Spirituality and Counselling in Programs for Siblings of People with Disabilities

Sib Shops and the Need to Incorporate Spirituality and Counseling Theory into the Programming Offered to Siblings of People with Disabilities: A Critical Literature Review

Table of Contents

Click to expand Table of Contents

Thesis Statement

Introduction

Context

Sib Shops

Goals and Purpose

Parents and Professionals

Effects of Sib Shops

Sibling’s Needs

Competing Attention

Caretaking Responsibility

Ostracized from Peers

Limited Understand of Medical Conditions

Spirituality

Families and Spirituality

Professionals and Spirituality

Siblings and Spirituality

Counseling

Professional Psychotherapy

Existential Theory

Cognitive Behaviour Theory

Researcher / Self

Problem

Research Questions

Objectives

Contribution to Knowledge

Theoretical Framework

Procedures, Methods, and Models

Philosophical Worldview

Application Framework

Population

Sample / Key Words

Strategies of Validating Findings

Data Analysis

Ethical Issues

Western Culture Concern

Social Justice Oriented

Useful Effects

Results and Discussion

Recommendations

Bibliography

Appendix 1

Resources Used Listed by Type

Thesis Statement

This research paper will be focusing on finding the gaps in the Sib Shop model for supporting children who are siblings of people with disabilities (Sib). It will take a critical look at two gaps in particular – spirituality and counseling. Siblings of people with disabilities or Sib can be anyone, regardless of age, who have a brother or sister with a disability. For the sake of this paper, we will be focusing on Sib who are 18 and under as the Sib Shop program is geared towards children and not adult siblings.

Introduction

Gaston describes these Sib Shops as designed for children who have brothers and sisters with special needs. In four sessions per year they recreate and enjoy an environment that allows them to come together with other kids who are like themselves and experience being in community with each other. This environment provides a non-judgmental space for them to discuss similar issues (2011). Even though there has been growing interest in such programming, there has been little systematic, controlled research on the effectiveness of Sib Shops to address sibling needs (Metzger,2004).

There are several needs of siblings that have been identified by Schneider, they have unmet emotional needs from being overlooked, higher rates of depression and anxiety among children, psychological needs to address the guilt or shame they feel for being a ‘typical child’, and cognitive needs surrounding the health of their sibling as they are given little to no information about their medical care (2013). The needs of Sib point to disadvantages that stem from their unique relationship within their family system. Among the many needs that are addressed through research the needs that this paper is going to focus on is the siblings’ need for spirituality and counseling.

Context

Sib Shops

Sib Shops are offered by many agencies who serve people with developmental disabilities; they are lifelong support systems to siblings of people with disabilities. Efforts have been conducted to address their concerns (Richards, 2006). The Sibling Support Group, who is dedicated to the life-long concerns of millions of Sib nationally in the US created and helps to support Sib Shops in the US, Canada, Japan, New Zealand, Argentina, Iceland, Ireland, England, Italy, and Turkey. They are described as fast paced events that allow Sib to meet other Sib, to have fun, and to talk about “the good and not-so-good parts” (Meyer, 2016) of having a brother or sister with disabilities. They play games, laugh, and learn from other Sib. Sib Shops can be therapeutic in nature for the Sib who attend but it is important to make the distinction that it is not counseling or therapy. Its model comes from more of a wellness perspective and a celebration of the lives of siblings and their brothers and sisters (Meyer, 2016; Metzger, 2004; Biggins, 1993; Burke & Montgomery, 2000). There are long-term positive benefits to meeting in Sib Shops, Heller et al. sees this through Sib having opportunities to process concerns about their families (2008).

Goals and Purpose

Biggins explains the four goals of Sib Shops to be providing siblings an opportunity to meet other siblings in a relaxed and recreational setting, to discuss common joys and concerns with other siblings, to learn how other siblings cope with commonly experienced situations, and to learn more about their brothers’ or sister’s special need (1993).

Parents and Professionals

Sib Shops also focus their efforts on incorporating parents into their programming. Although parents of Sib in the program are not encouraged to be facilitators, they are encouraged to participate behind the scenes in various other tasks. They are also given the opportunity to learn about Sib concerns and experiences of their unique place within the family system (Burke & Montgomery, 2000).

Effects of Sib Shops

Rossiter (2000), Biggins (1993), and Burke & Montgomery (2001), have done research on the effects of Sib Shops with adult siblings who have graduated from the program. Their research has shown that adult siblings who have attended Sib Shops as children are less critical and have less of a competitive nature with their brother or sister as adults. They have also been recorded to have higher self-esteem, lower rates of anxiety, and are more organized than siblings who have not experiences Sib Shops as children. It was interesting to note that there were more spiritual values within the families of those Sib who attended Sib Shops and they presented as having a lowered risk of developing psychosocial problems in adulthood than Sib who never attended Sib Shops.

