Social aspects of caregiving for people living with motor neurone disease: Their relationships to carer well-being

2005 ◽  
Vol 3 (1) ◽  
pp. 33-38 ◽  
Author(s):  
ANTHONY LOVE ◽  
ANNETTE STREET ◽  
ROBIN RAY ◽  
ROD HARRIS ◽  
ROGER LOWE
Keyword(s):  
Social Support ◽  
Multivariate Analyses ◽  
Well Being ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Support Network ◽  
Social Aspects ◽  
Caregiver Network ◽  
Univariate Analyses ◽  
Professional Intervention

Objective:To investigate social aspects of caregiving for people living with motor neurone disease (MND) and examine their relationships to carers' well-being.Methods:A questionnaire was developed to assess carers' perceptions of their social support network (the Caregiver Network Scale, CNS), including measures of sociodemographic status and general well-being (GHQ-12), and mailed to carers of people living with MND.Results:Seventy-five surveys were returned (response rate: 33%). In univariate analyses, relationships between well-being and carer age, time as caregiver, and four subscales of the CNS were found to be significant. However, multivariate analyses combining their effects revealed that stress on carer social networks was the best single contributor to predictions of carer well-being.Significance of results:Results indicate that prolonged caring for others living with MND has substantial costs for the carer in terms of loss of social support, which affects carer well-being and impacts ultimately on those living with MND. The CNS offers promise as a measure for screening at-risk carers; those who are distressed become candidates for professional intervention to help them cope better. Further research, providing validation of the scale for this task, is recommended.

scholarly journals Convoys of social support in Mexico

2015 ◽  
Vol 40 (4) ◽  
pp. 324-333 ◽  
Author(s):  
Heather R. Fuller-Iglesias ◽  
Toni Antonucci
Keyword(s):  
Social Support ◽  
Older Adults ◽  
Social Relations ◽  
Intergenerational Relationships ◽  
Well Being ◽  
Support Network ◽  
Future Research ◽  
Frequent Contact ◽  
Gender And Education ◽  
The Social

The Convoy Model suggests that at different stages of the lifespan the makeup of the social support network varies in step with developmental and contextual needs. Cultural norms may shape the makeup of social convoys as well as denote socio-demographic differences in social support. This study examines the social convoys of adults in Mexico. Specifically, it examines whether social network structure varies by age, gender, and education level, thus addressing the paucity of research on interpersonal relations in Mexico. A sample of 1,202 adults (18–99 years of age) was drawn from the Study of Social Relations and Well-being in Mexico. Hierarchical regression analyses indicated older adults had larger, more geographically proximate networks with a greater proportion of kin but less frequent contact. Women had larger, less geographically proximate networks with less frequent contact. Less educated individuals had smaller, more geographically proximate networks with more frequent contact and a greater proportion of kin. Age moderated gender and education effects indicated that younger women have more diverse networks and less educated older adults have weaker social ties. This study highlights socio-demographic variation in social convoys within the Mexican context, and suggests implications for fostering intergenerational relationships, policy, and interventions. Future research on Mexican convoys should further explore sources of support, and specifically address implications for well-being.

Social Support and Well-Being: Preliminary Indicators Based on Two Samples of the Elderly

1986 ◽  
Vol 21 (1) ◽  
pp. 61-77 ◽  
Author(s):  
Mary J. Levitt ◽  
Toni C. Antonucci ◽  
M. Cherie Clark ◽  
James Rotton ◽  
Gordon E. Finley
Keyword(s):  
Social Support ◽  
Life Satisfaction ◽  
Well Being ◽  
The Elderly ◽  
National Sample ◽  
Network Size ◽  
Support Network ◽  
Geographic Proximity ◽  
Supportive Relationships ◽  
Two Samples

The structure of social support and its relation to health, affect, and life satisfaction are compared for two samples of the elderly. The first is a national representative sample; the second is a distressed sample from South Miami Beach. Although there are similarities in the structure of social support across the two groups, those in the Miami Beach sample report fewer support figures, and far fewer within geographic proximity, than do those in the national sample. This comparative network impoverishment is particularly marked for male respondents and is accentuated by a high number of isolates in this group. In addition, stronger relationships are found between support network size and affect, and among affect, life satisfaction, and health in the South Miami Beach sample. Older men in poor health and without supportive relationships are targeted as a particularly high risk subgroup. The discussion includes a focus on personal, situational, and life span differences related to variations in support and well-being and a consideration of implications for more recent waves of elderly sun-belt migrants.

