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Journal of Policy and Practice in Intellectual Disabilities Volume 14 Number 1 pp 78–86 March 2017

doi: 10.1111/jppi.12189

Family Quality of Life in the Democratic Republic of the Congo Heather M. Aldersey*, Grace L. Francis†, Shana J. Haines‡, and Chun Yu Chiu§ *Queen’s University, Kingston, ON, Canada; †George Mason University, Fairfax, VA, USA; ‡University of Vermont, Burlington, VT, USA; and §National Taiwan Normal University, Taipei City, Taiwan

Abstract There is a critical need to create a reliable, relevant, and culturally appropriate measure of Family Quality of Life (FQOL) in order to evaluate family outcomes and related national family support mechanisms in the Democratic Republic of the Congo (DRC). This study explores Congolese conceptions of FQOL and examines the appropriateness of adapting a common FQOL measurement tool for use in a Congolese context. Data are derived from four focus groups, conducted with 21 family members of persons with disabilities and 2 family advocates in Kinshasa, DRC. Participant conceptions of FQOL were highly similar to common understandings of FQOL globally. Participant discourse identified poverty and resiliency as potentially crucial underlying factors in FQOL in the DRC. FQOL is an important concept to measure in the DRC. Measurement must take poverty and resiliency into consideration. Keywords: Africa, Democratic Republic of the Congo, family quality of life, FQOL scale, intellectual disability, Kinshasa

Family members are crucial to successful outcomes for children and adults with intellectual and/or developmental disabilities (IDD) (Samuel, Rillotta, & Brown, 2012). Individuals with disabilities often require support and guidance from their families into adulthood (Lindstrom, Doren, & Miesch, 2011; Rupp & Ressler, 2009). Family expectations, guidance, and day-to-day support have a profound influence on individual outcomes (Bronfenbrenner, 1986; Dixon & Reddacliff, 2001; Rupp & Ressler, 2009). Accordingly, when families do not receive adequate support to assist their family member with a disability and maintain high expectations, they often become overwhelmed and provide less effective support to all of their children (National Disability Rights Network, 2011). Family-centered, strengthsbased support programs that attend to family emotional, physical, instrumental, and informational needs result in improved family and individual outcomes (Dunst & Bruder, 2002; Kyzar, Turnbull, Summers, and Gomez, 2012). Family support is even more crucial for families living in contexts impacted by poverty such as the Democratic Republic of the Congo (DRC), where limitations in public and private infrastructure place a substantial burden of care on the family unit (Aldersey, Turnbull, & Turnbull, 2016). The DRC is a central African country with a rich history, vibrant cities, and abundant natural resources including copper, gold, diamonds, cobalt, uranium, coltan, and oil. However, the DRC has also been characterized by lengthy and complicated wars since the 1990s, with unrest continuing to occur in the Received December 18, 2015; accepted August 4, 2016 Correspondence: Heather Michelle Aldersey, Queen’s University, School of Rehabilitation Therapy, Ontario, Canada. Tel: 613-533-6088; E-mail: [email protected]

eastern portion of the country. In spite of progress in recent years, the DRC remains one of the poorest in the world, with seven in 10 homes classified as poor in urban areas such as Kinshasa (Watchiba, 2016). Further, the DRC ranked at the bottom of the Human Development Index, a composite measure of life expectancy, education, and per capita income indicators (UNDP, 2014). This poor rating indicates that families in the DRC experience exceptionally low life expectancy and education rates and exceedingly high rates of poverty. Among the Congolese, the nuclear family is often only one part of a larger network of extended family that can include grandparents, uncles, aunts, cousins, nephews, nieces, and even those not biologically related (Ranard, 2013). Recent estimates of disability prevalence predict approximately 10,500,000 people with disabilities in the DRC, or approximately 15% of the population (Lobe & Mubaya Kiwele Kya Bantu, 2013). Children with intellectual and related developmental disabilities often experience stigma and lack of opportunities in the DRC (Mukau Ebwel, Roeyers, & Magerotte, 2013). Additionally, families who experience disability in the DRC face significant hurdles, including increased health and education costs, debilitating caregiving burdens, stigmatization, and decreased opportunities to work outside of the home (Aldersey, 2013; Aldersey, Turnbull, & Turnbull, 2016). There is a paucity of family-focused disability interventions, and the majority of the minimal disability-related supports available (e.g., physiotherapy, special education) target specific individuals (not family units) and are available primarily in urban city centers (e.g., Kinshasa, Lubumbashi). Fortunately, the 2006 United Nations Convention on the Rights of Persons with Disabilities has ushered in a new era of government accountability for supporting persons with disabilities, with many

C 2016 International Association for the Scientific Study of Intellectual and Developmental Disabilities and Wiley Periodicals, Inc. V

Journal of Policy and Practice in Intellectual Disabilities

Volume 14 Number 1 March 2017

H. M. Aldersey et al. • FQOL in the DRC

TABLE 1 Family Quality of Life domains (Hoffman et al., 2006) Domain

Family interaction Parenting

Ideas captured

Relationships among and between family members. The activities that adults in the family do to help their child grow and develop.

