how the individual perceives their illness, norms and influences around physical activity and health service access. 102 This review team highlighted the importance of home life including social connections within the home in the day-to-day management of long-term conditions.…”

Section: The Recovery Approachmentioning

confidence: 99%

Improving community health networks for people with severe mental illness: a case study investigation

Pinfold

Sweet

Porter³

et al. 2015

Health Services and Delivery Research

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IntroductionPolicy drivers in mental health to address personal recovery, stigma and poor physical health indicate that new service solutions are required. This study aimed to understand how connections to people, places and activities were utilised by individuals with severe mental illness (SMI) to benefit health and wellbeing.MethodsA five-module mixed-methods design was undertaken in two study sites. Data were collected from 150 network-mapping interviews and 41 in-depth follow-up interviews with people with SMI; in-depth interviews with 30 organisation stakeholders and 12 organisation leaders; and 44 telephone interviews with practitioners. We undertook a three-stage synthesis process including independent lived experience feedback, and a patient and public involvement team participated in tool design, data collection, analysis and write-up.ResultsThree personal network types were found in our study using the community health network approach: diverse and active; family and stable; formal and sparse. Controlled for other factors we found only four variables significantly associated with which network type a participant had: living alone or not; housing status; formal education; long-term sickness or disability. Diagnosis was not a factor. These variables are challenging to address but they do point to potential for network change. The qualitative interviews with people with SMI provided further understanding of connection-building and resource utilisation. We explored individual agency across each network type, and identified recognition of the importance and value of social support and active connection management alongside the risks of isolation, even for those most affected by mental illness. We identified tensions in personal networks, be that relationships with practitioners or families, dealing with the impact of stigma, or frustrations of not being in employment, which all impact on network resources and well-being. The value of connectedness within personal networks of people, place and activity for supporting recovery was evident in shaping identity, providing meaning to life and sense of belonging, gaining access to new resources, structuring routines and helping individuals ‘move on’ in their recovery journey.Health-care practitioners recognised that social factors were important in recovery but reported system-level barriers (workload, administrative bureaucracy, limited contact time with clients) in addressing these issues fully. Even practitioners working in third-sector services whose remit involved increasing clients’ social connection faced restrictions due to being evaluated by outcome criteria that limited holistic recovery-focused practices. Service providers were keen to promote recovery-focused approaches. We found contrasts between recovery ideology within mental health policy and recovery practice on the ground. In particular, the social aspects of supporting people with SMI are often underprioritised in the health-care system. In a demanding and changing context, strategic multiagency working was seen as crucial but we found few examples of embedded multisector organisation partnerships.ConclusionWhile our exploratory study has limitations, findings suggest potential for people with SMI to be supported to become more active managers of their personal networks to support well-being regardless of current network type. The health and social care system does not currently deliver multiagency integrated solutions to support SMI and social recovery.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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“…[1][2][3] Poor adherence is also associated with an increased risk of relapse, 4,5 a higher rate of hospital readmissions, 6 a higher level of residual symptoms, 5 a poorer quality of life, 6 and lower overall functioning. 7 Social support has also been linked to outcome in schizophrenia and related disorders, either directly 8 or through the impact of family-related interventions on symptoms, 9 relapse, 10 social functioning, 9 as well as the number and length of hospitalizations. [11][12][13] Further, numerous studies reveal the positive impact of social support and the quality of social networks on remission status, 14 improvement of symptoms, rates of hospitalization, 15 and the degree of adaptive functioning.…”

Section: Limitationsmentioning

confidence: 99%

The Influence of Perceived Social Support on Medication Adherence in First-Episode Psychosis

et al. 2013

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Objective: Our study examines the unique influence of social and family support on adherence to medication in a sample of patients treated for first-episode psychosis (FEP).Method: Social and family support using the Multidimensional Scale of Perceived Social Support and medication adherence (consensus of subjective and objective data) were evaluated on a monthly basis during a 6-month period in a sample of 82 FEP patients. The relation between social support and adherence was evaluated using correlational and linear regression analyses, controlling for other relevant variables. A longitudinal analysis using hierarchical linear models was conducted to model change in adherence over time. Results:Monthly correlations between social support and adherence were significant at 4 of 7 time points during a 6-month period. There was a modest correlation between the percentage of months of good adherence and the average level of family support across the study period. The linear regression failed to demonstrate a significant relation between baseline social support and overall adherence during the entire study period. Change in social support over time was inversely associated with change in adherence. Conclusions:Our study emphasizes the concurrent influence of social (mostly family) support on adherence but this effect does not persist over time. Changes in the degree of social support may have a complex effect on changes in adherence. W W W

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Family burden in long-term diseases: a comparative study in schizophrenia vs. physical disorders

Cited by 217 publications

References 50 publications

Understanding the needs of carers of people with psychosis in primary care

Understanding the needs of carers of people with psychosis in primary care

Improving community health networks for people with severe mental illness: a case study investigation

The Influence of Perceived Social Support on Medication Adherence in First-Episode Psychosis

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