Abstract 14127: Measures of Patient Activation and Social Support in a Peer-led Support Network for Women With CVD

Circulation ◽  
2015 ◽  
Vol 132 (suppl_3) ◽  
Author(s):  
Dawn Witt ◽  
Gretchen Benson ◽  
Arthur Sillah ◽  
Susan Campbell ◽  
Kathy Berra
Keyword(s):  
Social Support ◽  
Heart Disease ◽  
Online Survey ◽  
Local Community ◽  
Patient Activation ◽  
Well Being ◽  
Active Role ◽  
Support Network ◽  
Strong Impact ◽  
The Impact

Introduction: Social support has been recognized as having a strong impact on health and well-being and has also been shown to have beneficial effects in a wide variety of disease states. Social support from friends, family or peers can augment the care offered in traditional healthcare settings by providing advice, encouragement and education However, there is limited research on the impact of peer-led support programs among women living with cardiovascular disease (CVD). Objective: To examine the relationship between patient activation and measures of social support among women who attended a WomenHeart: The National Coalition for Women with Heart Disease peer-led support program in their local community. We hypothesized that high levels of social support would be associated with high levels of patient activation in this study population. Methods: Participants were recruited from 50 national WomenHeart Support Network groups. A 70 item, online survey was administered and the main analytic sample for this study included 157 women. Multivariable logistic regression was used to examine the association between patient activation levels (Lower activation levels: 1,2 vs higher activation levels: 3,4) and social support scores (range: lowest 8 to highest 34), adjusting for age. Results: Study participants reported high levels of social support and patient activation. Those who were at or above the median for the social support measures (indicating high levels of social support) had greater odds of high levels of patient activation (levels 3 or 4) compared to individuals reporting low levels of social support (OR 2.23 95%CI1.04, 4.76, p = 0.012). Conclusions: Results of our survey demonstrate that this group of women with coronary heart disease who regularly attended a peer-led support group and indicated a high level of social support report taking a more active role in self-management behaviors.

scholarly journals Building and Connecting: Family Strategies for Developing Social Support Networks for Adults With Down Syndrome

2019 ◽  
Vol 25 (1) ◽  
pp. 128-151 ◽  
Author(s):  
Anne E. Roll ◽  
Barbara J. Bowers
Keyword(s):  
Social Support ◽  
Down Syndrome ◽  
Family Members ◽  
Well Being ◽  
Support Networks ◽  
Support Network ◽  
Future Research ◽  
Social Support Networks ◽  
The Social ◽  
Professional Resources

Being embedded in social networks is crucial for well-being and health. While this is particularly the case for people with Down syndrome (DS), our knowledge of how their support networks are developed is limited. This article investigates the role of family members in developing and maintaining the social support networks of their adult children with DS. Based on 29 interviews with family members, a grounded theory study was conducted. The Family Building and Connecting (BAC) framework was developed, which distinguishes a “building” and a “connecting” approach. The building approach includes strategies that rely on family members and close friends for building a support network for the person with DS. The connecting approach includes strategies that connect the person with DS to external and often professional resources and services. Distinguishing these approaches is important for future research and for strengthening the support networks of people with DS and their families.

scholarly journals Communicating psychosocial well-being in motor neurone disease to staff: results from a World Café approach

2019 ◽  
Vol 28 (9) ◽  
pp. 2579-2584 ◽  
Author(s):  
Clarissa Giebel ◽  
Gillian Medley ◽  
Sandra Smith ◽  
Maria Thornton ◽  
Moira Furlong ◽  
...  
Keyword(s):  
Well Being ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
World Cafe

From where does my support come? Unpacking the contribution of support for police

