Informal Caregivers� Experiences and Perceptions of a Web-Based Peer Support Network: Mixed-Methods Study (Preprint)

BACKGROUND Web-based peer support interventions have shown promise in reducing social isolation and social support deficits among informal caregivers, but little research has examined how caregivers use and perceive these interventions. OBJECTIVE In this study, we examined utilization and perceptions of a Web-based social support intervention for informal caregivers of wounded, ill, and injured United States military service members and veterans. METHODS This was a mixed-methods study that used quantitative survey data and qualitative data from focus groups and interviews with informal caregivers enrolled in a Web-based peer support intervention to explore their use and perceptions of the intervention. The intervention was delivered via a website that featured interest groups organized around specific topics, webinars, webchats, and messaging functionality and was moderated by professionally trained peers. This study occurred in the context of a quasi-experimental outcome evaluation of the intervention, where intervention participants were compared with a group of military caregivers who were not enrolled in the intervention. RESULTS Survey findings indicated that caregivers used the website infrequently, with 60.7% (128/211) visiting the website once a month or less, and passively, with a minority (32/144, 22.2%) of users (ie, those who had visited the website at least once during the past 3 months, N=144) posting comments or links to the network. Nonetheless, most users (121/144, 84.0%) endorsed moderate or greater satisfaction with the website on the survey, and focus group and interview participants reported benefiting sufficiently from passive use of the website (eg, reading posts). Quantitative and qualitative findings suggested that users viewed the website primarily as a source of informational support. Among 63.2% (91/144) of users who completed the survey, the most commonly reported network-related activity was obtaining information from the network’s resource library, and focus group and interview participants viewed the network primarily as an informational resource. Focus group and interview participants expressed an unmet need for emotional support and the desire for a more personal touch in the forms of more active engagement with other caregivers in the network and the creation of local, in-person support groups for caregivers. CONCLUSIONS These findings suggest that Web-based peer support interventions may lend themselves better to the provision of informational (vs emotional) support and may need to be supplemented by in-person peer support groups to better meet caregivers’ needs for emotional support.

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Informal Caregivers’ Experiences and Perceptions of a Web-Based Peer Support Network: Mixed-Methods Study

Journal of Medical Internet Research ◽

10.2196/jmir.9895 ◽

2018 ◽

Vol 20 (8) ◽

pp. e257 ◽

Cited By ~ 11

Author(s):

Christine Vaughan ◽

Thomas E Trail ◽

Ammarah Mahmud ◽

Stephanie Dellva ◽

Terri Tanielian ◽

...

Keyword(s):

Mixed Methods ◽

Peer Support ◽

Informal Caregivers ◽

Mixed Methods Study ◽

Support Network ◽

Web Based

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POS-479 ACCEPTABILITY AND FEASIBILITY OF A WEB-BASED SELF-MANAGEMENT SUPPORT INTERVENTION FOR ADULTS WITH CHRONIC KIDNEY DISEASE: A MIXED-METHODS STUDY

Kidney International Reports ◽

10.1016/j.ekir.2021.03.506 ◽

2021 ◽

Vol 6 (4) ◽

pp. S207

Author(s):

M. DONALD ◽

H. Beanlands ◽

S. Straus ◽

S. Smekal ◽

G. Herrington ◽

...

Keyword(s):

Chronic Kidney Disease ◽

Mixed Methods ◽

Kidney Disease ◽

Mixed Methods Study ◽

Self Management ◽

Management Support ◽

Web Based ◽

Support Intervention

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Medication adherence, self-efficacy and health literacy among patients with glaucoma: a mixed-methods study protocol

BMJ Open ◽

10.1136/bmjopen-2020-039788 ◽

2021 ◽

Vol 11 (1) ◽

pp. e039788

Author(s):

Maria Achilleos ◽

Anastasios Merkouris ◽

Andreas Charalambous ◽

Evridiki Papastavrou

Keyword(s):