Emotional well-being

Emotional aspects of family life.

Physical/material well-being

The basic physical needs of the family members.

Disability-related support

The support needed in the home and community for the family member with a disability.

developing-nation signatories creating or improving their national policies on disability as a result. In September, 2015, the Congolese disability community gained a new sense of hope for effective disability services when the government voted in favor of ratification of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). Yet, as of April 1, 2016, the CRPD still has yet to be signed (United Nations, 2016). If it ratifies the CRPD, the DRC will need to focus more on developing systematic family support for families with members who have disabilities. In order to assess need and evaluate the impact of family support initiatives, there is a critical need to create a reliable, relevant, and culturally appropriate measure of Family Quality of Life (FQOL). Over the past two decades, FQOL, or, “a dynamic sense of well-being of the family, collectively and subjectively defined and informed by its members, in which individual and family needs interact” (Zuna, Summers, Turnbull, Hu, & Xu, 2010, p.262) has emerged as a concept with high utility for the measurement of family outcomes (Abedi & Vostanis, 2010; Feldman & Werner, 2002; Soresi, Nota, & Ferrari, 2007). The study of FQOL has gained growing prominence in the field of disability research in the 21st century (Wang & Kober, 2011), with researchers on nearly every continent conceptualizing and measuring FQOL. One major line of research related to conceptualization and measurement of FQOL was conducted by American researchers from the University of Kansas’ Beach Center on Disability (Samuel et al., 2012). This research team conceptualized FQOL to represent the entirety of family life, including the quality of life of both individual family members as well as the entire family unit as a whole (Chiu et al., 2013). The team also developed a FQOL measurement tool, the Beach Center FQOL Scale, that identifies “domains” or component parts of FQOL, which collectively make up the multidimensional, holistic concept (Poston et al., 2003; Schalock & Verdugo Alonso, 2002). The Beach Center FQOL Scale is an instrument developed in the USA as a result of a series of studies to identify perceptions about the meaning of FQOL (Poston et al., 2003) and to field test

Questions

It includes questions on communicating, problem solving, spending time together, and showing love and support. It includes questions on helping the child learn to make good decisions or be independent, helping with schoolwork, knowing who the child’s friends are, and having time for the needs of all the children in the family. Questions relate to having support to relieve stress, friends to provide support, time to pursue interests, and help from outside the family to care for family members. Questions in this domain relate to getting medical and dental care, having transportation, taking care of expenses, and feeling safe. Questions relate to having support to make progress at school, work, and home or to make friends; and having a good relationship with service providers. and validate a measure of FQOL (Hoffman, Marquis, Poston, Summers, & Turnbull, 2006; Mannan, Summers, Turnbull, & Poston, 2006; Park et al., 2003). The resulting scale consists of 25 questions, organized into the five FQOL domains (family interaction, parenting, emotional well-being, physical and material well-being, and disability-specific support). Table 1 provides further details about the scale domains. Respondents use a 5-point Likert-type scale to rate both importance of and satisfaction with each item. Although the importance rankings do not have statistical significance, many researchers continue to use this dimension to better understand family perspectives on FQOL. Assessing each item two ways (importance and satisfaction) helps to establish a cognitive contrast between the aspects and thus assists to determine perceived FQOL (Balcells-Balcells, Gine, Guardia-Olmos, & Summers, 2011). The FQOL scale has an overall satisfactory reliability with a Cronbach’s a of 0.92 in importance and 0.88 in satisfaction. The scale also has acceptable convergent validity between the Family Interaction domain/the Family APGAR (r 5 0.60) and between Physical Well-being domain/the Family Resource Scale (r 5 0.68), and good fit of the higher-order model, v2 (270) 5 439.24, p < 0.001, CFI 5 0.92, and RMSEA 5 0.05 (Hoffman et al., 2006). This scale has been successfully adapted for use throughout the world, including in Canada (Rivard et al., in press), China (Hu, Summers, Turnbull, & Zuna, 2011), Columbia (Verdugo, Cordoba, & Gomez, 2005), Spain (Balcells-Balcells et al., 2011), Taiwan (Chiu, Seo, Turnbull, & Summers, unpublished manuscript) and Turkey (Meral, Cavkaytar, Turnbull, & Wang, 2013), with all research indicating this is a highly valid scale to measure FQOL across varied cultures and contexts because of its factorial structure and its indicators. No study, however, has focused on validating the Beach Center FQOL Scale in an African context. As the DRC turns more attention to developing family support for families with members who have disabilities, there is a critical need for a reliable, relevant, and culturally appropriate measure of Congolese FQOL. Such a measure would enable 79




TABLE 2 Focus group participants Neighborhood of residence

Occupation

M/F

Matete Barumbu Kinshasa Lingwala Kalamu Mont Ngafula Kalamu

Public servant Nurse Homemaker University student Unemployed Homemaker Informal sector

M F F M M F M

Kintambo Barumbu Kimbanseke Masina Kimbanseke

Informal sector Tailor Informal sector Tailor Homemaker

M M F F F

Ngaliema

Teacher

M

Makala Kalamu Gombe Nsele Kasa Vubu Barumbu Makala Kasa Vubu Kinshasa Barumbu

Physical therapist Artist Nurse Secretary Homemaker Business woman Teacher Home maker Humanitarian worker Public servant

