Interprofessional collaboration in palliative dementia care through the eyes of informal caregivers
Open accessAbstract
A qualitative study was conducted to examine the experiences of informal caregivers of persons with dementia pertaining interprofessional collaboration with and among healthcare professionals in home care (HC), nursing homes and during home to nursing home transitions in palliative care. Semi-structured interviews were performed with bereaved informal caregivers. Data were analysed using a critical realist approach. The two main themes that emerged were: ( 1) Informal caregivers’ roles in interprofessional collaboration with healthcare professionals and ( 2) Informal caregivers’ perception of interprofessional collaboration among healthcare professionals . Informal caregivers’ roles were identified in three collaboration processes: information exchange, care process and shared decision-making. Interprofessional collaboration among healthcare professionals was more perceptible on the collaboration outcome level (e.g. being up to date with the health status of the person with dementia; acting proactive, being adequate and consistent in the care process; and giving a warm welcome) than on the collaboration processes level (e.g. communicating and being involved in team processes). Our study revealed that intrinsic and extrinsic factors and interprofessional collaboration among healthcare professionals affected informal caregivers’ collaborative roles. In summary, our study showed that informal caregivers have important roles as team members in the continuity and quality of palliative care for persons with dementia.
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Written from the paper’s full text.
TL;DR
This qualitative study interviewed 32 bereaved informal caregivers of persons with dementia in Dutch home care, nursing homes, and nursing home transitions to examine their experiences of interprofessional collaboration with and among healthcare professionals. Informal caregivers acted as key team members in information exchange, care processes, and shared decision-making, with their roles shaped by intrinsic/extrinsic factors and by how well healthcare professionals collaborated among themselves.
Key findings
- Informal caregivers’ collaborative roles occurred in three processes: information exchange (receiving, sending, filling the gap), care process (caregiving, monitoring, coordinating), and shared decision-making (everyday decisions, goals of care/medical decisions, nursing home transitions).
- Among 32 participants (mean age 62.0 years, SD = 9.3; 68.8% female; 71.9% children of the deceased), about half reported lacking adequate or timely information, about half repeated or relayed information between professionals, and 9 in nursing homes noticed care needs/preferences were not taken into account.
- In nursing homes, three quarters of informal caregivers showed additional monitoring roles; 7 informal caregivers filled the information gap, and 11 transitions occurred from care/sheltered homes to nursing homes, 10 from home to nursing homes, and 3 from somatic to psychogeriatric nursing home wards.
- Interprofessional collaboration among healthcare professionals was more visible to informal caregivers at the outcome level (being up to date, acting proactive/adequate/consistent, giving a warm welcome) than at the process level; one third in nursing homes and half during nursing home transitions experienced professionals not being up to date, and one third noticed inconsistent execution of care tasks.
Methods
- Qualitative study within the DEDICATED project in three Dutch care organizations; semi-structured in-depth interviews with bereaved informal caregivers of deceased persons with dementia, recruited by nurses using purposive sampling. Eligibility required the person with dementia to be ≥65 years, receive care from one of the three organizations, and have died 6 weeks–6 months before inclusion.
- 32 informal caregivers participated (response rate = 71.1%); interviews were conducted February–July 2018, mean interview time 92.0 min (SD = 17.6).
- Data were analysed with a critical realist approach underpinned by a transformative paradigm, guided by two collaboration levels (with and among healthcare professionals), using iterative inductive, deductive, abduction, and retroduction methods; NVIVO v11 and SPSS v25 were used, and COREQ reporting was followed.
Limitations
- The paper states that only one informal caregiver per person with dementia was interviewed, that healthcare professionals’ perspectives were not examined for comparison, that selection bias may have occurred because nurse recruiters could have selected familiar or frequently seen candidates, and that Dutch cultural and healthcare aspects may limit generalizability.
- Evident from the design: the study relies on retrospective accounts from bereaved informal caregivers, which may be subject to recall limitations, though the paper does not label this as a limitation.
Model-written summary. Check it against the paper before relying on it.
Integrity signals
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Cites
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Claims the paper makes
0 of 41 cited sources checked · 0 supported · 0 flagged
- Findingown data
The personal information provided included life history, likes and dislikes in daily life, daily habits, hobbies, care needs and capabilities in daily care, preferences concerning social and religious activities and end-of-life wishes.
“This information included their life history, likes and dislikes in daily life, daily habits, hobbies, care needs and capabilities in daily care, preferences concerning social and religious activities and end-of-life wishes.”
Quote in the paperSubstantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
- Findingown data
Taking into account personal information provided by informal caregivers satisfied persons with dementia, because they were not able to express these themselves.
“Informal caregivers explained that taking into account personal information provided by them satisfied persons with dementia, because they were not able to express these themselves.”
Quote in the paperSubstantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
- Findingown data
Informal caregivers indicated the importance to receive information about the general care process or care experience of the person with dementia.
“Informal caregivers indicated the importance to receive information about the general care process or care experience of the person with dementia.”
Quote in the paperSubstantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
- Findingown data
Personal information was often transferred through verbal communication.
“Personal information was often transferred through verbal communication”
Quote in the paperNot a substantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
- Findingown data
Informal caregivers' roles were identified in three collaboration processes: information exchange, care process and shared decision-making.
“Informal caregivers’ roles were identified in three collaboration processes: information exchange, care process and shared decision-making.”
Quote in the paperSubstantial claim
- Findingown data
Informal caregivers in nursing homes preferred general information about the nursing home life.
“Next, informal caregivers in nursing homes preferred general information about the nursing home life.”
Quote in the paperNot a substantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
- Findingown data
Interprofessional collaboration among healthcare professionals was more perceptible on the collaboration outcome level than on the collaboration processes level.
“Interprofessional collaboration among healthcare professionals was more perceptible on the collaboration outcome level (e.g. being up to date with the health status of the person with dementia; acting proactive, being adequate and consistent in the care process; and giving a warm welcome) than on the collaboration processes level (e.g. communicating and being involved in team processes).”
Quote in the paperSubstantial claim - Findingown data
All informal caregivers needed information from healthcare professionals about dementia, palliative care, end-of-life care and the progression of the disease.
“All informal caregivers needed information from healthcare professionals about dementia, palliative care, end-of-life care and the progression of the disease”
Quote in the paperSubstantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
- Findingown data
All informal caregivers requested regular updates about the current health status, medication list, care process and overall wellbeing of the person with dementia to understand the current situation and anticipate on the future.
“and requested regular updates about the current health status, medication list, care process and overall wellbeing of the person with dementia to understand the current situation and anticipate on the future.”
Quote in the paperNot a substantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
- Findingown data
Informal caregivers from home care also required practical information to execute care arrangements.
“Besides, informal caregivers from HC also required practical information to execute care arrangements.”
Quote in the paperNot a substantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
- Findingown data
About half of the informal caregivers expressed a lack of receiving adequate or timely information.
“However, about half of the informal caregivers expressed a lack of receiving adequate or timely information.”
