Internet Parent Support Groups for Primary Caregivers of a Child With Special Health Care Needs
Little is known about the efficacy of Internet Parent Support Groups (IPSGs). This exploratory study describes factors related to use of Internet Parent Support Groups (IPSGs) by primary caregivers of Children with Special Health Care Needs (CSHCN). An Internet survey was administered to 114 participants using stress and coping theory as a guide for measuring perceived satisfaction, Stressors, social support, personal characteristics, appraisal, positive and negative emotion, coping, timing, somatic health, physical functioning, family relationships, and well-being. The majority of participants not only obtained what they sought, but found more than expected in terms of insight and people to trust. The strongest outcome factor related to satisfaction was improved caregiver-CSHCN relationship, and nearly 90% of the sample suggested participating in an IPSG as soon as possible. Nurses may want to consider IPSGs as an adjunct for social support in this population.
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 & Halfen, 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.
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.
Man 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 race-to-face support network satisfaction scores (M=4.7 & 3.8, respectively).
Figure 1. Incorporating Several Linear Models Published by Lazarus
Table 1. Concept Definitions of the Transactional Model of Stress and Coping
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 IPSQ 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 IPSQs. In summary, since use of IPSQs 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 IPSQ 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 IPSQs 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 IPSGs 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. A direct link to the electronic survey was provided at the study Web site once a person consented to participate. The electronic survey was housed on a server administered by Surveypro.com, a public “do-it- yourself” survey service.
Sample. Power analysis for correlations with a moderate effect size required a minimum sample size of 85 (α = .05, β = .80). Qualifying criteria were contained in the first three questions and were designed to include a broad cross section of primary caregivers with a CSHCN at home who essentially manipulated their own independent variable by seeking social support through IPSGs. Only primary caregivers with a CSHCN at home who had participated in an IPSG were included in the study and English was the only language used to communicate with participants.
A sample of 114 primary caregivers, caring for 140 CSHCN, using over 100 different Internet parent support groups completed the Internet survey. The typical caregiver was a White, married, well- educated female in her late 30s from the United States. Most caregivers were Christian, living in towns or cities, making over $50,000/year, with 3-5 years’ experience caring for a CSHCN at home. The average number of people living at homewas four, with an average of two of those having disabilities. One quarter of the sample, some of whom were single women, dedicated their lives to caring for more than one CSHCN. A number of caregivers also cared for disabled adults in their homes or were disabled themselves. Of the CSHCN, 93 (66%) were male, and 47 (34%) were female. Overall, males were younger (males M=6.5 years; females M=8.7 years). Participants preferring not to answer did not affect validity of results. The number of participants who chose to withhold information about their religious preference (
Instrument. The Internet Survey was originally composed by the author (Baum, 2002) and administered via the Internet from. February through May of 2001. Out of a total of 75 questions, there were approximately 18 open ended questions, 41 questions using a Likert- type rating scale, 15 multiple-choice, and one ranking question. A personal dispositional coping style, optimism, was selected because of its known moderating effect on coping and was measured by the 10- item Life Orientation Test-Revised (LOT-R) (Scheier, Carver, & Bridges, 1994). Another personal characteristic, generalization, has been shown to predict depressive symptoms and was measured by the 4- item Attitudes Toward Self Test (ATS) (Carver, 1998). Five 2-item subscales of the Brief COPE were used to assess active coping, planning, positive reframing, and acceptance; all of which had previously published validity & reliability (Carver, Scheier, & Weintraub, 1989). see Table 2 for alpha reliabilities of these measures in this study.
Because “problem-focused coping” (see Figure 1) is defined as an attempt to alter the source of stress (see Table 1), questions having to do with finding usable ideas, decision support, people to trust, or greater insight were categorized as problem-focused coping and support (see Table 3). In contrast, “emotion-focused coping” is an attempt to reduce or manage the emotional response to perceived stress, as opposed to trying to change the stressor itself. Questions that related to validating or relieving negative feelings were therefore categorized as emotionfocused coping. seeking opportunities to help others was categorized as emotion-focused coping because it did not fit the definition of problem-focused coping and is usually associated with relief of negative feelings. One question had to do with reappraisal (change of view, Table 4) and nine questions focused on major categories of positive and negative feeling (see Table 5).
