The training & support programme for parents of children with ataxia: A pilot study

Abstract

The aim of the study was to evaluate the impact of the Training and Support Programme among parents of children with ataxia. A total of 39 parents expressed an interest in the TSP, 27 (mean age 41; range 25-58) returned baseline questionnaires and completed the study. Twenty-four children (mean age 12.5 years, SD=12.4) received the TSP. Data were collected by self-administered questionnaires mailed to parents immediately before attending the TSP and at 4-month follow-up. Interviews were conducted with 10 parents immediately following TSP completion. Comparisons over time revealed significant decreases in parental anxious mood (p=.011), depressed mood (p=.046) and perceived stress (p=.020) and significant improvements in generalized self-efficacy (p=.010), satisfaction with life (p=.045) and parental health status (p=.020). Parents reported improvements in children's mobility, "jumping legs", sleep patterns, energy and activity levels, relaxation, and happiness (e.g., more smiles). Parents felt closer to their children and one parent had become "more accepting" of their child's ataxia. Results indicate that the TSP may enhance the psychosocial well-being of parents of children with ataxia although a randomized controlled trial would be necessary to determine whether the changes reported here are in fact due to attending the TSP.

The stability and causal effects of task‐specific and generalized self‐efficacy in college1

“…Although generalized self‐efficacy affected care‐work self‐efficacy, care‐work self‐efficacy did not affect generalized self‐efficacy. This result does not lend empirical support to previous studies which have reported that specific therapeutic programs improved generalized self‐efficacy (Barlow et al., 2007; Kelley et al., 1997; Kennedy et al., 2006; Smith, 1989). Mere ego‐engaged experience may not affect generalized self‐efficacy without involvement in a therapeutic program.…”

“…In contrast, the task‐specific self‐efficacy at Time 1 for sport, music, create, and companionship also affected the generalized self‐efficacy at Time 2. This result lends empirical support to previous studies in which specific therapeutic programs improved generalized self‐efficacy (Barlow et al., 2007; Kelley et al., 1997; Kennedy et al., 2006; Smith, 1989). However, these previous studies did not examine reciprocal causal relationships of task‐specific self‐efficacy and generalized self‐efficacy using panel data analysis.…”

“…People with spinal cord injuries who participated in a psychosocial activity course significantly increased in generalized self‐efficacy from the start to the end of the course (Kennedy, Taylor, & Hindson, 2006). Training and support program for parents of children with ataxia significantly improved their generalized self‐efficacy (Barlow, Cullen‐Powell, & Williams, 2007). Thus there is evidence that generalized self‐efficacy can be significantly increased by therapeutic programs that focus on increasing task‐specific self‐efficacy.…”

Motor Function Improvement in Children with Ataxia Receiving Interval Rehabilitation, Including Vibration-Assisted Hometraining: A Retrospective Study

“…Regarding children with ataxia there is a vivid appeal for specialised, evidence-based treatment [7,14]. We know that parental inclusion through home-based therapy can be effective for motor improvement, as well as for the life quality of children and their families, as reported by the parents themselves [1]. Video gamebased coordination training has also been reported as good means for ataxia improvement [8].…”

Review of studies on generalized self-efficacy and the explanatory potential of epigenetic theory

“…I think I can.を挙げ，自分が成し遂げ たいことを成し遂げることができると信じることは， 成功においてもっとも重要な要素かもしれないと述 べ，20 年以上にわたる膨大な数の自己効力感研究を 要約している。また，竹綱・鎌原・沢崎(1988)によ る 初 期 の 自 己 効 力 感 研 究 の レ ビ ュ ー，Bandura (Bandura, 1995(Bandura, 本明・野口監訳 1997Bandura, 1997 (Ehrenberg, Cox, & Koopman, 1991;Oliver & Paull, 1995 (Betz, Borgen, & Harmon, 1996)が開発された。この Skills Confidence Inventory (Betz et al, 1996) Bandura, 1997;Maddux, 2001; 坂野・前田，2002) 。あ る領域における自己効力感が上昇すると，それに似た 領 域 の 自 己 効 力 感 も 上 昇 す る (Bandura, Adams, Hardy, & Howells, 1980;Brody, Hatfield, & Spalding, 1988) ，さらには言語的課題についての自己効力感が 上昇すれば数学的課題についての自己効力感も上昇す る (Hackett, Betz, OʼHalloran, & Romac, 1990 (Jerusalem & Mittag, 1995山本訳 1997OʼRourke & Hampson, 1999 (Erikson, 1950) ，青年期にはそ の 藤が達成の期待(anticipation of achievement) ・ 仕事見習い(apprenticeship)対労働麻痺(work paralysis)として現れると述べている。Erikson は労働麻 痺について自分の全体的な能力に関する(基本的な 不信感に退行した)深刻な不適合感の論理的な帰結で ある (Erikson, 1959 (Erikson, 1950(Erikson, 仁科訳 1977 (Erikson, 1968) と定義し， 生産的な成人生活への協調的な参加にと って，恒久的な基礎となるもの (Erikson, 1968)と述べている。そして有能感がな いと人間は自分の能力に，劣等感をもち，次第に増 大していく現実の処理に，見合うだけの能力が自分の 中にないのではないかと疑うようになる (Erikson, 1964 (Erikson, 1964 (Erikson, 1968 (Barlow et al, 2007;Kelley et al, 1997;Kennedy et al, 2006;坂野，1989;Smith, 1989 …”