Quote in the paperNot a substantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
- Findingown data
All informal caregivers provided personal information about the person with dementia to healthcare professionals.
“All informal caregivers provided personal information about the person with dementia to healthcare professionals.”
Quote in the paperNot a substantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
- Findingown data
Intrinsic and extrinsic factors and interprofessional collaboration among healthcare professionals affected informal caregivers' collaborative roles.
“Our study revealed that intrinsic and extrinsic factors and interprofessional collaboration among healthcare professionals affected informal caregivers’ collaborative roles.”
Quote in the paperSubstantial claim - Findingown data
Some informal caregivers afterwards felt supported by healthcare professionals as they had the opportunity to carry out conversations about institutionalization during family meetings or visits.
“Even though most informal caregivers made the transition decision, some informal caregivers afterwards felt supported by healthcare professionals as they had the opportunity to carry out conversations about institutionalization during family meetings or visits.”
Quote in the paperNot a substantial claim - Findingown data
Informal caregivers signalled changes themselves when healthcare professionals did not identify those changes.
“On top of that, informal caregivers signalled changes themselves when healthcare professionals did not identify those changes.”
Quote in the paperSubstantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
- Findingown data
In nursing homes, most informal caregivers did not feel part of the team, because they had to chase the first contact persons and other healthcare professionals to exchange information.
“In nursing homes, most informal caregivers did not feel part of the team, because they had to chase the first contact persons and other healthcare professionals to exchange information.”
Quote in the paperSubstantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
- Findingown data
Healthcare professionals initiated discussions to ask informal caregivers what they wanted and what the person with dementia would have preferred.
“Healthcare professionals initiated discussions to ask informal caregivers what they wanted and what the person with dementia would have preferred.”
Quote in the paperSubstantial claim - Findingown data
In home care, informal caregivers' roles focused more on personal caregiving, coordinating care at home and anticipating possible nursing home transitions for the person with dementia.
“In HC, informal caregivers’ roles focussed more on personal caregiving, coordinating care at home and anticipating on possible nursing home transitions for the person with dementia.”
Quote in the paperSubstantial claim - Findingown data
Informal caregivers emphasized relief of suffering and prevention of burdensome treatments when setting goals of care and making medical decisions for the person with dementia.
“They also emphasized on relief of suffering and prevention of burdensome treatments when setting goals of care and making medical decisions for the person with dementia.”
Quote in the paperSubstantial claim - Findingown data
About one-third of the informal caregivers had a more active role because they were healthcare professionals themselves, worked in the healthcare sector, or had informal caregivers who were healthcare professionals.
“About one-third of the informal caregivers had a more active role because they were healthcare professionals themselves, worked in the healthcare sector or/and had informal caregivers who were healthcare professionals.”
Quote in the paperNot a substantial claim - Findingown data
Informal caregivers in home care performed general care tasks such as basic care tasks and household tasks.
“Informal caregivers in HC performed general care tasks such as basic care tasks (i.e. meal preparation, feeding, toilet guidance and skin care) and household tasks.”
Quote in the paperNot a substantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
- Findingown data
Interprofessional collaboration among healthcare professionals could affect informal caregivers by urging them to take additional collaborative roles.
“Moreover, we revealed that interprofessional collaboration among healthcare professionals could affect informal caregivers by urging them to take additional collaborative roles.”
Quote in the paperSubstantial claim - Findingown data
Nine informal caregivers in nursing homes noticed that the care needs and preferences of persons with dementia were not taken into account.
“Nine informal caregivers in nursing homes noticed that the care needs and preferences of persons with dementia were not taken into account.”
Quote in the paperSubstantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
- Findingown data
Seven informal caregivers described that they filled the information gap.
“Furthermore, seven informal caregivers described that they filled the information gap.”
Quote in the paperNot a substantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
- Findingown data
Informal caregivers, mostly in nursing homes, pointed out that healthcare professionals did not always align with them when making everyday decisions.
“Informal caregivers (mostly in nursing homes) pointed out that healthcare professionals did not always align with them when making everyday decisions.”
Quote in the paperSubstantial claim - Findingown data
Medical decisions about administration of opioids, hospital admissions, medication, food and fluid administration, palliative sedation and resuscitations were made together.
“Medical decisions about administration of opioids, hospital admissions, medication, food and fluid administration, palliative sedation and resuscitations were made together.”
Quote in the paperSubstantial claim - Findingown data
After the death of the person with dementia, informal caregivers in home care and nursing homes coordinated the funeral, such as contacting the mortician and arranging finances.
“After the death of the person with dementia, informal caregivers (in HC and nursing homes) coordinated the funeral such as contacting the mortician and arranging finances.”
Quote in the paperNot a substantial claim - Findingown data
Communication channels used in home care and nursing homes to exchange information were phone calls, e-mails, and one-on-one conversations.
“Communication channels used in HC and nursing homes to exchange information were phone calls, e-mails (usually to inform, update or check) and one-on-one conversations (mostly with first contact person or physician to inform, discuss or decide).”
Quote in the paperNot a substantial claim - Findingown data
Three informal caregivers applied the Care and Compulsion act to execute an involuntary nursing home transition.
“and three informal caregivers applied the Care and Compulsion act to execute an involuntary nursing home transition.”
Quote in the paperNot a substantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
- Findingown data
The type and extent of informal caregivers' collaborative roles depended first on informal caregivers themselves (willing to be involved, being assertive, and having knowledge of or previous experience in the care process).
“The type of and extent of informal caregivers’ collaborative roles, in the first place, depended on informal caregivers themselves (i.e. willing to be involved, being assertive and having knowledge of or a previous experience in the care process).”
Quote in the paperSubstantial claim - Findingown data
Informal caregivers from this study did not express the need to clarify roles with healthcare professionals.
“Even though informal caregivers from our study did not express the need to clarify roles with healthcare professionals”
Quote in the paperNot a substantial claim - Findingown data
In home care, healthcare professionals themselves transferred information through the patient file, which they left at the residence of the person with dementia.
“Moreover, in HC, healthcare professionals themselves transferred information through the patient file, which they left at the residence of the person with dementia.”
Quote in the paperNot a substantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
- Findingown data
Three quarters of the informal caregivers in nursing homes showed additional monitoring roles such as noticing when care tasks were not executed and responding to it by communicating their dissatisfaction and/or reactive caregiving.
“Three quarters of the informal caregivers in nursing homes showed additional monitoring roles such as noticing when care tasks were not executed and responding to it by communicating their dissatisfaction and/or reactive caregiving.”
Quote in the paperSubstantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
- Findingown data
The majority of informal caregivers in home care and nursing homes focused on comfort, enjoyment and satisfaction in life when communicating personal preferences of the person with dementia.
“The majority of informal caregivers (in HC and nursing homes) focussed on comfort, enjoyment and satisfaction in life when communicating personal preferences of the person with dementia.”
Quote in the paperSubstantial claim - Findingown data
Informal caregivers' collaborative roles could shift depending on which setting the person with dementia resides.
