Framework for Patient and Informal Caregiver Participation in Research (PAICPAIR)

Staats, Katrine; Grov, Ellen Karine; Husebø, Bettina S.; Tranvåg, Oscar

doi:10.1097/ans.0000000000000289

Cited by 11 publications

(27 citation statements)

References 41 publications

(33 reference statements)

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“…We suggest an increased focus on this issue in future research. In line with recommendations from the WHO, we suggest that research upon these matters include the involvement of persons with dementia and their informal caregivers [ 2 , 43 ].…”

Section: Discussionmentioning

confidence: 65%

The compound role of a coordinator for home-dwelling persons with dementia and their informal caregivers: qualitative study

Fæø

Tranvåg

Samdal

et al. 2020

BMC Health Serv Res

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Background As the number of persons with dementia is increasing, there has been a call for establishing sustainable clinical pathways for coordinating care and support for this group. The LIVE@Home.Path trial is a multicomponent, multi-disciplinary intervention combining learning, innovation, volunteer support and empowerment. To implement the intervention, a municipal coordinator has a crucial role. Implementation research on multicomponent interventions is complex and we conducted a qualitative study, aiming to explore the coordinator role and how a coordinator may empower persons with dementia in decision-making processes. Methods Qualitative program evaluation combined with a hermeneutic interpretive approach was chosen as methodological approach. Sixteen dyads, consisting of the person with dementia and their main informal caregiver received the intervention by two coordinators. Of these, six dyads, three informal caregivers alone and the two care coordinators along with their leader, in sum, eighteen persons, participated in in-depth or focus group interviews, sharing their experiences after 6 months intervention. Results We found that the coordinators fulfilled three functions for the participating dyads: being a safety net, meaning that the dyads might have little needs at the moment, but found safety in a relation to someone who might help if the situation should change; being a pathfinder, meaning that they supported the dyads in finding their way through the complicated system of care and support services; being a source for emotional care and support, meaning that they listened, acknowledged and gave counsel in times of distress. The coordinators emphasized that a trusting leader and work environment was crucial for them to fulfill these functions. We also found that it was challenging for the coordinators to build a relation to the persons with dementia in order to pursue genuine empowerment in decision-making processes. Conclusion We found the framework for follow-up to be a feasible starting point for establishing empowering coordination and a sustainable care pathway for persons with dementia and their informal caregivers. More meeting points between coordinator and person with dementia should be pursued in order to fulfill the persons’ fundamental rights to participate in decision-making processes.

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Section: Discussionmentioning

confidence: 65%

The compound role of a coordinator for home-dwelling persons with dementia and their informal caregivers: qualitative study

Fæø

Tranvåg

Samdal

et al. 2020

BMC Health Serv Res

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“…We included PAICPAIR as part of our methodological approach (Staats et al, 2019) and found this to be vital in strengthening the internal validity of the study. As members of the study reference group, the woman living with incurable cancer at home and the former informal caregiver strongly contributed in all phases of the research process (apart from the data collection).…”

Section: Methodological Considerations and Study Limitationsmentioning

confidence: 99%

“…User involvement improves the relevance and utility of research and gives insight into the user's unique experiences of everyday life (Morrow, 2012). A framework for Patient and Informal Caregiver Participation in Research (PAICPAIR) suggests a stronger foundation for democracy, equality and research quality by promoting active participation among vulnerable people experiencing incurable, life-threatening illness, as co-researchers (Staats et al, 2019). This study implemented a thorough cooperation with the projects reference group, consisting of an older woman living with incurable cancer living at home, a former informal caregiver, who previously cared for a home-dwelling older woman with incurable cancer, a general practitioner and two oncology nurses employed in the municipal healthcare services.…”

Section: Patient and Informal Caregiver Participation In Researchmentioning

confidence: 99%

Dignity and loss of dignity: Experiences of older women living with incurable cancer at home