Both Biggins (1993), and Burke & Montgomery (2001), recorded some more negative feedback from their research about improvements that could be implemented. Biggins mentions that participation in Sib Shops should never be mandatory, as they have seen a negative effect on the relationship between the Sib and their brother and sister when they have been mandated to participate (1993). Burke & Montgomery on the other hand listed three areas where siblings were not happy with the Sib Shop programming. Firstly, the Sib wished that the programs were more frequent and longer in duration, secondly, they did not appreciate when they were placed in a group where the age ranges were too wide. They found it difficult to connect with other siblings of different maturity levels. Lastly, when more than one sibling attended the Sib Shop it created ambivalent feelings about being in the same groups (2001).

Sibling’s Needs

There are several needs that are identified in the research concerning siblings of people with disabilities. It is noted by Petalas, Hastings, Nash, Lloyd & Dowey that siblings of children with developmental disabilities experience more emotional, psychological, and behavioural problems than their peers. Burke and Montgomery summarize the main needs of Sib into four categories; 1) siblings are given less attention than their brother or sister with disability; 2) siblings tend to contribute to many of the responsibilities around their homes and take on caring roles; 3) siblings tend to be aware that they are different from their peers and thus become ostracized from the peer groups (2000); 4)  siblings have a limited understanding of their brother or sisters medical conditions which places them on the outside of their family dynamic (2001). These simple facts cause a multiplication of stresses for siblings.

Competing Attention

Siblings feel the need to compete for the attention of their parents as the parent’s attention is consumed by the brother or sister with the disability. This need to compete leads the sibling towards some negative consequences such as depression, loneliness, anxiety, low self-esteem, and behavioural problems. Parents have reported that they feel the need to gain more parenting skills to address the needs of Sib. They have identified that the parental needs of Sib are “often neglected and that information on strategies to help them address these situations would be valuable” (Giallo & Gavidia-Payne, 2008).

Caretaking Responsibility

Due to the amount of caretaking responsibility that a sibling has within their family system there is an increased demand for the sibling to become more mature than their peers. Increased responsibility toward their brother or sister creates guilt and shame when they engage in regular sibling conflict. The message often sent out by parents is that the Sib is the one at fault because they are stronger, bigger, and should know better. This leaves the Sib feeling as though they are not permitted to get angry or argue with their brother or sister. This demand on their lives causes rebellion toward these expectations. Tamar, Kaiser, Meyer, Fish, Dufresne, & Kramer explain that siblings of people with disabilities tend to assume primary care for their brother or sister as their parents age. Over 25% of caregivers in the US, (716,212) are currently over the age of 60 and are likely to pass off the caring role for their daughter or son to their other children. As individuals with disabilities begin to outlive their parents, Sib end up becoming the primary caregivers (2008).

Ostracized from Peers

Sib tend to be consumed with responsibilities and caretaking roles at home and therefore do not develop the same kind of play that their peers do. Often Sib are ostracized and isolated on the playground from other children. There is a distinct difference in the maturity levels of Sib compared to their peers and this difference only further emphasizes the gaps (Metzger, 2004).

Limited Understand of Medical Conditions

Parents tend to keep the information about the disabled child’s condition to themselves. This leave the Sib feeling as though they are on the outside of the family dynamic. It also tends to leave the Sib unsure and anxious about what is going on with their brother or sister. When Sib do grow in their awareness of the disabilities that their brother or sister has, they fear that this disability will reflect on their own sense of competence and/or health (Richards, 2006; Metzger, 2004).

Spirituality

Koenig explains that Spirituality is connected to the supernatural and to organized religion and it “is distinguished from all other things—humanism, values, morals, and mental health—by its connection to that which is sacred” (Koenig, 2012). For the sake of this paper we will be defining spirituality as an expression through both religious and non-religious practices that is personal in nature but can be shared through communities and religious organizations. It is the person’s inner world of values, beliefs, and inspiration that helps to guide their process of coping and resilience (Turnbull & Poston, 2004). Lane would assert that the spiritual journey would enable a person to “live with rather than suffer from” (Lane, 1992) their current difficulties.