Social Support ◽

Mixed Methods ◽

Medication Adherence ◽

Health Literacy ◽

Focus Group ◽

Self Efficacy ◽

Mixed Methods Study ◽

Focus Group Discussions ◽

Group Discussions ◽

Stage 1

IntroductionAs the world population ages, glaucoma is becoming an increasingly significant cause of blindness. A key component in the management of glaucoma is the use of prescribed medications and the adherence to treatment. However, there is evidence of low adherence to prescribed medication in chronic diseases, such as glaucoma. This study aims to explore the level of medication adherence, self-efficacy, social support and health literacy among the patients with glaucoma and to determine if there are any correlations between them. The ultimate aim is to use the information to develop an educational programme for patients with glaucoma at a later stage.Methods and analysisThis is a mixed-methods study which includes two stages: a descriptive study (stage 1) and focus group discussions (stage 2). Sample: Patients with glaucoma or ocular hypertension, using at least one kind of drops, from two ophthalmology clinics. Selected measures include: The Glaucoma Treatment Compliance Assessment Tool, The European Health Literacy Survey Questionnaire, The Glaucoma Medication Self-Efficacy Questionnaire and The Multidimensional Scale of Perceived Social Support. Two focus groups will be used for the collection of qualitative data, aiming to enrich the study with the patients’ experiences. The data will be analysed with SPSS, using descriptive and inferential statistics for stage 1 whereas content analysis will be used for the data from the focus group discussions (stage 2).Ethics and disseminationPermission to conduct the study was received from the National Bioethics Committee and the board of management of the two ophthalmology clinics. All participants will be informed fully on the purpose and methods of the study. Consent forms will be signed and at any time participants will have the right to withdraw. Confidentiality and the protection of data will be respected at all times.

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Evaluation of the Impact of an Individual Peer Support Intervention for Stroke Patients When Returning Home: a Mixed Methods Pilot Study

Case Medical Research ◽

10.31525/ct1-nct04197258 ◽

2019 ◽

Author(s):

Keyword(s):

Mixed Methods ◽

Pilot Study ◽

Peer Support ◽

Stroke Patients ◽

Support Intervention ◽

Returning Home ◽

The Impact ◽

Peer Support Intervention

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A randomized wait-list controlled trial of a social support intervention for caregivers of patients with primary malignant brain tumor

BMC Health Services Research ◽

10.1186/s12913-021-06372-w ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Maija Reblin ◽

Dana Ketcher ◽

Rachael McCormick ◽

Veronica Barrios-Monroy ◽

Steven K. Sutton ◽

...

Keyword(s):

Social Support ◽

Social Network ◽

Controlled Trial ◽

Well Being ◽

Wait List ◽

Web Based ◽

Caregiver Support ◽

Support Intervention ◽

Link Type ◽

Prospective Longitudinal

Abstract Background Informal family caregivers constitute an important and increasingly demanding role in the cancer healthcare system. This is especially true for caregivers of patients with primary malignant brain tumors based on the rapid progression of disease, including physical and cognitive debilitation. Informal social network resources such as friends and family can provide social support to caregivers, which lowers caregiver burden and improves overall quality of life. However, barriers to obtaining needed social support exist for caregivers. To address this need, our team developed and is assessing a multi-component caregiver support intervention that uses a blend of technology and personal contact to improve caregiver social support. Methods We are currently conducting a prospective, longitudinal 2-group randomized controlled trial which compares caregivers who receive the intervention to a wait-list control group. Only caregivers directly receive the intervention, but the patient-caregiver dyads are enrolled so we can assess outcomes in both. The 8-week intervention consists of two components: (1) The electronic Social Network Assessment Program, a web-based tool to visualize existing social support resources and provide a tailored list of additional resources; and (2) Caregiver Navigation, including weekly phone sessions with a Caregiver Navigator to address caregiver social support needs. Outcomes are assessed by questionnaires completed by the caregiver (baseline, 4-week, 8-week) and the cancer patient (baseline, and 8-week). At 8 weeks, caregivers in the wait-list condition may opt into the intervention. Our primary outcome is caregiver well-being; we also explore patient well-being and caregiver and patient health care utilization. Discussion This protocol describes a study testing a novel social support intervention that pairs a web-based social network visualization tool and resource list (eSNAP) with personalized caregiver navigation. This intervention is responsive to a family-centered model of care and calls for clinical and research priorities focused on informal caregiving research. Trial registration clinicaltrials.gov, Registration number: NCT04268979; Date of registration: February 10, 2020, retrospectively registered.

