The unexpected death of a child is one of the most challenging losses as it fractures survivors’ sense of parenthood and other layers of identity. Given that not all the bereaved parents who have need for support respond well to available treatments and that many have little access to further intervention or follow-up over time, online interventions featuring therapeutic writing and peer support have strong potential. In this article we explore how a group of bereaved mothers experienced the process of participating in an online course in therapeutic writing for the integration of grief. Our research questions were: How do parents who have lost a child experience being part of an online course in therapeutic writing? What are the perceived benefits and challenges of writing in processing their grief? We followed an existential phenomenological approach and analyzed fieldwork notes (n = 13), qualitative data from the application and assessment surveys (n = 35; n = 21), excerpts from the journals of some participants (n = 3), and email correspondence with some participants (n = 5). We categorized the results in three meaning units: (1) where does my story begin? The “both and” of their silent chaos; (2) standing on the middle line: a pregnancy that does not end; (3) closures and openings: “careful optimism” and the need for community support. Participants experienced writing as an opportunity for self-exploration regarding their identities and their emotional world, as well as a means to develop and strengthen a bond with their children. They also experienced a sense of belonging, validation, and acceptance in the online group in a way that helped them make sense of their suffering. Online writing courses could be of benefit for bereaved parents who are grieving the unexpected death of a child, but do not replace other interventions such as psychotherapy. In addition to trauma and attachment informed models of grief, identity informed models with a developmental focus might enhance the impact of both low-threshold community interventions and more intensive clinical ones. Further studies and theoretical development in the area are needed, addressing dialogical notions such as the multivoicedness of the self. Lehmann OV, Neimeyer RA, Thimm J, Hjeltnes A, Lengelle R and Kalstad TG (2022) Experiences of Norwegian Mothers Attending an Online Course of Therapeutic Writing Following the Unexpected Death of a Child. Front. Psychol. 12:809848. doi: 10.3389/fpsyg.2021.809848
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Background Parenting a child with profound intellectual and multiple disabilities has great implications. Parents generally rely heavily on healthcare and social welfare services in caring for the child at home. Previous studies indicated mismatch between what parents need to preserve family and personal wellbeing and what is typically provided by services. This study focused on the role of healthcare and social welfare services in childcare and aims to contribute to understanding how parents perceive their interactions with service providers. Methods We interviewed 25 Dutch parents who cared for their child at home. Data were analysed using Framework Method. Findings Two overarching themes were found: “Being the lifeline” addressed that parents had central roles in fragmented services, and “Losing ownership” highlighted that parents were constrained in living life according to own beliefs and values while interacting with providers. Conclusions Findings illuminated that many parents became overburdened and compromised heavily on agency over family thriving due to functioning of healthcare and social welfare services. Findings supported working with integrated family case managers, creating effective and proactive access to equipment and services, and enacting high quality facilities for help with childcare and respite. These are important conditions to enable parents to construct family life more autonomously and make their further contribution to society. This may also lead to improved connotations of dependence on healthcare and social welfare services.
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Background: Parents of children with profound intellectual and multiple disabilities (PIMD) have extensive care duties. This study describes the phenomenon “parenting a child with PIMD.” Method: We conducted in-depth interviews with 25 Dutch parents. A reflective lifeworld research. Findings: The essential meaning of the phenomenon was understood as “continuously struggling to create and maintain new equilibriums that protect the child and the family from hardship; changing in context through time.” The following eight constituents were identified: (1) medical complexity; (2) multidimensional weariness; (3) care for siblings; (4) social connectedness; (5) uncertainty about the future; (6) wrecking bureaucracy; (7) dependency on healthcare delivery; and (8) financial concerns. Conclusions: Healthcare services should provide families with easy access to assistive technology and services needed to manage family life. Responsiveness to parents’ challenges offers them the possibility to participate in society. Healthcare professionals should address the parents’ perspectives related to the child’s quality of life.
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In the Netherlands, many parents of children with profound intellectual and multiple disabilities care for their children at home. Little is known about how parents and involved healthcare professionals share and align medical care for these children. This study aims to contribute to a better understanding of the dimensions that affect how medical care is shared and how healthcare professionals can align care with family needs. The study design was inspired by grounded theory. We analyzed in-depth interviews with 25 Dutch parents. The analysis identified five dimensions affecting how parents and professionals shared and aligned medical care: fragility, planned care, irregularities, interactions with providers, and parents’ choices. We recognized three distinctive ways these dimensions interplayed, characterizing scenarios of sharing care: dependent care, dialogical care, and autonomous care. The findings illuminated that parental distress decreased when parents could communicate about what they considered important for their child and family and its implications for sharing care. Parents developed their capacity to manage medical care and often evolved in their thinking about the quality of care and life. Sometimes this evolution was due to struggles with the care provided by professionals. Therefore, healthcare professionals may need to broaden the relational work of shared decision-making to include the sharing of medical care. Arrangements need to be continually reassessed as changes in the child’s and family’s situation trigger changes in preferred patterns of sharing care. Commitment to parents’ autonomy implies that healthcare professionals should be attentive to the parents’ emotional and relational needs.
