Development and feasibility of Inlife: A pilot study of an online social support intervention for informal caregivers of people with dementia

Summary/AbstractOur experience evaluating a museum program for people with dementia together with their family members demonstrated benefits for all participants. We hypothesized that participation in a chorus would also have positive effects, giving them an opportunity to share a stimulating and social activity that could improve their quality of life. We inaugurated a chorus for people with dementia and their family caregivers in 2011, which rehearses and performs regularly. Each person with dementia must be accompanied by a friend or family member and must commit to attending all rehearsals and the concert that ensues. A pilot study included a structured assessment, take home questionnaires and focus groups. Analyses of pre-post scores were conducted; effect size was quantified using Cohen's d. Results showed that quality of life and communication with the other member of the dyad improved (Effect size: Cohen's d between 0.32 and 0.72) for people with dementia; quality of life, social support, communication and self-esteem improved (d between 0.29 and 0.68) for caregivers. Most participants stated that benefits included belonging to a group, having a normal activity together and learning new skills. Participants attended rehearsals in spite of harsh weather conditions. The chorus has been rehearsing and performing together for more than 6 years and contributing to its costs. Results of this pilot study suggest that people in the early to middle stage of dementia and their family members and friends can enjoy and learn from rehearsing and performing in concerts that also engage the wider community. It is essential to conduct additional larger studies of the benefits of participating in a chorus, which may include improved quality of life and social support for all, and reduced cognitive decline among people with dementia.

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EFFECTS OF A SOCIAL SUPPORT INTERVENTION ON HEALTH OUTCOMES IN RESIDENTS OF A DOMESTIC VIOLENCE SHELTER: A PILOT STUDY

Issues in Mental Health Nursing ◽

10.1080/01612840590959416 ◽

2005 ◽

Vol 26 (6) ◽

pp. 575-590 ◽

Cited By ~ 69

Author(s):

Rose Constantino ◽

Yookyung Kim ◽

Patrica A. Crane

Keyword(s):

Social Support ◽

Domestic Violence ◽

Pilot Study ◽

Health Outcomes ◽

Support Intervention ◽

Domestic Violence Shelter

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Effects of e-Health Training and Social Support Interventions for Informal Caregivers of People with Dementia—A Narrative Review

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph18157728 ◽

2021 ◽

Vol 18 (15) ◽

pp. 7728

Author(s):

Esther Sitges-Maciá ◽

Beatriz Bonete-López ◽

Antonio Sánchez-Cabaco ◽

Javier Oltra-Cucarella

Keyword(s):

Social Support ◽

Information And Communication Technologies ◽

Negative Impact ◽

Informal Caregivers ◽

Narrative Review ◽

Emotional Wellbeing ◽

Health Crisis ◽

Health Training ◽

People With Dementia ◽

And Training

Along with the burden commonly experienced by informal caregivers (ICs) of people with dementia (PwD), associated with the progressive decline that accompanies dementia, the lockdown due to the public health crisis has had a great negative impact on the emotional wellbeing, physical health, and social relationships of ICs. Support interventions through telemedicine represent an opportunity for ICs to learn the skills required for the care and maintenance of social networks. In this work, a narrative review of the effects of e-health training and social support interventions was carried out. A literature search was conducted using the ProQuest, Ovid, and Scopus databases. Information regarding social support (SS), psychological interventions, and training for the management of medications and behavioral changes was extracted. One hundred and nine studies were included in this review. Forums and training platforms were the main tools for ICs. The most effective platforms to improve SS include the participation of both ICs and health professionals. However, no significant improvements in objective caring skills were identified. Platforms developed specifically for ICs should be based in tools that ICs are familiar with, because many ICs have not yet incorporated Information and Communication Technologies in many activities of their daily lives. Education in the digitalization to ICs of PwD should be one of the priority objectives in telehealth interventions.

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Online social support groups for informal caregivers of hospice patients with cancer

European Journal of Oncology Nursing ◽

10.1016/j.ejon.2019.101698 ◽

2020 ◽

Vol 44 ◽

pp. 101698 ◽

Cited By ~ 6

Author(s):

Jacquelyn J. Benson ◽

Debra Parker Oliver ◽

Karla T. Washington ◽

Abigail J. Rolbiecki ◽

Cynthia B. Lombardo ◽

...

