Tailoring and evaluating the web-based ‘Partner in Balance’ intervention for family caregivers of persons with young-onset dementia

Bruinsma, Jeroen; Peetoom, Kirsten; Bakker, Christian; Boots, Lizzy; Millenaar, Joany; Verhey, Frans R.J.; Vugt, Marjolein de

doi:10.1016/j.invent.2021.100390

Cited by 25 publications

(19 citation statements)

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“…Interventions were commonly based on cognitive behavioral therapy (n=10) [ 98 - 100 , 102 , 104 , 107 , 115 , 124 , 125 , 134 , 135 , 137 , 141 - 144 ], stress and coping theory (n=9) [ 65 , 95 - 97 , 101 , 103 , 109 , 110 , 113 , 114 , 121 - 123 , 126 - 133 ], mindfulness (n=7) [ 106 , 108 , 111 , 116 - 120 ], or acceptance and commitment therapy (ACT; n=3) [ 105 , 112 , 136 , 138 - 140 , 146 ]. Most interventions included support (n=22), providing standardized (n=9) [ 99 , 105 - 108 , 111 , 116 - 118 , 124 , 125 , 138 - 140 , 142 , 144 ], guided (n=7) [ 96 , 97 , 101 , 102 , 113 , 114 , 119 , 126 - 132 , 134 ], or minimal (n=5) [ 98 , 100 , 105 , …”

Section: Resultsmentioning

confidence: 99%

“…The internet-based nature of interventions was generally well-accepted and offered some advantages over face-to-face interventions [ 114 , 117 , 120 , 126 , 127 , 130 , 136 , 139 , 142 ], including (1) no need to travel [ 114 , 126 ] and (2) material being available all the time [ 127 ]. Interventions using different forms of media to deliver content [ 120 , 127 , 138 , 144 ] and supporting the use of interventions across devices (eg, ability to use intervention on a smartphone and computer) [ 132 , 144 ] made it easier for caregivers to use interventions. Tailored intervention content (eg, tailored to the care recipient’s stage of disease) [ 126 , 131 , 138 , 140 , 143 , 144 ], the provision of professional support [ 114 , 119 , 126 , 127 , 131 - 133 , 135 , 136 , 138 - 141 , 143 , 144 ], a positive tone for information that was presented [ 125 , 127 , 138 , 140 ], and contact with information from other caregivers [ 114 , 120 , 126 , 127 , 131 , 132 , 136 , 138 - 140 , 143 , 144 ] were important features to ensure interventions were relevant and met the needs of caregivers.…”

Section: Resultsmentioning

confidence: 99%

“…Interestingly, although caregivers expressed a preference for flexible use options, such as accessing modules on demand based on their needs [ 108 , 113 , 120 , 125 - 127 , 131 , 132 , 134 , 136 , 138 - 140 ], stakeholders suggested a need to control module access to guide caregivers through the intervention and avoid confusion [ 127 ]. Stakeholders also valued interventions with features that supported user tracking to facilitate monitoring and evaluation of the implementation of the intervention [ 128 ] (also see inner setting: goals and feedback in Multimedia Appendix 5 ).…”

Section: Resultsmentioning

confidence: 99%

“…Interventions with content not appropriately tailored to the intervention user [ 95 , 114 , 124 , 126 , 127 , 131 , 132 , 135 , 136 , 140 , 142 , 144 ] or that did not capture the diversity of caregivers’ backgrounds and care situations [ 114 , 124 ] made it challenging for caregivers to identify with the content. There was also a need for interventions to be linguistically and culturally tailored to meet the needs of different user groups within an implementation setting [ 143 , 144 ].…”

Section: Resultsmentioning

confidence: 99%

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Implementation of e–Mental Health Interventions for Informal Caregivers of Adults With Chronic Diseases: Mixed Methods Systematic Review With a Qualitative Comparative Analysis and Thematic Synthesis

