TY - GEN
T1 - Intersecting roles in forensic mental health care: Unveiling family caregivers' and healthcare professionals' perceptions of family caregiver involvement in service user care and treatment
AU - Vestphal, Tina Kirstine
PY - 2024/9/19
Y1 - 2024/9/19
N2 - Background: Globally and nationally, there is a concerted political objective to involve family
caregivers in the care and treatment of service users with mental illness. The aim is to
enhance the prospects of sustained improvement for the service user. However, research
indicates that, within forensic mental health care (FMHC), family caregivers face heightened
burdens, because of insufficient support and limited involvement in the service user’s care and
treatment. This increased burden stems from a dual stigmatization associated with the service
user’s mental illness, their criminal offense(s), and entrenched beliefs and practices among
healthcare professionals regarding caregiver collaboration and involvement. It appears that
there is only sparse research available that has investigated how the professionals engage
caregivers, the role caregivers play in service user care and treatment, and how caregivers
perceive their role in the context of FMHC.Aim: This PhD study aims to generate knowledge about the experiences and perceptions of
the family caregivers of service users in FMHC. The focus is on caregiver involvement and
support. Subsequently, to generate knowledge about healthcare professionals’ perceptions of
facilitating and hindering factors in the involvement of caregivers in care and treatment.Methods: This PhD study was epistemologically and methodologically informed by the
assumptions of symbolic interactionism. The PhD study comprised various approaches to
generating knowledge: a qualitative evidence synthesis of 13 peer-reviewed studies (Substudy 1/Paper1); explorative; in-depth qualitative interviews with 12 caregivers in FMHC
(Sub-study 2/Paper 2); and five focus group interviews (including 26 participants in total)
with healthcare professionals in FMHC (Sub-study 3/Paper 3).Findings: In Paper 1, the analysis resulted in three interrelated descriptive themes: violence
against family; a great burden of responsibility; and difficult collaboration, together with three
interrelated analytical themes: bearing witness; persistent presence; and advocacy becomes
necessary. In Paper 2, the thematic analysis resulted in three interrelated main themes: strategies to
normalize everyday living; distrust of the quality of care; and loss and grief. In Paper 3, the thematic analysis resulted in two interrelated main themes: (1) Organizational
constraints – with the additional subthemes duty of confidentiality, and substance use
treatment, and (2) Collaboration with caregivers – with the additional subthemes alliance in
collaboration, and overinvolvement. The knowledge synthesis that evolved across the findings of the three sub-studies/papers
shows that family caregivers and healthcare professionals have divergent perceptions of what
count as barriers and facilitators that impact their collaboration, and thereby further impact
family caregiver support and involvement in the support of the service user: Family caregivers
employ various strategies, including understating, pleasing, and calming the service user, with the aim of establishing a sense of normality in their complex interactions. However, caregivers
often experience feelings of burden, shame, and social stigmatization regarding the service
user’s behavior and offense(s). This sentiment extends into their collaboration with
professionals. Caregivers who express criticism or have concerns about the quality of care and
treatment, and concern for the service user’s physical health, are viewed by healthcare
professionals as lacking understanding of the service user’s mental illness and as being
difficult to work with. Healthcare professionals prefer caregivers to support the care and treatment established by
professionals. As a result, professionals may (inadvertently) fuel persistency or advocacy in
caregivers, in the form of, for example, caregivers’ protective stance toward the service user.
Consequently, caregivers might be labeled as emotionally overinvolved or difficult to
collaborate with, potentially hindering effective care and treatment and leading to their
exclusion from the care and treatment process. In this process, there’s a risk that caregivers’
possible experiences of loss and grief may be overlooked or suppressed by professionals and
caregivers. Consequently, this dynamic complicates the collaboration between healthcare
professionals and caregivers, ultimately hindering caregiver support of the service user in
FMHC.
AB - Background: Globally and nationally, there is a concerted political objective to involve family
caregivers in the care and treatment of service users with mental illness. The aim is to
enhance the prospects of sustained improvement for the service user. However, research
indicates that, within forensic mental health care (FMHC), family caregivers face heightened
burdens, because of insufficient support and limited involvement in the service user’s care and
treatment. This increased burden stems from a dual stigmatization associated with the service
user’s mental illness, their criminal offense(s), and entrenched beliefs and practices among
healthcare professionals regarding caregiver collaboration and involvement. It appears that
there is only sparse research available that has investigated how the professionals engage
caregivers, the role caregivers play in service user care and treatment, and how caregivers
perceive their role in the context of FMHC.Aim: This PhD study aims to generate knowledge about the experiences and perceptions of
the family caregivers of service users in FMHC. The focus is on caregiver involvement and
support. Subsequently, to generate knowledge about healthcare professionals’ perceptions of
facilitating and hindering factors in the involvement of caregivers in care and treatment.Methods: This PhD study was epistemologically and methodologically informed by the
assumptions of symbolic interactionism. The PhD study comprised various approaches to
generating knowledge: a qualitative evidence synthesis of 13 peer-reviewed studies (Substudy 1/Paper1); explorative; in-depth qualitative interviews with 12 caregivers in FMHC
(Sub-study 2/Paper 2); and five focus group interviews (including 26 participants in total)
with healthcare professionals in FMHC (Sub-study 3/Paper 3).Findings: In Paper 1, the analysis resulted in three interrelated descriptive themes: violence
against family; a great burden of responsibility; and difficult collaboration, together with three
interrelated analytical themes: bearing witness; persistent presence; and advocacy becomes
necessary. In Paper 2, the thematic analysis resulted in three interrelated main themes: strategies to
normalize everyday living; distrust of the quality of care; and loss and grief. In Paper 3, the thematic analysis resulted in two interrelated main themes: (1) Organizational
constraints – with the additional subthemes duty of confidentiality, and substance use
treatment, and (2) Collaboration with caregivers – with the additional subthemes alliance in
collaboration, and overinvolvement. The knowledge synthesis that evolved across the findings of the three sub-studies/papers
shows that family caregivers and healthcare professionals have divergent perceptions of what
count as barriers and facilitators that impact their collaboration, and thereby further impact
family caregiver support and involvement in the support of the service user: Family caregivers
employ various strategies, including understating, pleasing, and calming the service user, with the aim of establishing a sense of normality in their complex interactions. However, caregivers
often experience feelings of burden, shame, and social stigmatization regarding the service
user’s behavior and offense(s). This sentiment extends into their collaboration with
professionals. Caregivers who express criticism or have concerns about the quality of care and
treatment, and concern for the service user’s physical health, are viewed by healthcare
professionals as lacking understanding of the service user’s mental illness and as being
difficult to work with. Healthcare professionals prefer caregivers to support the care and treatment established by
professionals. As a result, professionals may (inadvertently) fuel persistency or advocacy in
caregivers, in the form of, for example, caregivers’ protective stance toward the service user.
Consequently, caregivers might be labeled as emotionally overinvolved or difficult to
collaborate with, potentially hindering effective care and treatment and leading to their
exclusion from the care and treatment process. In this process, there’s a risk that caregivers’
possible experiences of loss and grief may be overlooked or suppressed by professionals and
caregivers. Consequently, this dynamic complicates the collaboration between healthcare
professionals and caregivers, ultimately hindering caregiver support of the service user in
FMHC.
U2 - 10.21996/wfvf-3g46
DO - 10.21996/wfvf-3g46
M3 - Ph.D. thesis
PB - Syddansk Universitet. Det Sundhedsvidenskabelige Fakultet
ER -