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Ringing the changes: the role of telephone communication in a helpline and befriending service targeting loneliness in older people

Ageing and Society ◽

10.1017/s0144686x18000120 ◽

2018 ◽

Vol 39 (7) ◽

pp. 1528-1551 ◽

Cited By ~ 2

Author(s):

CLAIRE PRESTON ◽

STEPHEN MOORE

Keyword(s):

Mixed Methods ◽

Older People ◽

Thematic Analysis ◽

Emotional Support ◽

Mixed Methods Study ◽

Structured Interviews ◽

Voice Communication ◽

Telephone Communication ◽

The United Kingdom

ABSTRACTThe drive to deliver services addressing loneliness in older people by telephone and online makes it increasingly relevant to consider how the mode of communication affects the way people interact with services and the capacity of services to meet their needs. This paper is based on the qualitative strand of a larger mixed-methods study of a national phoneline tackling loneliness in older people in the United Kingdom. The research comprised thematic analysis of four focus groups with staff and 42 semi-structured interviews with callers. It explored the associations between telephone-delivery, how individuals used the services and how the services were able to respond. To understand these associations, it was useful to identify some constituent characteristics of telephone communication in this context: namely its availability, reach and non-visual nature. This enabled various insights and comparison with other communication media. For example, the availability of the services attracted people seeking frequent emotional support but this presented challenges to staff. More positively, the ability of the services to connect disparate individuals enabled them to form different kinds of satisfying relationships. The evolution of mixed communication forms, such as internet-based voice communication and smartphone-based visual communication, makes analysis at the level of a technology's characteristics useful. Such a cross-cutting perspective can inform both the design of interventions and assessment of their suitability for different manifestations of loneliness.

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Correction: Combined Use of Web-Based and In-Person Education on Ill Health Self-management Skills in Adults With Bipolar Disorder: Protocol for a Mixed Methods Study

JMIR Research Protocols ◽

10.2196/33506 ◽

2021 ◽

Vol 10 (9) ◽

pp. e33506

Author(s):

Anna Hatzioannou ◽

Andreas Chatzittofis ◽

Virginia Sunday Koutroubas ◽

Evridiki Papastavrou ◽

Maria Karanikola

Keyword(s):

Bipolar Disorder ◽

Mixed Methods ◽

Mixed Methods Study ◽

Self Management ◽

Management Skills ◽

Web Based ◽

Combined Use

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Seeking the balance between caregiving in dementia, family and employment: study protocol for a mixed methods study in Northern Germany

BMJ Open ◽

10.1136/bmjopen-2017-019444 ◽

2018 ◽

Vol 8 (2) ◽

pp. e019444 ◽

Cited By ~ 3

Author(s):

Lydia Neubert ◽

Hans-Helmut König ◽

Christian Brettschneider

Keyword(s):

Mixed Methods ◽

Labour Force ◽

Informal Caregivers ◽

Personal Characteristics ◽

Labour Force Participation ◽

Informal Caregiving ◽

German Society ◽

Mixed Methods Study ◽

Northern Germany ◽

Study Results

IntroductionThe debate on reconciliation between childcare and working has to be expanded to caregiving for the elderly, since the importance of informal caregiving will increase in the future due to populations’ ageing and women’s increasing labour force participation. Informal caregivers who are caring for the rising number of persons with dementia (PwD) are often female and subjected to high caregiving requirements. These are added to further demands emerging from their family and work life. How affected caregivers seek to balance those requirements depends on, inter alia, their own characteristics and the informal caregiving network to whom they relate. Both aspects were not yet considered in previous studies. This mixed methods study thus aims to explore the reconciliation between caregiving in dementia, family and employment by including different members of caregiving networks of home-dwelling PwD and by considering their personal characteristics.Methods and analysisBy purposive sampling, we include at least five caregiving networks of home-dwelling PwD; each of them consisting of at least three informal caregivers living in Northern Germany. Narrative interviews of participants will be recorded, transcribed verbatim and interpreted according to the Documentary Method (QUAL). By completing standardised questionnaires, participants will provide sociodemographic and psychographic data concerning themselves and the networks from whom they arise (quan). This supplemental, descriptive information will give further background to the themes and types emerging from the interviews. Hence, the quan-data enrich the QUAL-data by exploring the narratives of participants in the light of their personal and network-related characteristics.Ethics and disseminationEthical approval was obtained from the Ethics Committee of the German Society of Nursing Sciences. Study results will be disseminated through conference presentations and publications in peer-reviewed journals.Trial registration numberDRKS00012929.

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