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Go With the FLOo – Authentic Voices in Research With Families Where One or More Parents Have an Intellectual Disability
No full textIn this chapter, we discuss the merits and challenges of organic communication within an inclusive, iterative research design through our research project ‘Improving the quality of life of families with parents with intellectual disabilities (IDs) and their children (,12 years) by means of assistive robotics’. We will discuss the research process, its key steps and preliminary findings, as well as how inclusivity of participants was taken along throughout this process. The links between research design, designers and project participants are explored and reflected on. Our positions as researchers within the research process are also reflected upon. We will additionally address the implications of our research for the broader field of inclusive design for assistive robotics and the creative methodologies employed and tailored to the needs of families headed by parents with an ID and their children. In this, we keep a close eye on the difficulties such families face within the context of our research project. Lastly, we reflect on several key markers of collaboration within marginalised communities we encountered in our research
'Someone must do it':multiple views on family's role in end-of-life care - an international qualitative study
No full textBackground:Family is a crucial social institution in end-of-life care. Family caregivers are encouraged to take on more responsibility at different times during the illness, providing personal and medical care. Unpaid work can be overburdening, with women often spending more time in care work than men.Objectives:This study explored multiple views on the family’s role in end-of-life care from a critical perspective and a relational autonomy lens, considering gender in a socio-cultural context and applying a relational autonomy framework. It explored patients, relatives and healthcare providers’ points of view.Design:This qualitative study was part of the iLIVE project, involving patients with incurable diseases, their relatives and health carers from hospital and non-hospital sites.Methods:Individual interviews of at least five patients, five relatives and five healthcare providers in each of the 10 participating countries using a semi-structured interview guide based on Giger–Davidhizar–Haff’s model for cultural assessment in end-of-life care. Thematic analysis was performed initially within each country and across the complete dataset. Data sources, including researchers’ field notes, were translated into English for international collaborative analysis.Results:We conducted 158 interviews (57 patients, 48 relatives and 53 healthcare providers). After collaborative analysis, five themes were identified across the countries: family as a finite care resource, families’ active role in decision-making, open communication with the family, care burden and socio-cultural mandates. Families were crucial for providing informal care during severe illness, often acting as the only resource. Patients acknowledged the strain on carers, leading to a conceptual model highlighting socio-cultural influences, relational autonomy, care burden and feminisation of care.Conclusion:Society, health teams and family systems still need to better support the role of family caregivers described across countries. The model implies that family roles in end-of-life care balance relational autonomy with socio-cultural values. Real-world end-of-life scenarios do not occur in a wholly individualistic, closed-off atmosphere but in an interpersonal setting. Gender is often prominent, but normative ideas influence the decisions and actions of all involved
Experience sampling of suicidality, religiosity and spirituality in depression: Network analyses using dynamic time warping
No full textBackgroundSuicidality is a clinically important and multifaceted phenomenon, frequently present in depressed subjects. Religiosity and spirituality (R/S) can have an attenuating as well as a reinforcing effect on suicidality.MethodsFrom two Dutch mental health care settings, a sample of 31 depressed and in- and outpatients with suicidal ideation, self-identifying as being religious or spiritual, was selected by convenience sampling. Using an experience sampling method (ESM) mobile application, during six days (mean of 42 assessments per subject), the association between symptoms of depression, suicidality, and specific positive-supportive affective R/S and positive psychology variables. For 28 participants symptom network plots on a group level, and on an individual level, were analyzed using dynamic time warping (DTW).ResultsParticipants were on average 35.7 years old, and 65 % were women. In the group-level undirected network, R/S variables were linked to positive psychology variables via a bridge function of inner peace. Changes in the experience of inner peace and enjoying a physical activity preceded changes of several other symptoms. A network dynamic appeared with a dense cluster of ‘positive psychology’ items.LimitationsOnly a limited number of R/S variables were included.ConclusionThe results of this study suggest that religiosity and spirituality function as meaningful factors in depression and suicidality in religiously or spiritually engaged persons. Experienced inner peace has a positive association with reasons to live. Experience sampling method data can be effectively analyzed using dynamic time warping. Exploring individual religious or spiritual engagement can prove important in treating suicidality and depression
Identification of a ‘Blue Zone’ in the Netherlands: a genetic, personal, socio-cultural, and environmental profile