Families and Spirituality

Bellin & Kovacs (2006) explain that the family system of belief can strengthen a sibling’s ability for resilience, normalize adversity, and manage challenging experiences. Koenig explains that spirituality boosts positive emotions and helps to regulate negative emotions. The hypothesis is that it “serves as both a life-enhancing factor and as a coping resource” that can aid families with adversities such as environment circumstances, and vulnerabilities in life (2012). “[Spirituality] has long been considered a psychological force that can influence the outcome of the lives of individuals and families” (Yonker, Schnabelrauch, & Dehaan, 2012). It is therefore important to affirm and incorporate spirituality within the care of siblings and their families. This paper will explore if Sib Shops incorporate spirituality into their programming as it is a huge resiliency factor in framing our understanding of suffering as living with our pain (Lane, 1992). “Fostering resilience in siblings is undoubtedly tied to bolstering the inherent strengths, resources, and functioning of the surrounding family unit” (Bellin & Kovacs, 2006).

Professionals and Spirituality

Professionals, who are assisting siblings should have an appreciation of how spirituality strengthens and supports siblings and their families in their efforts to cope with a brother or sister with disabilities. The continue by saying that “in addition to bolstering support systems–internal and external to the family–social workers are wise to acknowledge the potential healing and comforting aspects of religion and spirituality that may undergird resilience” (Bellin & Kovacs, 2006). Professionals should incorporate spiritual needs and concerns within their system of care. To be receptive to the spiritual needs of others, professionals need to be comfortable with their own personal spirituality as well (Treloar, 2002). It is recommended that professionals collaborate with religious leaders and qualified spiritual counsellors to help siblings grapple with the spiritual issues that surface to disabilities.

Siblings and Spirituality

Integrated spirituality in the lives of siblings has shown to increase their respect for their brother or sister with disability. It has given them a perspective into the “fragility of life and the importance of love and connection” (Rothberg, 2000). Being able to have compassion and see life through the eyes of their brother or sister has given the sibling a new perspective on their own meaning of life. It has brought about a greater understanding of their own limitations and responsibilities for the life that they possess. It has increased the opportunity for empathy to other ways of being human. These kinds of considerations are viewed as deeply spiritual (Rothberg, 2000).

Counseling

Professional Psychotherapy

Counseling is defined as the act of psychotherapy provided by a registered professional psychotherapist. Both Burke & Montgomery (2000), and Schneider (2013), recommend that Sib are provided with regular counselling to deal with their concerns and adjustments of having a sibling with disabilities. Schneider points out that this referral should be to a competent psychotherapist who particularly specialized in working with Sib and special needs families (2013). Part of the reason to refer Sib to counseling is because families often do not understand, nor does our current society acknowledge the grief, loss, depression, guilt, and ager that siblings of people with disabilities suffer with (Rohde-Brown & Frain, 2014).

Even though it is recommended that siblings of people with disability seek out regular counseling, they can be highly restricted by their financial resources, it is understood that not all Sib can access registered professional psychotherapy. Therefore, for the sake of this paper we will be focusing on how counseling theories can inform and be integrated into the Sib Shop model. There are several psychotherapy theories that can be used within the profession, for the sake of goodness to fit with Sib Shops, the research points us to working with both the existential theory and cognitive behavioural theory (Biggins, 1993).

Existential Theory

Existential theory, which was developed by Victor Frankl, focuses on human freedom, values, responsibility, death, and spirituality. His existential theory is created through an anthropological lens that precedes all psychotherapeutic models, it thus focuses on the three dimension of knowledge, the human person, and of meaning and values (Frankl, 2004. p.6). There are long term truths about being a sibling of someone with disabilities that lend themselves toward examining these existential dimensions. These truths often revolve around finding meaning and purpose, dealing with grief and loss, and the feelings of helplessness and acceptance of the life they are living (Rohde-Brown & Frain, 2014). “The lives of siblings are special because the attachment between one sibling and another is usually the longest most individuals have and consequently brother and sister may expect to share important experiences together” (Burke and Montgomery, 2000).  Rhode-Brown expressed it best when saying that existential theory is an in-depth framework that can help ritualize healing for siblings suffering from such grief and loss (2014).

Cognitive Behaviour Theory

Given the nature of Sib Shops being mostly recreational Cognitive Behavioural Therapy (CBT) fits well as Sib interact with peers and learn about their brothers’ or sisters’ disability and illness. CBT helps to strengthen coping skills in Sib who particularly experience anxiety, depression, grief, and loss. A Sib Shop group consisting of psycho-education, relaxation techniques and problem-solving strategies can provide the skill-based interventions that can improve sibling’s self-esteem and family relationship (Giallo & Gavidia-Payne, 2008). Studies show that siblings of people with disabilities are at a greater risk of having behaviour problems than their peers. CBT can provide therapeutic interventions that can increase their coping skills. “Skill-based, cognitive behavioural interventions have been well documented for many childhood adjustment problems including internalizing behaviour difficulties and may be particularly beneficial for siblings” (Giallo & Gavidia-Payne, 2008). Since the gaps in the programming offered by Sib Shops do not meet the cognitive needs of siblings there has been a second program developed that uses and online CBT approach with families. Sibtars is a family-based psycho-educational program for siblings between the ages of eight to sixteen years, and parents of people with disabilities. It focuses on helping to strengthen coping skills, parenting skills, problem- solving / communication skills. The program is a CBT prevention strategy for families who consist of children with disabilities (Giallo & Gavidia-Payne, 2008).

