Positieve ervaringen door mantelzorg: constructie van een schaal

Boer, Alice H. de; Oudijk, Debbie; Groenou, M.I. Broese Van; Timmermans, Joost

doi:10.1007/s12439-012-0035-8

Cited by 23 publications

(20 citation statements)

References 19 publications

(24 reference statements)

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“…Caregiving has negative as well as positive impacts on daily life. Although some caregivers report enrichment of relationships ( De Boer et al, 2012 ), others experience heavy burden and social isolation ( Schulz and Martire, 2004 ). Therefore, psychosocial interventions for caregivers are essential to enhancing a supportive environment and preventing overburdening.…”

Section: Introductionmentioning

confidence: 99%

Process evaluation of a social support platform ‘Inlife’ for caregivers of people with dementia

Dam

Christie

Smeets

et al. 2019

Internet Interventions

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IntroductionInformal caregivers of persons with dementia have an increased risk of facing social isolation. Online social media interventions might offer a new opportunity to increase access to social support. An online social support platform, ‘Inlife’, was developed and launched in the Netherlands to enhance social support, positive interactions and information sharing in informal support networks.ObjectiveA process evaluation was performed to evaluate the internal and external validity of the Inlife intervention.MethodsImplementation, sampling and intervention quality were evaluated by both qualitative and quantitative methods. Analyses were performed using descriptive statistics and inductive content analysis. Analyses were conducted following participants' completion of the intervention after 16 weeks.ResultsThe overall participation rate in the study was 27% (96/351). The Inlife intervention was generally well-received by the primary caregivers. Inlife facilitated empowerment, openness, involvement, and efficient care organization. Still, adherence was not optimal for all Inlife users. Determinants for Inlife use were identified on the level of the Inlife innovation, the users, and the socio-political context.ConclusionsInlife was evaluated as a useful instrument for efficient central care coordination and mutual involvement. This study emphasizes that the personal attitudes of the Inlife users to seek and provide support warrant attention, next to the characteristics of the actual Inlife innovation for optimal intervention uptake. Online and offline support might be integrated to raise awareness of caregiver social support needs and attitudes and provide insight into caregivers' available social capital.Trial registrationDutch trial register NTR6131, Registered on 20 October 2016.

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Section: Introductionmentioning

confidence: 99%

Process evaluation of a social support platform ‘Inlife’ for caregivers of people with dementia

Dam

Christie

Smeets

et al. 2019

Internet Interventions

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“…The Positive Experiences Scale (PES) 44 for family caregivers of people with dementia will be used to measure positive experiences by family caregivers. The PES consists of hierarchically ordered items which vary from intrinsic satisfaction (‘Caring for my loved one makes me feel good’) and relational enhancement (‘During the period that I have been providing care, my loved one and I have grown closer (quality of our relationship is better now)’) to improvement of competence (‘As a result of providing care, I have learnt new things myself’) and social enhancement (‘As a result of providing care, I have met new people’).…”

Section: Methods and Analysismentioning

confidence: 99%

“…88 Informal care spent by family excluding time spent on the Namaste Care Family programme will be assessed and valued using the Dutch standard price. Societal costs will be related to the main effect measures of quality of life as measured by the QUALID, 40 41 quality-adjusted life years (QALY) and positive caregiving experiences measured by the PES 44 in the economic evaluation.…”

Section: Methods and Analysismentioning

confidence: 99%

Effects of the Namaste Care Family programme on quality of life of nursing home residents with advanced dementia and on family caregiving experiences: study protocol of a cluster-randomised controlled trial