Staats

Grov

Husebø

et al. 2020

Health Care for Women International

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In this study, we explored and identified crucial experiences that constitute dignity and loss of dignity among older women living with incurable cancer at home. In-depth interviews with 13 women, and participant observations of five of these women, were performed. Hermeneutical interpretations of interview texts and field notes were conducted. Crucial experiences that preserved the women's dignity included having a sense of control, making one's own decisions, experiencing hope and meaningfulness, feeling valued as a human being and having the opportunity to be in a treasured and nurturing environment. Dignity loss was related to losing the opportunity for self-determination, sensing hopelessness and worthlessness in a shroud of illness, experiencing violation of their personal life and being situated in surroundings that enhanced their sense of disconnection and alienation. Quality of care was experienced as more important than the physical place in which to spend their final stage of life. The findings suggest that dignity preservation should be a core dimension in care for older women living with incurable cancer at home. Future research should investigate how dignity-preserving care can be organized and practiced within municipal palliative care services.

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“…While collecting data on the ICs' experiences, reflecting upon our pre-understanding and focusing on collecting detailed descriptions, afforded study transferability. 37 As part of the methodological approach, we used the framework PAIC-PAIR part 1 21 to strengthen study trustworthiness 38 regarding the credibility and internal validity of the study; 38 two ICs contributed in all phases of the research process, as members of the steering group and advisory board. Dependability 38 was sought through a transparent documentation of the research process.…”

Section: Methodological Considerationsmentioning

confidence: 99%

“…We acknowledge both patients and IC representatives as experts with unique competence, valuable in all phases of the research process. Inspired by the Framework of patient and IC participation in research (PAICPAIR part 1) 21 we established contact with patient organizations in the planning phase of this research process to create a sound collaboration with ICs as co-researchers. Two ICs were recruited as co-researchers.…”

Section: Methodsmentioning

confidence: 99%

Dignity of older home-dwelling women nearing end-of-life: Informal caregivers’ perception

Staats

Grov²,

Husebø

et al. 2020

Nurs Ethics

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Background: Most older people wish to live in the familiar surroundings of their own home until they die. Knowledge concerning dignity and dignity loss of home-dwelling older women living with incurable cancer should be a foundation for quality of care within municipal healthcare services. The informal caregivers of these women can help increase the understanding of sources related to dignity and dignity loss Aim: The aim of this study was to explore informal caregivers’ perceptions of sources related to dignity and dignity loss in end-of-life of older home-dwelling women with incurable cancer. Research design and method: The study was founded upon Gadamer’s philosophical hermeneutics. In-depth interviews with 13 informal caregivers were carried out, and four participant observations were performed during home meetings. Ethical consideration: The study was based on voluntary participation, informed consent, confidentiality and the opportunity to withdraw at any time. The Norwegian Social Science Data Services approved the study. Results: Three main sources important in preserving the older women’s dignity were identified: maintaining one’s self-concept, remaining hopeful and sustaining freedom of choice. We also identified three main sources that lead to dignity loss: Sensing loss of human value, experiencing absence of gentleness and feelings of being treated as an object. Discussion and final considerations: On the individual level, the opportunity to maintain one’s self-concept and control in life, preserved dignity, while feelings of existential loneliness led to dignity loss. On the relational level, being confirmed as worthy human beings promoted the women’s dignity, whereas dignity loss was related to uncaring behaviours from healthcare professionals. On the societal level, individual decisions concerning travel situations and the place to stay when nearing end-of-life were of crucial importance. Constituting these women’s living space, these perspectives should be emphasized in healthcare professionals’ educational training and in the municipal end-of-life care of these patients.

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Framework for Patient and Informal Caregiver Participation in Research (PAICPAIR)

Cited by 11 publications

References 41 publications

The compound role of a coordinator for home-dwelling persons with dementia and their informal caregivers: qualitative study

The compound role of a coordinator for home-dwelling persons with dementia and their informal caregivers: qualitative study

Dignity and loss of dignity: Experiences of older women living with incurable cancer at home

Dignity of older home-dwelling women nearing end-of-life: Informal caregivers’ perception

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