“We have shown that their collaborative roles could shift depending on which setting the person with dementia resides.”
Quote in the paperSubstantial claim - Findingown data
When healthcare professionals did not act quickly upon changes, informal caregivers themselves took control.
“Moreover, when healthcare professionals did not act quickly upon changes, informal caregivers themselves took control.”
Quote in the paperSubstantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
- Findingown data
The majority of informal caregivers emphasized the importance of having a first contact person, as they find it important to know who to approach to exchange information, coordinate care, and seek support.
“The majority emphasized the importance of having a first contact person, as informal caregivers find it important to know who to approach to exchange information, coordinate care and seek support.”
Quote in the paperSubstantial claim - Findingown data
Two informal caregivers coordinated the information transfer between home care and nursing home.
“Moreover, two informal caregivers coordinated the information transfer between HC and nursing home”
Quote in the paperNot a substantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
- Findingown data
About half of the informal caregivers repeated information to, actively relayed information between or functioned as an information intermediary among healthcare professionals.
“About half of the informal caregivers repeated information to, actively relayed information between or functioned as an information intermediary among healthcare professionals.”
Quote in the paperSubstantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
- Findingnone given
When other informal caregivers were involved, informal caregivers felt supported.
“Second, when other informal caregivers were involved they felt supported.”
Quote in the paperNot a substantial claim - Findingown data
Some informal caregivers preferred a nursing home in which residents were in a similar stage of dementia as the person with dementia.
“Some informal caregivers mentioned that they preferred a nursing home in which residents were in the similar stage of dementia as the person with dementia.”
Quote in the paperNot a substantial claim - Findingown data
Most informal caregivers were asked to provide personal information, especially during the intake conversation at the nursing home admission.
“Most informal caregivers were asked to provide personal information, especially during the intake conversation at the nursing home admission.”
Quote in the paperNot a substantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
- Interpretationown data
Informal caregivers have important roles as team members in the continuity and quality of palliative care for persons with dementia.
“In summary, our study showed that informal caregivers have important roles as team members in the continuity and quality of palliative care for persons with dementia.”
Quote in the paperSubstantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
- Premisecitation
Home to nursing home transitions are often due to overburdened informal caregivers.
“These home to nursing home transitions are often due to overburdened informal caregivers”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Houttekier et al., 2010
Not checked in the free run.
- Premisecitation
Interprofessional collaboration results in positive outcomes for the person with dementia and family members, healthcare professionals, and the entire care process.
“Interprofessional collaboration results in positive outcomes for the person with dementia and family members (e.g. person-centred care, participation, empowerment and satisfaction), healthcare professionals (e.g. job satisfaction, performance and mental health) and the entire care process (e.g. effectiveness, efficiency, safety, quality and continuity of care)”
Quote in the paperSubstantial claim0 of 3 sources checked- cites D'Amour, Ferrada-Videla, San Martin Rodriguez, & Beaulieu, 2005
Not checked in the free run.
- cites Körner et al., 2016
Not checked in the free run.
- cites Stutsky & Laschinger, 2014
Not checked in the free run.
- Premisecitation
As dementia progresses, persons with dementia's ability to communicate their needs and wishes and make decisions independently declines.
“While persons with dementia retain their position in the centre of interprofessional collaboration, their ability to communicate their needs and wishes and make decisions independently decline as dementia progresses”
Quote in the paperSubstantial claim0 of 1 sources checked- cites Henriksen, Moholt, & Blix, 2020
Not checked in the free run.
- Premisecitation
To the authors' knowledge, merely one study addressed the experiences of informal caregivers concerning both interprofessional collaboration together with and among healthcare professionals.
“However, to our knowledge, merely one study addressed the experiences of informal caregivers concerning both interprofessional collaboration together with and among healthcare professionals”
Quote in the paperSubstantial claim0 of 1 sources checked- cites Stephan, Möhler, Renom-Guiteras, & Meyer, 2015
Not checked in the free run.
- Premisecitation
Within interprofessional collaboration, the person with dementia and informal caregivers are identified as crucial collaborative partners.
“Within interprofessional collaboration, the person with dementia and informal caregivers (referring to families, close acquaintances or friends) are identified as crucial collaborative partners”
Quote in the paperSubstantial claim0 of 3 sources checked- cites Careau et al., 2015
Not checked in the free run.
- cites D'Amour et al., 2005
Not checked in the free run.
- cites McDonald & McCallin, 2010
Not checked in the free run.
- Premisecitation
One of the main components for optimal palliative dementia care comprises interprofessional collaboration.
“One of the main components for optimal palliative dementia care comprises interprofessional collaboration”
Quote in the paperSubstantial claim0 of 3 sources checked- cites Davies et al., 2014
Not checked in the free run.
- cites Fox et al., 2018
Not checked in the free run.
- cites Steen et al., 2014
Not checked in the free run.
- Interpretationreasoning
Informal caregivers are key team members in palliative dementia care.
“Our findings imply that informal caregivers in fact are key team members in palliative dementia care.”
Quote in the paperSubstantial claim - Interpretationown data
Informal caregivers' contribution to managing medication, financial tasks and appointments of the person with dementia were important due to the cognitive decline.
“Especially, their contribution to managing medication, financial tasks and appointments of the person with dementia were important due to the cognitive decline.”
Quote in the paperNot a substantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
- Study design and conductown data
The study included informal caregivers with experience of interprofessional collaboration in home care, nursing homes and during nursing home transitions.
“strengths include the inclusion of informal caregivers with experience of interprofessional collaboration in HC, nursing homes and during nursing home transitions.”
Quote in the paperSubstantial claim - Premisecitation
Healthcare professionals and informal caregivers complement each other.
“Indeed, role negotiation is conducive since healthcare professionals and informal caregivers complement each other (Häikiö et al., 2020).”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Häikiö et al., 2020
Not checked in the free run.
- Interpretationcitation
Informal caregivers perform additional collaborative roles in response to the lack of responsibility of healthcare professionals or adequacy of interprofessional collaboration among healthcare professionals.
“which they perform in response to the lack of responsibility of healthcare professionals or adequacy interprofessional collaboration among healthcare professionals (Jarrett, 2009; Astrid Stephan et al., 2015).”
Quote in the paperSubstantial claim0 of 2 sources checked- cites Jarrett, 2009
Not checked in the free run.
- cites Astrid Stephan et al., 2015
Not checked in the free run.
- Classified as probably not a substantial claim. 40
- May combine two claims. 32
Probably not a substantial claim: may not pass S3 (load-bearing).
Findingown dataInformal caregivers had a mean age of 62.0 years (SD = 9.3).
“had a mean age of 62.0 years (SD = 9.3)”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
Findingown data75% of persons with dementia died in a nursing home.
“died in a nursing home (75%)”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataThe analysis yielded two main themes: informal caregivers' roles in interprofessional collaboration with healthcare professionals, and informal caregivers' perception of interprofessional collaboration among healthcare professionals.