M M F M F F M F M M

assessment of the efficacy of family support efforts, and the resulting data would ensure iterative improvements leading to increased short- and long-term individual and family outcomes. Before conducting a full-scale test of the measure, we thought it was important to conduct an exploratory, qualitative study to better understand if FQOL is a concept that is appropriate/relevant to apply to a Congolese population, if the Beach Center FQOL Scale is an appropriate measure to use in the DRC, and if there are any adjustments to make to the tool before using it in a wider, quantitative test. As such, this article details the results of a series of focus groups that sought to explore Congolese conceptualizations of FQOL and the relevance and applicability of a FQOL measurement tool in a Congolese context. Specifically, our research questions included: (1) How do Congolese families who experience disabilities conceptualize FQOL? (2) How relevant are the five FQOL domains in the Congolese context? and (3) Is the Beach Center FQOL Scale appropriate for measuring Congolese FQOL? Methods We conducted focus groups with 23 participants to gain their perspectives about FQOL in the DRC and the appropriateness of 80

Type of disability of person in the family

Intellectual disability Intellectual disability Intellectual disability Visual impairment Physical disability Visual impairment Multiple disabilities (physical and intellectual) Physical disability Hearing impairment Visual impairment Physical disability Multiple disabilities (intellectual and physical) Multiple disabilities (Physical & hearing impairment) Visual impairment Hearing impairment Multiple disabilities Physical disabilities Physical disabilities Intellectual disabilities Visual impairment Intellectual disabilities Visual impairment Intellectual disability

Relationship with person with disability

Father Mother Mother Brother Brother Mother Brother Father Grandfather Mother Mother Mother Father Brother Family advocate Mother Father Mother Mother Family advocate Sister Father Father

the Beach Center FQOL Scale to measure Congolese FQOL. Before beginning the focus groups, we obtained informed consent from study participants. Participants In July and August of 2015, we conducted four focus groups with parents, caregivers, and other family members of children with disabilities, with no restriction on specific types of disabilities or diagnosis specifications. We recruited participants through an open call from the Association of Centers for People with Disabilities in Central Africa (known by its French acronym, ACHAC). An open call was circulated via phone (both via text messages and voice calls) the week before the focus groups, through the ACHAC network, to key point persons in partner organizations. Twenty-one individuals who identified as having a family member with a disability (regardless of evidence of formal diagnosis, which often does not happen in DRC) and two individuals who were family advocates responded to the call. Table 2 provides detailed information about the focus group participants. Placement into the groups was made primarily based upon availability of participants and, whenever possible, to ensure




representation of both genders of participants and different disabilities (e.g., intellectual, physical, sensory) across each group. Each participant was from a different family, so 21 families were represented. All participants currently lived in the capital city of Kinshasa, represented diverse neighborhoods within the city (often neighborhood gives an indication of higher or lower socioeconomic status in Kinshasa), and had the capacity to read, speak, and understand French. A total of 23 participants (13 male and 10 females) participated in four focus groups. Focus groups had an approximately even gender representation across groups and ranged in size from five to eight persons per group, a size generally recognized as appropriate for diversity of opinions and ample time for discussion among group members (Krueger & Casey, 2009). The majority of participants were parents of a child with a disability, but there were also five siblings, one grandparent, and two people who advocate for families with children with disabilities. Table 2 provides additional details on participants.

audio recordings and transcribed and translated into English any major quotes from the focus group that aligned with the research questions. A Congolese translator fluent in English verified the translation and made small adjustments to the text as presented in this article. Collectively, we organized transcribed data along major themes. We assigned codes created deductively (Creswell, 2013) from the FQOL Scale (e.g., general FQOL, family interaction, parenting, emotional well-being) as well as codes that emerged inductively from the interviews (e.g., poverty).

Focus Groups

Conceptualization of FQOL in a Congolese Context

The first author and a Congolese research assistant conducted the focus groups. Focus groups lasted approximately one hour, ranging from 46 minutes to 87 minutes. Each focus group began with the researcher and research assistant introducing themselves, explaining the study, and procuring informed consent for participation. Next, participants briefly introduced themselves and spoke about the individual in their family who experienced a disability and/or their experience advocating for families impacted by disability. After introductions, the researcher used a protocol to ask focus group questions. The first set of questions on the protocol explored participants’ general understanding and conceptualization of FQOL. We explained that we wanted to understand how they understood the term “FQOL” and asked questions such as, “What does ‘family quality of life’ mean to you?” and “What does the term ‘family quality of life’ bring to mind?” The researcher then explained the five main domains of FQOL on the Beach Center FQOL Scale and asked targeted questions, requesting participants to share how their personal experiences aligned or did not align with each domain. We asked questions such as, “What does family emotional well-being mean to you?” “How important do you think family emotional wellbeing is for family quality of life?” for each domain. We then passed out the French-version Beach Center FQOL Scale to participants and gave them time to review each survey item. Next, we asked participants to identify survey items that are particularly relevant or inappropriate in a Congolese context. We concluded each focus group by asking if participants believed FQOL was an important aspect for understanding the family and disability experience in the DRC, if the Beach Center Scale might be useful in measuring FQOL in the DRC, and if they had any final insight to share related to the FQOL of families impacted by disability in the DRC.