Given the need for additional programming within the CBT approach there has been a second program that evolved to assist siblings with behaviour modification training. It is a six-week summer camp program that is offered between when Sib Shop blocks are offered. It supports older siblings ages ten and up, and provides them with behavioural modification group classes. Parents are encouraged to participate simultaneously in a parallel program to address behaviours on a family systems level. Parents have noted that siblings had always improved the ways in which they interact with their brother or sister (Metzger, 2004).

Researcher / Self

Citizen Advocacy is an organization in Ottawa who places their focus on people who have disabilities by providing advocacy services as well as programming to help them psychologically grow in our society. I was inspired by the programming that is offered to children siblings of people with disabilities. Citizen Advocacy runs a support group for Sib as they recognize the need for them to meet others who “really understand how having a sibling with a disability is unique” (Citizen Advocacy, 2017). Burke and Montgomery recognize that siblings not only share the responsibility in the home with their parents but they also need an opportunity to share their own personal feelings (2001). Sibling groups provide an opportunity to meet others who are in a similar situation and thus address the need of connection for Sib and providing them with a place to be heard. The work that Citizen Advocacy does here in Ottawa has inspired me to research the ways in which sibling needs are addressed through Sib Shops in Canada and the United States. I believe that Sib Shops are a great start to help address some of the social needs that siblings may have but it may be lacking in the ways that they address spiritual and counseling needs.

As a counseling intern, social worker, and youth minister I have worked with children and teenagers professionally for over 20 years. This provides me with some particular insight into their values, and what brings them meaning and purpose. In my professional career, I have also worked with individuals who have disabilities and interacted with their families. I have observed that their siblings tend to draw less focus from their families and in some cases, due to the demand of caring, are lacking some basic needs. It is for this reason that siblings of people with disabilities are a focus of mine. I am passionate about the unseen. There are many groups of people who are not noticed in our society from the homeless to the hidden pain of CEO’s. I have a heart that desires to reach the unseen and provide them with care. Although there are many groups of people that are unseen, children tend to be the ones in which I am most passionate about.

Children often have a difficult time expressing that they are in need. Their expression of need can sometimes come off as complaining, demanding, or even rebellious. I desire to give a voice and place of comfort to children whose own voices have been silenced. Siblings of people with disabilities tend to become silenced simply because of the demand put on parents and caregivers in regards to the child with disabilities. Not only are siblings sometimes unnoticed but they often need to use their time to be co-carers. For these reasons, I desire that my research can be useful in advocating for siblings. If this research can identify gaps in the services that Sib programming offers, then perhaps things may change in the services provided.

Problem

Counseling theories and spirituality are very essential to providing care towards siblings of people with disabilities. Sib Shops, although good at providing community and unintentional therapeutic results, are not rooted in counseling therapy nor understand how spirituality can deeply effect resiliency in siblings of people with disabilities. There is a clear need to incorporate both existential and CBT counseling theories as well as a sense of spirituality within Sib Shop programming.

Research Questions

There are several questions that have helped to form my research paper and that have sprung up from the research currently accomplished. The following are five questions that are particularly pertinent to this literature review.

1. In which ways, can spirituality and counseling theories impact siblings of people with disabilities? What is the specific function of spirituality and counseling for in the lives of siblings of people with disabilities?
2. What types of counseling and spirituality services are offered to Sib in programs other than Sib Shops? Does anything else exists to support Sib and their families?
3. Are there any counseling services that are provided by the Sib Shop model or are siblings of people with disabilities and their families referred to qualified professional psychotherapist by the program facilitators?
4. Does The Sibling Support Project see spirituality and counseling as effective tools for addressing the needs of siblings and their families? When was The Sibling Support Project created, and did they originally have any religious affiliation and spiritual context?
5. What role could the practice of counseling and the integration of spirituality play in addressing the gaps that are identified in the services that are provided by the Sib Shop model?