Table 2. Generalization, Optimism, and Coping Scores of Primary Caregivers
Table 3. Relationship Between Social Support Sought and Received from IPSGs
Table 4. Spearman Rho Correlations of Trust, Emotional Support, and Change of View as they Relate to Increased Positive Emotion
Formal pre-testing of the survey instrument included both “alpha” and “beta” tests. An alpha test involves assessing the survey for readability, clarity, logical flow, and length of time to complete it. Several people with varying levels of education were asked for feedback on the questionnaire, including five PhD prepared faculty members who provided judgment as to whether the survey instrument measured relevant constructs. Total time for completing the electronic survey was 35- 45 minutes.
A beta test is somewhat like a pilot test in which actual caregivers of a CSHCN are asked to give feedback about what it is like to complete the various versions of the survey. Adding a question at the end, “Is there anything else you would like to say” and a “comments” link on the Web page encouraged caregiver feedback throughout the survey. The beta test was run during January 2001 with four primary caregivers of a CSHCN (two mothers and two fathers) and eight adults with various browsers and Internet service providers (ISPs). Their feedback was very helpful in refining survey content, clarifying instructions, and improving the administration.
Table 5. Feelings Resulting from Participation in an IPSG
Table 6. Average rankings by parents of a CSHCN for various types of social support (N=113)
General limitations of Internet surveys include selection bias, possible electronic tampering with survey or data, and anonymity, which makes it more difficult to assure that a participant meets the inclusion criteria. (see Baum, 2002 for full explanation of these limitations and what was done to minimize them.)
Procedure. After approval of the project by the Institutional Review Board, a combined “push” and “pull” strategy was employed to obtain a purposeful nonprobability sample of information- rich cases. The push strategy entailed sending a study invitation directly to 30 caregivers who voluntarily offered their e-mail addresses to readers of seven issues of “The Matchmaker,” a newsletter distributed by Mothers united for Moral Support (MUMS). MUMS is an international online matching service for parents of a CSHCN. The pull strategy involved posting an invitation on one Web site and four listservs to which the targeted sample could then respond. The Web site was MUMS (email@example.com), where a hypertext link directly to the study Web site was placed. The four mailing lists (listservs) were firstname.lastname@example.org, email@example.com, ckmkstart_HIt409 56705shcn- firstname.lastname@example.org, and Cystic-L@home.ease.lsoft.com. A $200 contribution on behalf of all those who participated in the survey was made to MCJMS for their additional support.
Quantitative data extracted from the database were aggregated using SPSS version 10.0, and qualitative data were reduced into categories using QRS NUD*IST 4 software. Because most data was nonparametric, Spearman’s rho was used to explore relationships, Chi- square and Kruskall-Wallis Tests were used to test differences between groups, and the Mann-Whitney U Wilcoxon Test was used to detect where the differences were. The only research question producing extensive qualitative data was one asking participants to describe three things about IPSGs that had the most long-lasting effect on their sense of well-being. Published therapeutic factors of psychotherapy groups were used as a guideline for assigning codes. A colleague with a background similar to the author and who had no knowledge of results, was asked to code answers to the question on well-being, after a brief explanation of coding parameters. Inter-rater reliability was .95.
Due to limited space and to reduce complexity, selected answers to research questions will be reported and discussed under major headings of the theoretical model. (see Baum, 2002 for full report of results organized under research questions.)
Stressors and social support. One hundred ten (79%) children had mild to moderate disability, and 54 (39%) children required some form of technology to maintain life or health. The two top diagnostic categories of the children were rare disorders (28%) and psychiatric disorders (28%); the latter being also the most prevalent comorbid condition. Only 18% of the families with insurance qualified for home nursing. Of the 10 families reporting 100 or more trips to clinics in the last year, only the highest user (227 visits) received any home care nursing, and that was limited to 4 hrs/week. Sixty-one families (54%) had one to eight hospitalizations in the last 12 months. Forty-one families (37%) carried more than one kind of insurance, 13 families had only Medicaid or Medicare, and 6 had no insurance at all.