Most focus group participants described FQOL in terms of family well-being or being able to “meet family needs,” “flourish,” or “adapt” in moral, socioeconomical, psychological, or emotional ways. Some respondents noted that FQOL could be understood in terms of parental practice:

Analysis Focus groups were conducted in French and audio recorded with participant permission. The first author listened to the

Findings We detail results related to participants’ perceptions related to the (1) conceptualization of FQOL in a Congolese Context; (2) relevance of the five FQOL domains in a Congolese context; and (3) appropriateness of the Beach Center FQOL Scale to measure FQOL in the DRC.

For me, FQOL is how parents raise their children. So you need to have a way to raise your children. . . . The parent needs to first understand the state of their child, how to raise the child, all the needs of the child. Many respondents noted that FQOL was not a fixed concept, but rather a constantly changing part of a family. Many agreed that FQOL could look different, depending on the family. As one participant stated, FQOL “changes from family to family. One can never generalize because each family has its own way of living that is not necessarily the same, when compared to another family.” Another participant described how the concept of FQOL varies across families based on family needs and perceptions: Each family can have its own ambitions because it depends on that family’s conception of how things could be better. To live better, to resolve problems, what the family needs. It is the combination of those things that creates the level of the quality of life for that family. . .Each family has its own basic elements upon which it can judge its own quality of life. Participants noted that FQOL can depend on resources (primarily financial), the specific members in the family, the environment in which the family lives, the roles taken by the family members, and the parents’ education level. One participant noted that families adapt differently in a given situation and gave the example of an illness in the family. He explained that some families might directly seek healing from traditional sources (e.g., plants, healers), whereas others turn directly to more “modern” 81




forms of medicine for care (e.g., medical treatment from doctors). Across the focus groups, participants described FQOL in terms of “solving problems.” Relevance of the Five FQOL Domains in the Congolese Context Participants discussed their understanding of the five domains of FQOL included on the Beach Center FQOL Scale. Family interaction. Most participants agreed that family interaction was an important aspect of FQOL in the DRC. One participant remarked, “If there is peace in the family, if everyone gets along well, then there is FQOL. If there is not [peace], there is trouble.” Another described the importance of positive family interactions in relation to other family circumstances, such as financial means. I imagine that there are families who can feed their children well and send them to school, but, if there is no harmony, it would be difficult to provide a good quality of life to the children. Likewise, another mother discussed how loving family interactions were more important than hunger. You could cook rice for your children, but some of the children have gone out and haven’t yet returned to the house. But, if we live with love for one another, we could say “two still haven’t come home, share.” We put aside their meal and we also have something to eat. But if there isn’t that cooperation, no love, we divide the food among who is home and eat. When the children who were out return home, and they see that we have eaten without them, that can create turmoil; [the children returning home might say] “why didn’t you keep some for us?”, [the family might say] “no, there wasn’t much there” [the children returning home might say] “even if there wasn’t much, you should have shared!” But, if there is love in the family, we can be more disciplined to share.

Parenting. When participants were asked to explore the FQOL domain of parenting, they affirmed that this was a crucial component of their own FQOL. Participants indicated that parenting was highly impacted by the extreme levels of poverty experienced in the DRC. For example, one father noted that he lives on a subsistence basis and often does not come home until he has found enough money to feed the family for the day. As a result, he often left early in the morning and returned late at night, leaving him feeling unable to appropriately parent his children, “If I am never there, how will I educate my child?” Another participant referred to Maslow’s hierarchy of needs when discussing parental practice in his own home. 82

Here in the DRC, the base [of Maslow’s pyramid] is already a problem because people can’t find a way to eat. We eat, but just barely. To eat is a luxury. To eat one time per day is difficult. Every Congolese father, when he leaves in the morning, he worries “what will we eat?”. . . When the base of the pyramid isn’t met, it is impossible to respond to any other need. . . . But, every parent makes an effort to raise the children that God has given them. And, when we are able, in spite of the difficulties, we make an effort to ensure that we raise our children well. Similarly, another parent noted that, even for families who are struggling to make ends meet, they still can “raise their children to be useful in society.” He continued by stating that, although it can be “difficult” living in the DRC, “little by little and by the grace of God we are raising our children.” Emotional well-being. When discussing the domain of emotional well-being, participants noted that this was often tied to FQOL in the DRC, particularly in light of the stress that they face when trying to take care of their children with disabilities, “When you have a child with a disability and you don’t know how to take care of the child, it is really stressful for the whole family.” A participant also discussed the stigma that families of people with disabilities often experience, “if you look at the community, they treat you like this, the child like that [mistreat you and your child], and the family is already emotionally affected . . . and people start to gossip about you.” This stigma is often linked to ideas of sorcery and witchcraft, as one participant demonstrated how people in her community assumed she was “seeking money [through the occult]” and that she “sacrificed” her child to the occult because her child had a disability. Several families noted that, as parents of children with disabilities, they often felt isolated and needed to proactively take steps to ensure their emotional well-being. Physical and material well-being. Families noted the important linkages of the domain of physical and material well-being with their quality of life, indicating that full access to well-being in this domain was made impossible by the costs of medical care, material items, and transportation. One mother exclaimed, “the cost of taking care of the child weighs heavily on you [as a parent].” Another participant also discussed the interrelated nature of physical and material well-being for her family: . . .I need to find a means to get him medical care, to treat him. If I can’t find enough money to buy the medication that he needs to reduce the seizures . . . you see, at the moment when you don’t have money, everyone is consumed by the situation . . . and stressed. Another family member noted his desperation in meeting healthcare needs, “If you aren’t really resourceful [in finding ways to meet healthcare needs], you risk abandoning these children. But, because these are the children that God gave us, we need to deal with it because these are children just like any other.”