“The two main themes that emerged were: (1) Informal caregivers’ roles in interprofessional collaboration with healthcare professionals and (2) Informal caregivers’ perception of interprofessional collaboration among healthcare professionals.”
Quote in the paperSubstantial claimMay combine two claims.
Findingown dataIn response to lack of information, informal caregivers either proactively asked healthcare professionals for information, searched for information on the internet or approached their informal network to gain information.
“In response, informal caregivers either proactively asked healthcare professionals for information, searched for information on the internet or approached their informal network to gain information.”
Quote in the paperNot a substantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
Probably not a substantial claim: may not pass S3 (load-bearing).
Findingown dataPersons with dementia had a mean age of 86.6 years (SD = 6.3).
“had a mean age of 86.6 years (SD = 6.3)”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
Findingown dataMost persons with dementia were female.
“Most persons with dementia were female”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataThree different types of processes in which informal caregivers had collaborative roles in interprofessional collaboration with healthcare professionals and two types of factors influencing these roles were identified.
“We identified three different types of processes in which informal caregivers had collaborative roles in interprofessional collaboration with healthcare professionals and two types of factors influencing these roles”
Quote in the paperSubstantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
Probably not a substantial claim: may not pass S3 (load-bearing).
Findingown dataTwo informal caregivers were asked to document personal information in a life story book together with healthcare professionals.
“however, two informal caregivers were also asked to document this information in a life story book together with healthcare professionals.”
Quote in the paperNot a substantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
Probably not a substantial claim: may not pass S3 (load-bearing).
Findingnone givenThe findings were divided into two main themes related to the study objectives.
“The findings were divided into two main themes related to the study objectives”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
Findingown dataIn total, 32 informal caregivers participated (response rate = 71.1%).
“In total, 32 informal caregivers participated (response rate = 71.1%).”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataIn dementia care, informal caregivers required information from healthcare professionals, as persons with dementia often displayed recall issues or were not able to communicate what they experienced.
“In dementia care, informal caregivers required information from healthcare professionals, as persons with dementia often displayed recall issues or were not able to communicate what they experienced.”
Quote in the paperSubstantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
Probably not a substantial claim: may not pass S3 (load-bearing).
Findingown dataThe majority of informal caregivers were female.
“The majority of informal caregivers were female”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
Findingown dataThe mean interview time was 92.0 min (SD = 17.6 and IQR = 27.8).
“The mean interview time was 92.0 min (SD = 17.6 and IQR = 27.8).”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
Findingown dataThe majority of informal caregivers were children of the deceased person with dementia.
“were children of the deceased person with dementia.”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataTaking into account personal information provided by informal caregivers could benefit healthcare professionals as it smoothens cooperation with the person with dementia and might prevent escalations.
“Moreover, it could also benefit healthcare professionals as it smoothens cooperation with the person with dementia and might prevent escalations”
Quote in the paperSubstantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
Probably not a substantial claim: may not pass S3 (load-bearing).
Findingown data13 candidates refused participation because they were either not interested or found the topic too sensitive.
“13 candidates refused participation because they were either not interested or found the topic too sensitive.”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataFour persons with dementia living at home or in a care home were not able to return home after their stay at the hospital or revalidation centre, and therefore had to move directly to a nursing home.
“In addition, four persons with dementia living at home or in a care home were not able to return home after their stay at the hospital or revalidation centre, and therefore had to move directly to a nursing home.”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataOf these seven informal caregivers, five repeated information and two actively related information during nursing home transitions.
“Of these seven informal caregivers, five informal caregivers repeated information and two informal caregivers actively related information during nursing home transitions”
Quote in the paperNot a substantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
May combine two claims.
Findingown dataThe capabilities of persons with dementia to express themselves and their place of residence influenced informal caregivers' roles.
“Finally, the capabilities of persons with dementia to express themselves and their place of residence also influenced informal caregivers’ roles.”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataEven though informal caregivers in nursing homes performed activities to make the person with dementia feel at home, less than a quarter performed additional caregiving roles in response to inadequate care provision.
“Further, even though informal caregivers in nursing homes performed activities to make the person with dementia feel at home such as playing music, walking outside, eating out at restaurants and visiting with other informal caregivers, less than a quarter performed additional caregiving roles in response to inadequate care provision.”
Quote in the paperNot a substantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
May combine two claims.
Findingown dataMost informal caregivers felt rushed and emotional when making the nursing home transition decision and transporting the person with dementia to the nursing home, and therefore wished support from healthcare professionals during this process.
“In addition, most informal caregivers felt rushed and emotional when making the nursing home transition decision and transporting the person with dementia to the nursing home, and therefore wished support from healthcare professionals during this process.”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataInformal caregivers in home care functioned more as an intermediary among healthcare professionals, but did not experience this as exhausting, as they did not have to repeat information, but namely pass through information.
“However, informal caregivers in HC functioned more as an intermediary among healthcare professionals, but did not experience this as exhausting, as they did not have to repeat information, but namely pass through information.”
Quote in the paperNot a substantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
May combine two claims.
Findingown dataEleven transitions occurred from care homes or sheltered homes to nursing homes, ten transitions took place from home to nursing homes, and three transitions from somatic to psychogeriatric nursing home wards.
“Eleven transitions occurred from care homes or sheltered homes to nursing homes, ten transitions took place from home to nursing homes and three transitions from somatic to psychogeriatric nursing home wards.”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataInformal caregivers in home care ensured adequate medication supply; arranged sufficient home care support; requested supporting materials to live at home as long as possible; involved necessary healthcare professionals; functioned as an intermediary; organized transport for appointments; and anticipated on nursing home transitions.
“Informal caregivers in HC ensured adequate medication supply; arranged sufficient HC support; requested supporting materials to live at home as long as possible; involved necessary healthcare professionals; functioned as an intermediary; organized transport for appointments; and anticipated on nursing home transitions.”
Quote in the paperSubstantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
May combine two claims.
Findingown dataIn nursing homes, informal caregivers coordinated care by filling information gaps, contacting healthcare professionals when no responsibility was taken to monitor care and follow rules, and emphasizing the presence of supporting materials.
“In nursing homes, informal caregivers coordinated through filling the information gap, contacted healthcare professionals when no responsibility was taken to monitor care and follow the rules, and emphasized the presence of supporting materials (i.e. motion sensors, pressure ulcer mattress, wheel chair cushions or safety belts).”
Quote in the paperSubstantial claimMay combine two claims.
Findingown dataWhen healthcare professionals had a proactive attitude and adequate competencies, informal caregivers felt more part of the team and showed fewer reactive roles such as asking for information, filling the information gap, additional caregiving, monitoring, and coordinating.
“When healthcare professionals had a proactive attitude and adequate competencies, informal caregivers felt more part of the team and showed fewer reactive roles such as asking for information; filling the information gap; and additional caregiving; monitoring; and coordinating.”
Quote in the paperSubstantial claimMay combine two claims.
Findingown dataMost informal caregivers did not feel supported when making the transition decision, as healthcare professionals did not anticipate with and/or guide them.