2020 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
April D. Schantz ◽  
Stefany Coxe ◽  
Valentina Bruk-Lee
Keyword(s):  
Social Support ◽  
Social Network ◽  
Police Officers ◽  
Psychological Health ◽  
Well Being ◽  
Support Network ◽  
Social Support Network ◽  
Component Structure ◽  
Content Type ◽  
The Impact

PurposeThe purpose of this research is to explore the structure and impact of police officers' social support network on health and well-being. Social integration promotes opportunities for regular positive experiences and a set of stable, socially rewarded roles within one's work and life domains. Identifying the structure and impact areas of police officers' social support network provide guidance for initiatives in improving psychological health for the department and individual officers.Design/methodology/approachSurvey of 162 police officers' sources of support provided a holistic representation of their social network across seven sources. Principle component analyses were conducted to explore the structure of one's social network. Multiple regression analyses were conducted to examine overall impact of one's social support network and relative contributions of support sources in terms of increased well-being and reduced strain.FindingsA three-component structure of social support was partially supported. Overall models of the impact of one's social support network related to increased well-being and reduced strain was supported. Relative contributions of support sources show different patterns based on outcome of interest.Practical implicationsProvides guidance for addressing the psychological well-being needs for officers holistically. In other words, treating officers as whole beings, whose system of support and psychological health is integrated, not piecemeal.Originality/valueExamination of principle effects of support provides a parsimonious approach to considering the holistic value of one's support system, apart from specific stressors or conditions.

Factors to consider for motor neurone disease carer intervention research: A narrative literature review

2016 ◽  
Vol 15 (5) ◽  
pp. 600-608 ◽  
Author(s):  
Cathy Gluyas ◽  
Susan Mathers ◽  
Nicole Hennessy Anderson ◽  
Anna Ugalde
Keyword(s):  
Social Support ◽  
Lived Experience ◽  
Psychosocial Intervention ◽  
Emotional Health ◽  
Intervention Research ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Factors Affecting ◽  
Narrative Literature Review ◽  
Relationship Factors

ABSTRACTObjective:The experience of caregiving in the context of motor neurone disease (MND) is extremely challenging. Over the past 15 years, quantitative and qualitative studies have delineated the psychosocial aspects of this experience, exploring its impact on caregivers' quality of life, rates of depression, distress, anxiety, and burden. Our paper aimed to provide an overview of the lived experience of MND caregivers, identifying the variables that can influence MND caregiver functioning that are relevant to the development of an intervention.Method:A narrative review was conducted, synthesizing the findings of literature retrieved from 2000 to early 2016.Results:A total of 37 articles were included in the review. The articles varied considerably in terms of methodology and quality. The main influential aspects reported and identified were factors pertaining to the patient, factors intrinsic to the caregiver, relationship factors, and social support factors.Significance of Results:There is evidence to support the fact that caregivers have poorer outcomes when they care for patients with a more severe clinical profile, poorer emotional health or neurobehavioral concerns, or when the caregivers themselves struggle with adaptive problem-solving and coping skills. The availability and use of social support are also likely to be important for caregiver psychosocial outcomes. Further investigation is required to clarify the influence of changes in the relationship with the patient. Significant factors affecting the caregiver experience are considered in relation to their amenability to psychosocial intervention. Recommendations are made regarding the optimal features of future psychosocial intervention research.

scholarly journals Coping with Wolf-Hirschhorn Syndrome: quality of life and psychosocial features of family carers

2020 ◽  
Author(s):  
Sarah Berrocoso ◽  
Imanol Amayra ◽  
Esther Lázaro ◽  
Oscar Martínez ◽  
Juan Francisco López-Paz ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Support Groups ◽  
Coping Styles ◽  
Negative Relationship ◽  
Well Being ◽  
Postnatal Growth ◽  
Support Network ◽  
The Impact