Disability-specific support. Finally, participants reported that disability-specific support was relevant in the DRC and highlighted a lack of available disability support infrastructure. For example, participants noted that when wheelchairs are available, they are often not appropriately sized. Further, the minimal disabilityspecific supports that do exist in the DRC are often too expensive for most families to access, “To find disability-specific services you need to be rich.” Appropriateness of the Beach Center FQOL Scale to Measure FQOL in the DRC Participants noted that measuring FQOL among families with members who have disabilities in the DRC could help in holding the government accountable for providing necessary services, ensuring that services are appropriate for families, and identifying ways to improve FQOL. Every participant across all focus groups agreed that the Beach Center FQOL Scale was a useful tool to measure FQOL in the DRC. One participant’s statement encapsulates the general agreement of the appropriateness of the Scale in the DRC, “Even if the way of living [in North America and the DRC] is different, it is the same issues. Questions of stress- that’s everywhere. Support, again the same. So, these questions are worthwhile to ask here in the DRC.” Another participant discussed how the domains of FQOL represented in the Beach Center Scale are interrelated and representative of her experiences in the DRC: The physical [domain of FQOL] also influences the emotional [domain]. When my child has a seizure in the middle of the night, he wakes up everyone . . . everyone is emotionally impacted. . . . So we are all stressed. Are we going to find the money to get him the medication he needs? It confines us physically, emotionally, even socially. The only exception to general acceptance of each questionnaire item came from one focus group, where all participants agreed that a question about receiving dental care was not useful to ask in the DRC, “Even those who eat well - those who eat two times, three times per day - they won’t go to see a dentist. We don’t have that concern; we have other things to do.” Not one person in the seven-person focus group had ever been to the dentist. Further, participants identified items that could be added to the Scale, including: “My family eats at least one time per day,” “My family has health insurance,” and “My family has the means to send all children to school.” As a parting remark, one focus group participant noted that he appreciated that the Beach Center FQOL Scale acknowledged that in order to best support a child with a disability, the family must also be supported: What I liked is that it [the Scale] takes into consideration that family quality of life can have an impact on the individual child with the disability. I mean, it acknowledges that if a family’s quality of life is low, it could influence the child because he is in that family. . . .

So, when we try to help the child with a disability [meet individual needs] without improving family quality of life as a whole, we are already failing. After this meeting [the focus group] even my way of seeing things has changed because I understand now that we often reflect on disability issues differently and that is perhaps why we are not totally successful in educating children with disabilities among us. Often we look too closely at the individual child and try to solve his problems, but if [we don’t look at] the whole family . . . that doesn’t work. And that is why I would say it is very, very, very important to evaluate family quality of life to help the child with a disability. It’s marvelous to think that way.

Discussion The findings from these focus groups provide strong rationale for further testing and use of the Beach Center FQOL Scale in the DRC. The findings of this study reflect the global literature on FQOL and the application of the Beach Center FQOL Scale in contexts outside of the United States. For example, participants in this study identified FQOL as a dynamic and subjective concept. This is congruent with the original Beach Center definition of FQOL (Zuna et al., 2010). Moreover, participants in this study indicated that FQOL can be impacted both by family and individual characteristics, which is also consistent with the global literature (Chiu et al., 2013). Our findings also complement FQOL literature, in that the family unit factor of poverty was one of the most consistent themes that emerged from participant responses across all focus groups and within all FQOL domains. Research indicates that poverty negatively impacts FQOL, particularly as it relates to health, productivity, physical environment, emotional well-being, and family interaction (Hu, Turnbull, Summers, & Wang, 2015; Park, Turnbull, & Turnbull, 2002). In the DRC, poverty has an impact on national and regional infrastructure (for physical/material well-being and disability-specific support), as well as individual ability to access any available resources. Disability-specific services often do not exist in the DRC, and if they do exist, they are too expensive for most families to access. For example, there is minimal access to sign language interpreters, occupational therapists, or speech language therapists even in the urban centers because training for these professions does not currently exist in the DRC. This difference in service infrastructure may suggest necessary item revision. Participants noted how poverty can impact their satisfaction with parenting (e.g., having to work 20 hours a day for basic daily survival makes it difficult to spend any time with the children) and that poverty could also have an impact on their emotional well-being due to stress. This finding implicates that considerations of poverty may have significant impact on conceptualization and measurement of FQOL in the DRC. When FQOL was validated in China, respondents also indicated that dental care was a less important and potentially irrelevant indicator of FQOL and the item “getting dental care” was revised as “getting regular medical check-ups” (Hu et al., 2011). 83