“Most of them did not feel supported when making the transition decision, as healthcare professionals did not anticipate with and/or guide them.”
Quote in the paperSubstantial claimMay combine two claims.
Findingown dataMore than half of the informal caregivers initiated nursing home transition conversations, as they noticed the increasing physical and cognitive decline of the person with dementia, safety issues, and burden of other informal caregivers and themselves.
“More than half of the informal caregivers initiated nursing home transition conversations, as they noticed the increasing physical and cognitive decline of the person with dementia, safety issues and burden of other informal caregivers and themselves.”
Quote in the paperSubstantial claimMay combine two claims.
Findingown dataIn nursing homes, informal caregivers emphasized asking information about the person with dementia, filling the information gap and performing additional caregiving, monitoring and coordinating roles to ensure person-centred care for the person with dementia.
“In nursing homes, informal caregivers emphasized on asking information about the person with dementia, filling the information gap and performing additional caregiving, monitoring and coordinating roles to ensure person-centred care for the person with dementia.”
Quote in the paperSubstantial claimMay combine two claims.
Findingown dataFirst contact persons were often nurses (in home care and nursing home), case managers dementia (in home care), or physicians (in home care).
“First contact persons were often nurses (in HC and nursing home), case managers dementia (in HC) or physicians (in HC).”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataIn home care, most informal caregivers expressed feeling part of the team, because they had close interactions with healthcare professionals, directly accessed information and divided care tasks.
“In HC, most informal caregivers expressed feeling part of the team, because they had close interactions with healthcare professionals (often district nurses), directly accessed information (through reading the patient file at home) and divided care tasks.”
Quote in the paperSubstantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
Probably not a substantial claim: may not pass S3 (load-bearing).
Findingown dataWhen other residents were in a more advanced stage of dementia compared to the person with dementia, informal caregivers saw the person with dementia declining faster.
“They explained that when the other residents were in a more advanced stage of dementia in comparison to the person with dementia, they saw the person with dementia declining faster.”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataTwo informal caregivers had to persuade their physician of their inability to cope with increasing care demands and to request support towards a nursing home transition.
“Two informal caregivers even had to persuade their physician of their inability to cope with increasing care demands and to request support towards a nursing home transition.”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataDuring nursing home transitions, informal caregivers felt they were initiating, coordinating, filling the information gap and providing personal information about the person with dementia.
“During nursing home transitions, they felt that they were initiating, coordinating, filling the information gap and providing personal information about the person with dementia.”
Quote in the paperSubstantial claimMay combine two claims.
Findingown dataInformal caregivers in home care had patient files, while in nursing homes informal caregivers were able to participate in multidisciplinary team meetings.
“In addition, informal caregivers in HC had patient files (usually to document actions and changes and transfer information), while in nursing homes informal caregivers were able to participate with multidisciplinary team meetings (usually twice a year to discuss overall health, care plans, problems and complaints).”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataInformal caregivers developed methods to cope with distressed behaviours of persons with dementia and made sure that they maintained their activities and remained connected with their familiar environment.
“Informal caregivers also developed methods to cope with distressed behaviours of persons with dementia and made sure that they maintained their activities and remained connected with their familiar environment.”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataIn response to noticing care needs not taken into account, informal caregivers either repeated information or actively relayed information.
“In response to this observation, they either repeated information (‘I decided to write it on the board but even then, they still did not put her hearing aids.’ (Mrs. Wordes)), or actively relayed information (‘If I had my iPad with me, I could have showed you how many emails I sent to them due to lack of communication among them.’ (Mrs. Thatcher)).”
Quote in the paperSubstantial claim- Rests on an assumption: Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
May combine two claims.
Findingown dataAll informal caregivers in home care and nursing homes were involved in making everyday decisions about personal care and supporting materials, because persons with dementia were not able to make these decisions.
“All informal caregivers (in HC and nursing homes) were involved in making everyday decisions about personal care and supporting materials, as persons with dementia were not able to make these decisions.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
Study design and conductcitationThis study followed the Consolidated criteria for Reporting Qualitative research (COREQ).
“This study followed the Consolidated criteria for Reporting Qualitative research (COREQ)”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Tong, Sainsbury, & Craig, 2007
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationThe majority of persons with dementia prefer to live at home.
“Even though the majority of persons with dementia prefer to live at home”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites von Kutzleben, Schmid, Halek, Holle, & Bartholomeyczik, 2012
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
Study design and conductcitationThe qualitative analysis employed a critical realist approach underpinned by a transformative paradigm.
“a critical realist approach was employed (Fletcher, 2017), underpinned by a transformative paradigm (Ben Salah, 2015).”
Quote in the paperNot a substantial claim0 of 2 sources checked- cites Fletcher, 2017
Not checked in the free run.
- cites Ben Salah, 2015
Not checked in the free run.
Classified as probably not a substantial claim.
PremisecitationStephan et al. (2015) revealed that informal caregivers wish for one permanent contact person.
“Stephan et al. (2015) revealed that informal caregivers wish for one permanent contact person”
Quote in the paperSubstantial claim0 of 1 sources checked- cites Stephan et al., 2015
Not checked in the free run.
Classified as probably not a substantial claim.
PremisecitationPersons with dementia have complex care needs and problems involving cognitive, physical, behavioural, psychosocial and spiritual domains.
“Persons with dementia have complex care needs and problems involving cognitive, physical, behavioural, psychosocial and spiritual domains”
Quote in the paperSubstantial claim0 of 3 sources checked- cites Grand, Caspar, & Macdonald, 2011
Not checked in the free run.
- cites Passos, Sequeira, & Fernandes, 2012
Not checked in the free run.
- cites Perrar, Schmidt, Eisenmann, Cremer, & Voltz, 2015
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing).
Study design and conductcitationThe coding procedure was an iterative process combining inductive, deductive, abduction and retroduction methods.
“The coding procedure was an iterative process combining inductive, deductive (DeCuir-Gunby, Marshall, & McCulloch, 2011), abduction and retroduction methods (Fletcher, 2017).”
Quote in the paperNot a substantial claim0 of 2 sources checked- cites DeCuir-Gunby, Marshall, & McCulloch, 2011
Not checked in the free run.
- cites Fletcher, 2017
Not checked in the free run.
May combine two claims.
PremisecitationAs no curative treatments are currently foreseen for dementia, a palliative care approach is paramount.
“As no curative treatments are currently foreseen for this life-limiting disease, a palliative care approach is paramount”
Quote in the paperSubstantial claim0 of 1 sources checked- cites van der Steen et al., 2016
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationHome to nursing home transitions constitute one of the most common transitions in dementia care.
“and constitute one of the most common transitions in dementia care”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Houttekier et al., 2010
Not checked in the free run.
Classified as probably not a substantial claim.
PremisecitationStephan et al. (2015) revealed that informal caregivers fill in the care gaps when they experience insufficient interprofessional collaboration among healthcare professionals.