Smaling

Joling²,

Ven

et al. 2018

BMJ Open

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IntroductionQuality of life of people with advanced dementia living in nursing homes is often suboptimal. Family caregivers can feel frustrated with limited contact with their relatives, which results in visits that are perceived as stressful and not very meaningful. Few psychosocial interventions are specifically developed for people with advanced dementia, and actively involve family caregivers or volunteers. Also, interventions usually stop when it becomes difficult for people to participate. The Namaste Care Family programme aims to increase the quality of life of people with advanced dementia, and improve family caregiving experiences through connecting to people and making them comfortable.Methods and analysisOur study will evaluate the effects of the Namaste Care Family programme on quality of life of people with advanced dementia living in nursing homes and family caregiving experiences using a cluster-randomised controlled trial. Longitudinal analyses will be performed taking into account clustering at the nursing home level. Both a cost-effectiveness and a cost-utility analysis from a societal perspective will be performed. We will modify the Namaste Care Family programme to increase family and volunteer involvement in ongoing and end-of-life care. Data collection involves assessments by family caregivers, nursing staff and elderly care physicians using questionnaires, and observations by the researchers at baseline and multiple times over 12 months. The last questionnaire will be sent up to month 24 after the death of the person with dementia. During semistructured interviews, the feasibility, accessibility and sustainability of the Namaste Care Family programme will be assessed.Ethics and disseminationThe study protocol is approved by the Medical Ethics Review Committee of the VU University Medical Center in Amsterdam (protocol no. 2016.399) and registered with the Nederlands Trial Register (NTR5692). The findings will be disseminated via publications in peer-reviewed journals, conference presentations and presentations for healthcare professionals where appropriate.Trial registration numberNTR5692.

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“…[10] The CSNAT is an evidencebased tool for the assessment of family caregivers' support needs in multiple domains and was developed for use in palliative care [10,19]. In addition, statements from earlier Q-methodological studies of the attitudes and beliefs of dementia caregivers [22] and respite care [17] were examined, as well as other studies of caregivers' support needs [2,15], self-perceived burden [36] and positive experiences with caregiving [37]. This resulted in a list of 118 statements.…”

Section: Formulating the Statements (Q-sample)mentioning

confidence: 99%

“…Things go wrong when there are several people involved.". Also, they would like to receive more appreciation and recognition for their role and know-how as a caregiver [37]"Definitely! We are undervalued.…”

Section: Profile 1: Wants Appreciation and A Contact Personmentioning

confidence: 99%

Profiles of family caregivers of patients at the end of life at home: a Q-methodological study into family caregiver’ support needs

et al. 2020

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Background: Family caregivers of patients at the end of life often experience care-related burden. To prevent caregiver burden and to enhance the capacity to provide care it is important to have insight in their support needs. The purpose of this study was to identify profiles of family caregivers who provide care to patients at the end of life at home. Methods: A Q-methodological study was conducted in which family caregivers ranked 40 statements on support needs and experiences with caregiving. Thereafter they explained their ranking in an interview. By-person factor analysis was used to analyse the rankings and qualitative data was used to support the choice of profiles. A set of 41 family caregivers with a variety on background characteristics who currently or recently provided care for someone at the end of life at home were included. Results: Four distinct profiles were identified; profile (1) those who want appreciation and an assigned contact person; profile (2) was bipolar. The positive pole (2+) comprised those who have supportive relationships and the negative pole (2-) those who wish for supportive relationships; profile (3) those who want information and practical support, and profile (4) those who need time off. The profiles reflect different support needs and experiences with caregiving. Conclusions: Family caregivers of patients at the end of life have varying support needs and one size does not fit all. The profiles are relevant for healthcare professionals and volunteers in palliative care as they provide an overview of the main support needs among family caregivers of patients near the end of life. This knowledge could help healthcare professionals giving support.

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Positieve ervaringen door mantelzorg: constructie van een schaal

Cited by 23 publications

References 19 publications

Process evaluation of a social support platform ‘Inlife’ for caregivers of people with dementia

Process evaluation of a social support platform ‘Inlife’ for caregivers of people with dementia

Effects of the Namaste Care Family programme on quality of life of nursing home residents with advanced dementia and on family caregiving experiences: study protocol of a cluster-randomised controlled trial

Profiles of family caregivers of patients at the end of life at home: a Q-methodological study into family caregiver’ support needs

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