Abstract Background : Wolf-Hirschhorn Syndrome (WHS) is a rare, congenital disease characterized by a distinctive facial phenotype, seizures, intellectual disability and developmental delay, and pre and postnatal growth requiring lifelong care. The psychosocial status of the family caregivers of children diagnosed with WHS is unknown. This study aims to characterize the sociodemographic and psychosocial profile of WHS caregivers and analyze how these variables impact their quality of life (QoL) and well-being. Results: The sociodemographic and clinical profile of 22 Spanish caregivers of children with WHS and the characteristics of those affected have been described. Significant relationships were found between sociodemographic and psychosocial characteristics among caregivers. The impact on the parents' QoL and negative relationship with the symptomatology were assessed. The use of engagement strategies such as problem focused coping was associated with improved psychological QoL and social support. Conclusions: WHS caregivers share similarities in their profile and needs with caregivers of children with other rare diseases. Pychosocial support groups involving parents caring for children with the same disease could improve caregivers’ well-being and QoL by strengthening their social support network and using positive coping styles. Keywords: Wolf-Hirschhorn syndrome; 4p deletion; caregivers; quality of life; coping; depression; social support; spirituality.

scholarly journals The Impact of a Peer Social Support Network from the Perspective of Women with Fibromyalgia: A Qualitative Study

2021 ◽  
Vol 18 (23) ◽  
pp. 12801
Author(s):  
Glòria Reig-Garcia ◽  
Cristina Bosch-Farré ◽  
Rosa Suñer-Soler ◽  
Dolors Juvinyà-Canal ◽  
Núria Pla-Vila ◽  
...  
Keyword(s):  
Social Support ◽  
Complex Disease ◽  
Patient Empowerment ◽  
Well Being ◽  
Support Network ◽  
Social Support Network ◽  
Structured Interviews ◽  
Positive Effects ◽  
Peer Social Support ◽  
The Impact

Background: Fibromyalgia is a chronic and complex disease whose management by patients requires a high level of commitment. Patient empowerment therefore represents an important milestone in chronic disease treatment and control. We explored the impact of a peer social support network from the perspective of women with fibromyalgia. Methods: A generic qualitative design was proposed for the study, for which women who had been diagnosed with fibromyalgia were purposefully selected. Six semi-structured interviews were conducted, and the collected data were thematically analysed. Results: Three key themes emerged regarding the peer social support network: (1) empowerment (facilitating acceptance of the diagnosis and acting as a source of information); (2) effects on well-being and quality of life (attenuated the stigma, improved physical well-being, provided emotional support and was a socialization medium); and (3), valuable aspects (transmitted feelings of being understood and listened to and increased personal feelings of satisfaction). Conclusions: A peer social support network for women with fibromyalgia exerts positive effects on their physical, mental, and social well-being and empowers them to better manage their disease. Healthcare for women with fibromyalgia should include strategies that connect them through peer social support networks.

scholarly journals Emotional distress and well-being among people with motor neurone disease (MND) and their family caregivers: a qualitative interview study

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e044724
Author(s):  
Cathryn Pinto ◽  
Adam W A Geraghty ◽  
Lucy Yardley ◽  
Laura Dennison
Keyword(s):  
Emotional Distress ◽  
Well Being ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Psychological Interventions ◽  
Structured Interviews ◽  
Face To Face ◽  
Qualitative Interview Study ◽  
The Uk ◽  
Broad Understanding

ObjectiveWe aimed to get an in-depth understanding of the emotions experienced by people with motor neurone disease (MND) and their caregivers, and to explore what impacts emotional distress and well-being.DesignQualitative study using semi-structured interviews with people with MND and caregivers.SettingParticipants were recruited from across the UK and took part in interviews conducted either face to face, by telephone or email to accommodate for varying levels of disability.Participants25 people with MND and 10 caregivers took part. Participants were purposively sampled based on their MND diagnosis, symptoms and time since diagnosis.Data analysisData were analysed using inductive reflexive thematic analysis.ResultsEight broad themes were generated (20 subthemes). Participants described the emotional distress of losing physical function and having a threatened future because of poor prognosis. Keeping up with constant changes in symptoms and feeling unsupported by the healthcare system added to emotional distress. Finding hope and positivity, exerting some control, being kinder to oneself and experiencing support from others were helpful strategies for emotional well-being.ConclusionThe study provides a broad understanding of what impacts emotional distress and well-being and discusses implications for psychological interventions for people with MND and caregivers. Any communication and support provided for people with MND and their caregivers, needs to pay attention to concepts of hope, control and compassion.

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