Evaluation of an Online Peer Support Network for ...

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Evaluation of an Online Peer Support Network for Fathers of a Child With a Brain Tumor a

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David B. Nicholas PhDRSW , Anu Chahauver MSWRSW , David b

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Brownstone MSWRSW , Ross Hetherington PhDCPsych , Ted b

McNeill PhDRSW & Eric Bouffet MD

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Faculty of Social Work, University of Calgary, Calgary, Canada

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The Hospital for Sick Children, Edmonton, Alberta, Canada

Available online: 23 Mar 2012

To cite this article: David B. Nicholas PhDRSW, Anu Chahauver MSWRSW, David Brownstone MSWRSW, Ross Hetherington PhDCPsych, Ted McNeill PhDRSW & Eric Bouffet MD (2012): Evaluation of an Online Peer Support Network for Fathers of a Child With a Brain Tumor, Social Work in Health Care, 51:3, 232-245 To link to this article: http://dx.doi.org/10.1080/00981389.2011.631696

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Social Work in Health Care, 51:232–245, 2012 Copyright © Taylor & Francis Group, LLC ISSN: 0098-1389 print/1541-034X online DOI: 10.1080/00981389.2011.631696

Evaluation of an Online Peer Support Network for Fathers of a Child With a Brain Tumor DAVID B. NICHOLAS, PhD, RSW

Downloaded by [Hospital for Sick Children] at 13:23 27 March 2012

Faculty of Social Work, University of Calgary, Calgary, Canada

ANU CHAHAUVER, MSW, RSW, DAVID BROWNSTONE, MSW, RSW, ROSS HETHERINGTON, PhD, CPsych, TED MCNEILL, PhD, RSW, and ERIC BOUFFET, MD The Hospital for Sick Children, Edmonton, Alberta, Canada

This study explored impacts of an online support network for fathers of a child with a brain tumor. Evaluation comprised pre/post-intervention questionnaires, content analysis of online network postings, and post-intervention qualitative interviews. Findings suggest that this intervention was beneficial to fathers. Positive effects on paternal coping were demonstrated, as were opportunities to grapple with difficult issues related to having a child with a brain tumor. Fathers recommended a combined resource of online and face-to-support, including the development of a support network with a larger participant base. Implications for practice are examined. KEYWORDS online support, fathers, parents, pediatric brain tumor, quality of life

INTRODUCTION This project initiated and evaluated an online peer support intervention for fathers of children with a brain tumor. Study aims were to evaluate the effectiveness of the network, ascertain participant experiences and perceptions Received June 8, 2011; accepted October 10, 2011. We gratefully acknowledge research funding from B.R.A.I.N.Child. Address correspondence to Dr. David B. Nicholas, PhD, RSW, University of Calgary, Faculty of Social Work, Suite 444, 11044-82 Avenue, Edmonton, Alberta, Canada, T6G 0T2. E-mail: [email protected] 232

Online Support for Fathers of a Child With a Brain Tumor

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of participating in the network, and identify the benefits and limitations of online technology for the facilitation of peer support.