The second major theme that emerged from this study is family resilience. FQOL literature indicates that families have often been noted to demonstrate resilience when they are competent to perform core family functions including membership and family formation, economic support, nurturance, education, socialization, and protection of vulnerable members, despite facing adversity (Patterson, 2002). Others have argued that rather than focusing on theories of stress and coping, resilience should be considered, in line with ecocultural theory, as having a sustainable daily routine that is viable (i.e., fitted to the local ecology and family resource base) and congruent with the family’s values and goals and with the needs, interests, and competencies of family members (McConnell & Savage, 2015; Weisner, 2007, 2009). Families in this study generally conceptualized FQOL as families identifying and having the resources to resolve their own needs. This idea of resourcefulness and ingenuity in the absence of ubiquitous state support is a common thread of discussions of social life and community experience in the DRC. This sense of resourcefulness in the DRC is called “la debrouille” which is derived from the French term “se debrouiller” and could be translated to mean “to find a way” or “to use one’s own means.” This notion of “la debrouille” is a way Congolese citizens cope with challenging or adverse conditions and is a theme that dominates survival discourse in the DRC (MacGaffey, 1986; Trefon, 2004; Wells, Burman, Montgomery, & Watson, 2014). A culture of “la debrouille” historically has encouraged Congolese to be resourceful to “get by” and meet their own needs, with past Congolese leaders (e.g., Mobutu) often encouraging Congolese to engage in “la debrouille” to make up for government inability to meet citizen needs (Trefon, 2004). This ingrained, and often necessary cultural norm for survival has strong linkages with concepts of “resilience” within the family and disability literature, and indicates that resilience in the DRC might benefit from further exploration. This finding has implications for additions to the Beach Center FQOL Scale that target the importance of resilience. A number of participants also referenced faith and, in particular, God. Seeking spiritual understanding around family experiences of disability, linked to searching for meaning and explanations, may help individuals to gain or reestablish a sense of control within one’s environment (Poston & Turnbull, 2004; Taylor, Lichtman, & Wood, 1984). Thus, spiritual explanations or understanding of disability may further indicate that Congolese family members are displaying behavior that is aligned with positive coping and adaptation skills (Aldersey, 2012; Summers, Behr, & Turnbull, 1989). This finding has implications for FQOL research to further explore influence of spirituality on Congolese families’ FQOL. Limitations This paper is not without limitations. First, because of the first author’s limited fluency in Lingala and the availability of a validated and translated FQOL scale in this language, she needed to conduct focus groups in French. Although French is the official language of the government, Lingala is the language commonly spoken in homes and in the community in Kinshasa. Those who are able to speak French at an appropriate level in 84

Kinshasa have generally had more years of education than those who cannot. Thus, because this focus group was limited to those who could read, write, and speak French fluently, it is highly likely that they captured opinions of a more educated segment of the population. It may be argued that some of the reflections in the findings represent relevant issues of family life in DRC, irrespective of the presence of a person with a disability. Although we believe that the presence of a child with a disability can often further intensify family issues (e.g., increased need to pay for disability-related services can increase financial burden or stress on the family and lead to decreased FQOL), future research should seek to scientifically evaluate experiences of FQOL among families with and without members with disabilities to better understand the impact of disability on FQOL. Additionally, because all focus groups were conducted only in Kinshasa, it is highly unlikely that the focus groups adequately captured the incredible diversity of experience of a country the size of Western Europe. The intention of this study was to begin to assess the relevance of the FQOL scale in urban DRC by starting with focus groups in the main urban center, Kinshasa. Future studies might begin to expand understanding of FQOL in locations outside of this city. Future Directions The DRC can use FQOL Scale outcomes to address barriers, triage support efforts, and identify successes in national family and disability support. The French-version FQOL Scale, after being adapted culturally, has the potential to be used both in practice and research. For example, the DRC is a target country for many international development programs, including those of Canada and the United States, with people with disabilities and their families (targeted “vulnerable” populations) uniquely poised to gain increased support through aid funding. Recently, governments, aid agencies, and academics have recognized a need for improved accountability for outcomes of support provided through international aid programs (Wenar, 2006). A validated FQOL measure will provide such accountability to these aid agencies and, therefore, will lay the foundation for future large, international development projects. Moreover, service providers can use the FQOL scale to assess family status and evaluate if services are meeting family needs. Finally, researchers may use this scale as a measure of family outcomes in the DRC. Conclusion This study explored if the concept of FQOL is likely to be applicable to understanding family experience and outcomes in the DRC. Findings from this study indicate that it would be appropriate to attempt to test and validate the Beach Center FQOL Scale to study FQOL in the DRC. Responses also indicated that measurement of FQOL might best be complemented with measurements of poverty, family resilience, and spirituality to more accurately capture family experience in the DRC. With the September 2015 accession of the United Nations Convention on the Rights of Persons with Disabilities, the DRC government is taking important steps to recognize and support people with