“and fill in the care gaps when they experience insufficient interprofessional collaboration among healthcare professionals.”
Quote in the paperSubstantial claim0 of 1 sources checked- cites Stephan et al., 2015
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing).
Study design and conductown dataThe interview questions were evaluated for face validity by healthcare professionals, patient representatives and experts in dementia and palliative care.
“These questions were discussed with healthcare professionals from the three care organizations, patient representatives and experts in the field of dementia and palliative care in order to evaluate face validity.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
Study design and conductnone givenParticipants provided written informed consent prior to the interviews.
“Participants provided written informed consent prior to the interviews.”
Quote in the paperNot a substantial claimClassified as probably not a substantial claim.
PremisecitationStephan et al. (2015) revealed that healthcare professionals lack time to optimally collaborate with each other.
“notice that healthcare professional lack time to optimally collaborate with each other”
Quote in the paperSubstantial claim0 of 1 sources checked- cites Stephan et al., 2015
Not checked in the free run.
Probably not a substantial claim: may not pass S2 (checkable).
InterpretationreasoningInformal caregivers need to contribute to the relational autonomy and person-centred care throughout the entire life journey of persons with dementia.
“Therefore, informal caregivers need to contribute to the relational autonomy (Lindeza, Rodrigues, Costa, Guerreiro, & Rosa, 2020) and person-centred care throughout the entire life journey of persons with dementia”
Quote in the paperNot a substantial claim0 of 2 sources checked- cites Lindeza, Rodrigues, Costa, Guerreiro, & Rosa, 2020
Not checked in the free run.
- cites Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences, 2016 Nov
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing).
Premisecitation75% to 95% of persons with dementia die in nursing homes.
“75% to 95% of persons with dementia die in nursing homes.”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Houttekier et al., 2010
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing).
Study design and conductown dataFeasibility of the interview questions was evaluated through three pilot interviews with informal caregivers.
“feasibility of the interview questions was evaluated through three pilot interviews with informal caregivers”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationExisting literature emphasizes the importance of role clarification and negotiation.
“existing literature emphasized the importance of role clarification and negotiation (Wittenberg, Kwekkeboom, Staaks, Verhoeff, & de Boer, 2018).”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Wittenberg, Kwekkeboom, Staaks, Verhoeff, & de Boer, 2018
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).
Study design and conductnone givenData saturation was achieved.
“and data saturation was achieved.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
Study design and conductown dataThe study did not examine the perspectives of involved healthcare professionals to compare collaborative experiences from both sides.
“In addition, we did not examine the perspectives of the involved healthcare professionals to compare the collaborative experiences from both sides.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationRole clarification can decrease role conflicts between informal caregivers and healthcare professionals.
“and role conflicts between informal caregivers and healthcare professionals (Bowers, 1988).”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Bowers, 1988
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing).
Study design and conductreasoningSelection bias might have occurred because recruiters (nurses) could have selected candidates they frequently saw or were familiar with.
“even though selection bias might have occurred as the recruiters (nurses) could have selected candidates they frequently saw or which they were familiar with”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S2 (checkable).
InterpretationreasoningTaking into account different roles of informal caregivers in interprofessional collaboration might optimize the continuity and quality of palliative care in dementia.
“This might optimize the continuity and quality of palliative care in dementia.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationRole clarification can decrease informal caregivers' burden.
“role clarification can decrease reduce informal caregivers’ burden (Wittenberg et al., 2018)”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Wittenberg et al., 2018
Not checked in the free run.
May combine two claims.
Study design and conductnone givenOnly one informal caregiver per person with dementia was interviewed, namely the closest involved informal caregiver.
“we only interviewed one informal caregiver per person with dementia. This informal caregiver was the closest involved informal caregiver.”
Quote in the paperSubstantial claim- Rests on an assumption: In general, more informal caregivers surround a person with dementia than the one closest involved caregiver interviewed.
Probably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationDuring nursing home transitions, role clarification is required.
“Especially, during nursing home transitions role clarification is required (Bucknall et al., 2016)”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Bucknall et al., 2016
Not checked in the free run.
May combine two claims.
Study design and conductnone givenThe study population was diverse, including different types of informal caregivers, a representative mix of men and women, and diverse educational backgrounds.
“our study population was diverse (i.e. different types of informal caregivers, representative mix of man and woman and diverse educational backgrounds).”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing), S4 (based).
Interpretationnone givenDutch cultural and health care aspects may influence the generalizability of the outcomes.
“Finally, Dutch cultural and health care aspects may influence the generalizability of the outcomes.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing).
InterpretationreasoningThe process of monitoring, evaluating and requesting feedback could pinpoint the additional collaborative roles of informal caregivers.
“This process could pinpoint the additional collaborative roles of informal caregivers”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationInformal caregivers may adopt their roles from focusing more on housekeeping, personal care and vigilance in home care to emphasizing attention on advocating, decision-making and additional monitoring in nursing homes.
“informal caregivers may adopt their roles (Graneheim et al., 2014) from focussing more on housekeeping (Brodaty & Donkin, 2009), personal care and vigilance (Ponnala et al., 2020) in HC to emphasizing attention on advocating (Prince, Prina, & Guerchet, 2013), decision-making and additional monitoring in nursing homes (Hoek et al., 2020).”
Quote in the paperNot a substantial claim0 of 3 sources checked- cites Graneheim et al., 2014
Not checked in the free run.
- cites Brodaty & Donkin, 2009
Not checked in the free run.
- cites Ponnala et al., 2020
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationConversing about the participation level is part of clarifying informal caregivers' position within interprofessional collaboration.
“Apart from identifying and discussing the types of roles, conversing about the participation level (Thompson, 2007) is also part of clarifying informal caregivers’ position within interprofessional collaboration.”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Thompson, 2007
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationRole negotiation is conducive.
“Indeed, role negotiation is conducive since healthcare professionals and informal caregivers complement each other (Häikiö et al., 2020).”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Häikiö et al., 2020
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
Study design and conductown dataDifferent researchers were involved in data collection and analysis, and investigator triangulation took place through an independent coding procedure and consultation meetings with the DEDICATED research team.
“Further, different researchers were involved in data collection and analysis, investigator triangulation took place (through an independent coding procedure and consultation meetings with the DEDICATED research team)”
Quote in the paperNot a substantial claim
The paper relies on this without support.
Bereaved informal caregivers' retrospective accounts accurately reflect the interprofessional collaboration they experienced.
“Semi-structured in-depth interviews were done with bereaved informal caregivers of persons with dementia.”
The paper relies on this without support.
The experiences of informal caregivers in the three Dutch care organizations are relevant to understanding interprofessional collaboration in palliative dementia care more generally.
“This qualitative study is part of the larger Desired Dementia Care Towards End of Life (DEDICATED) research project executed in three Dutch care organizations (located in the southern region) offering HC and nursing home care.”
The paper relies on this without support.