BACKGROUND The frequency of brain tumors is increasing in developed countries, with over 800 Canadian children diagnosed with a brain tumor each year (Canadian Cancer Society, 2008). This diagnosis is reported to evoke a range of challenging emotions for parents (Bayat, Erdem, & Gul Kuzucu, 2008; Jackson, Tsantefski, Goodman, Johnson, & Rosenfeld, 2003; Mulhern, Carpentieri, Shema, Stone, & Fairclough, 1993), yet no studies were found that report the impact of a brain tumor specifically on fathers. Accordingly, less is known about fathers’ experiences (Holmbeck et al., 1997; Jones & Neil-Urban, 2003; Jones, Pelletier, Decker, Barczyk, & Dungan, 2008; Nicholas, 2003). Clinical experience suggests that fathers of children with a brain tumor experience concerns relating to their child’s condition, but have limited social outlets or opportunities to discuss these issues. Many fathers convey strong commitments to their families and experience profound stress associated with their child’s condition. Identified concerns include the child’s missed milestones, expected losses, and the impact on other family members. Based on clinical experience with fathers of children with a brain tumor, it is postulated that when fathers are provided with the opportunity to communicate their thoughts, concerns and experiences, they appreciate and benefit from it. The challenge for health care professionals and support organizations is to develop accessible opportunities for fathers to share illness-related concerns and receive support. As stated in Drotar’s (1997) comprehensive review of family-based literature on adjustment to chronic and disabling conditions in children, there is a pressing need, “to develop and test psychological interventions designed to modify the specific risk and/or protective factors” (p. 160). Developing effective interventions appears to include the facilitation of mutual sharing and support. Social support is considered to be an important resource moderating the potential stress and burden associated with parental care of a child with an illness (Stewart, Ritchie, McGrath, Thompson, & Bruce, 1994). Research has demonstrated benefits of social support among different populations (e.g., Dunham et al., 1998; Foreman, Willis, & Goodenough, 2005; Jones & Neil-Urban, 2003; Nicholas, 2003; Nicholas, 2009; Nicholas et al., 2007; Nicholas, McNeill, Montgomery, Stapleford, & McClure, 2003; Nicholas et al., 2001; Nystrom & Ohrling, 2008); however, few studies have examined social support interventions for fathers of children with a brain tumor. Bragadottir (2008) found that fathers who participated in a support group perceived mutual support via, “instillation of hope, universality,


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perceived helpfulness, and group cohesion” (p. 35). Jones and Neil-Urban (2003) similarly reported benefits for fathers when given the opportunity to mutually share their experiences. They found that the “universality of (fathers’) stories represents the value of shared experience” (p. 56), despite unique individual experiences and differences. Fathers were further reported to value information and advice sharing, and providing comfort to one another (Jones & Neil-Urban, 2003). A child’s diagnosis of a brain tumor infuses additional considerations, and thus appears to warrant specialized group interventions that address these unique issues and concerns for fathers. Group work among families with a pediatric brain tumor is not wellreported in the literature. Leavitt, Lamb, and Voss (1996) demonstrated the efficacy of a brain tumor support group for patients, families, and friends. Specific supportive mechanisms in this group included, “finding a safe haven and maintaining morale” (Leavitt et al., 1996, p. 1251). Finding a safe haven consisted of sharing and validating each others’ experiences, whereas maintaining morale reflected achieving a new, acceptable “normal” for participants. This outcome involved group components such as reframing expectations, realistically facing one’s challenges, and working toward coping and hope (Leavitt et al., 1996). This group was deemed to offer social support promoting quality of life for participants. A similar perception of support groups was found by Foreman and colleagues (2005) in that, “parents perceived the group as a safe forum for psychosocial support and dialogue” (p. 16). While support groups for fathers are advocated, inherent problems facing conventional support groups are identified. Geographic distances and scheduling difficulties limit the potential accessibility and utility of groups (Bragadottir, 2008; Nicholas, 2003; Nystrom & Ohlring, 2008). As an alternative, groups offered via Internet technology potentially increase fathers’ access, hence ability to participate in a support network. Group participants are able to control when and where they can access the group, and how interactions are personally received and reciprocated. Benefits of computer technology for group facilitation include increased accessibility and convenience (Bragadottir, 2008; Nicholas, 2003; Nystrom & Ohlring, 2008). Electronic mail postings can be composed and read at the convenience of group members. Also, greater anonymity is reported resulting in online group participants being able to confront sensitive issues that might be perceived as too threatening or embarrassing to divulge in face-to-face groups (Galinsky, Schopler, & Abell, 1997; Nicholas, 2003). Addressing the potential role of computer technology, Bragadottir (2008) concludes that computer technology and the Internet provide, “opportunities for new ways of healthcare provision” (p. 36). It appears that there is, and will continue to be, a need for online networks for support purposes (Bragadottir, 2008; Nicholas, 2003; Nicholas et al., 2009a, 2009b;


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Nystrom & Ohrling, 2008), with potential relevance for fathers of a child with a brain tumor. However, benefits and limitations of this medium have received relatively little research attention. Moreover, intervention studies examining “support” are rare and in fact, no studies were found that examine online support specifically for fathers of a child with a brain tumor. To address this gap, an online support network was initiated aiming to provide peer support to this unique group of fathers.