et al. 2022

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Background Informal caregivers commonly experience mental health difficulties related to their caregiving role. e–Mental health interventions provide mental health support in a format that may be more accessible to informal caregivers. However, e–mental health interventions are seldom implemented in real-world practice. Objective This mixed methods systematic review aimed to examine factors associated with the effectiveness and implementation of e–mental health interventions for informal caregivers of adults with chronic diseases. To achieve this aim, two approaches were adopted: combinations of implementation and intervention characteristics sufficient for intervention effectiveness were explored using qualitative comparative analysis, and barriers to and facilitators of implementation of e–mental health interventions for informal caregivers were explored using thematic synthesis. Methods We identified relevant studies published from January 1, 2007, to July 6, 2022, by systematically searching 6 electronic databases and various secondary search strategies. Included studies reported on the effectiveness or implementation of e–mental health interventions for informal caregivers of adults with cancer, chronic obstructive pulmonary disease, dementia, diabetes, heart disease, or stroke. Randomized controlled trials reporting on caregivers’ mental health outcomes were included in a crisp-set qualitative comparative analysis. We assessed randomized controlled trials for bias using the Risk of Bias 2.0 tool, and we assessed how pragmatic or explanatory their trial design was using the Pragmatic Explanatory Continuum Indicator Summary 2 tool. Studies of any design reporting on implementation were included in a thematic synthesis using the Consolidated Framework for Implementation Research to identify barriers to and facilitators of implementation. Results Overall, 53 reports, representing 29 interventions, were included in the review. Most interventions (27/29, 93%) focused on informal cancer or dementia caregivers. In total, 14 reports were included in the qualitative comparative analysis, exploring conditions including the presence of peer or professional support and key persuasive design features. Low consistency and coverage prevented the determination of condition sets sufficient for intervention effectiveness. Overall, 44 reports were included in the thematic synthesis, and 152 barriers and facilitators were identified, with the majority related to the intervention and individual characteristic domains of the Consolidated Framework for Implementation Research. Implementation barriers and facilitators in the inner setting (eg, organizational culture) and outer setting (eg, external policies and resources) domains were largely unexplored. Conclusions e–Mental health interventions for informal caregivers tend to be well-designed, with several barriers to and facilitators of implementation identified related to the intervention and individual user characteristics. Future work should focus on exploring the views of stakeholders involved in implementation to determine barriers to and facilitators of implementing e–mental health interventions for informal caregivers, focusing on inner and outer setting barriers and facilitators. Trial Registration PROSPERO (International Prospective Register of Systematic Reviews) CRD42020155727; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42020155727 International Registered Report Identifier (IRRID) RR2-10.1136/bmjopen-2019-035406

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 2 more Smart Citations

Implementation of e–Mental Health Interventions for Informal Caregivers of Adults With Chronic Diseases: Mixed Methods Systematic Review With a Qualitative Comparative Analysis and Thematic Synthesis

et al. 2022

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“…The RHAPSODY program could serve as a stepping stone for caregivers to participate in other support options. For example, in the Netherlands, tailored support is available that blends a web-based approach with personal coaching, namely the Partner in Balance intervention ( Bruinsma et al, 2021a ; Bruinsma et al, 2021b ). Lastly, although the current study showed good user acceptability, usability, and user satisfaction of the Dutch RHAPSODY program, a direction for future research would be to explore the long-term effects on caregiver well-being and coping skills.…”

Section: Discussionmentioning

confidence: 99%

A cross-sectional evaluation of the Dutch RHAPSODY program: online information and support for caregivers of persons with young-onset dementia

Daemen

Bruinsma

Bakker

et al. 2022

Internet Interventions

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Tailoring the web-based ‘Partner in Balance’ intervention to support spouses of persons with frontotemporal dementia

Bruinsma

Peetoom

Boots

et al. 2021

Internet Interventions

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Frontotemporal dementia (FTD) typically starts before the age of 65 years, and symptoms differ from other dementias (e.g. Alzheimer's dementia). Spouses are often caregiver and experience difficulty coping with the profound changes in personality and behavior accompanying FTD. Most interventions available to these spouses do not match their need for tailored and flexible psychosocial support. Therefore, tailored content for spouses of persons with FTD was recently incorporated in the proven effective and web-based Partner in Balance intervention. Methods This feasibility study prospectively evaluated the tailored Partner in Balance content for spouses of persons with FTD. Spouses followed the 8-week intervention, and qualitative and quantitative measures were used to evaluate expectations and barriers prior to participation and aspects of usability, feasibility, and acceptability of content. Additionally, effects were explored regarding caregiver self-efficacy, sense of mastery, stress, depression and anxiety. Results Twenty-seven spouses caring for a spouse with FTD at home started the intervention. Eventually, 20 completed the intervention (74.1%). Partner in Balance matched the expectations of participating spouses and helped them to find a better balance between caregiving and personal life, acquire more peace of mind, and facilitated coping with behavioral and communication difficulties. Before participation, time restraints were identified as a potential barrier, but afterwards spouses positively evaluated the flexibility of the web-based approach that allowed them to participate at a convenient time and place. They valued the recognizability of the videos and narrative stories on FTD. Post-intervention, spouses qualitatively felt more confident, more at ease, and strengthened as a caregiver. Quantitatively, levels of self-efficacy, anxiety and depression significantly improved. Conclusions Partner in Balance is a usable, feasible, and acceptable intervention for spouses caring for a spouse with FTD at home. Healthcare organizations could consider adopting Partner in Balance in their daily practice to offer flexible and tailored support to spouses.

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Tailoring and evaluating the web-based ‘Partner in Balance’ intervention for family caregivers of persons with young-onset dementia

Cited by 25 publications

References 50 publications

Implementation of e–Mental Health Interventions for Informal Caregivers of Adults With Chronic Diseases: Mixed Methods Systematic Review With a Qualitative Comparative Analysis and Thematic Synthesis

Implementation of e–Mental Health Interventions for Informal Caregivers of Adults With Chronic Diseases: Mixed Methods Systematic Review With a Qualitative Comparative Analysis and Thematic Synthesis

A cross-sectional evaluation of the Dutch RHAPSODY program: online information and support for caregivers of persons with young-onset dementia

Tailoring the web-based ‘Partner in Balance’ intervention to support spouses of persons with frontotemporal dementia

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