Informal caregivers' perceptions of collaboration outcomes are a valid and sufficient basis for studying interprofessional collaboration among healthcare professionals, even though informal caregivers have little insight into the collaboration processes.
“Informal caregivers had little insight into the collaboration processes among healthcare professionals, but could notice the collaboration outcomes that effected their informal caregiver and their collaborative roles (Figure 2).”
The paper relies on this without support.
In general, more informal caregivers surround a person with dementia than the one closest involved caregiver interviewed.
“However, in general more informal caregivers surround a person with dementia.”
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
Dedicated care coordinators, such as case managers or primary nurses, were found to guide families effectively through complex transitions.
“Similarly, dedicated care coordinators, such as case managers or primary nurses, were found to guide families effectively through complex transitions (Khemai et al., 2022; Saragosa et al., 2023; Zmora et al., 2021).”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Khemai et al., 2022
The Findings (Theme 1; page unavailable) identify nurses and dementia case managers as first contact persons, and say some caregivers felt supported during nursing-home transition discussions. But most caregivers did not feel guided when making the transition decision. The Discussion describes family guidance as a role a contact person could take, not an effective outcome the study found. (LLM, conf=0.88)
Experimental — accuracy not yet measuredCaregivers consistently valued staff who were emotionally supportive, responsive, and proactive in involving them in care planning.
“Caregivers consistently valued staff who were emotionally supportive, responsive, and proactive in involving them in care planning (Khemai et al., 2022; Zmora et al., 2021).”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Khemai et al., 2022
The Findings (Theme 1; page not provided) say caregivers felt more part of the team when professionals acted proactively, listened to them, and involved them in decisions. The paper also reports that caregivers wanted support during emotionally difficult nursing-home transitions, but it does not establish that they consistently valued emotionally supportive staff across care settings. Its accounts of delayed responses and uneven involvement further limit the word “consistently.” (LLM, conf=0.85)
Experimental — accuracy not yet measuredHigh staff turnover made it difficult to build trusting relationships, essential for personalized dementia care.
“High staff turnover made it difficult to build trusting relationships, essential for personalized dementia care (Khemai et al., 2022; Mogan et al., 2022).”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Khemai et al., 2022
In Findings, Theme 2 (‘Team size and Team stability’; page unavailable), informal caregivers report that high staff turnover made it difficult to build a strong, stable team. They also link changing team composition to the personal attention given to people with dementia. The paper does not say that turnover impeded trusting relationships or establish those relationships as essential to personalized care. (LLM, conf=0.86)
Experimental — accuracy not yet measuredCaregiver involvement was linked to smoother transitions and improved outcomes for people with dementia.
“Despite these barriers, caregiver involvement was linked to smoother transitions and improved outcomes for people with dementia (Khemai et al., 2022).”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Khemai et al., 2022
The Discussion (page not provided) says caregiver involvement helps maintain information continuity during nursing-home transitions and describes ways it may support adjustment and person-centred care. The Conclusion (page not provided) says this collaboration might improve continuity and quality of care; the study does not establish that involvement was linked to smoother transitions or improved outcomes for people with dementia. (LLM, conf=0.84)
Experimental — accuracy not yet measured
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
Each contradiction between two passages listed here was confirmed by an independent check.
Relationship categories label nieces as cousins
MinorTable 1 gives an exhaustive breakdown of all 32 caregivers and lists three cousins but no nieces. Table 2 identifies caregivers as nieces, including Mrs. Mink, whose relationship is stated as niece by marriage rather than cousin.
“| Cousins (biological and in-law) | 3 (9.4) |”
“| Mrs. Mink | 64 | Niece by marriage of a woman with dementia | Nursing Home |”
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Moving Toward Person- and Family-Centered Care
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Interprofessional collaboration: development of a tool to enhance knowledge translation
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Veld, J. H. I. H., Verkaik, R., van Meijel, B., Verkade, P.-J., Werkman, W., Hertogh, C. M. P. M., & Francke, A. L. (2016) · BMC Geriatrics · doi:10.1186/s12877-016-0268-4 · Cited by 50 · see citing works
Health care transitions for persons living with dementia and their caregivers
Ashbourne, J., Boscart, V., Meyer, S., Tong, C. E., & Stolee, P. (2021) · BMC Geriatrics · doi:10.1186/s12877-021-02235-5 · Cited by 49 · cited 2× · see citing works
“…life care to informal caregivers (Goossens, Sevenants, Declercq, & Van Audenhove, 2020; White et al., 2018) and anticipating with informal caregivers on, for example, future transitions (Ashbourne et al., 2021; Lethin et al., 2016) are essential to enhance interprofessional shared decision-making.”
BackgroundAchieving consensus and controversy around applicability of palliative care to dementia
van der Steen, J. T., Radbruch, L., de Boer, M. E., Jünger, S., Hughes, J. C., Larkin, P. J., Gove, D., Francke, A. L., Koopmans, R. T. C. M., Firth, P., et al. (2015) · International Psychogeriatrics · doi:10.1017/s1041610215000824 · Cited by 46 · see citing works
Toward a Partnership in the Transition from Home to a Nursing Home: The TRANSCIT Model
Groenvynck, L., de Boer, B., Hamers, J. P. H., van Achterberg, T., van Rossum, E., & Verbeek, H. (2020) · Journal of the American Medical Directors Association · doi:10.1016/j.jamda.2020.09.041 · Cited by 46 · see citing works
Stephan, A., Mohler, R. A., Guiteras, A. R., & Meyer, G. (2015) · BMC Health Services Research · doi:10.1186/s12913-015-0875-3 · Cited by 43 · see citing works
Family Caregiving Roles and Impacts
Schulz, R., & Eden, J. (2016) · Cited by 43 · see citing works
Dementia, medication and transitions of care
Deeks, L. S., Cooper, G. M., Draper, B., Kurrle, S. E., & Gibson, D. M. (2015) · Research in Social and Administrative Pharmacy · doi:10.1016/j.sapharm.2015.07.002 · Cited by 42 · see citing works
Goossens, B., Sevenants, A., Declercq, A., & Audenhove, C. V. (2020) · BMC Geriatrics · doi:10.1186/s12877-020-01797-0 · Cited by 41 · see citing works
Development and Testing of a Conceptual Framework for Interprofessional Collaborative Practice
Stutsky, B., & Laschinger, H. K. S. (2014) · Health Interprofessional Practice and Education · doi:10.7710/2159-1253.1066 · Cited by 39 · see citing works
Conceptualizing caregiving activities for persons with dementia (PwD) through a patient work lens
Ponnala, S., Block, L., Lingg, A. J., Kind, A., & Werner, N. E. (2020) · Applied Ergonomics · doi:10.1016/j.apergo.2020.103070 · Cited by 39 · see citing works
Barriers and facilitators to family participation in the care of their hospitalized loved ones
Bélanger, L., Desmartis, M., & Coulombe, M. (2018) · Patient Experience Journal · doi:10.35680/2372-0247.1250 · Cited by 37 · see citing works
Backhaus, R., Hoek, L., de Vries, E., van Haastregt, J. C. M., Hamers, J. P. H., & Verbeek, H. (2020) · BMC Geriatrics · doi:10.1186/s12877-020-01836-w · Cited by 35 · see citing works
Access to community care for people with dementia and their informal carers
Bieber, A., Stephan, A., Verbeek, H., Verhey, F. R. J., Kerpershoek, L., Wolfs, C. A. G., de Vugt, M. E., Woods, B. T., Røsvik, J., Selbæk, G., et al. (2017) · Zeitschrift für Gerontologie und Geriatrie · doi:10.1007/s00391-017-1266-7 · Cited by 34 · see citing works
Interprofessional collaboration in palliative nursing: what is the patient-family role?