disabilities and their families. Specifically, Article 31 in the Convention on the Rights of Persons with Disabilities has indicated that the state parties are responsible to collect and report statistics on disability-related issues. In light of increased recognition and promises of support, there is a need for mechanisms of monitoring and evaluating the appropriateness and adequacy of such support. Yet, before we are able to answer questions of service adequacy on family outcomes, we need culturally-relevant measures designed to assess them. This study was the first step in this process. References Abedi, M. R., & Vostanis, P. (2010). Evaluation of quality of life therapy for parents of children with obsessive-compulsive disorders in Iran. European Children and Adolescent Psychiatry, 19, 605–613. Aldersey, H. M. (2012). Family perceptions of intellectual disability: Understanding and support in Dar es Salaam. African Journal of Disability 1(1), Art. #32, 12 pages. http://dx.doi.org/10.4102/ ajod. v1i1.32. Aldersey, H. M. (2013). Intellectual and developmental disabilities in Kinshasa, DRC: Personhood and support. Unpublished dissertation. Lawrence: University of Kansas. Aldersey, H. M., Turnbull, H. R., & Turnbull, A. P. (2016). Family support and self-help in intellectual and developmental disabilities in Kinshasa, Democratic Republic of the Congo. Journal of Policy and Practice in Intellectual Disabilities, 13(1), 23–32. Balcells-Balcells, A., Gine, C., Guardia-Olmos, J., & Summers, J. A. (2011). Family quality of life: Adaptation to Spanish population of several family support questionnaires. Journal of Intellectual Disability Research, 55, 1151–1163. Bronfenbrenner, U. (1986). Ecology of the family as a context for human development: Research perspectives. Developmental Psychology, 22, 723–742. Chiu, C., Kyzar, K., Zuna, N., Turnbull, A., Summers, J. A., & Gomez, V. A. (2013). Family quality of life. In M. L. Wehmeyer (Ed.), Oxford handbook of positive psychology and disability. Oxford: Oxford University Press. Creswell, J. W. (2013). Research design: Qualitative, quantitative, and mixed methods approaches (4th ed.). Thousand Oaks: Sage. Dixon, R., and Reddacliff, C. (2001). Family contribution to the vocational lives of vocationally competent young adults with intellectual disabilities. International Journal of Disability, Development and Education, 4, 193–206. Dunst, C. J., & Bruder, M. B. (2002). Valued outcomes of service coordination, early intervention, and natural environments. Exceptional Children, 68, 361–375. Feldman, M. A., & Werner, S. (2002). Collateral effects of behavioral parent training on families of children with developmental disabilities and behavior disorders. Behavior Interventions, 17, 75–83. Hoffman, L., Marquis, J., Poston, D., Summers, J. A., & Turnbull, A. (2006). Assessing family outcomes: Psychometric evaluation of the beach center family quality of life scale. Journal of Marriage and Family, 68, 1069–1083. Hu, X., Summers, J. A., Turnbull, A., & Zuna, N. (2011). The quantitative measurement of family quality of life: A review of available instruments. Journal of Intellectual Disability Research, 55, 1098–1114. Hu, X., Turnbull, A., Summers, J. A., & Wang, M. (2015). Needs of Chinese families with children with developmental disabilities: A qualitative inquiry. Journal of Policy and Practice in Intellectual Disabilities, 12, 64–73.