Objectives

The purpose of my study is to aid Sib Shop creators in identifying any spiritual, or counseling needs of Sib that are not being addressed through their current Sib Shop programming. The Sib Shop program in Ottawa conducted by Citizen Advocacy is currently undergoing a review of their programming services to Sib and I believe that if they incorporate spiritual and counseling tools into their services, it will help them to address a wider variety of Sib needs. I plan on presenting my finding to Citizen Advocacy in hopes of helping them to provide a more comprehensive service to the siblings of the Ottawa area.

Contribution to Knowledge

1. To better Citizen Advocacy’s programming through a critical review of what they are currently offering and where some gaps may exist. If spirituality and counseling are not already present in their programming but are proven to offer benefits to Sib, then they may incorporate this study into their new services.
2. To add to the body of research surrounding spirituality as an important area of study for siblings of people with disabilities. Spirituality is an emerging area of study in the counseling field and there are few research papers that focus on spirituality as a central part of being human.
3. To propose to other agencies the use of spirituality and counseling within their services and programming. Not only will this report aid Citizen Advocacy in expanding their services, it may also be useful to other agencies who may want to review the use of spirituality and counseling with their population as well.
4. To better inform the researcher (myself) about the needs of Sib. As I desire to work with Sib in my own private practice, this research will help to educate me on their identified needs and areas of psychological growth.

Theoretical Framework

Procedures, Methods, and Models

This research papers design will be a literature review that will take a critical look at Sib Shop programming and design. It will triangulate the research available that address the needs of siblings of people with disabilities to create a comprehensive list of identified needs. It will aim to explore whether spirituality and counseling theories can help to create a more holistic Sib Shop experience for siblings.  I will compare different research from several sib’s agencies and will take a critical look at how they provide services for Sib.

I will be using quantitative methods to collect secondary data from the research articles that I review and I will triangulate them with each other to better understand the depth and breadth of spirituality, counseling, Sib Shops, and siblings needs.

Using a literature review means that the questions for research are informed by a wide body of work. It means that I will be looking critically at the research already done and triangulating them together to narrow down the questions that are most important to the research. I will be narrowing down the problem to a hypothesis that claims that spirituality and counseling services are currently not present in the services offered by Sib Shops in a way that provides the most use of their particular genius.  Therefore, my data collection will either support my hypotheses or refute it.

I believe this is the right design to use for my study as a am only interested in doing a major research paper and will not be designing a study that requires primary data. I will be using the research that already exists around spirituality and counseling with Sib and connect that research to the body of work about both the needs to Sib and the services offered through Sib programming. This can all be done by using secondary data sources and taking a critical look at the body of research already accomplished.

Doing a literature review will shape the problem through the research done. The research will inform the problem and prove or disprove the hypotheses that spirituality and counseling will aid Sib programs to address more needs. Due to my transformative worldview, I will be forming the problem in such a way that advocates for Sib and promotes change.

Philosophical Worldview

The philosophical worldview that this research paper will be operating from is the transformative worldview. There will be a focus on changing institutions and advocating for the sibling population through researching how useful spirituality and counseling are in helping to address their needs. There is a strong action agenda to reform programming and to incorporate multiple avenues for addressing the needs to siblings of people with disabilities. The data provided, the methods used, and the findings themselves will be brought to the attention of Citizen Advocacy. Involving them in the final project will help to have their buy-in so that real change can take affect within the services that they offer to the Sib of Ottawa. Citizen Advocacy will be actively involved in the research project by providing the information needed about their current services. This research paper will bring about change for Sib and advocate for counseling and spiritual services being offered to them and their families through the Sib Shop model.

Application Framework

Population

Although siblings of people with disabilities come in all different ages, for the sake of this study I have focused on research that is based on Sib Shop programming which is only offered to children ages 18 and under. For this reason, most of the articles chosen were articles that focused on the needs for siblings who were children at the time of the research. For the sake of exploring effectiveness of Sib Shops, there are a couple of articles that focused on siblings who are adults today but have gone through the Sib Shop process as children.

Sample / Key Words

I have reviewed 25 articles for the sake of this paper but has discarded 3 of them because they focused mainly on autism, cancer, or were not the target age demographic that this paper was focusing on. The 22 other sources consisted of 18 scholarly journal articles, 2 organization web-sites who support siblings of people with disabilities, 1 video interview resource, and 1 Encyclopedia reference. I would like to do more research and find more articles on both existential therapy and cognitive behavioural therapy with children. I feel as though it would help to strengthen the validity of this research if I triangulate my research in the counseling theories. Another piece of information that I believe may strengthen the validity of this paper would be to collect information from Citizen Advocacy and other Sib Shop programs as to what exactly is done during a Sib Shop event. It would be useful to collect data based on the reasons for their activities and the kinds of activities that are done.