The highest-ranking source of emotional support in this sample was family (52%), especially spouses, and 10 participants ranked both family and IPSGs #1. On the other hand, the number of those ranking family as zero emotional support (8%) was almost three times as many as those who ranked IPSGs as zero support (3%). Surprisingly, nurses and clergy were considered the least supportive (Table 6). Qualitative data revealed some of the possible reasons: “People have no idea how hard it is parenting a child with a chronic illness unless they have done it!”"Most professionals are not going to tell you the down and dirty truth you are going to get from other parents who live this every day. Probably because they could never imagine what it is like;”"Many times from the nurses/therapists/ doctors 1 get an answer that there is only one right way.” On the other hand, “Our list is run by an RN who has had this disease for years and really puts her heart and soul into it in a professional manner.”
Overall satisfaction with IPSGs was high (93%). The three strongest factors associated with satisfaction were (a) getting usable ideas (rho=.42, p
Optimism and generalization. Optimism scores (M=20.7) in this sample were considerably higher tha\n published norms for college students (M=14.3) or bypass patients (M=15.2) (see Scheier et al., 1994), and tendency to generalize (M=9.5) was lower than published norms for either men (M=IO.25) or women (M=Il.52) (see Carver, 1998). Although the overall sample scored lower on generalization, the 30% taking psychotropic medication for depression and anxiety scored higher than norms (M= 12.2). Results of Mann-Whitney CI tests indicated that caregivers who scored high on pessimism (part of the optimism scale) also scored significantly higher on generalization (z = -3.09, 1-tailed p=.001) and loss of sleep (z = -2.20, 1-tailed p=.01) than their optimistic counterparts.
Coping. As shown in Table 3, both problem-focused and emotion- focused coping were significantly and substantially related to obtaining what was sought (p
Participants scored relatively high on a wide variety of positive coping styles, as measured by the Brief COPE (Table 2); including acceptance, active coping, planning, positive reframing, and religious coping. Of the 114 participants, 19 people did not use religious coping at all, which was essentially equal to the number of people who said they had no religion. At least 26% used alcohol, tobacco, and recreational drugs to feel better and several mentioned using “a lot” of caffeine drinks during stressful times.
Reappraisal. One survey question had to do directly with reappraisal: “1 changed my viewpoint about something.” Sixty-four percent agreed that their viewpoint changed, 11% disagreed, and 25% were neutral. Qualitative data revealed some of the ways in which people changed their view as a result of IPSG participation. One lost her “rose colored glasses.” Others adjusted their general outlook on life, came to terms “with what will happen,” increased their confidence in giving advice or “proper care” for their child, and trusted their intuition more. One mother summed it up by saying, the “wealth of ideas and information shared has changed our lives.” Changing one’s view was strongly correlated with two long term outcomes: (a) improved relationships with CSHCN (rho=.38, p
Emotion. Survey questions addressed five positive and three negative feelings that could be generated by IPSQ participation (see Table 5). Typically, participants felt better as a result of participating in an IPSQ, especially more hopeful (87%) and relieved (83%), which according to qualitative data, was often related to new information regarding diagnoses and treatment, hearing “success stories,” and seeing others with more difficult situations (“I am blessed.”) Other important emotions from the qualitative data were increased compassion, confidence and patience, and decrease of guilt. Correlations among the emotion factors revealed that laughter was more associated with relief (rho=.43, p
Time. Nearly 90% of primary caregivers of a CSHCN recommended entering an IPSQ as soon as possible, within 1-3 months. One mother said she wished she had started IPSQ participation sooner because it “it would have helped with the guilt.” Another said 1-3 months “doesn’t let enough time slide so that helplessness or hopelessness slips in.” Some recommended starting even before the CSHCN was born. Factors associated with delaying participation longer than 3 months were technology dependent children and readiness of the caregiver to accept the situation, although IPSQs may facilitate acceptance of reality. One father commented that an IPSG was “a very rewarding private way of accepting the future.”
