An exploration of the UK carer world

Internet Parent Support Groups 

for primary caregivers of a child with Special Health Care Needs.(Continuing Education Series)

Pediatric Nursing  September 1, 2004 | Baum, Lynda S.

CSHCN =  Children with Special Health Care Needs


Biomedical and technological advances have not only prolonged the life expectancy of children with previously terminal conditions, but the political and economic milieu has shifted the responsibility of caring for these children from hospital to home. Consensus among investigators using both quantitative and qualitative methods is that the impact on families caring for a child with chronic illness at home is both profound and prolonged, increasing the need for social support (Baumgardner & Burtea, 1998; Gravelle, 1997; Hayes, 1997; Newacheck & Halfon, 1998). A major deterrent in obtaining social support for primary caregivers of a Child with Special Health Care Needs (CSHCN) is the inability to find alternative caregivers (Bouchard, 1998). Computer mediated social support may be a viable option, but research is limited and focuses primarily on adult patient populations. This report summarizes a study that explored use of Internet Parent Support Groups (IPSGs) from the perspective of primary caregivers of a CSHCN.

Because participation in an IPSG is theorized to be part of the psychosocial adaptation of parents caring for a CSHCN at home, the Transactional Model of Stress, Coping and Adaptation (Lazarus & Folkman, 1984) was selected as a guide for formulating research questions. Figure 1 is an attempt to incorporate several linear models published by Lazarus, as well as his latest writings, which consider dynamic systems and complexity theories. Intrapersonal relationships are placed in circular rather than linear fashion to better portray the natural dynamic. The 2-way circular and time arrows are meant to depict the transactional, iterative, synergistic nature of individual adaptive responses over time. Table 1 is a summary of major concept labels and theoretical definitions.


Literature Review

A myriad of traditional self-help face-to-face support groups exist for parents. Groups cater to single parents, adoptive parents, abusive parents, parents of CSHCN, etc., but no research-based precedent for their efficacy was found. Preliminary evidence suggests that support groups in general may promote emotional recovery from life crises, but methodological limitations make results tentative. Over the last 20 years, over 1000 national and international support groups have become available through the Internet (White & Madara, 2000), but research on them is only beginning to be reported. The following review includes the only four studies that were found on Internet support groups involving parents of a CSHCN.

Han and Belcher (2001) used an online survey to explore aspects of computer-mediated support group use by 73 parents of children with cancer using three online self-help groups. They found computer group use was more common among persons with higher socioeconomic status. Perceived benefits included getting information, sharing experiences, receiving general support, venting, gaining accessibility, and using writings. Perceived disadvantages were off-topic chatter, negative emotions, large volume of email, and lack of physical contact and proximity.

Wright (1999) did a correlation study using an online survey of 148 participants in 24 computer mediated support groups (three with parenting issues) to identify social support, perceived stress, and coping. Those using coping strategies of "thought about problem, gathered information about it, and actually did something to solve it" and "sought emotional support from others" had higher online support network satisfaction scores (M=5.3 and M=5.7, respectively) than face-to-face support network satisfaction scores (M=4.7 & 3.8, respectively).

Fernsler and Manchester (1997) surveyed 54 users of CompuServe Information Service's Cancer Forum, 7.4% of whom were parents of children with cancer. Primary reasons for seeking online support were similar experiences, information, emotional support, and encouragement of others. Most helpful topics included treatment and effects on the family. The primary constraints on participation were cost and time. Over 7% began participating before there was even a diagnosis of cancer, 48.1% began within 4 months after diagnosis, and 26% began more than 4 months after diagnosis.

Tetzlaff (1997) explored informatic requirements of 120 parents of children with cancer using a video based, non-interactive computer mediated support system. Concerns included details of managing day-to-day, conceptual information about disease and treatment, and management of psychosocial problems. Information was sought to solve problems and provide emotional support, but interest could create a conflict when material was threatening. Consumers were positive toward online solutions.

All four studies were descriptive, which is typical of preliminary research, but only one included correlations or any mention of a conceptual framework. Three of the four studies were restricted to children with cancer. No report indicated when it was best to begin participating in an IPSG and the one study on satisfaction did not correlate it with types of online social support. Very little is known about what relates to well-being and no research was found on how to maintain or improve quality of IPSGs. In summary, since use of IPSGs appears to be increasing, more descriptive information is needed to educate nurses about when, why, and how online support groups may be appropriate.

Questions included the following:

1. How do primary caregivers of a CSHCN rate and describe their reasons for participating in an IPSG in terms of problem-focused and emotion-focused coping, and how does coping relate to support received?

2. How do primary caregivers rate their overall satisfaction with IPSGs, and how does satisfaction relate to support received?

3. How do primary caregivers of a CSHCN rank emotional support of IPSGs compared to other sources (family, other parents of CSHCN, nurses, clergy, religion, therapist, and face-to-face support groups), and what are primary correlates of emotional support?

4. How are reappraisal, emotion, somatic health, physical functioning, family relationships, and IPSG social support interrelated, and what factors are described as having the most long-lasting effect on subjective well being?

5. What is the optimum time to begin participating in an IPSG according to primary caregivers of a CSHCN, and are there significant differences between groups who recommend different times with respect to sociodemographics and coping strategies?

6. What are characteristics of recommended and nonrecommended IPSGs according to primary caregivers of a CSHCN, and what suggestions do they have for making 1PSGs more efficient and effective?


Design and setting. An exploratory, retrospective self-report design was employed using an Internet survey method. Using HTML 3.2, a Web page was constructed on an IBM compatible computer where visitors obtained detailed information about the study. …



CSHCN =  Children with Special Health Care Needs example

National trends in the mental health care of children, adolescents, and adults by office-based 

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