When searching for articles the key words that were searched were: Children, Siblings, Disability, Spirituality of Children, Existential Theory and Children, Cognitive Behaviour Therapy and children, Religion, parents of people with disabilities, siblings of people with disabilities, and other combinations of these key words.

Strategies of Validating Findings

I plan on using articles from multiple sources which will help to triangulate the data collected and make it more valid. I will make sure that he articles used are peer reviewed or recommended by credible sources. I will make sure there are known and relevant authors and sources for the articles that are used in this research. I plan on using articles that are recent and have been published no later than 1993, most of the articles used in this proposal have been from the 2000’s except for one article from 1993.

Data Analysis

My data analysis may recommend further areas of research that may be done. It will also focus on either confirming my original hypotheses that Sib Shops do not incorporate spirituality or counseling theories within their programming or declaring that it was not correct. There will be a need for a critical review of the secondary research and a focus on how the data could inform change within the programming already offered in the services provided by Citizen Advocacy and other Sib Shops around the world.

Ethical Issues

Western Culture Concern

I have observed that most of the articles that are being used are mainly from recent and Western culture sources. Seeing as how Ottawa and Citizen Advocacy operate in a very multicultural, although Western, city the findings of these articles may not apply across all cultures.

Social Justice Oriented

I also do notice that we currently live in a society that is more social justice oriented than it ever has been. The impact of this might change the reality of how siblings are now raised to view their ‘other-ly abled’ brother or sister. Today the emphasis about disability is that they are not disabled but merely able in other ways. This may lead to a difference in how siblings react to having a brother or sister with disabilities. This is highlighted in how some of the research conducted even in the 2000’s still use less inclusive language such as ‘mental retardations’.

Useful Effects

In the past, there has been much research on the negative effects of being a sibling with someone with disabilities, there was little research available that spoke about how siblings gain useful adaptive and caring skills because of their relationship with their brother and sister with a disability.

Results and Discussion

Based on my preliminary research I have seen how there are several counseling theories that may lend themselves well to enhancing the Sib Shop models. It is also noted that using spirituality may also allow siblings to connect, in a transcendent way to resiliencies that they currently are not encouraged to access through the Sib Shop model.

I would like to examine further the precise activities and schedule of a Sib Shop program. I would also like to find research done, or an article produced from the original creators of the Sib Shop model. I am curious to see if they originally identified spirituality as something that was useful. The world in which we live in now tends to disregard spirituality as important because they view spirituality as being connected only to an organized religion. I could imagine, when the Sib Shops were created, that it was a time when people were not as rebellious towards religion in general. Although the concept of spirituality being distinct from religion may not have existed at that time, they might have created the program based on religious values initially. If so there may be some spirituality components that were taken out of Sib Shops original model.

Recommendations

There is little to recommend now until there is more research conducted on how Sib Shops run and what kinds of activities are incorporated into their programming. I recommend that Sib Shops incorporate spirituality and counseling within the programming to enhance what they already have. I believe that these small shifts can be incorporated quite easily into what they already do. I would also recommend that Citizen Advocacy, who is currently undergoing reconstruction of their Sib Shop model could reflect on the proposed ideas that this paper has set forth.

Bibliography

Bellin, M. H., & Kovacs, P. J. (2006). Fostering resilience in siblings of youths with a chronic health condition: a review of the literature. Health and Social Work, 31(3), 209+. Retrieved from https://proxy.library.carleton.ca/login?url=http://go.galegroup.com.proxy.library.carleton.ca/ps/i.do?p=AONE&sw=w&u=ocul_carleton&v=2.1&it=r&id=GALE%7CA151547704&sid=summon&asid=c3ab5f9a74abd688877bdd490cc7bc2f

Biggins, M. (1993). Siblings of Children with Disabilities. Retrieved from https://www.uleth.ca/dspace/bitstream/handle/10133/914/Biggins_Mirian.pdf?sequence=1

This resource gives a background on why Sibs Shops are important and why they are useful. It explains the limitations of sib shops as well as how effective they are and for whom. My report will focus on comparing the programming (sib shop) of Citizen Advocacy with other sib shops in Canada, the United States, and the UK. This resource helps to identify defining features of these kids of shops and their usefulness. This resource provides clear expectations of sib shops as well as a sample itinerary and a list of activities used to address needs.

Burke, P., & Montgomery, S. (2000). Siblings of Children with Disabilities. Journal of Learning Disabilities,4(3), 227-236. doi:10.1177/146900470000400305

This resource provides key research findings about siblings of people with disabilities. It also provides a set of guidelines to guide new research in SIBS issues. Their research comes from research work group from the Sibling Leadership Network Conference, Washington D.C. in 2007. Principles were identified that should guide sibling research in the future. They have identified gaps in current research, and described recommendations and action steps to move research forward. A pilot study was conducted with both quantitative and qualitative research. There are direct quotes from both parents and siblings which derive from the qualitative research.