METHODS Upon informed consent, participants were placed on an e-mail list with other group members— all comprising fathers of children (birth to 17 years) with a brain tumor. The network comprised three months of access to a closed online forum that was developed and hosted by AboutKidsHealth, the patient education group at The Hospital for Sick Children in Toronto, Canada. Participating fathers were invited to engage in the network a minimum of once per week for three months. In doing so, they were encouraged to raise salient issues, questions, and responses as desired with a general focus on their adjustment to the diagnosis of a brain tumor in the family, what this means for fatherhood, and strategies used in coping. The group was limited to a 3-month period based on findings by Weinberg et al. (1995) and Nicholas (2003) suggesting that a three month peer support group experience is sufficient to potentially demonstrate group effects. The network was semi-structured, asynchronous, and led by an experienced, Master of Social Work (MSW)–trained facilitator. The facilitator monitored and supported the group by welcoming new participants, attending to group process and participant interaction, and encouraging topics for discussion, as required. The facilitator inserted limited content through periodic comments or introducing topics for discussion to the group. However, in keeping with a mutual aid approach, the facilitator generally maintained quiescence in order to permit mutual sharing among the fathers. Participants were encouraged to initiate relevant and pressing issues, and to respond to the unfolding dialogue.

Evaluation Methods Evaluation of the network utilized a mixed method design comprising: preand post-intervention questionnaire administration; analysis of online network dialogue; and post-intervention qualitative interviews. Each method is briefly described below. 1. Pre- and post-intervention instrument administration: To examine interventional outcomes, standardized instruments were administered


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before and after the intervention. These questionnaires measured paternal coping (Coping Health Inventory for Parents [CHIP], McCubbin, McCubbin, Nevin, & Cauble, 1996), social support (Multi-Dimensional Support Scale [MDSS], Winefield, Winefield, & Tiggemann, 1992), and meaning of illness (adapted Meaning of Illness Questionnaire [MIQ], McAdams, Byrne, & Browne, 1989). 2. Analysis of network dialogue: To examine the elements and processes of the online network that fostered impact as well as substantive issues addressed in father-to-father dialogue, the complete verbatim transcript of network dialogue throughout the intervention was qualitatively reviewed using a content analysis approach. The transcript was analyzed for content including concerns and resources of fathers, and dialogical processes of the group such as conversational engagement, flow, relationship formation, alliance-building, and participation patterns. This reflected line-by-line coding, categorizing of central codes, and ultimately, theme generation (McCracken, 1988). 3. Post-intervention qualitative interviews: Following the intervention, a subsample of 14 participants, representing varying levels of network participation, were qualitatively interviewed using McCracken’s long interview approach (McCracken, 1988). Experiences of the intervention, perceived outcomes, and recommendations for future online support were explored. Similar to network transcripts, these digitally recorded and transcribed interviews were subjected to qualitative content analysis. Trustworthiness of emergent qualitative themes from both interview and network analyses was demonstrated by inter-rater consensus among multiple reviewers of a sample of the data, referential adequacy, negative case analysis, and peer debriefing (Lincoln & Guba, 1984). Institutional ethics approval was obtained prior to study commencement. Potential participants were informed that their involvement in the study was optional, and informed consent was given by all participants.