Outcomes. Only 15% of the sample agreed that IPSQ participation improved habits affecting somatic health. By contrast, 73% of the sample agreed that IPSQ participation increased efficient effective functioning, which was significantly related to all positive feelings (rho=.35 to.45, p
Outcomes that were perceived to have the most long-lasting effect on well-being were (a) finding people with similar challenges (79%), (b) receiving guidance and information (59%), (c) feeling understood and accepted (50%), (d) worldwide relatively anonymous access to information and support (24%), (e) the opportunity to help others (22%), (f) change in perspective that instilled hope and gratitude (20%), and (g) opportunity to vent (10%).
Stressors and social support. Part of the purpose of gathering sociodemographic data was to describe demands and resources that have known moderating effects on adaptation and compare results from this sample with other research. Level of CSHCN impairment and female child gender has been found to predict parental distress (Canning, Harris, & Kelleher, 1996). All children in this sample had some kind of disability with even more impairment than was required by study criteria, and the only factor that may not have contributed to distress was that the typical CSHCN in this sample was male. Consistent with other research, health care utilization was enormous in this sample, and was inversely related to whether families qualified for home care nursing. It could also be related to having more than one disability per household. Administrators of managed care may want to rethink the cost/benefit of providing more home care nursing to high utilization families.
Greater control of the amount and type of social support as a motivator for participating in an IPSG was a unique, unanticipated finding, especially since increased sense of control has been found to be an important factor in psychological adaptation and quality of life in this population (Lubkin, 1998). One aspect of control provided by IPSGs is the advantage of bypassing usual norms that are found in face-to-face groups. Listening politely, for example, is not necessary in IPSGs. For people stranded in their homes with children requiring complex care, IPSGs were a “link to the outside world.” unlike one study that found lack of physical contact and proximity a disadvantage of online relationships (Han & Belcher, 2001), it seemed to be of little consequence in this sample. Some arranged to meet the friends they had made online, and others preferred the anonymity.
Optimism and generalization. Optimism has been shown to predict more adaptive types of coping than pessimism, such as acceptance, positive reframing, and humor (Scheier, Carver, & Bridges, 1994). Participants in this study were high in all three of those coping strategies (see Tables 2 & 5). If seeking online social support were perceived as an adaptive coping strategy, then it would attract optimistic people. Because optimism scores were unusually high in this sample, it could skew some results such as global evaluations, but it would not be expected to keep people from being forthright about actual events and processes such as reasons for participating or factors that had an impact on well-being.
If the percentage of people taking psychotropic medication is a valid indicator, the incidence of anxiety and depression was 10% higher in this sample than the best estimate 1-year prevalence of mental health dysfunction for the general population (U.S. Department of Health and Human Services,1999). This finding is consistent with other literature, which documents high levels of depression in families adapting to a CSHCN with disabilities (Lubkin, 1998), particularly if they generalize and tend to be pessimistic.
Coping, unlike other Internet samples, which are primarily male, age 20-30, the average participant in this sample was female and almost 40 years old. This is not surprising since most caregivers of a CSHCN at home are mothers. What is interesting is that the mothers were apparently willing to learn how to use a computer in order to obtain more social support. One mother commented, “…to think 3 years ago I was afraid to get online, now I’m a whiz thanks to my child’s needs.” High Brief COPE scores along with qualitative data in this sample indicated primary caregivers were not only acc\epting of their challenges, but preferred planning ahead and becoming actively involved in doing as much as possible for their children.
A surprising result of this study was that seeking an opportunity to help others was a stronger, more frequent motivator for participating in an IPSQ than any other emotion-focused coping strategy (see Table 3). This is consistent with others who observe how online “helper therapy” taps into a “deep altruistic impulse” people do not realize they have (White & Madara, 2000) that can be even more beneficial than receiving help for oneself.
Re/appraisal. Both quantitative and qualitative data suggested that IPSG participation serendipitously shifted paradigms. More information and insight can often change a person’s perspective so that situations previously perceived as painful become more tolerable, as implied by the fact that change in view was significantly related to relief and gratitude (see Table 4).