Burke, P., & Montgomery, S. (2001). Brothers and sisters: Supporting the siblings of children with disabilities. Practice,13(1), 27-38. doi:10.1080/09503150108415469

This resource examines the needs that siblings of people with disabilities. It connects support groups as important to address needs. Their research is based on the words of siblings themselves and they offer recommendations for practitioners to support the whole family.

Citizen Advocacy. (2017). Children’s Sibling Group. Retrieved from https://www.citizenadvocacy.org/childrens-sibling-group/

Frankl, V. (2004). On the theory and therapy of mental disorders: an introduction to Logotherapy and existential … analysis. New York: Brunner-Routledge.

Gaston, G. (2011, September 6). Sib-Shop. Retrieved from http://www.clipsyndicate.com/video/playlist/10833/2819763?cpt=8&title=cengage_broadcast&wpid=6424

Giallo, R. & Gavidia-Payne, S. (2008). Evaluation of a family-based intervention for siblings of children with a disability or chronic illness, Australian e-Journal for the Advancement of Mental Health, 7:2, 84-96. Retrieved from: http://dx.doi.org/10.5172/jamh.7.2.84

Heller,T., Kaiser, A., Meyer, D., Fish, T., Dufresne, D., & Kramer, J. (2008). Research Related to Siblings of Individuals with Disabilities. Retrieved from http://siblingleadership.org/research/research-related-to-siblings-of-individuals-with-disabilities

This resource provides research done on the topic of siblings with people of disabilities from multiple authors. It is a network of support with programs that are similar to those of Citizen Advocacy. I plan on using this website as a lens on which I will view the programming of Citizen Advocacy.

Koenig, H. G. (2012). Religion, Spirituality, and Health: The Research and Clinical Implications. ISRN Psychiatry, 2012, 278730. http://doi.org.proxy.library.carleton.ca/10.5402/2012/278730

Lane, N. J. (1992). A spirituality of being: Women with disabilities. Journal of Applied Rehabilitation Counseling, 23(A), 53-58.

Metzger, S. B. (2004). The effect of a support group for school-age siblings of children with a disability: A pilot study (Doctoral dissertation, Fairleigh Dickinson University) [Abstract]. (UMI No. 3148949)

Meyer, D. J. (2016). The Sibling Support Project. Retrieved from https://www.siblingsupport.org/

This website contains many research articles and publications They also contain three story book resources for siblings of people with disabilities: Views from our shoes: growing up with a brother or sister with special needs, Living with a brother or sister with special needs: a book for sibs and The sibling slam book: what it’s really like to have a brother or sister with special needs. These publications will be explored to glean how story books can address the needs of SIBS.

Petalas, M. A., Hastings, R. P., Nash, S., Lloyd, T., & Dowey, A. (2009). Emotional and behavioural adjustment in siblings of children with intellectual disability with and without autism. Autism,13(5), 471-483. doi:10.1177/1362361309335721

This resource, although focusing on the particular disability of autism, provides research on how having a sibling with disabilities can affect the development of the siblings without disabilities.

Richards, P. L. (2006). Siblings of People with Disabilities. In G. L. Albrecht (Ed.), Encyclopedia of Disability (Vol. 4, pp. 1454-1455). Thousand Oaks, CA: SAGE Reference. Retrieved from https://proxy.library.carleton.ca/login?url=http://go.galegroup.com.proxy.library.carleton.ca/ps/i.do?p=GVRL&sw=w&u=ocul_carleton&v=2.1&it=r&id=GALE%7CCX3469300714&asid=85d967f1442529fdce0fa7c852d6a7c5

Rohde-Brown, J., & Frain, B. (2014). Facing Invisible Dragons. Journal of Humanistic Psychology, 54(2), 182-202. doi:10.1177/0022167813491632

Roper, S. O., Allred, D. W., Mandleco, B., Freeborn, D., & Dyches, T. (2014). Caregiver burden and sibling relationships in families raising children with disabilities and typically developing children. Families, Systems, & Health,32(2), 241-246. doi:10.1037/fsh0000047

With the use of the family systems theory, this resource studied 172 families who raise both typically developing children and those with disabilities to investigate sibling relationships.