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Within paediatric palliative care, it is essential for families and providers to have open, equal, and trusting relationships. In practice, however, building relationships can be challenging. Investing in better understanding the differences in each other's frames of reference and underlying values seems important. Wonder Lab practices provide a space to explore these differences by focusing together on life phenomena in curious and Socratic ways. Wonder Labs were organised with parents, healthcare professionals, and students involved in Dutch paediatric palliative care. The aim of this study was to develop an understanding of how participants experienced participating in Wonder Labs. We conducted twenty in-depth interviews with Wonder Lab participants and used inductive thematic analysis for data interpretation. Five themes were identified: Slowing down, Appreciating stories, Becoming vulnerable, Opening up and diving in, and Reframing perspectives. Participating in Wonder Labs allowed mothers, healthcare professionals, and students to contribute to deepening experiences and gain an expanded understanding of what is at play in caring for children with life-limiting and life-threatening conditions. Through working in pluralised groups, frames of reference and understandings complemented each other and could change. Participants often adopted a more open attitude towards others involved in care after participating and adapted day-to-day practices. Deliberating within paediatric palliative care on sensitive issues and their underlying personal and professional beliefs and values must be part of working together, without specific care situations being the catalyst. This may foster the mutual understanding needed in searching for quality of life, death, and bereavement.
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What do a grandmaster Jedi and a grandfather have in common? The answer will become clear in this story of two sisters who used the Career Writing method to identify career questions, life themes, and tapped into the wisdom of their childhood heroes. Lengelle, R., Haggerty, E. (2022). Career Writing and the Tale of Two Sisters: The Family Project, Heroic Drive, and How No Sibling Has the Same Parents. In: Schreiber, M. (ed) Narrative Ansätze in Beratung und Coaching (pp. 163-172). Springer, Wiesbaden.
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Often research, education and professional practice are positioned as different activities. Researchers, students and professionals are defined in subject-object relations. For my Phd. thesis I applied another perspective. In dialogue with School Social Workers, Bachelor Social Work students during their internship, Vocational High School (VHS) Teachers and other involved actants I worked on activities to improve the financial health of VHS students. We explored in a relational spacial ethnography the roles of all above mentioned actants as learning professional and inquirer. During this long term project a mixed method participatory approach was applied. However in this ethnography these activities where integral part of developing of a whole set of interventions. It gave us the opportunity to develop new perspectives at developing interventions and learning in a relational dialogue
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This interview-based article about Hubert Hermans, founder of The Dialogical Self Theory (DST), was intended to determine the founder’s personal relationship to the construction and development of his theory and to provide a portrait of the engaged scientist and vulnerable researcher at work. DST lends itself to interdisciplinary research and practice, and is used in diverse fields and contexts (e.g. psychotherapy; bereavement scholarship; higher education). However, little has been written about the founder of the theory. I embarked on this project to illuminate the researcher and theorist as an individual who taps into personal material for practical and conceptual learning, and to honour Hermans’s contribution to the field of psychology, in the spirit of a Festschrift. Reinekke Lengelle (02 Apr 2021): Portrait of a scientist: in conversation with Hubert Hermans, founder of Dialogical Self Theory1, British Journal of Guidance & Counselling, DOI: 10.1080/03069885.2021.1900779
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This report summarises the findings of an international study of the ethical challenges faced by social workers during the Covid-19 pandemic, undertaken during 6th-18th May 2020. 607 responses from 54 countries were received via an online survey, additional interviews and local surveys. Six key themes relating to social workers’ ethical challenges and responses were identified: 1. Creating and maintaining trusting, honest and empathic relationships via phone or internet with due regard to privacy and confidentiality, or in person with protective equipment. 2. Prioritising service user needs and demands, which are greater and different due to the pandemic, when resources are stretched or unavailable and full assessments often impossible. 3. Balancing service user rights, needs and risks against personal risk to social workers and others, in order to provide services as well as possible. 4. Deciding whether to follow national and organisational policies, procedures or guidance (existing or new) or to use professional discretion in circumstances where the policies seem inappropriate, confused or lacking. 5. Acknowledging and handling emotions, fatigue and the need for selfcare, when working in unsafe and stressful circumstances. 6. Using the lessons learned from working during the pandemic to rethink social work in the future.
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