Emotion. The fact that IPSGs generated positive emotion in this sample (see Table 5) is an important finding. Since prolonged negative emotions and avolition are criteria for anxiety and mood disorders, IPSG participation may reduce anxiety and depression through laughter and increased motivation. Since laughter was strongly and significantly associated with relief and peace, it implies that, in some cases, IPSG participation may help restore emotional balance or stability. On the other hand, the one-fifth of the sample who were more sad and angry after IPSG participation is important if the ethic is “Do no harm,” but often anger was a result of increased awareness of social inequities, which parents said was an impetus for advocating more effectively for their CSHCN. An important finding in this study is that neither changing one’s view nor receiving emotional support had nearly as strong a relationship with positive emotion overall as finding trustworthy people. Evidently, finding people to trust was not only a pleasant, relatively unexpected outcome related to satisfaction, but it was also powerfully related to feeling better (see Table 4).
Time. Participating in an IPSG “as soon as possible” perhaps even as part of prenatal planning or in conjunction with genetic counseling is new and important information for nurses. Families whose children require technology, or who are having trouble accepting their situation, may need more time to adjust before participating in an IPSQ, but could be offered the information about online resources to be used later.
Outcomes. Although the majority of people did not agree that IPSQ participation improved their health habits, they did agree that they laughed and relaxed more (Tables 3 & 5), which certainly has implications for health. Improved functioning attributed to IPSG participation is particularly exciting, especially from the standpoint of health promotion. Notably, most participants did not agree that IPSQ participation interfered with sleep or family relationships.
A striking outcome of IPSQ participation in this sample was improved caregiver-CSHCN relationship. This is consistent with another study that found family-led self-help groups improved relationships with ill family members more than professional-led groups (Pickett, Heller, & Cook, 1998). This is important because mothers tend to experience greater distress when their chronically ill child does not respond positively to caregiving efforts (Holaday, Turner, Kanematsu, Krulik, & Wang, 1997), and if an IPSG can help mothers understand and deal with children who are fussy and irritable much of the time, or change their interpretation of the child’s behavior, it would be well worth participating.
Frequency data does not necessarily reflect what is most valued in terms of producing well-being. For example, seeking opportunity to help others through IPSG participation was the second most frequently used coping strategy (see Table 3), but only fifth in its perceived ability to produce a long-lasting effect on well-being. This is consistent with other research that found altruism to be unrelated to perceived helpfulness of the group.
Implications for Further Research
The role of high quality IPSGs in prevention, diagnosis, and treatment of psychosocial problems related to caring for a CSHCN is only beginning to be recognized and developed. It may also be productive to focus on what would be considered maladaptive coping online. The connection between neglecting the family due to IPSG participation and having a child with a rare disorder warrants further investigation. Other avenues of research suggested by this study include the need for developing new ways of defining and measuring spirituality and humor as coping strategies. A major contribution of this study is the preliminary evidence that trust and altruism play a major role in the relatively unexplored mechanism that links social support to well-being, and finally, the fact that altruism as a major coping strategy was not a part of the Brief COPE instrument, suggests that measurement of the concept needs to be developed.
Implications for Practice
Historically, nurses have taken the role of patient care advocate and are in a position to plan and coordinate greater continuity of care, particularly for parents of a CSHCN who have limited alternative caregivers. The strong recommendation of this sample to begin participating in an IPSQ “as soon as possible” is something nurses need to make part of their repertoire of resources for prenatal and discharge planning and may even be helpful in conjunction with genetic counseling. It is also important for clinicians to be aware of when it might be preferable to delay participation in an IPSG. Families whose children require technology, or who are having trouble accepting their situation, may need more time to adjust. One respondent suggested that family members could educate themselves about how to be more supportive to parents by browsing on an IPSQ, which has implications for nurses as well.
Many participants talked of “empowerment” gained from IPSG participation, which is also the theme of large governmental initiatives developed for families with CSHCN. It may be an important policy consideration to make the Internet more accessible to those of lower socioeconomic status. When evaluating public and private insurance programs, single parents of a CSHCN and people caring for more than one person with disabilities may need greater community support.
Although there seem to be many advantages to online support groups, it would be unwise to assume that no harm could come from them. Potential dangers include misinformation, expression of intense feelings that could overwhelm those struggling with pain and fear, different needs related to different stages of adaptation, untrained people who may offer therapy or untested products, and occasional pressure to adopt excessive or distorted group beliefs. Specialists in pediatric chronicity, rare disorders, or psychiatric mental health nursing are much needed and valued as IPSQ consultants or moderators. In summary, although participants said IPSGs were “here to stay” and often “fill a unique void,” there is much to be done both to educate people about IPSGs and to develop ways to promote and evaluate IPSG quality.