Rossiter, L. (2000). Siblings of individuals with intellectual disabilities: psychological functioning and sibling relationships (Unpublished master’s thesis). University of Regina. Retrieved from http://www.collectionscanada.gc.ca/obj/s4/f2/dsk2/ftp03/MQ54744.pdf

This thesis uses the family systems theory that siblings of people with disabilities are impacted psychologically. It highlights factors that are affecting adult sibling relationships and uses four questionnaires in their research that may be helpful to my own research.  This resource explains how childhood studies of Sibs seem to suggest negative findings in regard to psychological health. This thesis’ results claim that adult sibs experience less criticism, competition, and conflict in their adult sibling relationships than individuals who do not have a sibling with a disability.

Rothberg, D. (2000). Spiritual inquiry. In T. Hart, P. L. Nelson, & K. Puhakka (Eds.), Transpersonal knowing: Exploring the horizon of consciousness (pp. 161-184). Albany: State University of New York Press

Schneider, N. (2013). Support for Siblings of Special Needs Children. Retrieved from http://www.goodtherapy.org/blog/support-siblings-special-needs-children-0510134

This resources consists of a bulleted list of the feelings that Sibs can identify with as well as resources for their needs. I plan on using this resource as a lens to explore other research resources and identifying Sibs needs.

Treloar, L. L. (2002). Disability, spiritual beliefs and the church: the experiences of adults with disabilities and family members. Journal of Advanced Nursing,40(5), 594-603. doi:10.1046/j.1365-2648.2002.02417.x

Turnbull, A. P., & Poston, D. J. (2004). Role of Spirituality and Religion in Family Quality of Life for Families of Children with Disabilities. Education and Training in Developmental Disabilities, 39, 2nd ser., 95-108. Retrieved April 01, 2017, from http://www.jstor.org.proxy.bib.uottawa.ca/stable/pdf/23880059.pdf

Yonker, J. E., Schnabelrauch, C. A., & Dehaan, L. G. (2012). The relationship between spirituality and religiosity on psychological outcomes in adolescents and emerging adults: A meta-analytic review. Journal of Adolescence,35(2), 299-314. doi:10.1016/j.adolescence.2011.08.010

Appendix 1

Resources Used Listed by Type

Counseling

Rohde-Brown, J., & Frain, B. (2014). Facing Invisible Dragons.

Frankl, V. (2004). On the theory and therapy of mental disorders: an introduction to logotherapy and existential … analysis.

Bellin, M. H., & Kovacs, P. J. (2006). Fostering resilience in siblings of youths with a chronic health condition: a review of the literature.

Spirituality

Lane, N. J. (1992). A spirituality of being: Women with disabilities.

Turnbull, A. P., & Poston, D. J. (2004). Role of Spirituality and Religion in Family Quality of Life for Families of Children with Disabilities.

Koenig, H. G. (2012). Religion, Spirituality, and Health: The Research and Clinical Implications.

Yonker, J. E., Schnabelrauch, C. A., & Dehaan, L. G. (2012). The relationship between spirituality and religiosity on psychological outcomes in adolescents and emerging adults: A meta-analytic review.

Treloar, L. L. (2002). Disability, spiritual beliefs and the church: the experiences of adults with disabilities and family members.

Rothberg, D. (2000). Spiritual inquiry. In T. Hart, P. L. Nelson, & K. Puhakka (Eds.), Transpersonal knowing: Exploring the horizon of consciousness

Sib Shop Programs

Gaston, G. (2011, September 6). Sib-Shop Video Interview

Metzger, S. B. (2004). The effect of a support group for school-age siblings of children with a disability: A pilot study.

Sibling’s Needs

Biggins, M. (1993). Siblings of Children with Disabilities.

Burke, P., & Montgomery, S. (2000). Siblings of Children with Disabilities.

Burke, P., & Montgomery, S. (2001). Brothers and sisters: Supporting the siblings of children with disabilities.

Rossiter, L. (2000). Siblings of individuals with intellectual disabilities: psychological functioning and sibling relationships

Petalas, M. A., Hastings, R. P., Nash, S., Lloyd, T., & Dowey, A. (2009). Emotional and behavioural adjustment in siblings of children with intellectual disability with and without autism.

Roper, S. O., Allred, D. W., Mandleco, B., Freeborn, D., & Dyches, T. (2014). Caregiver burden and sibling relationships in families raising children with disabilities and typically developing children.

Schneider, N. (2013). Support for Siblings of Special Needs Children.

Heller,T., Kaiser, A., Meyer, D., Fish, T., Dufresne, D., & Kramer, J. (2008). Research Related to Siblings of Individuals with Disabilities

Richards, P. L. (2006). Siblings of People with Disabilities : Encyclopedia of Disability

Sib Shop Organization Websites

Citizen Advocacy. (2017). Children’s Sibling Group.

Meyer, D. J. (2016). The Sibling Support Project.