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Garvelink, M. M., de Ven, L. G.-V., Smits, C. H. M., Franken, R., Dassen-Vernooij, M., & Légaré, F. (2018) · The Gerontologist · doi:10.1093/geront/gny073 · Cited by 28 · see citing works
Passos, J., Sequeira, C., & Fernandes, L. P. N. S. (2012) · International Journal of Alzheimer s Disease · doi:10.1155/2012/638267 · Cited by 27 · see citing works
Pritty, B., Boos, D. D., & Moghaddam, N. G. (2019) · Aging & Mental Health · doi:10.1080/13607863.2019.1602591 · Cited by 27 · see citing works
Home care in dementia: The views of informal carers from a co-designed consultation
Dalgarno, E. L., Gillan, V., Roberts, A., Tottie, J., Britt, D., Toole, C., & Clarkson, P. (2021) · Dementia · doi:10.1177/1471301221990504 · Cited by 27 · see citing works
Schnelli, A., Karrer, M., Mayer, H., & Zeller, A. (2020) · Journal of Clinical Nursing · doi:10.1111/jocn.15363 · Cited by 26 · see citing works
Häikiö, K., Sagbakken, M., & Rugkåsa, J. (2020) · BMC Geriatrics · doi:10.1186/s12877-020-01663-z · Cited by 25 · see citing works
Bucknall, T. K., Hutchinson, A. M., Botti, M. A., McTier, L., Rawson, H. A., Hewitt, N. A., McMurray, A. M., Marshall, A. P., Gillespie, B. M., & Chaboyer, W. P. (2016) · Journal of Advanced Nursing · doi:10.1111/jan.12953 · Cited by 24 · see citing works
Partnership between staff and family in long-term care facility: a hybrid concept analysis
Jang, H.-Y. (2020) · International Journal of Qualitative Studies on Health & Well-Being · doi:10.1080/17482631.2020.1801179 · Cited by 19 · see citing works
Informal caregivers and persons with dementia’s everyday life coping
Nordtug, B., Malmedal, W., Alnes, R. E., Blindheim, K., Steinsheim, G., & Moe, A. (2021) · Health Psychology Open · doi:10.1177/20551029211000954 · Cited by 18 · see citing works
Rognstad, M., Nåden, D., Ulstein, I., Kvaal, K., Langhammer, B., & Sagbakken, M. (2020) · Journal of Clinical Nursing · doi:10.1111/jocn.15208 · Cited by 16 · see citing works
Family group conferencing in dementia care: an exploration of opportunities and challenges
Górska, S., Forsyth, K., Prior, S., Irvine, L. A., & Haughey, P. (2015) · International Psychogeriatrics · doi:10.1017/s1041610215001507 · Cited by 15 · see citing works
Jarrett, N. (2009) · International Journal on Disability and Human Development · doi:10.1515/ijdhd.2009.8.1.51 · Cited by 12 · see citing works
Henriksen, N. O., Moholt, J.-M., & Blix, B. H. (2020) · Journal of Aging & Social Policy · doi:10.1080/08959420.2019.1707058 · Cited by 12 · see citing works
Multidisciplinary Team Meetings About a Patient in Primary Care
Houdt, S. V., Lepeleire, J. D., Driessche, K. V., Thijs, G., & Buntinx, F. (2011) · Journal of Primary Care & Community Health · doi:10.1177/2150131910393357 · Cited by 11 · see citing works
Hughes, S. E., Woods, B. T., Algar-Skaife, K., Jelley, H., & Ch, J. (2019) · Journal of Central Nervous System Disease · doi:10.1177/1179573519843872 · Cited by 10 · see citing works
Pre-decision regret before transition of dependents with severe dementia to long-term care
Hanssen, I., Mkhonto, F. M., Øieren, H., Sengane, M. L., Sørensen, A. L., & Tran, P. T. M. (2022) · Nursing Ethics · doi:10.1177/09697330211015339 · Cited by 10 · cited 1× · see citing works
“Moreover, our finding that many informal caregivers lacked support from healthcare professionals during nursing home transitions in dementia care (for example, when making transition-related decisions) is supported by other studies (Hanssen et al., 2021; Lord, Livingston, Robertson, & Cooper, 2016).”
ResultCareau, E., Bainbridge, L., Steinberg, M., & Lovato, C. Y. (2016) · Canadian Journal of Program Evaluation · doi:10.3138/cjpe.225 · Cited by 7 · see citing works
Flagged first, then by citations
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Designing and Evaluating IT Applications for Informal Caregivers: Scoping Review
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- Authors
- Khemai, C., Meijers, J. M., Mujezinovic, I., Bolt, S. R., Pieters, S., Moser, A., Schols, J. M. G. A., & Janssen, D. J. A.
- Affiliations
- Maastricht University (NL)
- Maastricht University
- Zuyd University of Applied Sciences (NL)
- Corresponding author
- Khemai, Chandni
- Venue
- Dementia
- Publisher
- SAGE Publications
- Published
- 2022-05-10
- Volume
- 21
- Issue
- 6
- Pages
- 1890-1913
- ISSN
- 1471-3012 (ISSN-L)
- 1741-2684
- PMC
- PMC9301172
- OpenAlex
- W4229447078
- Semantic Scholar
- da3612702fd4ab8fbb43ff82cf87039c6c03c5b3
- Cited by
- 17
- References
- 81
- Citations by year
- 2026: 5 · 2025: 5 · 2024: 5 · 2023: 2
- FWCI
- 3.44
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- Locations
- Dementia (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Research Publications (Maastricht University) (publishedVersion, cc-by)
- Research portal (Tilburg University) (submittedVersion, cc-by)
- Data Archiving and Networked Services (DANS) (submittedVersion, cc-by)
- Research Publications (Maastricht University) (submittedVersion, other-oa)
- Funders
- Netherlands Organization for Health Research and Development (844001405)
- Topics
- Health Sciences › Health Professions › General Health Professions › Interprofessional Education and Collaboration
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
- Keywords
- interprofessional collaboration, palliative care, informal caregivers, home care, nursing homes, shared decision-making, information sharing, bereaved caregivers, continuity of care, health care team roles
- MeSH terms
- Dementia, Health Personnel, Humans, Nursing Homes, Palliative Care, Caregivers, Qualitative Research
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Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
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