Baum, L. (2002). Factors related to use of Internet parent support groups by primary caregivers of a child with special health care needs (Doctoral dissertation, University of Utah, 2002). Dissertation Abstracts International, DAI-B 63/02, 734, Publication #AAT 3041616.
Baumgardner, D.J., & Burtea, E.D. (1998). Quality-of-life in technology-dependent children receiving home care, and their families-a qualitative study. Wisconsin Medical Journal, 97(8), 51- 55.
Bouchard, K. (1998). Issues in case management: Respite care…”hot issues in case management.” Pediatric Nursing, 24(3), 260.
Canning, R.D., Harris, E.S., & Kelleher, K.J. (1996). Factors predicting distress among caregivers to children with chronic medical conditions. Journal of Pediatric Psychology, 27(5), 735- 749.
Carver, C. S. (1998). Generalization, adverse events, and development of depressive symptoms. Journal of Personality, 66(4), 607-619.
Carver, C.S., Scheier, M.F, & Weintraub, J.K. (1989). Assessing coping strategies: A theoretically based approach. Journal of Personality and Social Psychology, 56(2), 267-283.
Fernsler, J.I., & Manchester, LJ. (1997). Evaluation of a computer-based cancer support network. Cancer Practice, 5(1), 46- 51.
Gravelle, A.M. (1997). Caring for a child with a progressive illness during the complex chronic phase: Parents’ experience of facing adversity. Journal of Advanced Nursing, 25(4), 738-745.
Man, H.R., & Belcher, A.E. (2001). Computer-mediated support group use among parents of children with cancer-an exploratory study. Computers in Nursing, 79(1), 27-33.
Hayes, V.E. (1997). Families and children’s chronic conditions: Knowledge development and methodological considerations. Scholarly Inquiry for Nursing Practice, 77(4), 259-98.
Holaday, B., Turner H.A., Kanematsu, Y, Krulik, T., & Wang, R. (1997). Stress in mothers of chronically ill children: A cross cultural study. Australian Paediatric Nurse, 6(1), 2-9.
Lazarus, R.S., & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer.
Lubkin, I.M. (1998). Chronic illness: Impact and interventions (2nd ed.). Boston: Jones & Bartlett.
Newacheck, P.W., & Halfen, N. (1998). Prevalence and impact of disabling chronic conditions in childhood. American Journal of Public Health, 88(U), 610-617.
Pickett, S.A., Heller, T., & Cook, J.A. (1998). Professional-led versus family-led support groups: Exploring the differences. Journal of Behavioral Health Services & Research, 24(4), 437-452.
Scheier, M.F., Carver, C.S., & Bridges, M.W. (1994). Distinguishing optimism from neuroticism (and trait anxiety, self- mastery, and selfesteem): A reevalu\ation of the Life Orientation Test. Journal of Personality and Social Psychology, 67(6), 1063- 1078.
Tetzlaff, L. (1997). Consumer informatics in chronic illness. Journal of the American Medical Informatics Association, 4(4), 285- 300.
U.S. Department of Health and Human Services (1999). Mental health: A report of the surgeon general. Rockville, MD: U. S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, National Institutes of Health, National Institute of Mental Health.
White, BJ., & Madara, EJ. (2000). Online mutual support groups: Identifying and tapping new I & R resources. Information & Referral: The Journal of the Alliance of Information and Referral Systems, 22, 63-82.
Wright, K.B. (1999). Computer-mediated support groups: An examination of relationships among social support, perceived stress, and coping strategies. Communication Quarterly, 47(4), 402-414.
Lynda S. Baum, PhD, APRN-BC Adult Pysch/Mental Health, is a clinician at VA Medical Center in Salt Lake City; Highland Ridge Hospital in Murray, ClT; and Copper Hills Youth Center in West Jordan, UT.
Note: Research partially funded by Gamma Rho chapter of Sigma Theta Tau.
Copyright Anthony J. Jannetti, Inc. Sep/Oct 2004