Parent Perspectives on Early Intervention: The Paradox of Needs and Rights

Carlhed, Carina; Björck‐Åkesson, Eva; Granlund, Mats

doi:10.1179/096979503799104075

Cited by 20 publications

(16 citation statements)

References 4 publications

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“…The extant literature has primarily explored parents' perspectives on their experience having a child with ASD in their family (eg, Woodgate, Ateah, & Secco, 2008), the process of obtaining a diagnosis for their child (eg, Keenan, Dillenburger, Doherty, Byme, & Gallagher, 2010), and their belief systems (eg, King et al, 2005). Although some literature has examined parents' general experience with service provision (eg, Carlhed, Bjorck-Akesson, & Granlund, 2003), or issues around the role of parents in their child's education (eg, Stoner & Angell, 2006), to our knowledge, very limited literature has qualitatively explored parents' experience in parentmediated intervention programs, where parents are being asked to learn intervention strategies and implement them with their child during their daily routines. In terms of parents' perceptions of their role in their child's education, Solish and Perry (2008) used a questionnaire to determine how parents felt about their involvement in their child's early intensive behavioral interventions services.…”

Section: Parent Perspectivesmentioning

confidence: 99%

The Experience of Parents of Toddlers Diagnosed With Autism Spectrum Disorder in the More Than Words Parent Education Program

Patterson

Smith

2011

Infants &Amp; Young Children

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A variety of parent-mediated communication intervention programs are available to families of young children with autism spectrum disorder including Hanen's More Than Words (MTW). Although the program is widely used, researchers understand little about parents' grasp of the information presented. Through a multiple case study, the unique learning experiences of 4 families who participated in MTW were examined and 6 themes emerged. Caregivers viewed MTW as a good starting point but expressed a need for explicit child and parent program expectations and that the program be sensitive to the emotional and information needs of families of newly diagnosed children including working parents. Furthermore, suggestions regarding the delivery of the program including a desire for more individualized one-on-one modeling and parent-to-parent contact to navigate the overwhelming content also emerged.

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Section: Parent Perspectivesmentioning

confidence: 99%

The Experience of Parents of Toddlers Diagnosed With Autism Spectrum Disorder in the More Than Words Parent Education Program

Patterson

Smith

2011

Infants &Amp; Young Children

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“…When collaborating with patients or clients and their families, it is important to focus on the reciprocal interactions between health/sickness and the family as a unit, and to be aware of the family's influence on the relative who is ill or disabled, and also of how the relative and the illness itself influence the family system and family functioning (Kirkevold & Strømsnes Ekern, 2002). In general, it seems that families and carers who are active in the collaborative process not only tend to receive more support (Carlhed, Björck-Åkesson, & Granlund, 2003) but are also more critical of the services received. However, this review aims at analyzing research studies that focus on the positive aspects of family functioning, not on the effects of intervention on the person with a disability.…”

Section: Introductionmentioning

confidence: 99%

Literature Review of Positive Functioning in Families With Children With a Disability

Ylvén

Björck‐Åkesson

Granlund

2006

Policy Practice Intel Disabi

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Research about families in stressful circumstances has a perspective that emphasizes health, positive functioning, and quality of life. The resiliency model of family stress, adjustment, and adaptation explains why some families have better life outcomes than others. In this model, the concepts problem solving, sense of coherence, coping, and adaptation play a prominent part. The main purpose of this literature review is to explore how these concepts are defined and applied in research on the family level rather than solely on the mothers’ perceptions of family functioning. Another aim is to identify intervention methods based on problem solving, family sense of coherence (FSOC), positive coping, and positive adaptation in families. A review of research published between 1985 and 2004 concerning families of children in need of special support and family caregivers of relatives with chronic illness was implemented. Only 30 research articles met the inclusion criteria. The conclusion is that problem solving, FSOC, positive coping, and positive adaptation have their conceptual roots in different theories but have similar types of components in the constructs. They are often measured with instruments with single individuals as representatives for the family rather than at the family level. Important factors for an effective intervention seem to be individualization, supporting flexibility in coping strategies, and matching of strategies between partners within families.

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“…Parents often apply for resources that they believe will solve their problem(s) rather than describing the problem(s) at hand (Carlhed, Björck-Åkesson, and Granlund 2003). Needs represent the resources and tools needed to solve a problem.…”

Section: Introductionmentioning

confidence: 99%

Perceived needs among parents of children with a mild intellectual disability in Sweden

Huus

Olsson

Andersson

et al. 2016

Scandinavian Journal of Disability Research

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Perceived needs among parents of children with a mild intellectual disability in Sweden. Research, https://doi.org/10. 1080/15017419.2016.1167773 Access to the published version may require subscription. Parents of children with a mild intellectual disability experience more distress and require more support than other parents. The aim was to investigate the perceived family needs of parents of children with an MID and to investigate the relationship between parents' perceived selfefficacy in their parental role and in collaborating with professionals as well as with their perceived needs for support. Interviews were based on questionnaires to the parents of 38 children. The results revealed that parents perceived need for information, respite, and venues in which to meet other parents in similar situations. The informational needs were related to parental self-efficacy and obtaining support. A lower need for information was related to higher perceived control over services. In conclusion, it appears that professionals need to work to strengthen parents' ability to ask for support and to express the needs. Wellinformed parents will develop stronger parental self-efficacy and perceived control over services. Scandinavian Journal of Disability ARTICLE HISTORY

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Parent Perspectives on Early Intervention: The Paradox of Needs and Rights

Cited by 20 publications

References 4 publications

The Experience of Parents of Toddlers Diagnosed With Autism Spectrum Disorder in the More Than Words Parent Education Program

The Experience of Parents of Toddlers Diagnosed With Autism Spectrum Disorder in the More Than Words Parent Education Program

Literature Review of Positive Functioning in Families With Children With a Disability

Perceived needs among parents of children with a mild intellectual disability in Sweden

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