The Sample Participants comprised 21 fathers of children with a brain tumor. Diagnoses included multiple types of tumors with varying outcomes and treatment trajectories. Children had received a diagnosis between 6 months to 5 years prior to their father’s initiation to the study. All children were treated at a tertiary pediatric hospital within a large urban center in central Canada. Of the participating fathers, approximately half lived relatively near the hospital; five resided in surrounding suburban areas, and another five fathers were from smaller cities (2,500–19,999 population) within commuting distance. The balance of participants (n = 6) lived in small towns or rural communities, in some cases, a great distance from the treatment center.


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All fathers were employed with almost half in fields of management (8/21, 38%) or natural and applied sciences (4/21, 19%). Eleven fathers had a post-secondary university degree (51%); four had achieved some nonuniversity post-secondary education (19%), and the highest educational level for four fathers was a high school diploma (19%). Annual household income among those who reported income (fourteen fathers) ranged from less than $50,000 to greater than $70,000. While six fathers (30%) reported incomes in the moderate range of $50,000 to $70,000, it is important to note that the majority of fathers in the sample reported annual incomes over $50,000. Internet use varied among participants. More than half of the participants (13, 62%) used the Internet in their workplace, whereas only eight fathers (38%) typically used the Internet at home.

RESULTS Analysis of network transcripts revealed that online group activity commenced with introductions by the moderator and each participant, followed by apparent attempts by participants to respond to one another and, in so doing, find points of connection. The content of online father-to-father dialogue ultimately addressed their children’s conditions, families’ health care experiences, acquired and needed resources, day-to-day issues, mutually held interests, frustrations and hopes, and expression of affect including sadness, vulnerability, and fear. Participants were generally highly supportive of one another throughout the duration of the network, and consistently reported valuing their connections with others in the online network. They described the network as a place to give and receive support, and exchange information. They discussed continuing challenges since their child’s diagnosis including sadness, relationship challenges, worries about their child’s prognosis and well-being, stresses with magnetic resonance imaging (MRI) check-ups or after-effects of the illness, and impacts on family health and functioning.

Outcomes A series of paired t tests were conducted to examine differences between post-intervention, based on the administration of the instruments. Relative to baseline, post-intervention scores on the Coping Health Inventory for Parents (CHIP) were significantly more favorable at a 5% alpha level, based on non-parametric test comparisons (Table 1). Of note, each item in which significant findings were found had been addressed in the intervention except items related to eating and sleeping patterns. Statistically significant differences were not found on measures of social support and meaning of illness, perhaps reflective of the small sample size and broader issues such

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TABLE 1 Significant Post-Intervention Outcomes in Fathers’ Coping (CHIP) Question Talking over personal feelings and concerns with spouse Engaging in relationships and friendships which help me to feel important and appreciated Trusting my spouse (or former spouse) to help support me and my child(ren) Sleeping


Talking with the medical staff (nurses, social worker, etc.) when we visit the medical center Believing that my child(ren) will get better Working, outside employment Showing that I am strong Purchasing gifts for myself and/or other family members Talking with other individuals/parents in my same situation Eating Getting other members of the family to help with chores and tasks at home Talking with the doctor about my concerns about my child(ren) with the medical condition Believing that the medical center/hospital has my family’s best interest in mind Building close relationships with people Believing in God Developing myself as a person Talking with other parents in the same type of situation and learning about their experiences Doing things together as a family (involving all members of the family) Investing time and energy in my job Believing that my child is getting the best medical care possible Reading about how other persons in my situation handle things Doing things with family relatives Becoming more self-reliant and independent Telling myself that I have many things I should be thankful for

Group

Median

Mode

p-value

Pre Post Pre Post Pre Post Pre Post Pre Post Pre Post Pre Post Pre Post Pre Post Pre Post Pre Post Pre Post Pre Post

4 3 3 2 5 3 4 2 4 3 5 3 4 2 4 2 3 2 4 2 3 1 4 2 5 3

5 3 3 2 5 3 5 2 4 3 5 3 5 2 4 2 4 2 4 2 3 2 4 2 5 3