Keyword(s):

Social Support ◽

Support Groups ◽

Informal Caregivers ◽

Online Social Support ◽

Patients With Cancer ◽

Hospice Patients

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P1-588: THE ASSOCIATION OF HEALTH LITERACY AND ELECTRONIC HEALTH LITERACY WITH SELF-EFFICACY, COPING, CAREGIVING ATTITUDES AND SOCIAL SUPPORT AMONG CARERS OF PEOPLE WITH DEMENTIA: A PILOT STUDY

Alzheimer s & Dementia ◽

10.1016/j.jalz.2018.06.600 ◽

2006 ◽

Vol 14 (7S_Part_10) ◽

pp. P562-P562

Author(s):

Areti Christina Efthymiou ◽

Andreas Charalambous ◽

Nicos Middleton ◽

Evridiki Papastavrou

Keyword(s):

Social Support ◽

Health Literacy ◽

Pilot Study ◽

Self Efficacy ◽

People With Dementia ◽

Electronic Health

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Depressive symptoms associations with online and in person networks in an online gaming community: a pilot study

Mental Health Review Journal ◽

10.1108/mhrj-11-2019-0044 ◽

2020 ◽

Vol 25 (1) ◽

pp. 21-33 ◽

Cited By ~ 2

Author(s):

Tyler Prochnow ◽

Megan S. Patterson ◽

Logan Hartnell ◽

M. Renée Umstattd Meyer

Keyword(s):

Social Support ◽

Depressive Symptoms ◽

Pilot Study ◽

Real Life ◽

Online Gaming ◽

Demographic Characteristics ◽

Future Research ◽

Content Type ◽

Online Social Support ◽

Multi Level

Purpose Increases in video game use have led to mental health concerns, citing greater risk for depressive symptoms (DS) and reduced “in-real-life” (IRL) social involvement. However, recent studies have uncovered potential social benefits for online gaming. Many games provide avenues to extend real life relationships and make new online friendships. The purpose of this pilot study is to use social network analysis to determine associations between connections and DS in a gaming community. Design/methodology/approach As a pilot study, members of an online gaming site were asked to report demographic characteristics, DS, IRL social support, online social support and IRL people and members of the online community with whom they spoke to about important life matters. Multi-level modeling was used to parse variance described by demographic characteristics, IRL measures and online measures. Linear network autocorrelation modeling (LNAM) was used to determine relationships between network connections and DS. Findings Members (n = 37; µ = 24.76 years old, SD = 6.55; 100% male; 89.2% white) on average felt DS’ “not at all” to “several days” over the past two weeks. Multi-level modeling including online network measures explained 50% of variance (R2 = 0.50, F (9,27) = 2.98, p = 0.01); online connections were associated with DS (ß = 0.46). LNAM indicated DS were associated with IRL support (ß = −2.66), IRL connections (ß = 1.81), online support (ß = 2.40) and network effects (ß = 0.06), which indicates that a gamer’s DS were similar to those of their online connections. Originality/value Members with more DS may be seeking help via online channels. This may be important for future research to consider alternative forms of help-seeking behavior.

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How do activating interventions fit the personal needs, characteristics and preferences of people with dementia living in the community and their informal caregivers?

Dementia ◽

10.1177/1471301216662378 ◽

2016 ◽

Vol 18 (1) ◽

pp. 157-177 ◽

Cited By ~ 5

Author(s):

Netta Van’t Leven ◽

Jacomine de Lange ◽

Anna-Eva Prick ◽

Anne Margriet Pot

Keyword(s):

Occupational Therapy ◽

Daily Life ◽

Early Stage ◽

Comparative Method ◽

Informal Caregivers ◽

Psychosocial Interventions ◽

Structured Interviews ◽

Support Intervention ◽

People With Dementia ◽

Pleasant Events

Psychosocial interventions aim to mitigate the serious consequences of dementia for the daily life of people with dementia and their informal caregivers. To deliver a person-centred approach, it is crucial to take needs, characteristics and preferences of people with dementia and their informal caregivers into account. However, these factors are generally not systematically checked in order to determine which intervention will be most appropriate. Additionally, little is known about which intervention suits which needs, characteristics and preferences. Therefore, this study examined how three multiple-component, activating dyadic interventions fitted needs, characteristics, and preferences of both the people with dementia and their informal caregivers: the Pleasant Events Program, the Exercise and Support Intervention for People with Dementia and Their Caregivers, and Occupational Therapy. Semi-structured interviews were held with participants in either one of the interventions, 34 dyads and 19 professionals. The constant comparative method was used for the analysis. Five factors influenced the dyad’s ‘fit’: timing, need for activity, lifestyle, apart-or-together and meaning of (lost) activity. The factors ‘timing’ and a ‘need for activity’ were conditional for these activating interventions. Dyads in an early stage of dementia, who were aware of the effects on daily life, were open to a change in routine, and had a need to maintain activities profited from these interventions. Three distinctive factors were important for the fit of one of the three interventions in particular: ‘lifestyle’, ‘apart or together’ and ‘meaning of (lost) activity’. The Pleasant Events Programme and the Exercise and Support intervention properly addressed the need for activities that afforded daily pastimes or structure. The Exercise and Support Intervention addressed the need for physical activity and emphasized shared activity. Occupational Therapy properly addressed the need for self-sufficiency, maintaining activities and adjustment to physical limitations. These factors can contribute to a more person-centred application of the interventions.

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