"Contact A Family": professionals and parents in partnership

Davies, Sue; Hall, David

doi:10.1136/adc.2004.070706

Cited by 48 publications

(45 citation statements)

References 27 publications

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“…While we do not understand how parents/caregivers make these changes, over time, they begin to revise expectations [28], making adjustments to tasks of parenting/caregiving. Clinicians can address uncertainty by providing coping skills to manage stressful situations [29] and offering extensive information about potential impairments and available resources [30]. Normalizing available resources and services, such as providing individualized educational plans or life-planning services and offering support until 21 years, can create bridges with pre-tumor expectations and address underlying concerns about caregiving when the caregiver can no longer provide care.…”

Section: Discussionmentioning

confidence: 99%

Mother-caregiver expectations for function among survivors of childhood brain tumors

Lucas

Barakat

Ulrich

et al. 2015

Support Care Cancer

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Purpose Children diagnosed with brain tumors increasingly survive to adulthood, although they do so with needs often requiring continued parental caregiving. We sought to describe the nature of caregivers’ expectations about survivors’ function and how expectations connect to ongoing management and decision-making. Methods Forty-five qualitative interviews with mother-caregivers were conducted and coded for themes related to expectations for their adolescent/young adult children living post-childhood brain tumors. Results Five main themes emerged as integral to mother-caregiver expectations: realizing a difference in the survivor, noticing limitations to independence in the survivor, memories of learning about clinical prognoses as understood from consent meetings and education, managing these realizations, and acknowledging unresolved challenges. Conclusions Caregiver expectations are influenced by both initial clinical interactions and contemporary family dynamics and require individual- and family-specific survivorship planning. As caregiver expectations can influence management behaviors that impact outcomes and possibly independence, implications for clinician-caregiver shared decision-making are substantial.

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Section: Discussionmentioning

confidence: 99%

Mother-caregiver expectations for function among survivors of childhood brain tumors

Lucas

Barakat

Ulrich

et al. 2015

Support Care Cancer

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“…Access to reliable information helps parents cope with their child’s illness and regain a sense of control 26,27. Information also allows parents to feel more involved in the management of their child’s condition, play an empowered role in treatment decisions made, and respond to their child’s questions while providing reassurance 28,29. A recent study conducted to determine parental sources of ADHD-related information highlighted that parents rely mostly on HCPs, such as pediatricians and general practitioners (GPs), for information but also on written sources of information 30…”

Section: Introductionmentioning

confidence: 99%

Do parents of children with attention-deficit/hyperactivity disorder (ADHD) receive adequate information about the disorder and its treatments? A qualitative investigation

Ahmed¹,

Borst²,

Yong³

et al. 2014

PPA

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BackgroundAttention-deficit/hyperactivity disorder (ADHD) is the most prevalent pediatric neurodevelopmental condition, commonly treated using pharmacological agents such as stimulant medicines. The use of these agents remains contentious, placing parents in a difficult position when deciding to initiate and/or continue their child’s treatment. Parents refer to a range of information sources to assist with their treatment decision-making. This qualitative study aimed to investigate 1) parents’ ADHD-related knowledge pre- and post-diagnosis, 2) the information sources accessed by parents, 3) whether parents’ information needs were met post-diagnosis, and 4) parents’ views about strategies to meet their information needs.MethodsThree focus groups (n=16 parents), each lasting 1.0–1.5 hours were conducted. Focus groups were audio-recorded and transcribed verbatim. Transcripts were analyzed using the framework method, coded, and categorized into themes.ResultsGenerally, parents had limited ADHD-related knowledge prior to their child’s diagnosis and perceived prescription medicines indicated for ADHD in a negative context. Parents reported improved knowledge after their child’s diagnosis; however, they expressed dissatisfaction with information that they accessed, which was often technical and not tailored to their child’s needs. Verbal information sought from health care professionals was viewed to be reliable but generally medicine-focused and not necessarily comprehensive. Parents identified a need for concise, tailored information about ADHD, the medicines used for its treatment, and changes to their child’s medication needs with age. They also expressed a desire for increased availability of support groups and tools to assist them in sourcing information from health care professionals during consultations, such as question prompt lists.ConclusionThere are gaps in parents’ knowledge about ADHD and its treatment, and an expressed need for tailored and reliable information. Future research needs to focus on providing parents with avenues to access concise, reliable, and relevant information and support in order to empower them to make the best treatment decision for their child.

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“…Parents of autistic children face challenges in locating and making sense of relevant resources (Pain, 1999) and are often uncertain about what support services are available (Mitchell & Sloper, 2002). Emotional support networks for parents of children with disabilities tend to differ from traditional family support networks (Kerr & McIntosh, 2000;Tsibidaki & Tsamparli, 2007); these parents often turn to, other parents of children with similar disabilities, along with professionals and written sources (Chenoweth & Stehlik, 2004;Davies & Hall, 2005;Mackintosh et al, 2006;Mandell & Salzer, 2007). These alternative support networks are more difficult to maintain and require additional support when both parents have jobs outside the home, limited opportunity to leave home, a child with a low-incidence disability, or live in rural areas.…”

Section: Autism and Social Isolationmentioning

confidence: 98%

Participatory design of an autism community network to enhance community participation, health, and well-being

Carroll

Burge

Robertson

et al. 2010

Proceedings of the 1st ACM International Health Informatics Symposium

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We present a socio-technical design that illustrates how a community network health intervention can mobilize human resources across social boundaries, and enhance health and wellbeing for people on both sides of the boundary. We specifically address how to reduce the barriers to social engagement experienced by autistic individuals who want more supportive life opportunities. We focus on the social milieu of an American college town, on traditional town-gown boundaries, and on possibilities for integrating social resources within this context. Our design adopts community networking to not only connect autistic persons living within an existing social milieu (university undergraduates; local autistic children and their families), but also to integrate individuals across milieus. Our key design idea is that facilitating cross-milieu interactions can initiate and sustain a virtuous cycle of being helped by helping others.

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"Contact A Family": professionals and parents in partnership

Cited by 48 publications

References 27 publications

Mother-caregiver expectations for function among survivors of childhood brain tumors

Mother-caregiver expectations for function among survivors of childhood brain tumors

Do parents of children with attention-deficit/hyperactivity disorder (ADHD) receive adequate information about the disorder and its treatments? A qualitative investigation

Participatory design of an autism community network to enhance community participation, health, and well-being

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