Krueger, R. A., & Casey, M. A. (2009). Focus groups: A practical guide for applied research (4th ed.). Thousand Oaks, CA: Sage. Kyzar, K. B., Turnbull, A. P., Summers, J. A., & Gomez, V. A. (2012). The relationship of family support to family outcomes: A synthesis of key findings from research on severe disability. Research and Practice for Persons with Severe Disabilities, 37, 31–44. Lindstrom, L., Doren, B., & Miesch, J. (2011). Waging a living: Career development and long-term employment outcomes for young adults with disabilities. Council for Exceptional Children, 77, 423–434. Lobe, P. O., & Mubaya Kiwele Kya Bantu, F. (2013). Republique Democratique du Congo. African Disability Rights Yearbook, 1, 291– 306. MacGaffey, W. (1986). Religion and society in Central Africa: The BaKongo of lower Zaire. Chicago: University of Chicago Press. Mannan, H., Summers, J. A., Turnbull, A. P., & Poston, D. J. (2006). A review of outcome measures in early childhood programs. Journal of Policy and Practice in Intellectual Disabilities, 3, 219–228. McConnell, D., & Savage, A. (2015). Stress and resilience among families caring for children with intellectual disability: Expanding the research agenda. Current Developmental Disorder Reports, 2(2), 100–109. Meral, B. F., Cavkaytar, A., Turnbull, A. P., & Wang, M. (2013). Family quality of life of Turkish families who have children with intellectual disabilities and autism. Research and Practice for Persons with Severe Disabilities, 38, 233–246. Mukau Ebwel, J., Roeyers, H., & Magerotte, G. (2013). Approches educatives aupre`s des enfants presentant de l’autisme en Republique Democratique du Congo. Revue Francophone De La De ficience Intellectuelle, 22, 69–85. National Disability Rights Network. (2011). Segregated and exploited: A call to action. Retrieved from http://www.ndrn.org/images/Documents/ Resources/Publications/Reports/Segregated-and-Exploited.pdf Park, J., Hoffman, L., Marquis, J., Turnbull, A. P., Poston, D., Mannan, H., . . . Nelson L. L. (2003). Toward assessing family outcomes of services delivery: Validation of a family quality of life survey. Journal of Intellectual Disability Research, 47, 367–384. Park, J., Turnbull, A. P., & Turnbull, H. R. (2002). Impacts of poverty on quality of life of families of children with disabilities. Exceptional Children, 68(2), 151–170. Patterson, J. M (2002). Understanding family resilience. Journal of Clinical Psychology, 58(3), 233–246. Poston, D., Turnbull, A., Park, J., Mannan, H., Marquis, J., & Wang, M. (2003). Family quality of life: A qualitative inquiry. Mental Retardation, 41, 313–328. ( Poston, D. J., & Turnbull, A. P. (2004). Role of spirituality and religion in family quality of life for families of children with disabilities. Education and Training in Developmental Disabilities, 39, 95–108. Ranard, D. A. (2013). Refugees from the Democratic Republic of the Congo. Cultural Orientation Resource Center. Retrieved from http:// worldrelief.org/document.doc?id51496 Rivard, M., Mercier, C., Mestari, Z., Terroux, A., Mello, C., & Begin, J. (in press). Assessing Quality of Life in families with a young child with autism spectrum disorder: Psychometric evaluation of a Quebec French version of the Beach Center Scale. American Journal on Intellectual and Developmental Disability. Rupp, K., & Ressler, S. (2009). Family caregiving and employment among parents of children with disabilities on SSI. Journal of Vocational Rehabilitation, 30, 153–175. Samuel, P. S., Rillotta, F., & Brown, I. (2012). The development of family quality of life concepts and measures. Journal of Intellectual Disability Research, 56, 1–16. Schalock, R. L., & Verdugo-Alonso, M. A. (2002). Handbook on quality of life for human service practitioners. Washington, DC: American Association on Mental Retardation. 85




Soresi, S., Nota, L., & Ferrari, L. (2007). Considerations on supports that can increase the quality of life of parents of children with disabilities. Journal of Policy and Practice in Intellectual Disabilities, 4, 248–251. Summers, J. A., Behr, S. K., & Turnbull, A. P. (1989). Positive adaptation and coping strengths of families that have children with disabilities. In G. H. S. Singer & L. K. Irvin (Eds.), Support for caregiving families: Enabling positive adaptation to disability (pp. 27–40). Baltimore: Paul H. Brookes. Taylor, S. E., Lichtman, R. R., & Wood, J. V. (1984). Attributions, beliefs about control, and adjustment to breast cancer. Journal of Personality and Social Psychology, 46, 489–502. Trefon, T. (2004). Reinventing order in the Congo: How people respond to state failure in Kinshasa. London: Zed Books. UNDP. (2014). DRC. Human Development Report. Retrieved from http:// hdr.undp.org/sites/all/themes/hdr_theme/country-notes/COD.pdf United Nations. (2016). Convention on the Rights of Persons with Disabilities. Status as at 1-4-2016, 9:54 EDT. Retrieved from https:// treaties.un.org/Pages/ViewDetails.aspx?src5IND&mtdsg_no5IV-15& chapter54&lang5en on April 1, 2016. Verdugo, M. A., Cordoba, L., & Gomez, J. (2005). Spanish adaptation and validation of the Family Quality of Life survey. Journal of Intellectual Disability Research, 49, 794–798.

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Wang, M., & Kober, R. (2011). Embracing an era of rising family quality of life research. Journal of Intellectual Disability Research, 55, 1093–1097. Watchiba, D. (2016). Evaluation systemique de la politique publique de lutte contre le VIH et le SIDA en RDC. Unpublished doctoral dissertation. University of Kinshasa. Weisner, T. S. (2007). Well-being, chaos, and culture: Sustaining a meaningful daily routine. In G. W. Evans & T. D. Wachs (Eds.), Chaos and its influence on children’s development: An ecological perspective (pp. 211–224). Washington, DC: American Psychological Association. Weisner, T. S. (2009). Well-being and sustainability of the daily routine of life. In G. Mathews & C. Izquierdo (Eds.), Pursuits of happiness: Well-being in anthropological perspective (pp. 228–247). New York: Berghahn Press. Wells, K., Burman, E., Montgomery, H., & Watson, A. (2014). Childhood, youth and violence in global contexts: Research and practice in dialogue. New York: Palgrave Macmillan. Wenar, L. (2006). Accountability in International Development Aid. Ethics & International Affairs, 20, 1–23. Zuna, N., Summers, J. A., Turnbull, A. P., Hu, X., & Xu, S. (2010). Theorizing about family quality of life. In R. Kober (Ed.), Enhancing the quality of life of people with intellectual disability: From theory to practice (pp. 241–278). Dordrecht: Springer.