No full textBackground and Objectives“Blue Zones” (BZs) are regions with exceptionally high numbers of longevous inhabitants. Several factors have been suggested to promote longevity in BZs, but the evidence generally does not meet scientific quality criteria. We aimed to characterize a municipality as a “relative BZ,” satisfying 3 criteria: compared to other municipalities, more exceptionally longevous inhabitants, a higher life expectancy, and a more stable population.Research Design and MethodsThe population-based Longitudinal Aging Study Amsterdam has been ongoing since 1992 in 11 municipalities across the Netherlands with 3- or 4-yearly measurement waves. Using all available waves, we included 39 genetic, personal, sociocultural, and environmental characteristics.ResultsOne municipality satisfied the 3 BZ criteria. In comparison with participants in other municipalities in the same province and other provinces in the Netherlands, BZ-participants more often had a polygenic risk score linked to longevity, smoked less, consumed less alcohol and more fruit, biked more minutes, did more often paid work, practiced singing more often, attached higher importance to religion, and lived in a more walkable and livable environment. In contrast, BZ-participants had a slower walking speed, more depressive symptoms, felt less purpose in life, had a larger waist circumference, walked and did sports less often, consumed less vegetables, and exchanged less instrumental support. Other indicators of their physical and mental health and social connectedness did not substantially differ from non-BZ-participants.Discussion and ImplicationsRather than clues to healthy aging, our findings suggest factors conducive to longevity regardless of impaired health
Experiences of grief and maltreatment among orphans in foster homes in Namibia
No full textOrphans in SSA are often cared for in foster homes. Although there is no consistent picture of whether orphans experience more often than non-orphans child maltreatment, they are at risk of facing violence in their home situation. This study aimed to understand how Namibian orphans experience their treatment in foster care and how exposure to maltreatment influences their experiences of grief. An ethnographic design was used in which 46 children, adolescents, their carers and various experts in northern Namibia participated. Focus groups, individual interviews and art-based methods were used. The results show that the majority of the orphans experience a form of maltreatment, including differential treatment between themselves and the biological children in the household. Risk factors for child maltreatment are identified on child, carer and household level. Children and adolescents long for their parents when they are treated badly and feel the parent could have protected and comforted them, which shows the important role of having a secure foster home situation in coping with parental loss. Parenting interventions to positively influence the risk of child maltreatment in foster care are recommended
Grief and bereavement among migrant youth in the Netherlands
No full textBackgroundDutch youth care providers can play a central role in grief care for migrant and refugee youth, but their awareness of, and expertise in, grief and bereavement related issues in this population is often limited. Research on cross-cultural aspects of grief and loss emphasizes the role of cultural models in shaping responses to loss (Rosenblatt, 2013). RationaleThe aim of this study is to explore culturally diverse responses to bereavement in young migrants, to better understand ways to support them, and to increase youth care providers’ awareness and expertise.DesignSix focus groups and 8 in-depth interviews with youth care workers were conducted, as well as 15 in-depth interviews with migrant youth (16-23 years) following loss of a parent. Thematic analysis (Braun & Clark, 2006) was used to analyze the data.ResultsCultural models that shape youth’s responses to loss include silence in relation to death, changed roles within the family, the importance of grieving together, and taboos regarding seeking professional help. Sufficient trust has to be built before grief can be discussed. Youth care providers use various methods to discuss the topic. Understanding the cultural background of the client may be supported by a Cultural Formulation Interview (Smid et al., 2018) or a cultural mediator. There is a need for additional tools to assess the cultural context of bereavement and to facilitate collaboration with members of the youth’s support system.ConclusionCultural models shape young’s people responses to loss in diverse ways, and there is a need to attend to the cultural background of the young person in order to assist bereaved youths in dealing with the loss.<br/
Integration of a Disability Lens as Prerequisite for Inclusive Higher Education
No full textPURPOSE. Occidental higher education often approaches disability as a disparate issue, failing to recognize that it is part of human diversity. Such an approach hinders inclusive education because it overlooks how disability is intertwined with other identities and concepts of exclusion. The overarching aim of this paper is to enhance understanding of (intersecting) disabling processes within education policy and practice and the impact thereof on students; and to raise educators’ awareness about how integration of knowledge from Disability Studies within pedagogy and their daily interaction with students, can positively influence disabled students’ wellbeing, their study opportunities and aid the overall process of inclusion.APPROACH. This paper offers a disability lens by (1) presenting a literature overview from a Disability Studies (DS) perspective about disability and exclusionary phenomena, in particular disablism and ableism; (2) substantiating how a current focus on accessibility hinders actual inclusion; (3) analysing a case-study through the presented perspective with attention to Dutch contextual factors. For the case-study, the first author and ‘Tess’ engaged in regular conversations during a year in which Tess shared her experiences as a student of higher education. In this paper, a selection of these experiences is presented from a reflexive perspective and with application of the presented frameworks. With this, the complex impact of exclusionary processes on interactions between students, educators and on the organization of university involved (social) events is illustrated.FINDINGS. The lack of nuanced, fluid and intersectional approaches to disability within mainstream education hinders the recognition of (epistemic) injustices. Exclusionary processes and practices in higher education remain unacknowledged, although they negatively impact disabled students and block their epistemic contribution. Moreover, the continued focus on accessibility hinders implementation of the international convention on the rights of persons with disabilities and deflects attention from the fact that inclusive education requires systemic change and a multi-layered approach.KEY MESSAGE. The current trajectory of disability inclusion is counterproductive without true systemic change. Integration of the presented disability lens is imperative for truly intersectional approaches to inclusion and offers educators a way to positively influence students’ wellbeing and identity development, even when policy changes are not yet achieved
